Today was just a pretty good day. I'd call it wonderful, but we are still stuck in ICU land with no certainty of a release date. It's closer though. Today we got rid of one more monitor. The oxygen saturation monitor. Ollie now only has a heart monitor and respiration monitor on. Less wires!
He still has a central line that runs up his right side from his ankle to his inferior vena cava (that big vein in your gut, a little higher than belly button level) So, his right foot is still strapped to a splint and immobile. It has finally gotten significantly smaller...the swelling seems to be near gone. He has dropped to 8lbs 10oz...only 4oz up from his birth weight, but it's okay, it's all water loss...very good stuff. He is slowly weaning down off the IV nutrition and onto solid breastmilk. It's still a tube feed from his nose down to his tummy.
He is weaning down off his steroids which will take 4 days. As he weans down, his blood pressure is going down as well...which is a real good thing. It means his hormones are able to regulate that with no help. So he won't need BP or hormone medication. He will be able to eventually come home on just the phenol barbatol.
I got the green light from a doctor to allow him to self lead in latching on/feeding if he wants to. So he gets lots of mommy cuddle time, skin to skin. It's up to him to bob around and find and root and initiate. If you try to force it, they can get aversions and not want to feed. It has to do with the tubes that have been down his throat without his permission. He gets to sign his own consent to feed form so to speak...Unfortunately, I must let off a hormone that is the equivalent to a horse tranquilizer as the boys just knocks out. If only my boobs had that effect on other people...*grin* He did nuzzle around and got a little suction. I think he's just getting comfy with the idea of being in control of his own mouth and no one forcing anything on him, including a pacifier or a boobie.
Anyway, he did a lot of resting today, and that's okay. It can be frustrating as a parent who so wants to bring the family together asap. I leave home and Ryan cries, I leave the hospital and Ollie cries. I cannot express how torn in half my heart is...well it's like torn in 4 or 5 or more pieces, but you get the point. He is still recovering from a huge "insult" and I must remember to be patient as he finishes healing his body. I have to make a conscious effort to be grateful. When it begins to feel like a huge taxing sacrifice, it's easy to get frustrated and rushed. I am grateful my boy is alive. I am grateful to see the wires and tubes go, but I thank them, they have kept my son healing and healthy. It's like a slow detachment from an umbilical cord.
Will got to come and hold him for a long time today and talk and bond. Ollie really opened his eyes and met his daddy soul to soul. Will caught his breath a couple times. It's so neat to see first hand that he's really inside there...that our baby is really alive and conscious and there. To see not only eyes but a soul inside of them, is truly the most miraculous feeling. It's like looking for an instant into the eyes, the plans of God. And Ollie just holds your stare and stares right back. It brings goosebumps to the skin. He says hi with his eyes, and total excitement over and over. He's glad to be here as much as we are glad to have him. I can't wait to show him the rest of the world outside that ICU...the only room he has ever seen. It's going to be awesome!
Saturday, May 31, 2008
Friday, May 30, 2008
Progress. Praise. Pictures. My prince!
Still no word from the docs regarding his testing... may have to wait til Monday. No big deal, Ollies not waiting to improve more.
He's completely off oxygen again already. The anaesthesia didn't even phase him. In fact he came back to his room telling the world very loudly how angry he was that he hadn't been fed. He was pretty sure we were all trying to starve him and thought that was a real bad idea. It did however give him the chance to show off his rooting reflexes...he has sucked on both fists, his blankets and sheets, his gown and his nurses neck. He moved on to attempt hickeys on mama's neck and chest. His pacifier has never been sucked so hard, or held in by sucking alone without a finger or something propping it in...until today. He was serious about missing his food.
And...speech happen to come in right after his feed and have a quick chat with me, even though she said she was going to skip todays visit. I told her all about his rooting and such. She said he won't have any visits until Monday, but she is very happy with his progress. He is gagging on the nose tube now also. Which I am told is again, a reflex related to eating. I will not be surprised if he is throwing up all weekend because of this. I did mention it to speech and she said if she comes in tomorrow...which she may as there are a couple kids she's keeping close tabs on, that she will see Ollie again. I sure hope so, because in all honesty I think he's ready to try and feed off a bottle or me. But, she also said that it's really important that he be fully ready and all those muscles and reflexes very very strong. I suppose a couple days of the exercises won't hurt, I just worry he will get used to his food just "appearing" in his tummy with no effort. I don't want to hesitate to long for "strengthening" and have it back fire into laziness. We'll just keep it in prayer over the next 48 hours.
And even more good news...Ollie is in a normal crib now, out of the ICU crib, and he will be moved tonight or early tomorrow into a different room...either C,D,E or F. Remember I said we want him to get bad grades? Well, he IS!! Good good stuff....here's some pics...
In this place we talk of castles and princes, and faraway places that are good and fun, pure and happy. We are not afraid to talk of pink chickens, dragons with metallic wings, cows and bears all living together...
with blue eyed hero princes, who save the day with bravery and strength. Who shout of victory and praise! 
We strive for more, we crave better. 
We learn and seek and love...Til later my friends...there's milk to be fed, and a little hero to be held...a hero free of one more wire, one more tube...and we rock on...
Friday-test day
Okay so keep checking this post, I will add to the length as we get more results back...
First off...Dr. Doomsday is on today. Someone has been praying for him...and it shows. He was polite and actually somewhat positive. He said the EEG showed improvement (duh) but he wasn't specific and said that he doesn't have a written report back for it yet. I think they like to wait for the written portion because then they can not say anything that's not on the report...it's about butt covering.
Ollie is in MRI right now...his anaesthesiologist was a dad of a 5 month old himself and so compassionate and understanding of our concerns. He is using the minimal dose to put Ollie just under the night and not totally out. He was right aligned with us in wanting Ollie off of the air tubes. In fact, Ollies air got pulled..Dr. Doomsday ordered him off all air support, even the tube by his nose. But we know that with the MRI he will come back with the tube back under his nostrils...taped to his cheeks. If he does well this afternoon/evening, they will pull it again later. The anaesthesiologist said he should not have any lasting drowsiness from the MRI. It'll take him 10 minutes to wake up and he should have it out of his system within an hour. So PRAY for no oxygen/breathing set backs.
Ollie also got his mouth tube pulled this morning...since he couldn't have anything in his tummy for the MRI. His nurse knew I wanted the tube moved anyway...so once he's back from MRI we are going to do the tube down his nose to his belly so that his mouth is free to root and feed and have it's own willl.
Dr. Doomsday also specifically requested a verbal report from the MRI people so he could give us an idea of what we are looking at so we don't have to wait all weekend. He said we just have to agree we understand it's word of mouth and totally preliminary and what comes back in the written report may be very different. I can live with that. Ollie obviously still has goose eggs on his head so we are expecting some funky areas in the MRI scan. We are hoping and praying he is not having any current bleeds or anything that will require draining/surgery etc etc. What damage if any is already done, and we just want to progress and work with what we have.
Thanks for the support and prayers today. I did read emails this morning, haven't had time to respond. Probably won't until later tonight as I want to hold Ollie lots and reassure him so he doesn't have setbacks from all his testing these last two days. (Oh, he had another heart scan this morning too...no idea when those results come back...praying the thickening on his heart is going down.)
Love you all...gotta run back to my lil boy, he should be about done with MRI and I wanna be there for him.
(yes mama's I ate lunch with Will -yummy fish-and am drinking lots of water-and slept in til 9am...I'm well rested)
(((hugs to all)))
First off...Dr. Doomsday is on today. Someone has been praying for him...and it shows. He was polite and actually somewhat positive. He said the EEG showed improvement (duh) but he wasn't specific and said that he doesn't have a written report back for it yet. I think they like to wait for the written portion because then they can not say anything that's not on the report...it's about butt covering.
Ollie is in MRI right now...his anaesthesiologist was a dad of a 5 month old himself and so compassionate and understanding of our concerns. He is using the minimal dose to put Ollie just under the night and not totally out. He was right aligned with us in wanting Ollie off of the air tubes. In fact, Ollies air got pulled..Dr. Doomsday ordered him off all air support, even the tube by his nose. But we know that with the MRI he will come back with the tube back under his nostrils...taped to his cheeks. If he does well this afternoon/evening, they will pull it again later. The anaesthesiologist said he should not have any lasting drowsiness from the MRI. It'll take him 10 minutes to wake up and he should have it out of his system within an hour. So PRAY for no oxygen/breathing set backs.
Ollie also got his mouth tube pulled this morning...since he couldn't have anything in his tummy for the MRI. His nurse knew I wanted the tube moved anyway...so once he's back from MRI we are going to do the tube down his nose to his belly so that his mouth is free to root and feed and have it's own willl.
Dr. Doomsday also specifically requested a verbal report from the MRI people so he could give us an idea of what we are looking at so we don't have to wait all weekend. He said we just have to agree we understand it's word of mouth and totally preliminary and what comes back in the written report may be very different. I can live with that. Ollie obviously still has goose eggs on his head so we are expecting some funky areas in the MRI scan. We are hoping and praying he is not having any current bleeds or anything that will require draining/surgery etc etc. What damage if any is already done, and we just want to progress and work with what we have.
Thanks for the support and prayers today. I did read emails this morning, haven't had time to respond. Probably won't until later tonight as I want to hold Ollie lots and reassure him so he doesn't have setbacks from all his testing these last two days. (Oh, he had another heart scan this morning too...no idea when those results come back...praying the thickening on his heart is going down.)
Love you all...gotta run back to my lil boy, he should be about done with MRI and I wanna be there for him.
(yes mama's I ate lunch with Will -yummy fish-and am drinking lots of water-and slept in til 9am...I'm well rested)
(((hugs to all)))
End of the day...day 8
Well, Ollie lost another ounce. No big deal, he has plenty to spare. He is down to 8lbs 11oz. Probably just more of that water/swelling he had going on. His legs are starting to look normal size. I can't believe now when I look at him how swollen he was. He was worse than I was when I was pregnant...and that's saying something.
He had a little spit up tonight. All babies do that. But when your baby is in ICU you over analyze everything. What does it mean that he spit up? Is his feeding tube gagging him again? Did he choke? Was the food to much? Is he not tolerating it? Is he getting sick? The nurse puts her hand on my shoulder and says "no. he just spit up." oh. okay. He just spit up. Oh yeah, babies spit up. We changed his clothes and sheets together as a team, tackling his spaghetti noodle soup of wires and cords as we changed him.
This morning before I left my house, my four year old Ryan comes to me with his newest creation made of large legos...
Ryan: "Mama, mama, mama, mama, look what I made!!!"
Me: "wow, that's a great job Ryan, you did that yourself? Is it a hideout for your Ninja turtles?"
Ryan: "no"
Me: "oh, is it a castle?"
Ryan: "no"
Me: "I know, it's a house."
Ryan: *sigh* "no mom, it's just a wall."
Me: ...
Sometimes, it's just a wall. Sometimes, it's just spit up.
I hope Dr. Korte is the doc there tomorrow. Doctor Doomsday was on tonight so I avoided all Doctor directed questions. Ollie gets test results tomorrow and he has his MRI, which I can accompany him to, right up to the room he'll go in. I'll be chatting with the anesthesiologist first as I don't want him over sedated and put back on the breathing machine. I'm scared of a set back in the breathing department. I most certainly do NOT want Dr. Doomsday giving me test results. With his beautiful bedside manner I may just puke in his lap. He loves to start conversations with words like "don't be happy yet" or "he hasn't escaped death" ...luckily he hasn't started any conversations with me. I have been able to duck his doomsday radar.
Dr. Korte wants the head of Ollies bed tipped up, it helps him digest, and helps the swelling stay away from his head. Not that he's swelling up more, but I do so like it tipped up. He has the same nurse tonight he did last night, and the same day nurse signed up to take him as her assignment tomorrow. She's a little bit loud, but she's really good about talking to him and asking him if she can touch him and thanking him for working with her. I like that alot. He's not just man handled and ignored. I like this whole idea of talking to babies as if they understand you and can chose to listen and participate...because it's true! The nurses are amazed when he gets upset if I lean down and talk to him and tell him what's going on how he calms immediately. He's just scared of the next procedure or poke. The ICU is all he has known. I'm going to have to routinely set off the fire alarm at home so the poor kid feels safe...there are constantly buzzers and alarms and beeps going off.
Ollie shares his room now with two babies that are just over 2 pounds. There is also a set of twins in the room that share a bed. You could fit them both in your purse. They are so tiny and yet they are so strong. I heard a couple days ago about the smallest patient on the floor. He's 14 ounces. Could you imagine? Preterm-I think they said 22 weeks? It's amazing to see these little kids. And the moms show up and tuck them under their shirts and hold them, just like I do Ollie and they drop their mouths open and snore, safe on mama's chest...just like Ollie. Someone mentioned how it's insane that people can get abortions up to 24 weeks pregnant. What a sobering thought in an ICU full of growing babies born before 24 weeks, who are wanted so badly by their parents, and loved so much. They have all the little parts my Ollie does, and the spirit to live and grow and thrive. They are truly miracles, each and every one.
Every day that goes by some amazing thing happens behind those sterile doors. Someone breathes their first unassisted breath. Someones heart beats for 24 hours with no help. Someone feeds of their mama's milk. Someone a mere one pound in size survives heart surgery. Someone sleeps all night without stopping breathing. Someone pees. Someone poops. Someone beats an infection. Someone grows the right amount and finally gets to be the someone who goes home. A staff off 200 nurses, and 6 neonatologists, therapists, social workers, and countless others from xray and scanning technicians to the janitor who comes in as quiet as a mouse every day in sterile uniform and silently mops the floor and wipes down the equipment as she steals a peek at the tiny creatures living in plastic boxes. They all witness the tiniest of giant miracles.
Yes mom and Kaleem, I am going to bed right now. And I did eat dinner. Alfredo noodles and green beans. I drank my water, almost all my tea and took every single one of my vitamins. I'll do my best to sleep in an extra hour and head for the hospital at 9 instead of 8. Thanks for caring about me so much. I love you guys :)
Randi Fay
He had a little spit up tonight. All babies do that. But when your baby is in ICU you over analyze everything. What does it mean that he spit up? Is his feeding tube gagging him again? Did he choke? Was the food to much? Is he not tolerating it? Is he getting sick? The nurse puts her hand on my shoulder and says "no. he just spit up." oh. okay. He just spit up. Oh yeah, babies spit up. We changed his clothes and sheets together as a team, tackling his spaghetti noodle soup of wires and cords as we changed him.
