We continue to watch and pray for baby Grace.

Last night Grace was given a blood transfusion, as her cell count was low. She looks a little better physically, but we are unable to tell at this point if the transfusion will make a difference in her status. She has not been coming down on the ventilator, and she is still being weaned off the nitric oxide. Her doctor said I may be able to hold her tomorrow, but we will have to wait and see. Her ventilator tube may be too small for her and creating an air leak, which can give inaccurate readings and make it impossible to wean her off the ventilator. She may have to get a new tube put in tomorrow, which is very stressful for Grace and has always made her worse. We will likely be here another week still...I feel that if she gets off the ventilator, it will be a very short time before we go home. She will go home on oxygen...even if she doesn't need it all the home, we will be glad to have the machine in case last Thursday ever repeats itself! My mom will be coming back in town again this weekend to help out. Greg has gone back to work and taken our new dog with him to keep them both from getting too lonely:) Grace has her favorite little musical seahorse in her bed, and we also play a CD of Disney songs for her. She just isn't making the huge improvements we have hoped for and are really wanting to see our little fighter girl come to life in here.
-Kristen

*******
It weighs heavy on my heart to watch her walk thru this and read her updates. I cannot imagine having to hold vigil bedside again, and especially not being able to hold my baby. You never give up as a parent, you never falter from that seat edge anticipation. Like a cougar waiting for it's prey to make the wrong move you sit waiting for just the right sign or move to show that things are right again. So you can feel okay, so you can sleep, so you can breathe. I pray that God would give her the same mercy he gave to us, and just like Ollie, that baby Grace would be right as rain...

Baby Grace making progress...

Grace is making some steady improvements-the biggest issue is probably the ventilator right now. She has begun to do some breathing on her own, but there are other aspects of the ventilator that she needs for her lungs. Her doctor believes that she is unable to get rid of the carbon dioxide in her lungs by herself. She is now off the milrinone and dopamine, and the nitric oxide is still being weaned. I am unable to hold Grace until she is off the nitric oxide, and at the rate they are weaning, she will be off it in 40 hours. She wakes up every once in awhile, and needs her hand and head touched and to be sung to, then she goes back to sleep. Grace's reputation from teh NICU has preceeded her, and everyone understands that if she is not sedated, she will start ripping out every tube and line she can get her hands on:) She had another heart echo yesterday, adn the cardiologist was very happy and said that it looked like two different echos between last Thursday and yesterday. Grace is going to start getting a little food through one of her lines today and see how she responds to that-she has been getting only protein for the last few days. I am sleeping in a fold out hospital chair right next to Grace every night-hospitals should really invest in actual beds for parents:) Greg's work has been difficult in allowing him time off to spend with Grace-not a family friendly company. We would love some prayer for him to have a job where he is not gone all the time. Prayers needed for Grace to get off this ventilator faster than the doctors think it will happen! Once she is off it, she can be held and not sedated any longer, and start returning to normal.

Quickie update on baby Grace.

Quick new update tonight...today was defininitely the day for Grace to start showing these doctors what she's made of! She suddenly started tolerating the nitric oxide to be turned down significantly, and has had her oxygen decreased by 9%. She was at 100% on Thursday, and if you all remember your ventilator knowledge from a few months ago, that's pretty serious. She's been at 45% the last couple days and is now at 36%! I knew we were going to start seeing big changes! She is not staying sedated as easily-I think she is starting to feel better now. She woke up a lot when she heard her daddy's voice tonight. Tomorrow she is being taken off 2 major medications-dopamine and milrinone-both for her heart. Doctor said tonight that after she is off them, I should be able to hold her!!! God is showing up in her healing, and Grace is showing what a fighter she is....really hoping we won't be here a whole week longer...

Another Grace update for those of you praying...