This morning before I left my house, my four year old Ryan comes to me with his newest creation made of large legos...
Ryan: "Mama, mama, mama, mama, look what I made!!!"
Me: "wow, that's a great job Ryan, you did that yourself? Is it a hideout for your Ninja turtles?"
Ryan: "no"
Me: "oh, is it a castle?"
Ryan: "no"
Me: "I know, it's a house."
Ryan: *sigh* "no mom, it's just a wall."
Me: ...
Sometimes, it's just a wall. Sometimes, it's just spit up.
I hope Dr. Korte is the doc there tomorrow. Doctor Doomsday was on tonight so I avoided all Doctor directed questions. Ollie gets test results tomorrow and he has his MRI, which I can accompany him to, right up to the room he'll go in. I'll be chatting with the anesthesiologist first as I don't want him over sedated and put back on the breathing machine. I'm scared of a set back in the breathing department. I most certainly do NOT want Dr. Doomsday giving me test results. With his beautiful bedside manner I may just puke in his lap. He loves to start conversations with words like "don't be happy yet" or "he hasn't escaped death" ...luckily he hasn't started any conversations with me. I have been able to duck his doomsday radar.
Dr. Korte wants the head of Ollies bed tipped up, it helps him digest, and helps the swelling stay away from his head. Not that he's swelling up more, but I do so like it tipped up. He has the same nurse tonight he did last night, and the same day nurse signed up to take him as her assignment tomorrow. She's a little bit loud, but she's really good about talking to him and asking him if she can touch him and thanking him for working with her. I like that alot. He's not just man handled and ignored. I like this whole idea of talking to babies as if they understand you and can chose to listen and participate...because it's true! The nurses are amazed when he gets upset if I lean down and talk to him and tell him what's going on how he calms immediately. He's just scared of the next procedure or poke. The ICU is all he has known. I'm going to have to routinely set off the fire alarm at home so the poor kid feels safe...there are constantly buzzers and alarms and beeps going off.
Ollie shares his room now with two babies that are just over 2 pounds. There is also a set of twins in the room that share a bed. You could fit them both in your purse. They are so tiny and yet they are so strong. I heard a couple days ago about the smallest patient on the floor. He's 14 ounces. Could you imagine? Preterm-I think they said 22 weeks? It's amazing to see these little kids. And the moms show up and tuck them under their shirts and hold them, just like I do Ollie and they drop their mouths open and snore, safe on mama's chest...just like Ollie. Someone mentioned how it's insane that people can get abortions up to 24 weeks pregnant. What a sobering thought in an ICU full of growing babies born before 24 weeks, who are wanted so badly by their parents, and loved so much. They have all the little parts my Ollie does, and the spirit to live and grow and thrive. They are truly miracles, each and every one.
Every day that goes by some amazing thing happens behind those sterile doors. Someone breathes their first unassisted breath. Someones heart beats for 24 hours with no help. Someone feeds of their mama's milk. Someone a mere one pound in size survives heart surgery. Someone sleeps all night without stopping breathing. Someone pees. Someone poops. Someone beats an infection. Someone grows the right amount and finally gets to be the someone who goes home. A staff off 200 nurses, and 6 neonatologists, therapists, social workers, and countless others from xray and scanning technicians to the janitor who comes in as quiet as a mouse every day in sterile uniform and silently mops the floor and wipes down the equipment as she steals a peek at the tiny creatures living in plastic boxes. They all witness the tiniest of giant miracles.
Yes mom and Kaleem, I am going to bed right now. And I did eat dinner. Alfredo noodles and green beans. I drank my water, almost all my tea and took every single one of my vitamins. I'll do my best to sleep in an extra hour and head for the hospital at 9 instead of 8. Thanks for caring about me so much. I love you guys :)
Randi Fay
Thursday, May 29, 2008
Progress not Perfection
Today has progress. That's a good thing. Today Oliver has weaned pretty much down to room air. He still gets it blown up his nose by a candula (fancy word for nose tube). Once he can deal with that and be stable enough, then he can have the nose tube removed. It's taped to his face and tightened behind his head like a pair of goggles. It's irritating.
The feeding tube he has in is making him gag today. Alot. That means that all the little nerves and reflexes in his mouth are waking up and being activated. The feeding tube has to be replaced every seven days. It expires this Saturday. The speech therapist is going to write a request in his chart to have the tube put down his nose into his belly so his mouth is free to work on feeding. If he gets too gaggy before then, they will move it earlier. But the nurse is pushing to have it wait. I am choosing to choose my battles. If he gags and barfs then I guess they will have to move it and clean up baby barf. Their bad.
We are practicing "oral stimulation" every feeding about 15 minutes before his feed-which is every three hours. The nurses aren't so great at keeping up with what the therapists request. So, I do it myself. All the little triggers that cause a baby to root and want to feed are around the lips and cheeks and there's a couple just inside the mouth. We are just gently stimulating those areas so the muscles wake up and build strength. Ollie is responding VERY well. He is also falling in love with his paci.
He really is coming more and more awake and alert. I am wearing a tank top today and held him on my upper chest where there is skin. He was belly down and I had scooted down in the chair so I was more horizontal than vertical. He nuzzled around and grunted and snuggled. Once he settled down a little bit I started talking to him and he opened his eyes and looked for me. He lifted his head off of my chest and searched for my face! His eyes are brighter every day. He is still very bruised and his eyes are bloodshot around the colored part, but I see more and more every day when I look into those eyes. He is starting to believe that life may be worth checking out after all.
His feeds are being increased every third feed by 5ml. His goal is to keep going until he hits 70ml. So, about 2.5 oz. I am making twice that every three hours...so he isn't going to be under fed by any means. His IV fluids/nutrition got turned all the way down to 5. (started at 16)The goal of course is for him to not need the IV stuff and just get all his nutrition from mama's milk. His blood sugar did drop a tad though and they turned the IV back up to 8. Everything is done by lowering the "help" and seeing if he handles it. I like this form of care. I do not like the doctors that believe he can't handle it and just don't test him on anything. It gives him no room to show off. And he likes to show off. They said he would throw up and not tolerate feeds, and he's a moose. He has done nothing more than a hefty burp. They said he'd need to be on oxygen for weeks, and he is about to be totally off of air. He fills his diapers with much joy...no really...he grins when he does it. And his cry grows stronger and louder with each shift change. He lost some weight and is now 8 pounds 15 oz, but, he still had a lot of swelling so that's not bad. His little fingers are now wrinkly and skinny like a newborn should be. His right leg is still pretty swollen because it is splinted and immobile due to the central line that runs up it into the inferior vena cava. (Big fat vein in the belly area).
His temperature goes up and down. It tends to hit 99 here and there. It was 99.5 this morning and they are watching it very closely. I pray he doesn't get infection...which is so common in the hospital. And I don't dare explain or even discuss MRSA...I'm sure you've all heard of it. He's doing so well and an infection would set him back so far.
Right now Ollie is getting his EEG done. We get results tomorrow. This will show if Ollie has signs of brain damage. His MRI on Friday will show what areas have been damaged, as well as if he has any brain bleeds or areas that were damaged by say a stroke. Those results will be in on Monday. We continue daily with speech and physical therapy until he comes home.
I'm tired today. My humor is a little dry. I want to snuggle up with my baby and take a long long nap. But, holding baby and sleeping is not allowed, so I battle my tiredness and snuggle my son while he sleeps in my arms. I do his therapy and change his position and tell him how much I love him and how bad I want him to come home. He tries every day with all he has. I saw some parents this morning, we shared an elevator up to Ollies floor. They had an empty car seat, a camera in hand and grins on their faces. They were going home today. It was a sweet thing to see. Babies do go home from here. I won't be here forever.
I keep dreaming of the day I bring Ollie home. Dreaming of him free of wires and tubes, free of loud beeping and careless voices shouting around him. Free to explore and seek out things around him without being disturbed. I am grateful, don't get me wrong. I know the very things that I can't stand and want him to be free of are keeping him safe and alive. But this scene goes against every maternal instinct in me. Saying goodnight and driving home alone is the absolute worst. And the more alertness he has, makes it harder. I have to leave him while he is awake sometimes now, and that just flat out breaks my heart. I can't do it without leaving the NICU crying. It's so wrong. My heart longs for the day I don't have to say goodbye and leave him in someone elses care. Until then, I take one hour at a time...put one foot in front of the other.
The feeding tube he has in is making him gag today. Alot. That means that all the little nerves and reflexes in his mouth are waking up and being activated. The feeding tube has to be replaced every seven days. It expires this Saturday. The speech therapist is going to write a request in his chart to have the tube put down his nose into his belly so his mouth is free to work on feeding. If he gets too gaggy before then, they will move it earlier. But the nurse is pushing to have it wait. I am choosing to choose my battles. If he gags and barfs then I guess they will have to move it and clean up baby barf. Their bad.
We are practicing "oral stimulation" every feeding about 15 minutes before his feed-which is every three hours. The nurses aren't so great at keeping up with what the therapists request. So, I do it myself. All the little triggers that cause a baby to root and want to feed are around the lips and cheeks and there's a couple just inside the mouth. We are just gently stimulating those areas so the muscles wake up and build strength. Ollie is responding VERY well. He is also falling in love with his paci.
He really is coming more and more awake and alert. I am wearing a tank top today and held him on my upper chest where there is skin. He was belly down and I had scooted down in the chair so I was more horizontal than vertical. He nuzzled around and grunted and snuggled. Once he settled down a little bit I started talking to him and he opened his eyes and looked for me. He lifted his head off of my chest and searched for my face! His eyes are brighter every day. He is still very bruised and his eyes are bloodshot around the colored part, but I see more and more every day when I look into those eyes. He is starting to believe that life may be worth checking out after all.
His feeds are being increased every third feed by 5ml. His goal is to keep going until he hits 70ml. So, about 2.5 oz. I am making twice that every three hours...so he isn't going to be under fed by any means. His IV fluids/nutrition got turned all the way down to 5. (started at 16)The goal of course is for him to not need the IV stuff and just get all his nutrition from mama's milk. His blood sugar did drop a tad though and they turned the IV back up to 8. Everything is done by lowering the "help" and seeing if he handles it. I like this form of care. I do not like the doctors that believe he can't handle it and just don't test him on anything. It gives him no room to show off. And he likes to show off. They said he would throw up and not tolerate feeds, and he's a moose. He has done nothing more than a hefty burp. They said he'd need to be on oxygen for weeks, and he is about to be totally off of air. He fills his diapers with much joy...no really...he grins when he does it. And his cry grows stronger and louder with each shift change. He lost some weight and is now 8 pounds 15 oz, but, he still had a lot of swelling so that's not bad. His little fingers are now wrinkly and skinny like a newborn should be. His right leg is still pretty swollen because it is splinted and immobile due to the central line that runs up it into the inferior vena cava. (Big fat vein in the belly area).
His temperature goes up and down. It tends to hit 99 here and there. It was 99.5 this morning and they are watching it very closely. I pray he doesn't get infection...which is so common in the hospital. And I don't dare explain or even discuss MRSA...I'm sure you've all heard of it. He's doing so well and an infection would set him back so far.
Right now Ollie is getting his EEG done. We get results tomorrow. This will show if Ollie has signs of brain damage. His MRI on Friday will show what areas have been damaged, as well as if he has any brain bleeds or areas that were damaged by say a stroke. Those results will be in on Monday. We continue daily with speech and physical therapy until he comes home.
I'm tired today. My humor is a little dry. I want to snuggle up with my baby and take a long long nap. But, holding baby and sleeping is not allowed, so I battle my tiredness and snuggle my son while he sleeps in my arms. I do his therapy and change his position and tell him how much I love him and how bad I want him to come home. He tries every day with all he has. I saw some parents this morning, we shared an elevator up to Ollies floor. They had an empty car seat, a camera in hand and grins on their faces. They were going home today. It was a sweet thing to see. Babies do go home from here. I won't be here forever.
I keep dreaming of the day I bring Ollie home. Dreaming of him free of wires and tubes, free of loud beeping and careless voices shouting around him. Free to explore and seek out things around him without being disturbed. I am grateful, don't get me wrong. I know the very things that I can't stand and want him to be free of are keeping him safe and alive. But this scene goes against every maternal instinct in me. Saying goodnight and driving home alone is the absolute worst. And the more alertness he has, makes it harder. I have to leave him while he is awake sometimes now, and that just flat out breaks my heart. I can't do it without leaving the NICU crying. It's so wrong. My heart longs for the day I don't have to say goodbye and leave him in someone elses care. Until then, I take one hour at a time...put one foot in front of the other.
Bringer of Peace.
I have abandonment issues. Oh geeze, I always hated people who said that. I always wanted to gag at the whole bleeding heart sob story. The past is the past. You can't change the past. So you move on and let it go. Acuna Matada. Right? Well over the past year and a half-ish, I have learned that the past very much affects the right now. I have had many things to process that have left me at arms length from a few family members.
When things get to hard to process, I shut down. I shut down until I feel pushed to far then I explode, blowing up bridges and leaving gaping nuclear bomb sized gaps. I walk away engulfed in flames and raising both middle fingers. I feel better. But it doesn't fix the issues that I refused to process in the first place. And lo and behold they come back and slap me in the face. Go figure.
I have parenting issues. They are likely related to my abandonment issues, or maybe I'm just codependent. Perhaps I hated my step fathers at one time or another, or completely all together and therefore am afraid of how my husband is a step father to my older boys. Maybe I see his abandonment issues in his family, or how he was raised by his step father and it makes me very paranoid about the treatment to my kids. Maybe I grew up living like it was Disney Land and I am overly sensitive.
Or maybe I over analyze the crap out of every relationship in my life. Likely it's something in between these being real issues and me over analyzing.
But the point of this post is something that hit me pretty hard today...that I keep thinking about. When this crisis hit, none of that mattered. My mom (with whom I share my issues) didn't hesitate to step up. My husband, is not only caring for me so I can care for our son, but he is actually very attentive my other kids. Kids that aren't technically his. He hugs them, and talks gently to them, and it is the most attractive thing I have seen in my life. This whole family had many days that teetered on the edge of crumbling. My mom and I didn't talk for half a year.
Friends of friends and friends of family, strangers from churches I don't even attend, and random angels that roam the hospital floors all have blessed us with so much love and support. I can't even name the people, or the walks of life they come from who all are pulling for the same goal...and that goal is my son. I can't wrap my mind around the hundreds of people literally hundreds who are lifting him up in prayer and in light and love daily.
Then it dawned on me. His name. The one we chose months ago after pondering many. It's Oliver. It's derived from the term Olive branch. The symbol of peace. Here is why they say it's the symbol of peace: Olive trees grow very slowly and take many years to start producing quality fruit. Therefore they can only be grown during times of peace, not during times of war when land is wrecked and there is famine, people don't have time to nurture and grow Olive trees during war.
Our little boy can only be grown in an environment of peace. And he is growing very slowly, and he may take many years to produce quality fruit. Not only has this little boy brought healing and peace to my mother and I, but also to my husband and children. None of that other stuff really matters anymore. That is a miracle. We live in this upside down, totally insane world right now, and yet there is peace. There is love between us all. There is peace with Oliver's growth and fruit, however and whenever that fruit grows. There is acceptance and the freedom to nurture and love. And in all of that is slowly growing and perhaps even beginning to thrive...a little boy named Oliver who's name suits him so well in so many beautiful ways.
May you find peace today as you walk through the journey laid before you...
Oliver, my little bringer of peace. What a peaceful, loving family and home you now have waiting for you. Grow strong my baby tree. Open your branches and grow with all you are, so we can all welcome you home soon.
When things get to hard to process, I shut down. I shut down until I feel pushed to far then I explode, blowing up bridges and leaving gaping nuclear bomb sized gaps. I walk away engulfed in flames and raising both middle fingers. I feel better. But it doesn't fix the issues that I refused to process in the first place. And lo and behold they come back and slap me in the face. Go figure.
I have parenting issues. They are likely related to my abandonment issues, or maybe I'm just codependent. Perhaps I hated my step fathers at one time or another, or completely all together and therefore am afraid of how my husband is a step father to my older boys. Maybe I see his abandonment issues in his family, or how he was raised by his step father and it makes me very paranoid about the treatment to my kids. Maybe I grew up living like it was Disney Land and I am overly sensitive.
Or maybe I over analyze the crap out of every relationship in my life. Likely it's something in between these being real issues and me over analyzing.
But the point of this post is something that hit me pretty hard today...that I keep thinking about. When this crisis hit, none of that mattered. My mom (with whom I share my issues) didn't hesitate to step up. My husband, is not only caring for me so I can care for our son, but he is actually very attentive my other kids. Kids that aren't technically his. He hugs them, and talks gently to them, and it is the most attractive thing I have seen in my life. This whole family had many days that teetered on the edge of crumbling. My mom and I didn't talk for half a year.
Friends of friends and friends of family, strangers from churches I don't even attend, and random angels that roam the hospital floors all have blessed us with so much love and support. I can't even name the people, or the walks of life they come from who all are pulling for the same goal...and that goal is my son. I can't wrap my mind around the hundreds of people literally hundreds who are lifting him up in prayer and in light and love daily.
Then it dawned on me. His name. The one we chose months ago after pondering many. It's Oliver. It's derived from the term Olive branch. The symbol of peace. Here is why they say it's the symbol of peace: Olive trees grow very slowly and take many years to start producing quality fruit. Therefore they can only be grown during times of peace, not during times of war when land is wrecked and there is famine, people don't have time to nurture and grow Olive trees during war.
Our little boy can only be grown in an environment of peace. And he is growing very slowly, and he may take many years to produce quality fruit. Not only has this little boy brought healing and peace to my mother and I, but also to my husband and children. None of that other stuff really matters anymore. That is a miracle. We live in this upside down, totally insane world right now, and yet there is peace. There is love between us all. There is peace with Oliver's growth and fruit, however and whenever that fruit grows. There is acceptance and the freedom to nurture and love. And in all of that is slowly growing and perhaps even beginning to thrive...a little boy named Oliver who's name suits him so well in so many beautiful ways.
May you find peace today as you walk through the journey laid before you...
Oliver, my little bringer of peace. What a peaceful, loving family and home you now have waiting for you. Grow strong my baby tree. Open your branches and grow with all you are, so we can all welcome you home soon.
Wednesday, May 28, 2008
Wednesday the 28th
I woke up this morning frustrated. It was a matter of communication. Nurses told me that things like EEG's would be scheduled and times that I could call to get scheduling matters resolved. We'd call and there was no organization to it all. Thank God Dr. Korte was back on today and we still jive like we did last week. She listens to me and accommodates in spite of the nurses disapproval.
Ollie got his IV pulled out of his arm. He really only needed it for the platelet transfusion and it was driving me nuts that he had a full arm and a full leg totally immobilized. So his arms are free and we can move around now.
He has his IV fluids and lipids (IV nutrition) weaned down to 10 from 16. He is taking 35 ml of milk by his feeding tube now. The goal is 45ml. As his milk goes up, that IV fluid/lipids will go down. Obviously he needs to be totally on breastmilk via breast or bottle for him to go home, so getting him on just milk even via his tube is a huge accomplishment. His blood sugars remain a lovely stable number.
His BP has been climbing a bit. They are monitoring it for now, and he may end up on High BP meds.
He is adjusting to his anti-seizure medication and sure is waking up and looking around today. He is tracking with his eyes, and I can tell he actually can get mama into "focus" and see me. He saw daddy today too, and when Will moved a foot right or left, Ollie would turn his head and follow the voice and shape of dad. It was pretty cool.
His oxygen issue got some assistance today. They put him on a special oxygen that is humidified. It's the same nasal tube as before, but a different oxygen. It's helping because his oxygen is down to 30% instead of 35%. He's been sitting at 35% for two days. Oxygen is another one he has to get totally off of to go home.
He's up to 9 pounds 1 oz.
He is seeing the speech lady every day who is helping work his mouth muscles. She will see him every day and set little goals for us to work on with the hopeful end goal of walking out of here breastfeeding. I'm willing to take him home on breast or bottle. We can always adjust things at home.
He also is seeing the physical therapist daily who gives him his "play time" where he gets to stretch and work his muscles. He just sighs and loves getting his body moved around. It's really sweet.
He got an Xray today because his "central line" which runs up a vein from his ankle to his mid abdomen where there is a HUGE vein-had pulled out about 3 cm. The xray showed still proper placement so no one had to mess with that one.
His EEG got moved to tomorrow at 3 p.m. Dr. K was sweet enough to wait on his phenobarb meds which make him very drowsy until after the EEG. She thinks there is no way it's making him drowsy. That drug doesn't even wear half way off for 96 hours. But she acknowledges that I sit at his bedside day in and out and I see what I see. She never argues with what a parent says they see, wheather she agrees or not. I really admire her for that.
Ollies MRI will be Friday at 1pm. We likely won't get results on that until Monday.
Add to this schedule speech and physical therapy on top of the testing and Ollie needs a secretary!
I'm thankful that he has a couple really good nurses on tonight, and my number one favorite nurse (who is also an alternate head nurse) is in the room caring for another baby. So-he will be taken excellent care of tonight. I can leave a little earlier than 3am and get some extra sleep. I'm aiming for midnight at the latest. Trying really hard to take better care of me in the sleep department. So much to do-so little time. It kills me to be here and not be by his side 24/7. I am here 12-15 hours a day and yet I am actually cribside probably 11-12 hours a day. Between shift changes and me stopping to eat and pump...yeah.
I got to hold him skin to skin again today. For a long time...like 2 hours. The last time we moved him onto my chest, he nuzzled me. Just for a second, he snuggled into me and showed some interest in maybe feeding. It was like 3-5 seconds, but a strong signal that's really good. It reassures me that he really just needs to wake up more. And he is waking up more, a little more each day.
We also got visits from K and H (midwife assistants) and it was sweet and encouraging both for me and Ollie. I can't wait to have everyone over to welcome Ollie home someday. What a sweet ending it will be for us all. And a beautiful beginning to a new chapter in this amazing story of ours.
Also today my friend Kristen had a hard time. Her baby whom was delivered at 25 weeks had to go in for emergency heart surgery. It was very scary, and I was glad to get to be there for her. I caught her crying and got to give her a huge hug and reassure her. We prayed together and talked and her family showed up. Baby Grace pulled through with flying colors and we got to "hurray" together too. She and I were talking today and she just shook her head and said "Randi, how am I going to keep this up for months and months?" She just looked exhausted. I said "you're not. You're going to do it for today. That's all we have. Today. This of all places gives no promise of any tomorrow. But tomorrow, you will get up and you will do tomorrow then." She nodded with tears in her eyes. Today I got to be there for her. Tomorrow she may have to be there for me. Family away from family in a home away from home...all for the love of these tiny little souls that own our hearts.
Ollie got his IV pulled out of his arm. He really only needed it for the platelet transfusion and it was driving me nuts that he had a full arm and a full leg totally immobilized. So his arms are free and we can move around now.
He has his IV fluids and lipids (IV nutrition) weaned down to 10 from 16. He is taking 35 ml of milk by his feeding tube now. The goal is 45ml. As his milk goes up, that IV fluid/lipids will go down. Obviously he needs to be totally on breastmilk via breast or bottle for him to go home, so getting him on just milk even via his tube is a huge accomplishment. His blood sugars remain a lovely stable number.
His BP has been climbing a bit. They are monitoring it for now, and he may end up on High BP meds.
He is adjusting to his anti-seizure medication and sure is waking up and looking around today. He is tracking with his eyes, and I can tell he actually can get mama into "focus" and see me. He saw daddy today too, and when Will moved a foot right or left, Ollie would turn his head and follow the voice and shape of dad. It was pretty cool.
His oxygen issue got some assistance today. They put him on a special oxygen that is humidified. It's the same nasal tube as before, but a different oxygen. It's helping because his oxygen is down to 30% instead of 35%. He's been sitting at 35% for two days. Oxygen is another one he has to get totally off of to go home.
He's up to 9 pounds 1 oz.
He is seeing the speech lady every day who is helping work his mouth muscles. She will see him every day and set little goals for us to work on with the hopeful end goal of walking out of here breastfeeding. I'm willing to take him home on breast or bottle. We can always adjust things at home.
He also is seeing the physical therapist daily who gives him his "play time" where he gets to stretch and work his muscles. He just sighs and loves getting his body moved around. It's really sweet.
He got an Xray today because his "central line" which runs up a vein from his ankle to his mid abdomen where there is a HUGE vein-had pulled out about 3 cm. The xray showed still proper placement so no one had to mess with that one.
His EEG got moved to tomorrow at 3 p.m. Dr. K was sweet enough to wait on his phenobarb meds which make him very drowsy until after the EEG. She thinks there is no way it's making him drowsy. That drug doesn't even wear half way off for 96 hours. But she acknowledges that I sit at his bedside day in and out and I see what I see. She never argues with what a parent says they see, wheather she agrees or not. I really admire her for that.
Ollies MRI will be Friday at 1pm. We likely won't get results on that until Monday.
Add to this schedule speech and physical therapy on top of the testing and Ollie needs a secretary!
I'm thankful that he has a couple really good nurses on tonight, and my number one favorite nurse (who is also an alternate head nurse) is in the room caring for another baby. So-he will be taken excellent care of tonight. I can leave a little earlier than 3am and get some extra sleep. I'm aiming for midnight at the latest. Trying really hard to take better care of me in the sleep department. So much to do-so little time. It kills me to be here and not be by his side 24/7. I am here 12-15 hours a day and yet I am actually cribside probably 11-12 hours a day. Between shift changes and me stopping to eat and pump...yeah.
I got to hold him skin to skin again today. For a long time...like 2 hours. The last time we moved him onto my chest, he nuzzled me. Just for a second, he snuggled into me and showed some interest in maybe feeding. It was like 3-5 seconds, but a strong signal that's really good. It reassures me that he really just needs to wake up more. And he is waking up more, a little more each day.
We also got visits from K and H (midwife assistants) and it was sweet and encouraging both for me and Ollie. I can't wait to have everyone over to welcome Ollie home someday. What a sweet ending it will be for us all. And a beautiful beginning to a new chapter in this amazing story of ours.
Also today my friend Kristen had a hard time. Her baby whom was delivered at 25 weeks had to go in for emergency heart surgery. It was very scary, and I was glad to get to be there for her. I caught her crying and got to give her a huge hug and reassure her. We prayed together and talked and her family showed up. Baby Grace pulled through with flying colors and we got to "hurray" together too. She and I were talking today and she just shook her head and said "Randi, how am I going to keep this up for months and months?" She just looked exhausted. I said "you're not. You're going to do it for today. That's all we have. Today. This of all places gives no promise of any tomorrow. But tomorrow, you will get up and you will do tomorrow then." She nodded with tears in her eyes. Today I got to be there for her. Tomorrow she may have to be there for me. Family away from family in a home away from home...all for the love of these tiny little souls that own our hearts.
Duuude...it's all melting....
I'm starting to lose my mind. I opened my freezer to add to the stock pile that the nurses insist will get used...I see beyond the bottle in my hand for the first time in a week. Dude, there are frozen maxi pads in my freezer. woah. That woulda been nice after birth had I been home. I just had to kinda laugh though. Wonder if the kids saw those while hunting for something to snack on. LOL!
Yeah things are feeling real backwards to me. My husband is carting around hospital grade breastpumps. My birthing ball is now a four year olds play house. I spends my time allotted in chunks dependant on feeding...a machine. Night blends into day. I drive home and to hospital seemingly unaware of the time but all to aware of exhaustion. I never know if someone will be awake when I get home. I keep waiting for things to fall apart-for Will to lose his patients, for the wolf to eat us alive, for someone to starve to death, or a vehicle to run out of gas. But somehow God is one step ahead of all that. I can't tell you day to day how it all works behind the scenes, but it does. A friend who owns a daycare offering free help. People who know the kids schedules offering them rides. The parking garage closed when I leave so I don't have to pay. An angel here and there saying just the right thing, and offering just enough hope to get us through a moment of weakness...okay a few moments...alright!! hours of weakness...cut me some slack...faith takes a while to rebuild.
To add to the backward feelings we have people design a hospital who make it their job to think of the most confusing way to set things up. Let me elaborate: On floor number one, the elevator opens two doors. On floor number two it opens one. Do not get out on the wrong side or you will be lost for a good ten minutes. The coffee shop, gift shop and cafeteria all take cash only. But the one atm in the waiting room doesn't give out cash. There is a change machine, but no payphone. It's like a toilet with no seat. Or a door with no hinges. It makes no sense. Speaking of the cafeteria-nothing is in order. There is literally mustard at one end and ketchup at the other. The creamer is located NO WHERE near the coffee. I kid you not the napkin dispenser is hung at hip height by the exit door. Who the heck thinks of these things? There are real plates and forks...but no place to leave them when dirty. And the eating area looks out onto a patio with tables and chairs and *gasp* sunlight...but there is no doorway out there-unless you know to walk down the hallway totally away from the cafeteria. Do you know how silly you look carrying a tray of food and walking up to the huge looking windows thinking they lead outside? Durh.