Grace is doing about the same today. I've been told that I can't hold her for another couple of days, which is very frustrating and hard for a mother. Greg will be arriving in a few hours and have a couple days off here. Grace's doctor is now trying to get her oxygen levels lower on the ventilator...feels like deja vu from 4 months ago! She is still under sedation. The C-DIF infection is also called colitis, and it's unknown whether she had it before she came into the hospital or not. It's being treated with antibiotics. I keep hoping I will wake up each morning and see a major change, but she is moving pretty slowly. Grace was never sick like this in the NICU, which is pretty amazing, but it's hard to see her like this now. All her old NICU nurses have been shocked to see her so sick, just because she was healthy (for a preemie) in the NICU, and fine when she went home just 6 weeks ago. We have been pretty careful with her, and she was going to get to go to church for the first time in the next couple weeks. After this, Grace will literally not be leaving the house until spring. We had no idea that her chronic lung disease could cause this many problems. Please be praying for Greg and my own health-that we don't get sick at all this winter, and also for my sanity in being stuck at home for months:) Any good books will be appreciated! I think we will be able to have visitors here and there, but anyone with children will probably have to wait, as they are exposed to so much sickness in schools. Grace is on more medication and has more lines in her than she ever had in the NICU-it shows me unusual her stay was the first 4 months-she really sailed through without experiencing the problems most preemies have. Some of the medication she is on now does have some pretty serious side effects, especially the nitric oxide and morphine. Please be praying that these meds can be weaned, as well as the ventilator, of course. Her doctor is named Dr. Black-he said this morning we will be here for at least another week from now. My mom was able to fly down from Washington on Thursday night and has been here all weekend-she will be flying back tomorrow. Thank you for your continued prayers and support!


And on another note: Ollie is well and growing like mad. He had his first experience with sitting in and playing with grass. I have some really cute pics, but no time to post argh!!! Later...I promise...cute fat baby eating grass and drooling. :P

Little update on Grace

Quick update tonight...no major changes-Grace's color is back to normal and some of her medication is being weaned. The issue of her heart being enlarged has been determined to be a pre-existing condition, caused by the chronic lung disease from the ventilators. She will likely outgrow the problem, but we can now follow up with a cardiologist. A culture is being done for a secondary infection of pneumonia. We should have all culture results on Sunday. Grace definitely showed a little improvement today, so hopefully tomorrow will show even more. She has had her pediatrician in to visit several times, as well as nurses from the NICU. I am expected to go down to the NICU a couple times a day now to update everyone there:) Her doctors here are amazing-they are so thorough and patient. We really appreciate everyone's prayers-after all the miracles we have seen, we expect big things to happen when people pray for Grace! We have no idea how long Grace will be in the hospital...we do have a new dog at home and are hoping someone can care for him while we are here. We will be staying at the hospital night and day until Grace comes home. More updates when anything changes....

Can the Prayers come out of the closet!?!

My sweet friend Kristen brought her baby girl home from Sutter ICU (the preemie that weighed one poundish) about a month ago. Her sweet little girl was thriving at home, off oxygen, doing well, gained and was up to 10 pounds....I went to her website (I can't post a link on my blog as you have to sign in and such, it's a secure site) and saw this...

GRACE NEEDS PRAYER RIGHT NOW!!! I rushed her to the hospital today as she started turning blue and was barely breathing. Her stomach is distended and has been since yesterday. She is in the Pediatrics Unit. The right side of her heart is enlarged and we don't know why. It is unknown whether her stomach is causing the heart problem or the other way around. She has been intubated and is on a ventilator as she is sedated, and basically had heart failure. She is going for a CT scan tonight and hopfully we will know more after that. We are very scared and need a miracle. Greg is in Texas and will be driving back, but it will take him a few days-please pray that he can make good time and be safe. Grace is around 10 lbs. or so now and was completely healthy up until yesterday, when it seemed like she may have been getting a cold. Whatever this is, it cam on very fast. Please pray for the doctors to have wisdom and that there will be a simple solution to heal her. Will post updates as I have more info...Kristen

There was one update after this which said the CT was inconclusive. Her stomach is full of fluid but we have no idea what is causing all of this. Kristen is beside herself...the trauma of being in ICU and then to have to return for something like this is just devistating. Please pray not only for baby Grace but for her mama. If you're not the praying type-you know, those beautiful warm thoughts that are so healing...much love to all....count your blessings!