Yeah my brains pretty fried. Still feeling lost on many levels. Just choosing not to use the wrong elevator door when I leave. Don't get me started on parking...and who's genius idea it was to fix the freeway this week?
Yeah things are feeling real backwards to me. My husband is carting around hospital grade breastpumps. My birthing ball is now a four year olds play house. I spends my time allotted in chunks dependant on feeding...a machine. Night blends into day. I drive home and to hospital seemingly unaware of the time but all to aware of exhaustion. I never know if someone will be awake when I get home. I keep waiting for things to fall apart-for Will to lose his patients, for the wolf to eat us alive, for someone to starve to death, or a vehicle to run out of gas. But somehow God is one step ahead of all that. I can't tell you day to day how it all works behind the scenes, but it does. A friend who owns a daycare offering free help. People who know the kids schedules offering them rides. The parking garage closed when I leave so I don't have to pay. An angel here and there saying just the right thing, and offering just enough hope to get us through a moment of weakness...okay a few moments...alright!! hours of weakness...cut me some slack...faith takes a while to rebuild.
To add to the backward feelings we have people design a hospital who make it their job to think of the most confusing way to set things up. Let me elaborate: On floor number one, the elevator opens two doors. On floor number two it opens one. Do not get out on the wrong side or you will be lost for a good ten minutes. The coffee shop, gift shop and cafeteria all take cash only. But the one atm in the waiting room doesn't give out cash. There is a change machine, but no payphone. It's like a toilet with no seat. Or a door with no hinges. It makes no sense. Speaking of the cafeteria-nothing is in order. There is literally mustard at one end and ketchup at the other. The creamer is located NO WHERE near the coffee. I kid you not the napkin dispenser is hung at hip height by the exit door. Who the heck thinks of these things? There are real plates and forks...but no place to leave them when dirty. And the eating area looks out onto a patio with tables and chairs and *gasp* sunlight...but there is no doorway out there-unless you know to walk down the hallway totally away from the cafeteria. Do you know how silly you look carrying a tray of food and walking up to the huge looking windows thinking they lead outside? Durh.
Yeah my brains pretty fried. Still feeling lost on many levels. Just choosing not to use the wrong elevator door when I leave. Don't get me started on parking...and who's genius idea it was to fix the freeway this week?
Tuesday, May 27, 2008
Homebirth?
So, it was brought to my attn today that an anti-homebirth website out there has linked to mine-as a consequence of homebirth. It was suggested I password protect my blog. Obviously if you are reading this, it is not password protected. Here is my response...
This will be the only post regarding this subject and judgemental or rude comments for or against will be deleted.
I would however love to discuss my personal reasons for chosing this homebirth or answer any questions by private email only. See link to the left on the homepage.
This blog is not about defending or opposing homebirth. It is about our story-good or bad- just our story for what it is. No matter how you got to this website, I welcome you. I hope you leave here with a little more strength and a little more knowledge and a little more faith! This is about having the faith and strength to pull through one of lifes most difficult situations.
I have been reassured by four different neonatologists as well as a neurologist that there was absolutly nothing I could have done differently during my pregnancy or labor and birth to prevent what happened to my son. I have been told by one neonatologist that it was a good thing I had an all natural homebirth, because of the fact my son was born with no medications in his system for medical staff to have to fight against. I was also told that a hospital birth would have prolonged my labor and delivery and chances are that Oliver would have died before birth.
He arrived in the hands of medical professionals the moment he was born. Midwives are not hippies from the woods with no education that arrive equipped with only a stick to chew on for the pain. They are highly trained. He arrived in the hands of specialists with 8 year degrees in assisting infants in his situation within minutes of birth. I am not against hospital birth. My three other sons were born in the hospital. I am for the right to chose. I have the right to educate myself and make decisions that I believe are best for my family based on what I have learned and what I desire. I have the right and responsibility to take care of my body and my baby 100% for myself, and that is what I did. Anyone else has equal rights, and I do not judge their decisions no matter what the result.
Of the 62 infants in ICU where we are, ONE is a homebirth baby. One. Mine. Of the hundreds of infants that come through this ICU a year-only 8 are homebirth. Eight. According to the doctor who created this NICU himself. I stand by my choice. It was right for me. I thought about it, I discussed it, I questioned it once as any mom would, and I will never question it again.
I do not regret my homebirth. It was beautiful. And if I have more children, I will not hesitate to chose the same exact care providers. They gave me the birth of my dreams, and saved my childs life. Why would I ever chose anything less?
I would like to end in this: This is Olivers story. This is our story. It includes a homebirth-but it is not all about a homebirth. It's just part of the story. If there must be an underlying message in this blog it will be this:
Faith, hope, and love. And above all else: love never fails. Today I have faith, today I have hope. I do not doubt the decisions the Lord guided me to. I can see firsthand how my choices made a difference in my sons life and still are. Oliver is one loved little boy-and I want for him what any mama wants-nothing but the best! And I believe he has always had that...
This will be the only post regarding this subject and judgemental or rude comments for or against will be deleted.
I would however love to discuss my personal reasons for chosing this homebirth or answer any questions by private email only. See link to the left on the homepage.
This blog is not about defending or opposing homebirth. It is about our story-good or bad- just our story for what it is. No matter how you got to this website, I welcome you. I hope you leave here with a little more strength and a little more knowledge and a little more faith! This is about having the faith and strength to pull through one of lifes most difficult situations.
I have been reassured by four different neonatologists as well as a neurologist that there was absolutly nothing I could have done differently during my pregnancy or labor and birth to prevent what happened to my son. I have been told by one neonatologist that it was a good thing I had an all natural homebirth, because of the fact my son was born with no medications in his system for medical staff to have to fight against. I was also told that a hospital birth would have prolonged my labor and delivery and chances are that Oliver would have died before birth.
He arrived in the hands of medical professionals the moment he was born. Midwives are not hippies from the woods with no education that arrive equipped with only a stick to chew on for the pain. They are highly trained. He arrived in the hands of specialists with 8 year degrees in assisting infants in his situation within minutes of birth. I am not against hospital birth. My three other sons were born in the hospital. I am for the right to chose. I have the right to educate myself and make decisions that I believe are best for my family based on what I have learned and what I desire. I have the right and responsibility to take care of my body and my baby 100% for myself, and that is what I did. Anyone else has equal rights, and I do not judge their decisions no matter what the result.
Of the 62 infants in ICU where we are, ONE is a homebirth baby. One. Mine. Of the hundreds of infants that come through this ICU a year-only 8 are homebirth. Eight. According to the doctor who created this NICU himself. I stand by my choice. It was right for me. I thought about it, I discussed it, I questioned it once as any mom would, and I will never question it again.
I do not regret my homebirth. It was beautiful. And if I have more children, I will not hesitate to chose the same exact care providers. They gave me the birth of my dreams, and saved my childs life. Why would I ever chose anything less?
I would like to end in this: This is Olivers story. This is our story. It includes a homebirth-but it is not all about a homebirth. It's just part of the story. If there must be an underlying message in this blog it will be this:
Faith, hope, and love. And above all else: love never fails. Today I have faith, today I have hope. I do not doubt the decisions the Lord guided me to. I can see firsthand how my choices made a difference in my sons life and still are. Oliver is one loved little boy-and I want for him what any mama wants-nothing but the best! And I believe he has always had that...
The afternoon chunk
Yeah, time sorta gets split into chunks around here. A couple hours here and there between pumping. I feel like I live more here than there. Day bleeds into night and soon it doesn't even matter. It's hard to make myself take breaks for food, water and bathroom breaks. But I also acknowledge that if I do not take care of myself, I won't make Ollie his milky and I won't be strong enough to stand vigil at his cribside. It helps to pull out the laptop and put out a quick update...
This afternoon Dr. Sosa came in, he's the on call for today since my favorite Ms. Doctor Korte is off again. (the audacity) Had another semi grumpy nurse, but once they realize that they can't shoo me away and I do most of Ollies needs (diaper changes, a paci when fussy) myself, they lighten up. I hate seeing them man handle the babies. For the most part it's pretty sweet, but some of them just go on auto pilot and treat the kids like they are 6 months old and not covered in IV lines and what not-just grabbing legs and whipping diapers off and on. I am grateful to be able to stay by my son's side. Anyway, Dr. Sosa ordered Ollie another blood platelet transfusion. It is so his blood can clot as needed. Platelets come from bone marrow, and apparently Ollies took a big hit and is slow to catch up to speed. Not a big deal...except they had to insert an IV. The first nurse was confident in her ability; poke 1 = couldn't find the vein. *sigh* poke 2 = found the vein! and promptly blew it out. *sigh* I'm glad I was in the room (not at bedside because I don't want to be associated with pain) and watching because she may have tried again. Luckily she went and got "the pro" who snapped in the IV line in Ollies other arm in a matter of seconds. I think to myself, why the hell don't they get the pro to do it the first time?
Anyway, so now Ollie has his right leg and right arm completely immobilized. I can't tell you how much it bothers me. A tiny little IV requires a splint down that entire limb. It's so hard to keep his range of motion and joints moving so they don't get stiff. But, he needs the platelets. So, I suck it up and deal with the tubing and wires and splints. Even a diaper pro like me after 3 other boys has a hard time changing him through all the hook ups.
After the IV insert, it was food time. Ollie got to cuddle in my arms and get his feed. We are encouraging sucking alot to strengthen his mouth muscles per the therapists orders. He likes that idea too... paci's are awesome. And with perfect timing my husband showed up to let the other boys see Ollie. Ryan is kinda babied out and declined the visit, but Jacob and Bradley loved it. Bradley sat with us almost 30 minutes, asking questions, rubbing Ollies little head and holding his hand. It was really sweet. I adjusted his position a little bit and he burped at Bradley. When Jacob was visiting, Ollie rolled his eyes around a little and showed those baby blues to his big "bobo." It was really good for the kids to see him being a baby and doing normal baby things. I thanked them for all they are going through so that I can sit and hold their little brother and help him be healthy. Will seems to be more affectionate with the kids than I think I have ever seen him. He's gentle and sweet. He talks to them when they seem weepy or upset. He's steady- It's amazing how this kind of thing can change one to the very core. All the stuff you used to fuss about, really doesn't matter. They are all healthy and thriving and that in itself is a blessing worth counting and respecting.
The Physical therapist came in and did some exercise with Ollie and he even got a little infant massage. He was in heaven!
His feeds are up to 30 ml every three hours and taken over a 30 minute time period. He is still chugging them all down with very little to no residual each time. They are not upping his feedings anymore for now. They are lowering his nutrition IV-it has fats and fluids in it from when he wasn't taking feeds. But now that he gets food, they can lower the IV significantly and eventually wean off it. It feels good to see more progress. He was sleeping very hard tonight in my arms and still had no oxygen drops like he has been the last couple days. No repositioning or having to shut his mouth. I asked the doc what they do about that weird breathing and he said nothing. It's something Ollie has to outgrow. The steriods he is on will help with that, and also with the brain somehow. I still don't have all his meds mastered and understood, but I get it a little more each day.
It's crazy this life in a hospital. You begin to recognize faces-cafeteria workers, janitors, nurses and staff members. You smile at the other moms and families who are in and out of ICU living in, yet not at this hospital. Sometimes their head is down and tears are pouring and you give them their space. Sometimes they smile with victory and you grin back in a silent "Hurrah!" for whatever it is that made progress for them. The brand new moms do the slow shuffle, sore from labor and delivery yet determined to be near their baby's side. I feel more like an old timer now...a little more organized, moving a little faster, figuring out how routines work and what makes life easier.
Its nice to pass my old high school friend each day. Sometimes she's or I are a little discouraged and we talk it out. Sometimes there's victory-like her 25 week old little girl dodging heart surgery...and we hug and rejoice together. It's a whole world you never new existed day to day, week after week, bleeding into months sometimes. You see a guy sleeping on the couch and you think nothing of it. I slept on that couch last week...in the middle of a waiting room with strangers in and out. We all understand. It's a club no one wants to be in, but everyone respects and makes the best out of being a part of. Some of us don't speak English. Some of us are facing bigger struggles than others. Some of us have one child and some have families to juggle. Some are here at night and some during the day. Some of us sleep on couches, and some of us don't sleep at all. Some of us are in sweats and jammies and some come in suits. It doesn't matter. We all are in the same boat. Alone, yet, not alone...and time ticks on...
This afternoon Dr. Sosa came in, he's the on call for today since my favorite Ms. Doctor Korte is off again. (the audacity) Had another semi grumpy nurse, but once they realize that they can't shoo me away and I do most of Ollies needs (diaper changes, a paci when fussy) myself, they lighten up. I hate seeing them man handle the babies. For the most part it's pretty sweet, but some of them just go on auto pilot and treat the kids like they are 6 months old and not covered in IV lines and what not-just grabbing legs and whipping diapers off and on. I am grateful to be able to stay by my son's side. Anyway, Dr. Sosa ordered Ollie another blood platelet transfusion. It is so his blood can clot as needed. Platelets come from bone marrow, and apparently Ollies took a big hit and is slow to catch up to speed. Not a big deal...except they had to insert an IV. The first nurse was confident in her ability; poke 1 = couldn't find the vein. *sigh* poke 2 = found the vein! and promptly blew it out. *sigh* I'm glad I was in the room (not at bedside because I don't want to be associated with pain) and watching because she may have tried again. Luckily she went and got "the pro" who snapped in the IV line in Ollies other arm in a matter of seconds. I think to myself, why the hell don't they get the pro to do it the first time?
Anyway, so now Ollie has his right leg and right arm completely immobilized. I can't tell you how much it bothers me. A tiny little IV requires a splint down that entire limb. It's so hard to keep his range of motion and joints moving so they don't get stiff. But, he needs the platelets. So, I suck it up and deal with the tubing and wires and splints. Even a diaper pro like me after 3 other boys has a hard time changing him through all the hook ups.
After the IV insert, it was food time. Ollie got to cuddle in my arms and get his feed. We are encouraging sucking alot to strengthen his mouth muscles per the therapists orders. He likes that idea too... paci's are awesome. And with perfect timing my husband showed up to let the other boys see Ollie. Ryan is kinda babied out and declined the visit, but Jacob and Bradley loved it. Bradley sat with us almost 30 minutes, asking questions, rubbing Ollies little head and holding his hand. It was really sweet. I adjusted his position a little bit and he burped at Bradley. When Jacob was visiting, Ollie rolled his eyes around a little and showed those baby blues to his big "bobo." It was really good for the kids to see him being a baby and doing normal baby things. I thanked them for all they are going through so that I can sit and hold their little brother and help him be healthy. Will seems to be more affectionate with the kids than I think I have ever seen him. He's gentle and sweet. He talks to them when they seem weepy or upset. He's steady- It's amazing how this kind of thing can change one to the very core. All the stuff you used to fuss about, really doesn't matter. They are all healthy and thriving and that in itself is a blessing worth counting and respecting.
The Physical therapist came in and did some exercise with Ollie and he even got a little infant massage. He was in heaven!
His feeds are up to 30 ml every three hours and taken over a 30 minute time period. He is still chugging them all down with very little to no residual each time. They are not upping his feedings anymore for now. They are lowering his nutrition IV-it has fats and fluids in it from when he wasn't taking feeds. But now that he gets food, they can lower the IV significantly and eventually wean off it. It feels good to see more progress. He was sleeping very hard tonight in my arms and still had no oxygen drops like he has been the last couple days. No repositioning or having to shut his mouth. I asked the doc what they do about that weird breathing and he said nothing. It's something Ollie has to outgrow. The steriods he is on will help with that, and also with the brain somehow. I still don't have all his meds mastered and understood, but I get it a little more each day.
It's crazy this life in a hospital. You begin to recognize faces-cafeteria workers, janitors, nurses and staff members. You smile at the other moms and families who are in and out of ICU living in, yet not at this hospital. Sometimes their head is down and tears are pouring and you give them their space. Sometimes they smile with victory and you grin back in a silent "Hurrah!" for whatever it is that made progress for them. The brand new moms do the slow shuffle, sore from labor and delivery yet determined to be near their baby's side. I feel more like an old timer now...a little more organized, moving a little faster, figuring out how routines work and what makes life easier.
Its nice to pass my old high school friend each day. Sometimes she's or I are a little discouraged and we talk it out. Sometimes there's victory-like her 25 week old little girl dodging heart surgery...and we hug and rejoice together. It's a whole world you never new existed day to day, week after week, bleeding into months sometimes. You see a guy sleeping on the couch and you think nothing of it. I slept on that couch last week...in the middle of a waiting room with strangers in and out. We all understand. It's a club no one wants to be in, but everyone respects and makes the best out of being a part of. Some of us don't speak English. Some of us are facing bigger struggles than others. Some of us have one child and some have families to juggle. Some are here at night and some during the day. Some of us sleep on couches, and some of us don't sleep at all. Some of us are in sweats and jammies and some come in suits. It doesn't matter. We all are in the same boat. Alone, yet, not alone...and time ticks on...
BOOYAH!!!
We have eyes! I got here this morning and after a while of eyebrow working out, we finally cracked those eyes. Inside those little eyelids are a rather bloodshot and tired looking pair of baby blues. They are curious...and as I peeked into the soul of this beautiful little boy that God gave me I started to cry again. He blinks and blinks trying to get them moist and open them further...as each hour goes by and he keeps trying, he is in fact getting them open further and further. I am sure I am a shadowy blur, but he is finding my general direction and not just rolling those eyes around-another good sign as far as "damage" goes.
His daddy came today with a couple prayer warriors from our church in Orangevale and I stood watching through the nursery window as these men with bibles laid hands on my little boy and prayed for him. It made me think how we'd been away from our East Valley Church too long, and Roseville isn't that far. We need to recommit to that. But it blessed me huge to see these guys ask God to continue His work on this little boy. Ollie then took a good peek at daddy-which made him very happy. More people are coming tomorrow to pray with him and it warms my heart. People still care, people are still pulling for our little boy.
He is taking 25ml feeds now, and the last one he took over 30 minutes instead of 45. That means his belly is tolerating the milk, no spit up, no left overs in the belly. He saw the speech therapist today that I had mentioned earlier. She was so so sweet, and so right online with our beliefs about feeding and nursing this little boy. We have started a plan in motion. Ollie was actually able to suck down one ml of breastmilk from a bottle. It's the tiniest amount, but he did not choke. He just gets very tired-and we have to remember he is sedated like crazy from the anti-seizure meds. They are going to check the levels of his meds today and probably make some adjustments. He is encouraged to suck as much as possible on a paci-daily skin to skin with mama...and both of those during feedings if possible. The therapist will see him daily and we will make small goals and continue to work with Ollie until he is feeding on his own.
He's still on 35% oxygen, and has shallow sometimes grunty breathing. Often his oxygen saturation will drop down into the 70% range and set off alarms. We have learned sometimes he just needs to clear his throat and swallow. Often he has opened his mouth and is not getting the oxygen from the tube that's in his nose. We have to close his mouth and make him nose breathe. Yeah, he's like his dad at 2am...mouth wide open, snoring, and shallow breathing. Not sure what they are going to do about that-if he's going to have some sort of respiratory therapy, if he will out grow it or what? Kinda at a stand still on that one.
As the day winds on, I think about tomorrow. Tomorrow is his second EEG. I am nervous. I see so much from him that says he is so normal. I don't want to know what that stupid test says. I don't want to get called into a room and listen to results and opinions, statistics and therapy. I just want to enjoy my baby boy for what he is. I'm too scared of the stupid results to even want to hear them. I don't want to go back to that place of shock and fear of what to do and how to proceed. I feel like I have vaguely adjusted to this life as it is and I don't want to rock the boat.
Tonight at 12:15 my little boy will be one week old. I can't believe at this time last week, my water had been broken an hour and contractions were picking up. I was sitting on my birthing/yoga ball at the foot of my bed. Will was about to walk in the door, and my whole family was home for the night. The midwife had come by and listened to Ollie in womb during a contraction and he was checking out fine. It will be on my mind all night, where I was, where we were this time last week. I have to stay tonight late so I can tell him happy birthday for the first time. He's one week old at 12:15. And today he gave me the present of peeking into his soul...my sweet little boy.
~~~update 3 weeks later~~~
I don't want to forget...sitting in that hospital, watching the three clocks on adjacent walls, all tick down the time to his birth. He awoke at 5 minutes til his birth time, crying. There was pain there. I cried too. The nurses were silent and gave me so much space. Tears rolled silently down my cheeks as I cursed the powers out of my control for this fate we had to walk through together. I clutched my baby so tight and whispered the first line of happy birthday in his ear. I decided the words weren't right for what we were walking through. I stopped. I whispered a different set of words. "I love you. I'm sorry for your pain. I will always be here for you. I wish I could take it away. Please keep fighting. I promise I will always walk by your side through tough times. I will love you always-more than all the stars in the sky." After 15 minutes or so he drifted back into a peaceful slumber. I left him in the hands of the nurses and slowly walked away. I could only put one foot in front of the other. All the way down the hall, down the elevator, down the long corridor and across the parking lot, tears kept streaming from my face. My eyes stayed down until I was safely locked in the truck in the dark parking lot. I sobbed outloud. I wanted to take his pain away more than anything. I wanted to rewind time and not have to walk through this. Knowing none of that was possible, I wanted to heal him as fast as I could so we could go on with life. I sobbed again at the powerlessness. I could do nothing but what I promised him. Love him. And walk through this with him. I went home for about 6 hours sleep and rushed back to be by his side, hoping he hadn't noticed my brief absence...I pray for a happier birthday in the future.
His daddy came today with a couple prayer warriors from our church in Orangevale and I stood watching through the nursery window as these men with bibles laid hands on my little boy and prayed for him. It made me think how we'd been away from our East Valley Church too long, and Roseville isn't that far. We need to recommit to that. But it blessed me huge to see these guys ask God to continue His work on this little boy. Ollie then took a good peek at daddy-which made him very happy. More people are coming tomorrow to pray with him and it warms my heart. People still care, people are still pulling for our little boy.
He is taking 25ml feeds now, and the last one he took over 30 minutes instead of 45. That means his belly is tolerating the milk, no spit up, no left overs in the belly. He saw the speech therapist today that I had mentioned earlier. She was so so sweet, and so right online with our beliefs about feeding and nursing this little boy. We have started a plan in motion. Ollie was actually able to suck down one ml of breastmilk from a bottle. It's the tiniest amount, but he did not choke. He just gets very tired-and we have to remember he is sedated like crazy from the anti-seizure meds. They are going to check the levels of his meds today and probably make some adjustments. He is encouraged to suck as much as possible on a paci-daily skin to skin with mama...and both of those during feedings if possible. The therapist will see him daily and we will make small goals and continue to work with Ollie until he is feeding on his own.
He's still on 35% oxygen, and has shallow sometimes grunty breathing. Often his oxygen saturation will drop down into the 70% range and set off alarms. We have learned sometimes he just needs to clear his throat and swallow. Often he has opened his mouth and is not getting the oxygen from the tube that's in his nose. We have to close his mouth and make him nose breathe. Yeah, he's like his dad at 2am...mouth wide open, snoring, and shallow breathing. Not sure what they are going to do about that-if he's going to have some sort of respiratory therapy, if he will out grow it or what? Kinda at a stand still on that one.
As the day winds on, I think about tomorrow. Tomorrow is his second EEG. I am nervous. I see so much from him that says he is so normal. I don't want to know what that stupid test says. I don't want to get called into a room and listen to results and opinions, statistics and therapy. I just want to enjoy my baby boy for what he is. I'm too scared of the stupid results to even want to hear them. I don't want to go back to that place of shock and fear of what to do and how to proceed. I feel like I have vaguely adjusted to this life as it is and I don't want to rock the boat.
Tonight at 12:15 my little boy will be one week old. I can't believe at this time last week, my water had been broken an hour and contractions were picking up. I was sitting on my birthing/yoga ball at the foot of my bed. Will was about to walk in the door, and my whole family was home for the night. The midwife had come by and listened to Ollie in womb during a contraction and he was checking out fine. It will be on my mind all night, where I was, where we were this time last week. I have to stay tonight late so I can tell him happy birthday for the first time. He's one week old at 12:15. And today he gave me the present of peeking into his soul...my sweet little boy.
~~~update 3 weeks later~~~
I don't want to forget...sitting in that hospital, watching the three clocks on adjacent walls, all tick down the time to his birth. He awoke at 5 minutes til his birth time, crying. There was pain there. I cried too. The nurses were silent and gave me so much space. Tears rolled silently down my cheeks as I cursed the powers out of my control for this fate we had to walk through together. I clutched my baby so tight and whispered the first line of happy birthday in his ear. I decided the words weren't right for what we were walking through. I stopped. I whispered a different set of words. "I love you. I'm sorry for your pain. I will always be here for you. I wish I could take it away. Please keep fighting. I promise I will always walk by your side through tough times. I will love you always-more than all the stars in the sky." After 15 minutes or so he drifted back into a peaceful slumber. I left him in the hands of the nurses and slowly walked away. I could only put one foot in front of the other. All the way down the hall, down the elevator, down the long corridor and across the parking lot, tears kept streaming from my face. My eyes stayed down until I was safely locked in the truck in the dark parking lot. I sobbed outloud. I wanted to take his pain away more than anything. I wanted to rewind time and not have to walk through this. Knowing none of that was possible, I wanted to heal him as fast as I could so we could go on with life. I sobbed again at the powerlessness. I could do nothing but what I promised him. Love him. And walk through this with him. I went home for about 6 hours sleep and rushed back to be by his side, hoping he hadn't noticed my brief absence...I pray for a happier birthday in the future.
Monday, May 26, 2008
PICTURES...just for you!
Ollies room...well Ollies "section"
All his equipment.
Baby...cute baby.
Snuggly...
HANDS!!!
FEET!!!
Baby gown. Thats his feeding tube taped to chin.
Ollie in his own personal tanning bed...
Our first ever skin to skin "kangaroo hold"
I think he likes me. And I like him too. Good night extended family! Til tomorrow :)
Therapist!
I came back from lunch and there was a developmental therapist in there. I guess Dr. Doomsday had grabbed her and asked her to work with Ollie. My heart sank as they told me this. I kept thinking of the nurse yesterday and the day before who had pointed out some of the movements that Ollie was doing that were common in brain injury patients. I have seen the same movements in adults that I have cared for that have Cerebral Palsy. And here was a therapist teaching me how to work with Ollies body...
Her name is Julie. She has blond, super curly hair, and the spirit of an angel. She literally just glows. I told her my fears about Ollies movements and his balled up muscles that bother me, I told her of the people I had seen and cared for, and what the nurses said. She just looked at me. She thought for a moment, and then she said that we have to remember that Ollie is on Phenol Barbatol...a very sedative drug, to prevent his seizures. She explained that as Ollie lays there very sleepy and very still...his muscles are getting no work. What positions he does hold makes him stiff. It's not related to any other condition or injury so far. It's simply due to the medication. He has to have his muscles relaxed and stretched so that when he does get more alert later and does baby things he won't be fighting a stiff body or a preferred position. Wait. She said "does baby things." That means my little boy will do baby things. She said he will pull his hands to his mouth, and suckle them, and he will play with his hands and his mouth and that all of his learning and happiness in the world begins with his hands and his mouth. She reminds me of what K (midwife assistant) has been telling me about my baby. She is saying the same things. It gives me a little hope. And Ollie is acting like he just had a professional massage. He's stretching out and doing little happy grunts. He's such a love.
Her name is Julie. She has blond, super curly hair, and the spirit of an angel. She literally just glows. I told her my fears about Ollies movements and his balled up muscles that bother me, I told her of the people I had seen and cared for, and what the nurses said. She just looked at me. She thought for a moment, and then she said that we have to remember that Ollie is on Phenol Barbatol...a very sedative drug, to prevent his seizures. She explained that as Ollie lays there very sleepy and very still...his muscles are getting no work. What positions he does hold makes him stiff. It's not related to any other condition or injury so far. It's simply due to the medication. He has to have his muscles relaxed and stretched so that when he does get more alert later and does baby things he won't be fighting a stiff body or a preferred position. Wait. She said "does baby things." That means my little boy will do baby things. She said he will pull his hands to his mouth, and suckle them, and he will play with his hands and his mouth and that all of his learning and happiness in the world begins with his hands and his mouth. She reminds me of what K (midwife assistant) has been telling me about my baby. She is saying the same things. It gives me a little hope. And Ollie is acting like he just had a professional massage. He's stretching out and doing little happy grunts. He's such a love.