Randi Fay

})

Temper Temper!

Okay, someone had their first fit this morning. No, not me, that was last night. And no I'm not talking seizure! Apparently his little toy would not do what he wanted it to, and he downright had a temper tantrum. Leggies kicking, face red, head shaking back and forth. I thought he hurt himself until I grabbed the toy to move it out of the way and pick him up. When I did, I must've moved it in the way he was trying to as he immediately stopped crying and grabbed it again. My goodness! My sweet patient little angel baby was furious! And like an infatuated mother, I thought it was adorable and ran to the blog to share! I am armed with camera should it happen again! :P

Policy and Procedures makes for no sleep.

I am ranting...total venting for a few purposes. In hopes that it will allow me to sleep knowing I have purged. It will move the adorable chunky thigh picture of my sweet baby closer to archives where it will rest further away from scanning scary predator's eyes. And because...it's what blogs are for I guess. I hope no one in particular takes this personal, as I'm not targeting anyone that I can think of off the top of my head, although I may step on some toes. I've just had a crappy week as far as corporate America goes...

I am still disgusted. In light of recent events in my life which I may or may not disclose in this post I am just so utterly disgusted (because I can't think of a better word) that I am literally sick to my stomach. I don't mean to come off as better than, or preach as if I have never walked in the hooves of the herd mentality crowd, but...damn. I cannot believe that so many individual people stand up as a whole-a corporation, a hospital, a school, a "board" and instill policy and procedure. I am so flipping sick of policy and procedure!!! When did we go so digitalized that the individual person became a nobody, a single number in a sea of trillions of numbers? An unimportant person simply because of the fact that it's an individual person? Is anyone else here totally disgusted by the words "unfortunately, it's against our policy so blah blah blah?" Has it always been this way? Is there a place in this glorious country of ours that looks at the person for the person? That puts aside the "way it should be" the "policy of the company" and actually considers the situation in front of them? Is it only a matter of filling out the form, signing off on the line, closing the file and resting assured that our job is done right? How wonderfully selfish! Do we not consider the lives we are affecting by our actions? What if we just half ass tried to help the desperate person asking human to human for help on the other end of the phone line? What if we looked at the person standing at our desk and just for a fraction of a second put ourselves in their shoes? What if we considered the person who we are about to sign off for the sake of the company policy? What if we actually had feelings for the other humans around us, or just tried to even make eye contact? Perhaps that trait in and of itself would hold much more importance in our society. Perhaps we would see less people completely emotionally detached. Perhaps maybe our prescription rates for anxiety and depression would lower because perhaps there would be someone out there who actually heard us and even just pretended to understand our unique situation instead of prompting us in a prerecorded voice to press button number 9 if we need to implode.

Who are we defending anyway? The head of these multimillion dollar organizations who sit on boards with fellow millionaires and make these procedures, handing them down for the man at the bottom to follow with scrutiny for the sake of a barely more than minimum wage job. (and in many cases minimum wage is actually more accurate) They never have to see the human beings they step on, they just cash in. And society as a whole is lumped into a statistic that is covered by a policy, taken care of by a manual full of procedures. It's everywhere...in the handbooks you sign from your kids school at the beginning of every single year, in the registration forms you fill out at your doctors office yearly, it's posted on the wall of your grocery store.

I'm not anti rule. I'm not even anti butt covering, in fact, in this state I am a firm believer in butt covering. The part that irks me more than anything is the lack of human compassion. We have lost the ability to look another person in the eyes and make a judgement for ourselves that they are not trying to "get one over" on the company or on the individual in the customer service position, but they are merely another human being in a crappy place that needs to be heard, and needs some help. Is it really worth the argument over a receipt when the gallon of milk is obviously curdled? Shouldn't school discipline be dished out on an individual basis and not based on a handbook? And should your doctor really be able to make health decisions based on a packet of information you hastily signed months ago in a waiting room? Is it that much to ask to look one another in the eye and pretend for just a moment that we are having a human interaction that requires human skills? Or listen with your ears to the person on the other end and consider the desperation of their situation as part of your decision on what to do? If these heads of companies are willing to hire you, shouldn't that include that they trust your judgement of the people you are servicing?