Ollie got off of his antibiotics today-as they cannot find infection in him at all. His sugar testing is now every other feed because he is maintaining his blood sugar so well. That means a heel prick every six hours instead of every three. Progress. Every day, little steps of progress. They upped his feeding to 20 ml of milk instead of 15. Ollie gained weight too. He is now 8lbs 15oz. My little tank.
I am amazed at how much he's like a baby now. He still has alot to improve on. But it makes me love him so much more every day as I see him begin to bloom into a real baby.
Monday May 26th.
Ollie is sleepy today. And I am okay with that today. (so far...who knows where my hormones will take me in an hour or two) This morning on the way to the hospital I played the Enya CD that was on repeat my entire 10 hour labor. It made that day fresh in my mind again. I don't want to forget that part of this deal. It was such a beautiful experience. Ollie and me working together to bring him into this world, as fast as we could.
He is so beautiful. He makes little baby noises. And his cry is so sweet. Course, I'm a little biased, but I bet all of you would agree. I can't wait to share him with the world. I think we all have defined that old saying that it takes a village to raise a child. I couldn't spend hours here at this hospital if it weren't for the help and prayers and encouragement both for myself and my husband who's doing behind the scenes work arranging kids and schedules.
What you really wanna see is how Ollie is today huh? Well...he's in a little gown with baseballs on it. It's blue...little boy baby blue. He is still on 35% oxygen, with a little tube that puts oxygen up his nose. It's not really invasive and I think he likes it. I can't blame him, it probably feels really secure to have what was missing at birth. They try to turn it down by 5% and his levels drop too low so they have to go back up. It's not a big deal to test if he can handle it, a little twist of the knob and a five minute wait. The doc has given the nurses free reign to attempt weaning down off it as he seems ready. So we continue to struggle with it a little bit.
Ollie nuzzled around a little bit this morning. He's still very sleepy...but before his feeding while I was holding him he rooted a tad. I always take one finger and touch his nose or his cheeks, stroke his forehead. Well, I got close to his mouth and he did a little baby bird move, opening his mouth and turning his head into me. It wasn't big and obvious like a "normal" baby would do, but it made me very happy. The doc came in today (the one my husband really wants to box because he is doomsday personality). I was very nice and smiled and asked how his day was...he was polite in return. He did a couple reflex tests-keep in mind, they were quick and not detailed tests-just a quicky thing, but Ollie passed with flying colors. His toes curl and flare in response to certain touches. If you pull his arms up with no head support he tries to pull his head up with them instead of letting it flop back. He's not strong...it's very weak attempts...but the good news is he's trying. It's something. He has slowed down significantly in opening up to the world, and I can't blame him at all. But he's still making progress. Often when I hold him, he just snuggles and sleeps very hard. He feels safe in my arms and uses that time to recover. It's hard to be patient. Then when I have to go take a break...and put him back ever so gently...he gets mad. He just wants to sleep on mama, and I so want the same thing. I noticed today that when he gets his BP taken he gets VERY upset. He does not like anything squeezing him at all. And I can understand why. If his feeding tube or IV gets too close to his neck, he freaks out. The nurses don't really notice these things. They are excellent at responding to him and taking care of him, but they don't take the time to notice and help him with his underlying trauma.
Today he has the nurses that he had for the transfer from Roseville Hospital to here. They are amazed at the changes. He is still tolerating only small feeds...about 12 ml at a time. They give him 15ml and there's usually 4-5 left over. They leave the left over in his belly and add enough of the new feed to keep it at 15ml. He's taking nothing but my breast milk. He totals about 4 oz a day. I am generating about 24-32 oz a day. So, the nurse said to start freezing and keeping at home and they'd ask when they need a big batch. That feels really good that I have enough stock and can keep up with him and get ahead of the game. So when he takes off feeding like a tank...we are ready.
I had some lunch-it's time to head back. The older kids are coming home today and I think I may leave a little bit early today to welcome them home and get things settled for the week. We feel so wrapped by everyones love and prayers. I know I keep saying it, but I literally can not put into words how much the support means. Just knowing that any given person I think of is praying and covering our son in light and love and health makes my heart rest. I love and thank you all...even those I haven't met...for giving a piece of your heart to my little Ollie...I'm going to take a couple pics this afternoon. It's been really hard for me to accept and get out the camera thus far, but I think I'm ready. Will post them tonight.
He is so beautiful. He makes little baby noises. And his cry is so sweet. Course, I'm a little biased, but I bet all of you would agree. I can't wait to share him with the world. I think we all have defined that old saying that it takes a village to raise a child. I couldn't spend hours here at this hospital if it weren't for the help and prayers and encouragement both for myself and my husband who's doing behind the scenes work arranging kids and schedules.
What you really wanna see is how Ollie is today huh? Well...he's in a little gown with baseballs on it. It's blue...little boy baby blue. He is still on 35% oxygen, with a little tube that puts oxygen up his nose. It's not really invasive and I think he likes it. I can't blame him, it probably feels really secure to have what was missing at birth. They try to turn it down by 5% and his levels drop too low so they have to go back up. It's not a big deal to test if he can handle it, a little twist of the knob and a five minute wait. The doc has given the nurses free reign to attempt weaning down off it as he seems ready. So we continue to struggle with it a little bit.
Ollie nuzzled around a little bit this morning. He's still very sleepy...but before his feeding while I was holding him he rooted a tad. I always take one finger and touch his nose or his cheeks, stroke his forehead. Well, I got close to his mouth and he did a little baby bird move, opening his mouth and turning his head into me. It wasn't big and obvious like a "normal" baby would do, but it made me very happy. The doc came in today (the one my husband really wants to box because he is doomsday personality). I was very nice and smiled and asked how his day was...he was polite in return. He did a couple reflex tests-keep in mind, they were quick and not detailed tests-just a quicky thing, but Ollie passed with flying colors. His toes curl and flare in response to certain touches. If you pull his arms up with no head support he tries to pull his head up with them instead of letting it flop back. He's not strong...it's very weak attempts...but the good news is he's trying. It's something. He has slowed down significantly in opening up to the world, and I can't blame him at all. But he's still making progress. Often when I hold him, he just snuggles and sleeps very hard. He feels safe in my arms and uses that time to recover. It's hard to be patient. Then when I have to go take a break...and put him back ever so gently...he gets mad. He just wants to sleep on mama, and I so want the same thing. I noticed today that when he gets his BP taken he gets VERY upset. He does not like anything squeezing him at all. And I can understand why. If his feeding tube or IV gets too close to his neck, he freaks out. The nurses don't really notice these things. They are excellent at responding to him and taking care of him, but they don't take the time to notice and help him with his underlying trauma.
Today he has the nurses that he had for the transfer from Roseville Hospital to here. They are amazed at the changes. He is still tolerating only small feeds...about 12 ml at a time. They give him 15ml and there's usually 4-5 left over. They leave the left over in his belly and add enough of the new feed to keep it at 15ml. He's taking nothing but my breast milk. He totals about 4 oz a day. I am generating about 24-32 oz a day. So, the nurse said to start freezing and keeping at home and they'd ask when they need a big batch. That feels really good that I have enough stock and can keep up with him and get ahead of the game. So when he takes off feeding like a tank...we are ready.
I had some lunch-it's time to head back. The older kids are coming home today and I think I may leave a little bit early today to welcome them home and get things settled for the week. We feel so wrapped by everyones love and prayers. I know I keep saying it, but I literally can not put into words how much the support means. Just knowing that any given person I think of is praying and covering our son in light and love and health makes my heart rest. I love and thank you all...even those I haven't met...for giving a piece of your heart to my little Ollie...I'm going to take a couple pics this afternoon. It's been really hard for me to accept and get out the camera thus far, but I think I'm ready. Will post them tonight.
Sunday night...just got home...
Ollie was more responsive tonight, awake and not happy with the world. His nurse is young and was having a hard time with all his wires and IV's. At the hospital where Ollie is, if you pay attention, you can hear the sound of a baby mobile being played over the loudspeaker every once in a while. You know, the kind you see dangling toys over a kids head in a crib...they all play the same tune. It took me hearing it a few times to ask what it was...I figured it was a visitor must leave warning or quiet hour in the nursery or something. I was told it was played every time a baby was born into that hospital. How cute. For a couple days it was cute. You'd hear it and get this vision of a perfect little being entering the world screaming and pissed, and happy parents crying, and a happy family shooting pictures up a storm. After two days, it's not so cute anymore. You start to resent all the normal happy families. It's not fair. I shared this with a friend today and how I drift off to sleep sometimes and hear the mobile music and it warps into this melting freaky wind up clown music in my head and I wait to hear an Ozzy Osbourne song come blaring to life. She said "maybe not all the babies they play that for are healthy" We laughed at how mean that was to think, but it was kinda funny. When you are sleep deprived, it's like Saturday Night Live all the time. The dumbest things make you laugh. Someone walked by with toilet paper on their shoe. I laugh/snorted.
Two infants came into Ollies room today. One was newborn and left after an hour or two. One was transferred in from another hospital. Another one of Ollies roommates left and was graduated to Nursery C. We are in Nursery B. He started in A. I guess we need Ollie to get F's to come home. Never thought I'd ask one of my kids to get F's.
The nurse gave me free reign to pick up Ollie whenever I want. She said I don't have to ask anymore. I can't tell you what that feels like as a mom. First we couldn't even touch him. Now I can hold him whenever I see him. We sat in the sterile sheet covered rocker again tonight. I whisper my dreams to this kid. I ask him to keep trying and tell him how much I love him. His cries are so sweet. He sounds like a baby kitten. It's not loud at all. He's such a mellow guy. He just complains these little squeaks and mews. He was much more sucky on his pacifier and is taking his milk well-but still on a lower dose. It's just a small tummy. His blood sugar is so great that he now gets his heels pricked only once every six hours for testing instead of three. The poor kids heels...I can't describe, it makes me really sad. I had to ask the nurse to not prick his heel while I was holding him. I don't want to be associated with anything ouchie.
As I talked to Ollie tonight he really thought about opening his eyes. He was so determined and working those eyebrows up and down up and down. The lids are sticky from being swelled shut, and he's really having to work it alot to get them going. They haven't parted yet, but he's so close. It's like he's staring at my face with his eyes closed. His little mouth forms the shape when you make an "oo" sound. He's trying so hard. I was an hour late in leaving when I wanted to go because he was so close to looking at me and he was so active. I felt bad going when I did. But I hope tomorrow...err later today that he is more and more active. He's just always so so sleepy. I know newborns are sleepy but this kid is stunned and I mean...sleepy.
I drove home in the dark. I drove down the street that I have driven every day this year to take my older son to school. Those days seem like months ago. This town seems like New York to me. That routine, those old rituals...I miss them. I miss my old life. Ollie was going to fit into my life, and now I am fitting into this crazy unplanned life...I'm tired. This is exhausting. I think I may force myself to sleep in just a little bit. I'm so tired. I don't want to crash my car or drop Ollie when Im holding him or some stupid mistake to add guilt to my pile. I hear the wind in the trees outside and my trains. The same trains that I think I passed near Ollies hospital today, or at least I'd like to think they drive by my house and continue down past his hospital...some kind of link to my little boy so far away from home in so many ways...
Two infants came into Ollies room today. One was newborn and left after an hour or two. One was transferred in from another hospital. Another one of Ollies roommates left and was graduated to Nursery C. We are in Nursery B. He started in A. I guess we need Ollie to get F's to come home. Never thought I'd ask one of my kids to get F's.
The nurse gave me free reign to pick up Ollie whenever I want. She said I don't have to ask anymore. I can't tell you what that feels like as a mom. First we couldn't even touch him. Now I can hold him whenever I see him. We sat in the sterile sheet covered rocker again tonight. I whisper my dreams to this kid. I ask him to keep trying and tell him how much I love him. His cries are so sweet. He sounds like a baby kitten. It's not loud at all. He's such a mellow guy. He just complains these little squeaks and mews. He was much more sucky on his pacifier and is taking his milk well-but still on a lower dose. It's just a small tummy. His blood sugar is so great that he now gets his heels pricked only once every six hours for testing instead of three. The poor kids heels...I can't describe, it makes me really sad. I had to ask the nurse to not prick his heel while I was holding him. I don't want to be associated with anything ouchie.
As I talked to Ollie tonight he really thought about opening his eyes. He was so determined and working those eyebrows up and down up and down. The lids are sticky from being swelled shut, and he's really having to work it alot to get them going. They haven't parted yet, but he's so close. It's like he's staring at my face with his eyes closed. His little mouth forms the shape when you make an "oo" sound. He's trying so hard. I was an hour late in leaving when I wanted to go because he was so close to looking at me and he was so active. I felt bad going when I did. But I hope tomorrow...err later today that he is more and more active. He's just always so so sleepy. I know newborns are sleepy but this kid is stunned and I mean...sleepy.
I drove home in the dark. I drove down the street that I have driven every day this year to take my older son to school. Those days seem like months ago. This town seems like New York to me. That routine, those old rituals...I miss them. I miss my old life. Ollie was going to fit into my life, and now I am fitting into this crazy unplanned life...I'm tired. This is exhausting. I think I may force myself to sleep in just a little bit. I'm so tired. I don't want to crash my car or drop Ollie when Im holding him or some stupid mistake to add guilt to my pile. I hear the wind in the trees outside and my trains. The same trains that I think I passed near Ollies hospital today, or at least I'd like to think they drive by my house and continue down past his hospital...some kind of link to my little boy so far away from home in so many ways...
Sunday, May 25, 2008
Sunday May 25th
This morning's 8am check in: Ollie did last night like a professional baby! He got food in his tube every 3 hours. He had a little residual food in his belly after each feeding, so they backed down on the amount. I'm happy about that because we think they were starting him with too high an amount anyway. It's hard because Ollie is not tiny like most the babies in the ICU, he's huge. They have to hunt down diapers for him because the newborn size is like a speedo on the poor kid. Anyway, he may be big, but that tummy is the size of a marble right now, never had food before. They were trying to feed him golfball size doses. He'll be ready in a couple days, so no worries. Other than that he slept great through the night. His next feed is at 1030am. I asked the nurse (Becky again) if I could "kangaroo" hold him again like I did last night while he gets that 1030 am feed. She said sure no problem. He will not have had his phenol barbatol yet which makes him really sleepy. So maybe he can nuzzle around on me a little bit and associate mama with food some more. Good stuff!
I may not update until late tonight again, depending on how busy I am at the hospital. But I wanted to say that any parent who's had a kid in ICU knows that you can't be there long, without hearing stories, and meeting other parents. We have met masses. But, there are a few that weigh on my mind this morning I ask you think of in your prayers. I may not ever know the outcome of these kids, but extra prayers and thoughts and wishes never hurt. They are fighting for life in the very room our little Ollie is...
Yesterday we met Samantha. She was born full term to a very happy mama, dada, and big sister. Samantha won't eat, and when she does she throws up. She doesn't wake up from sleeping most of the time. She doesn't look around. She just lays in her bed. Everyone talks to her and strokes her and loves her. Doctors have tested her and consulted with other doctors and specialists. For three weeks every test known to man has been done on this little girl, and she passes each with flying colors, and yet she has no will to live. She does not thrive. I pray she comes back to us and goes home with her loving, sweet family and excited big sister.
I can't remember the name of the mama I met in the waiting room with her other two sons. We were both sore from birth and tired. She was negotiating childcare arrangements on a cell phone. Her baby has a mass in his lungs. They found it before birth. She is praying it's not cancer. She is praying they can remove it. She is praying it will remedy itself. And she, like me, has 3 other children. They are all parted out to various places. She goes home alone to an empty house and cries and cries. We cried together for our healthy children, we cried together for our sick babies. We found refuge in eachother. I don't even know her name...I pray her baby goes home to happy big brothers, just as I do mine. We all just want life for our children. Anything more than simply that is a miracle.
And then in the very corner of the ICU is a tiny little girl. She is maybe a pound. I could hold her entire body in one hand. She's not much larger than the size of your check book. And I could not believe my eyes the first time I saw her mama crying over he tiny isolette. She was a very good friend of my brother and I during high school. She went to our church youth group for years, and dated our friends. Her baby girl was born at 25 weeks gestation. She is tiny and fighting for life. This mom and dad have months left in this ICU. I look at merely weeks. Her baby is the size of my baby's leg. But she's a baby none the less and mom and dad are smitten with her. She was born 24hours and 3 minutes before Oliver. In the still of the morning, just like my Ollie. We pass eachother daily and just hug. We talk of lockers to stash our stuff, the cleanest bathroom, the cheapest hospital food, and of course our babies. Please keep her little girl who's name I haven't even asked yet...up in your prayers...she has so far to go. (Grace Emma-found out today-funny if Ollie were a lil girl his name would be Emma Grace...)
I'm off to hold my lil moose of the ICU in his big boy diapers. My heart is light this morning. I feel good. I pray it's not a calm before the storm...I am always braced for something. I don't know if that will ever go away. But for just a moment when my baby is in my arms, the whole world stands still, and I am just a mom. That's all I want to be, just another mom, with just another baby. How weird to want something that simple. You realize just how much you take for granted when you have a "normal" baby.
I thank you all for your continued support. Please keep praying today as you go to church for our little boy. He still has hurdles to overcome. Check this post tonight for another update of miraculous proportions!
700pm. I was doing so well when I left this morning. Somehow between the long drive to the hospital and standing at Ollies crib I lost my nerve. It has taken me a full day of processing my feelings to get to an okay place. I had a couple aunties stop by, who gave me more confidence in myself. My midwife and assistant stopped by as well, full of encouragement. No one tries to take away reality from me, and that I am grateful for. As I spend hours at Ollies bedside I have mixtures of feelings. I see some movements that make me nervous, they remind me of patients I have worked with that have movement problems-cerebral palsy type stuff. His nurse who has been around this department a while sees these things too and points them out to me. It's good for me to know, and learn now at 5 days old how to work with him physically, but it's also so new and such a reality check. Did I honestly believe we would be the one percent that walks away unscathed? Yes and No. It's a fine line to balance.
I sort out feelings of loss. Loss of those days after birth, when you have planned special things. A warm bath with the baby, snuggling in bed for hours, a certain drink or meal in celebration. I wanted to make Ollie a cake-for his first real birthday. His brothers holding him, dressing him in his clothes I picked out so carefully during my pregnancy. His little hats...and tiny pacifiers. There's a stack of receiving blankets, still folded and waiting for his tiny body. He's five days old. I have to change my plans. But I don't want to. In my head he's still in womb, waiting until it's right for all this to happen.
His eyes are so close to opening, he wants to when he stirs and is somewhat awake. But, not quite. As his color gets better and the swelling continues to go down he gets so close to opening them. His eyes are bruised as if he's been socked one real good. Like a boxer stepping out of a good fight. It makes me think of kids that are abused. It makes me real sad that my baby looks abused.
I went downstairs to the room full of cubicles...breastpumps in each one and rocking chairs. I get what milk I have and then I sit. I feel like crap, I'm not ready to go upstairs and sputter all over Ollie my emotions that are a mess. I don't want to just sit, I came here for my son. I'm caught in this limbo, longing for what I can't have, longing for what's lost. Longing for what I can't get back. I suddenly realize that I have been staring at a breastpump for an hour. I grab the milk sitting on the counter, pack up my stuff and head up to get this milk to his nurse for the fridge. I am weepy. I can't really seem to pull myself together. I crave normalcy again. My other kids coming home from school, lazy days taking naps with my Ryan, late night gaming fun on my xbox. I miss my friends online, I miss having time for those things and assuming that life will go-as normal-it was so peaceful, even this time last week. Everything is upside down. How on earth do I muster the courage to keep going? What do you do?
I try to call Will from one of the phones screwed into the wall. No luck. I need to talk to someone to snap out of this...and I have no way to reach out. I consider opening my laptop and shooting off an email-but am so down the thought of turning it on is too much work. I decide to get upstairs with this milk.
I hand the nurse his bottles of milk, and prepare to sit with him, trying to suck it up. She asks if I'm okay and the tears that I have controlled for two days start rolling down my cheeks. Damnit. I am trying so hard to be strong for him, for the other kids, for my husband, for myself. This f'ing sucks. And now I'm hallucinating because I hear my name. I look around and see my aunties standing outside the nursery. No point in trying to suck it up now. I come out blubbering and sputtering and crying all over. We stand in the middle of the room while I just break down.
After finding my tissues we walk to a waiting room and I get to unload. They take me to lunch and pray over me. They hand me presents for the baby and for Ryan who is now a big brother. They don't make me suck it up. They don't feed me candy dreams. They validate how I feel and assure me that the Lord will give me the strength and grace to walk this path he's leading me down. I wish my heart had the strength of these prayer warriors. I take them in to see my bruised baby, and they coo and awe over him, seeing him through the wounds. I'm extra sad today over feeling a loss of connection with Ollie, and a loss of connection with the rest of the family too. I am here on a mission to find this baby inside and out and bring him home. And today he's lost. Auntie H tells me a story of a relative who had altimers and how she was sitting to pray with him. He had been closed off from the world for a long long time, and the world went on without him, dragging him in tow. She closes her eyes and prays real hard and when she looks up a single tear is running down his face. I hold the hope that Ollie is in there. And even if he never comes out of inside where he is, I love him anyway. Even if his limbs won't work right, I love him anyway.
We go to say goodbye and my husband is here with Ryan. I tell him of my hard day and he is so supportive I start crying all over again. God just stepped in for me....and filled my day with hope again. We talk a little and I get to squeeze my healthy happy, often irritated, playful four year old. Even when he's bossy and a stinker, he's a normal four year old, and I just can't blow that off and take it for granted anymore. I wonder what Ollie will be like at four years old. I wonder if he'll pout like Ryan does because he can't stand on the little tykes playhouse in the waiting room.
As the hours of the evening pass, I get to meet with the midwife and assistant again. They are family now. This is our baby. They listen to my loss and my frustration. They make me feel better. We do some healing and holding therapy with baby Ollie. Will gets to hold him again too before he and the midwife's head for home. His doc decides he doesn't need the bili lights anymore so we can hold him longer. I plan to stay late tonight and just snuggle my little boy. They put him in pajamas. He's no longer under a temperature controlled crib, and he's wearing his first clothes. Baby steps. But they make me smile and perk me up. We have to leave the nursery for shift change. I tell Ollie I'll be back...I have to pump milk again. I go to my locker and get out what I need to do the duty. I take a peek at the present-some cute little boy clothes. I think of what Ollie will look like dressed up like a little boy. It brings a smile to my face. But what made my night was the card. It is just what I need to get through this night, and that's all I have for now: What lies behind us and what lies before us are tiny matters compared to what lies within us. ~ Emerson
I read the card and turn it over...it's made by "Willows"
Okay God. I see you. I'm with you. Let's do this.
I may not update until late tonight again, depending on how busy I am at the hospital. But I wanted to say that any parent who's had a kid in ICU knows that you can't be there long, without hearing stories, and meeting other parents. We have met masses. But, there are a few that weigh on my mind this morning I ask you think of in your prayers. I may not ever know the outcome of these kids, but extra prayers and thoughts and wishes never hurt. They are fighting for life in the very room our little Ollie is...
Yesterday we met Samantha. She was born full term to a very happy mama, dada, and big sister. Samantha won't eat, and when she does she throws up. She doesn't wake up from sleeping most of the time. She doesn't look around. She just lays in her bed. Everyone talks to her and strokes her and loves her. Doctors have tested her and consulted with other doctors and specialists. For three weeks every test known to man has been done on this little girl, and she passes each with flying colors, and yet she has no will to live. She does not thrive. I pray she comes back to us and goes home with her loving, sweet family and excited big sister.
I can't remember the name of the mama I met in the waiting room with her other two sons. We were both sore from birth and tired. She was negotiating childcare arrangements on a cell phone. Her baby has a mass in his lungs. They found it before birth. She is praying it's not cancer. She is praying they can remove it. She is praying it will remedy itself. And she, like me, has 3 other children. They are all parted out to various places. She goes home alone to an empty house and cries and cries. We cried together for our healthy children, we cried together for our sick babies. We found refuge in eachother. I don't even know her name...I pray her baby goes home to happy big brothers, just as I do mine. We all just want life for our children. Anything more than simply that is a miracle.
And then in the very corner of the ICU is a tiny little girl. She is maybe a pound. I could hold her entire body in one hand. She's not much larger than the size of your check book. And I could not believe my eyes the first time I saw her mama crying over he tiny isolette. She was a very good friend of my brother and I during high school. She went to our church youth group for years, and dated our friends. Her baby girl was born at 25 weeks gestation. She is tiny and fighting for life. This mom and dad have months left in this ICU. I look at merely weeks. Her baby is the size of my baby's leg. But she's a baby none the less and mom and dad are smitten with her. She was born 24hours and 3 minutes before Oliver. In the still of the morning, just like my Ollie. We pass eachother daily and just hug. We talk of lockers to stash our stuff, the cleanest bathroom, the cheapest hospital food, and of course our babies. Please keep her little girl who's name I haven't even asked yet...up in your prayers...she has so far to go. (Grace Emma-found out today-funny if Ollie were a lil girl his name would be Emma Grace...)
I'm off to hold my lil moose of the ICU in his big boy diapers. My heart is light this morning. I feel good. I pray it's not a calm before the storm...I am always braced for something. I don't know if that will ever go away. But for just a moment when my baby is in my arms, the whole world stands still, and I am just a mom. That's all I want to be, just another mom, with just another baby. How weird to want something that simple. You realize just how much you take for granted when you have a "normal" baby.
I thank you all for your continued support. Please keep praying today as you go to church for our little boy. He still has hurdles to overcome. Check this post tonight for another update of miraculous proportions!
700pm. I was doing so well when I left this morning. Somehow between the long drive to the hospital and standing at Ollies crib I lost my nerve. It has taken me a full day of processing my feelings to get to an okay place. I had a couple aunties stop by, who gave me more confidence in myself. My midwife and assistant stopped by as well, full of encouragement. No one tries to take away reality from me, and that I am grateful for. As I spend hours at Ollies bedside I have mixtures of feelings. I see some movements that make me nervous, they remind me of patients I have worked with that have movement problems-cerebral palsy type stuff. His nurse who has been around this department a while sees these things too and points them out to me. It's good for me to know, and learn now at 5 days old how to work with him physically, but it's also so new and such a reality check. Did I honestly believe we would be the one percent that walks away unscathed? Yes and No. It's a fine line to balance.
I sort out feelings of loss. Loss of those days after birth, when you have planned special things. A warm bath with the baby, snuggling in bed for hours, a certain drink or meal in celebration. I wanted to make Ollie a cake-for his first real birthday. His brothers holding him, dressing him in his clothes I picked out so carefully during my pregnancy. His little hats...and tiny pacifiers. There's a stack of receiving blankets, still folded and waiting for his tiny body. He's five days old. I have to change my plans. But I don't want to. In my head he's still in womb, waiting until it's right for all this to happen.
His eyes are so close to opening, he wants to when he stirs and is somewhat awake. But, not quite. As his color gets better and the swelling continues to go down he gets so close to opening them. His eyes are bruised as if he's been socked one real good. Like a boxer stepping out of a good fight. It makes me think of kids that are abused. It makes me real sad that my baby looks abused.
I went downstairs to the room full of cubicles...breastpumps in each one and rocking chairs. I get what milk I have and then I sit. I feel like crap, I'm not ready to go upstairs and sputter all over Ollie my emotions that are a mess. I don't want to just sit, I came here for my son. I'm caught in this limbo, longing for what I can't have, longing for what's lost. Longing for what I can't get back. I suddenly realize that I have been staring at a breastpump for an hour. I grab the milk sitting on the counter, pack up my stuff and head up to get this milk to his nurse for the fridge. I am weepy. I can't really seem to pull myself together. I crave normalcy again. My other kids coming home from school, lazy days taking naps with my Ryan, late night gaming fun on my xbox. I miss my friends online, I miss having time for those things and assuming that life will go-as normal-it was so peaceful, even this time last week. Everything is upside down. How on earth do I muster the courage to keep going? What do you do?
I try to call Will from one of the phones screwed into the wall. No luck. I need to talk to someone to snap out of this...and I have no way to reach out. I consider opening my laptop and shooting off an email-but am so down the thought of turning it on is too much work. I decide to get upstairs with this milk.