Somewhere along the line we all got lost. Or may be it's just me. It's really really lonely sometimes. I wish and hope and pray that perhaps all of us, give it a shot. Try looking someone in the eyes today. Try listening to the whole story. I'm not saying lose your job or give the finger to the man. But what a difference we could all make if we just had a little compassion for our fellow humans walking this planet by our sides. It sure would be nice if I felt I stood a chance before I was shut down mid sentence by policy. Even that I was just heard and understood before I got the "unfortunately..." line. Perhaps everyone who reads this can take it to heart, even for a day and show a bit of humanity. Some frazzled mom of four solo parenting while her partner is out of town working may just break down in tears and hug you in gratitude. And you may just be blessed by the fact that you helped someone-you might even feel human again yourself.

Thank you for listening to my midnight rant. I think I can sleep now. If somehow I disturbed anyone, please press 9 and I will get back to you at my earliest convience.

My MOOSE!

Okay so, we joked in the ICU full of preemies that Ollie was the Moose weighing in at just over 8 pounds...but one day shy of 5 months he is weighing in at...a...whopping 17 pounds!!!

Here's some chunky pics:

The Diaper Change roll over escape technique...a very complicated manuver! How many rolls do those thighs have!?!

He loves helping me change the bed sheets..."there's a lump in my bed"

Cross eyed trying to eat the camera!

lol.."hold it still mom"

Watching dancing with the stars...with much interest...

Still lovin my thumb!

About the midwife's and...a laughing video!

One of the beautiful things about midwifery care is that there is never a rush. We sit and chat and they get to know everything about you and even build relationships with other family members, like your husband and children...



Ryan: Mommy, I miss the midwifes, how come we don't go see them anymore?



Mommy: (one eyebrow up) Well, I'm not pregnant, and they visit with pregnant people, but we could go say hi sometime.



(About 4-5 minutes passes)



Ryan: Can we go see them now? (see picture)






Yes, that's a beach ball...










and...the cutest!~
Jacob will be greatly offended if I do not mention that he was the master videographer for this one...enjoy!

Yes, we live!

Yes, I admit, I have lagged big time. After receiving several emails to confirm I have not dropped off the planet's edge, I decided I better come out of hiding. I'm actually kinda glad for the accountability. I must confess, I am beginning to land more and more in the space of reality. Being in ICU was painstaking on so many levels and seemed like a personal hell-well, it was a personal hell. Coming home felt like it should have been the end. It felt like heaven in contrast. A huge step in the opposite direction. I expected follow ups and an entire medical team and as was promised they are assessing and following what at first seemed like every breath.

Things have died down a lot, the excitement, the chaos, the appointments, the questions, the paranoia. But it seems at times like I am still in the freakish vice of the ICU waiting room. Caught in between worlds. Sometimes late at night, the moonlight sneaking in the crack of the bedroom window casts a shadow just so onto my bed, and I see the face of my baby not as he is laying there in dreamland, but swollen and bruised laying in his bed in the hospital. I dread waking him, but I have to pick him up and hold him close and say all my prayers of gratitude over again. I have to readjust his little body in the silken moonlight and see how beautiful he really is, perfect and whole. I stroke his peachy soft skin and ponder how we ever managed to stumble through such a huge ordeal. I still feel lucky, I also still hold my breath in anticipation of the other shoe dropping. I still have feelings of anger and sadness, I still get mad sometimes and want to just kick something. Sometimes I look at his baby book or come across an old picture and my eyes tear up seemingly out of no where. Sometimes I feel ripped off from the deviation of my oh so normal plans. I still haven't compiled all his pictures. This blog is the closest thing to a baby book I have right now. And as far as keeping track of all his measurements and such, they are all written in his medical records that I am supposed to keep track of here at home. It's not a cute little baby book. And I don't long for it to be so much anymore, I just long for the ability to accept it all. It is his story, and as I have said from the beginning it is what it is and I love and cherish it for that. Time doesn't stop and wait for you to be ready to move on...you just do. I guess acceptance and willingness are two different things. One comes with the desire for it, one comes entirely on it's own accord.