I hand the nurse his bottles of milk, and prepare to sit with him, trying to suck it up. She asks if I'm okay and the tears that I have controlled for two days start rolling down my cheeks. Damnit. I am trying so hard to be strong for him, for the other kids, for my husband, for myself. This f'ing sucks. And now I'm hallucinating because I hear my name. I look around and see my aunties standing outside the nursery. No point in trying to suck it up now. I come out blubbering and sputtering and crying all over. We stand in the middle of the room while I just break down.
After finding my tissues we walk to a waiting room and I get to unload. They take me to lunch and pray over me. They hand me presents for the baby and for Ryan who is now a big brother. They don't make me suck it up. They don't feed me candy dreams. They validate how I feel and assure me that the Lord will give me the strength and grace to walk this path he's leading me down. I wish my heart had the strength of these prayer warriors. I take them in to see my bruised baby, and they coo and awe over him, seeing him through the wounds. I'm extra sad today over feeling a loss of connection with Ollie, and a loss of connection with the rest of the family too. I am here on a mission to find this baby inside and out and bring him home. And today he's lost. Auntie H tells me a story of a relative who had altimers and how she was sitting to pray with him. He had been closed off from the world for a long long time, and the world went on without him, dragging him in tow. She closes her eyes and prays real hard and when she looks up a single tear is running down his face. I hold the hope that Ollie is in there. And even if he never comes out of inside where he is, I love him anyway. Even if his limbs won't work right, I love him anyway.
We go to say goodbye and my husband is here with Ryan. I tell him of my hard day and he is so supportive I start crying all over again. God just stepped in for me....and filled my day with hope again. We talk a little and I get to squeeze my healthy happy, often irritated, playful four year old. Even when he's bossy and a stinker, he's a normal four year old, and I just can't blow that off and take it for granted anymore. I wonder what Ollie will be like at four years old. I wonder if he'll pout like Ryan does because he can't stand on the little tykes playhouse in the waiting room.
As the hours of the evening pass, I get to meet with the midwife and assistant again. They are family now. This is our baby. They listen to my loss and my frustration. They make me feel better. We do some healing and holding therapy with baby Ollie. Will gets to hold him again too before he and the midwife's head for home. His doc decides he doesn't need the bili lights anymore so we can hold him longer. I plan to stay late tonight and just snuggle my little boy. They put him in pajamas. He's no longer under a temperature controlled crib, and he's wearing his first clothes. Baby steps. But they make me smile and perk me up. We have to leave the nursery for shift change. I tell Ollie I'll be back...I have to pump milk again. I go to my locker and get out what I need to do the duty. I take a peek at the present-some cute little boy clothes. I think of what Ollie will look like dressed up like a little boy. It brings a smile to my face. But what made my night was the card. It is just what I need to get through this night, and that's all I have for now: What lies behind us and what lies before us are tiny matters compared to what lies within us. ~ Emerson
I read the card and turn it over...it's made by "Willows"
Okay God. I see you. I'm with you. Let's do this.
Saturday, May 24, 2008
Saturday (May 24)
8am call to check in with the nursery:
Nurse Becky-Ollie has moved to the other side of the nursery. They got a new baby in that was sick and our lil moose of the ICU was the easiest to move to the slightly healthier side. lost 5grams, they would like to see more. very sleepy. small seizure like movements on occasion. Carbon dioxide was a lil on the high side. His nurse only reported what had changed negatively. I think to myself and tell my husband to keep in mind she is a weekend nurse. She doesn't know Ollie. She hasn't seen the miracles that he has done already. At the same time my heart is kinda sad. If I had brought in his milk every couple hours and told him I loved him and that he was doing good, maybe he wouldn't be doing the seizure like movements. It's so hard not to analyze every little thing. I have a feeling this weekend will be a little rocky as far as staff goes. I hope that the doc that's on this weekend is similar to Dr. Korti. I love her. She's just straight up. We pass her in the halls of the hospital and she smiles so warm. She too wants to see him get better-she is excited to do his EEG this Wednesday and knows it will be better.
It's raining outside. It hasn't rained in Roseville since February. We are in a stage one drought with the city asking people to not water anything, let their plants die. Restaurants are not serving water. The lakes and rivers are the lowest on record-some of them ever. There are fires all over California. The Governor has declared a state of emergency. And it's raining. I told Oliver the day he was born that one day he would be right as rain. I love the rain. The trains and the rain, and the happy sounds of my four year old. If I close my eyes for just a minute, and try real hard, it almost seems normal in my home. For just a minute. Almost.
It's 830. I wanted to leave at 800. We likely won't get out of here til 900. I have to go hurry things along a little bit. I am itchy to see my littlest boy.
Nurse Becky-Ollie has moved to the other side of the nursery. They got a new baby in that was sick and our lil moose of the ICU was the easiest to move to the slightly healthier side. lost 5grams, they would like to see more. very sleepy. small seizure like movements on occasion. Carbon dioxide was a lil on the high side. His nurse only reported what had changed negatively. I think to myself and tell my husband to keep in mind she is a weekend nurse. She doesn't know Ollie. She hasn't seen the miracles that he has done already. At the same time my heart is kinda sad. If I had brought in his milk every couple hours and told him I loved him and that he was doing good, maybe he wouldn't be doing the seizure like movements. It's so hard not to analyze every little thing. I have a feeling this weekend will be a little rocky as far as staff goes. I hope that the doc that's on this weekend is similar to Dr. Korti. I love her. She's just straight up. We pass her in the halls of the hospital and she smiles so warm. She too wants to see him get better-she is excited to do his EEG this Wednesday and knows it will be better.
It's raining outside. It hasn't rained in Roseville since February. We are in a stage one drought with the city asking people to not water anything, let their plants die. Restaurants are not serving water. The lakes and rivers are the lowest on record-some of them ever. There are fires all over California. The Governor has declared a state of emergency. And it's raining. I told Oliver the day he was born that one day he would be right as rain. I love the rain. The trains and the rain, and the happy sounds of my four year old. If I close my eyes for just a minute, and try real hard, it almost seems normal in my home. For just a minute. Almost.
It's 830. I wanted to leave at 800. We likely won't get out of here til 900. I have to go hurry things along a little bit. I am itchy to see my littlest boy.
Update: It's late Saturday night. Actually the wee hours of Sunday morning. I just want to cry as I write this update. When I arrived at the hospital this morning, I ran to see my baby boy. He was sleeping on his tummy with his little butt up in the air. He was happy and content. I stroked his back, met his nurse in person, who gave me the full rundown and I decided I liked her more in person than on the phone. Her next question was "do you want to hold your son?" My jaw nearly hit the floor. I ran to let my husband and Ryan say good morning so that I could take my time. I am shaking inside with excitement. After my husband says good morning and gets his check in, he returns with Ryan to the waiting room and I go scrub back into the nursery. I take off my shirt so there is as little as possible between my baby and me. They put up a privacy screen even though I was in my bra, just so we could cuddle and not feel stared at. Will's mom comes by for a quick visit then my mom and brother. Mom brought a camera...so I'd like to show you my baby boy with his mama for the first time since birth~
His head and face are still very bruised. But his oxygen tube is out and I got to cuddle with him. I asked him today to work on his swelling, and he did. By the end of the day he had lost 4 ounces and is nearly back down to his birth weight. He continues to need help with breathing (a little oxygen not just room air), and takes many medications, including the phenol barbatol to prevent seizures. He will likely come home on that for a few months. Did I already sayt that somewhere? oh well, sorry if it's repeat info. He is able to stabilize him temperature very well. He is near stabilizing his blood sugar. He has some odd body movements at times, and there is wonder if it is from damage that was done or if it is just his muscles and nerves "coming back online" and working.
The other most awesome news of the day: Oliver had his first feeding today. They attempted a bottle of my milk, but he cannot coordinate suck, swallow, breathe, which at times I'm not sure I can coordinate myself these days, so I totally understand. So a tube was placed down his throat and is taped to his chin that he receives his feedings in. He is not happy about it in his mouth because it pins his tongue down, and he was very much enjoying licking and sucking his hand and pacifier prior to the tube placement. But, they couldn't place it through his nose because of the breathing tube. So, Ollie is at a bit of a stand still now until he masters breathing and can get that tube moved. We can attempt to go straight from tube feedings to the breast if I am able to arrange to be at the hospital full time when that time comes...which may be as early as Tuesday/Wednesday. He is under the bilirubin lights as his bili levels were 13, which isn't that high, but with breast milk, it may go up a little, or not, depends, but the doc wants to see it just go down to at least 10. I am sure it's because it's the weekend doc, because Dr. Korti said she didn't care as long as it was under 17 he was handling it fine. It's hard to have such discrepancies in care, and in opinion of care. But a stupid blue light is not a battle worth fighting for me. We ride out the staff til the weekend is over...and Ollie looks like a rock star with a little mask covering his eyes shaped like sunglasses, and a huge blue light giving him a tan. Wonder when his pedicure is scheduled for...
He will see a speech therapist on Tuesday (no he's not gonna talk yet) she will assess his sucking muscles, tongue ability and make sure there is nothing preventing him from self feeding on mama's breast. He will also be doing an MRI any day now I expect, which I ask for much prayer on, not just the results, but it will require them putting him under general anesthesia for the 45 minute scan...that's always scary when it's an infant. And then his repeat EEG is still coming up on Wednesday, and although we all know at this point we will see massive improvement, I just have this suppressed hope that Ollie will blow the Doctors out of the water and show us the definition of a true miracle...
For now my vast family of praying and hoping friends....this mama is exhausted. I return to my son's side tomorrow morning, this time alone (yeah, pray for my directionally dysfunctional self as I negotiate that trip) as my husband is spending some MUCH needed time with our four year old Ryan. We tried to spend some time this evening NOT talking about the baby and just focusing on Ryan. He loved it. As he drifted off to sleepy land, he said he was really mad at daddy for not waking him up when the baby came out. We didn't try to explain that decision...(I was screaming and would have terrified him, and the baby was so sick instantly that we couldn't even call him in right after birth) it was my bad for making an unrealistic promise. But we did validate that we were sorry, and he can be mad about that, it's okay. He felt better after that and we told there were other things that he could do that were very important about the baby. We told him that when Ollie comes home, he will need to wear his own clothes and not the hospital's clothes for him, he needs healthy baby clothes. We asked Ryan if he would chose and outfit from Ollies drawer, and his face lit up. When the time comes, that will be Ryans job. It feels good to validate and reconnect with my other children...The older boys are at their bio dads through Monday, but Will called them today and gave them lots of happy news about the baby, and checked into their world. He and Jacob talked a long time on the phone and smoothed things over a bit. Things feel like they will return to somewhat normal. Thank you for the prayers and good thoughts around my other kids too, it's hard to reach balance when a family member is in ICU. But I feel like we are nearing that goal. We are going grocery shopping so there is food for all the kids when they get home, and so I can pack lunches as we have been living on the hospital cafeteria salad bar and are both sick of it. We are getting about 5-6 hours sleep at night (mine of course interrupted by pumping) but it sure helps with the zombie factor. Boy do I miss those lazy, pregnant afternoon naps with Ryan curled around my swollen belly. But, I feel almost human again now. So off for the first three hour stretch of sleep...more updates tomorrow...
~Keep prayin! It's workin! God and Ollie are one amazing team~
Randi Fay
Friday in the hospital (May 23)
By the end of today the hundreds of people praying for our baby has showed tangible results. He is off his ventilator, he has had his first bowel movement showing his intestines are online and ready to feed. He is squirmy and yawns, and hiccups and makes a cry face with his bottom lip sticking out. He does baby things that babies should do. Much of the equipment and lines are being cleared. They want me to be able to hold him as soon as possible. They want him to start feeding and nursing next week if he can. They want to do an MRI to look for physical brain damage, and we all hold our breath and pray for Wednesdays upcoming EEG. We want to see as much improvement as we can by then. We do not know how things will go from there. My heart begs for it's dream but my mind demands reality. My husband and I return home for the night for the first time. My older boys are with their bio dad and it feels eerie in my home. My brother comes over to keep us some upbeat company. It may have been a lil too upbeat. But my husband got to unwind, I got to catch up my blog for the most part and follow up some emails. I feel loved by my vast friends online from all over the united states...sending pages and pages of prayers for our family. Churches from Washington State to California have our son on the prayer list. Tough motorcycle riding men are bowing their heads in prayer. Online gaming friends have offered kind words for us, and I am certain some are praying in one form or another. And I am grateful. Because I see first hand the results. I ask everyone to continue to pray for this baby boy. We still have no assurance of what damage has already been done. We can only hope as baby Ollie recovers and makes his way to "his normal" that it is a level that will give him abundant life. We know today that he will not die. He will not be a total vegetable. He will eventually come home and be our baby. We share the happy news with the older kids over the phone. And Ryan gets to see Oliver without the tubes down his throat.
It's really 2am on Saturday morning as I finish this up. I confess it feels good to be in my own bed. It's still made up so I could have laid in it postpartum and not ruined the mattress. It crinkles when I roll over.
I hear my trains through the window, rumbling by. My four year old Ryan snores at my side. I checked up on Oliver tonight by phone with his nurse Kami. He pooped more-a huge accomplishment. His temp went down a tad, but she upped the warmer to compensate. His Carbon Dioxide is a little high from time to time as he is sleeping hard and breathes shallow when he sleeps hard. He held his breath (apnea) briefly at one point, then caught it again and blew off all that carbon dioxide. He's doing well. Sleeping. I guess I don't feel so guilty for sleeping too. I'm going to snuggle down in my bed for tonight, and be up in 6 hours to head back that way, other than waking up to pump twice in between.
See you at nine am Oliver...I miss you little love...
It's really 2am on Saturday morning as I finish this up. I confess it feels good to be in my own bed. It's still made up so I could have laid in it postpartum and not ruined the mattress. It crinkles when I roll over.
I hear my trains through the window, rumbling by. My four year old Ryan snores at my side. I checked up on Oliver tonight by phone with his nurse Kami. He pooped more-a huge accomplishment. His temp went down a tad, but she upped the warmer to compensate. His Carbon Dioxide is a little high from time to time as he is sleeping hard and breathes shallow when he sleeps hard. He held his breath (apnea) briefly at one point, then caught it again and blew off all that carbon dioxide. He's doing well. Sleeping. I guess I don't feel so guilty for sleeping too. I'm going to snuggle down in my bed for tonight, and be up in 6 hours to head back that way, other than waking up to pump twice in between.
See you at nine am Oliver...I miss you little love...
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