Oliver is well. He skipped rolling from front to back which is easiest and just began rolling from back to front. He is excellently skilled at grabbing and holding almost any object you hand him and is getting faster and now snagging things that pass by for a closer inspection (mama's toothbrush was the latest). He hasn't yet gotten to hands and knees, but he does seem to scootch around a bit pushing with arms or legs. He loves to pull out his pacifier and replace it with a thumb. He sucks and chews and grins so big at me as if to say "see what I can do?" He loves his thumbs. He drools like a Saint Bernard in front of a steak constantly and I am certain a tooth is due to come in at any given moment, but there is none on the horizon as far as I can tell.

The drool has also made way for the discovery of loads of baby noises, raspberrys and gurgles. He continues to kick those leggies, alternating them and then together, and has found that in the bath is the best place to do so as it elicits lovely shrieks and other such responses from mama. Jumping scores high on the fun list. He is ticklish all over, and either my mother and I have delicious face cream, or he can now give big wet open mouth face kisses. He also nuzzles into me giving cuddles and huggies, and often now shows a shy streak! Mama milk is still his only food, and I enjoy the plan of allowing him to lead in the decision to try solids. He is still steadily growing and on track. I am still producing enough to suppliment a bit for 3 other babies and keep a good stash on hand for "urgent needs" of local newborns whose mamas are having lactation start up issues. It's good to be healthy and blessed enough give back in our own special way!

Life is a little stressful in general right now. My only sibling hastily moved out of town for a job. I am happy for him, but...guilt guilt guilt... lol I will miss him. The big oaf. Will is out of town five days a week and working in town on the sixth day. To make matters more difficult we made the hasty decision to extend a hand to family again and have his 7 month pregnant sister, her 9 month old daughter and husband living here for a month. ARGH! I cannot put to words how unaccustomed I am to communal living, let alone in the absence of my husband and with the--lets say prior resentments--I have due to certain peoples behavior around my labor and ICU stay.. Many days of late I want to hide in my room with all of my children. On a positive note, I am learning better communication, and how to set boundaries with seemingly boundary less people. I feel as if that is all I do sometimes and am not sure if that makes me a picky b-word or if it means some people are just extremely unmannered. I suppose it doesn't really matter as long as I am not homicidal. As good as it feels to set boundaries down a double barrelled shotgun, I have learned that at that point I let it go to far. I have to say something, anything, much sooner than my gut wants to allow. It requires forethought! How many days are left in this month?

At least Will agreed that our priority now is just our family for a while after this. We have only been in this house for only a year, we have experienced all of the following in both of our families over the last 12 months: moving, moving, moving, divorce, babies like mad, of course Ollie's ordeal, kids in new schools, no work, then out of town work, an overdose that neared fatality, and friends needing a "place to stay"- temporarily of course-which never is as short as promised. All of that alone is insanity. We have to close our doors and just love on eachother for a while...less there be none left to give. Thank God he can see that now.

Now on another note...perhaps it was fate-blame it on technology. I subscribed to netflix. It opened the door to a world I had not yet ever explored...documentaries. Oh boy. I recently watched quite a beauty called Sicko by Michael Moore. I can see the grin on some of your faces now. Nothing has so beautifully illustrated my new found disgust of managed health care and hospitals in this country. No matter the contemplating, I cannot seem to find where I fit into all of this. I received in the mail two diplomas this month. One in biological sciences and the other in my general education. They will not go to waste, but they will be refocused. I have pondered and chewed on a decision long before I even became pregnant with Ollie and now I wonder if I need to finally fully allow myself to take the risk and follow that dream to fruition. It has very little to do with Nursing and nothing to do with mainstream medical practice. ...more on that later I suppose.

Are you scanning?

Did I catch you?

Would you like me to show you some pictures? Okay enough chatter...here's some baby fun!

My sweet Ryan Tyler turned FIVE!!!

Four months:

New Toys!

Chewing and Chewing and Chewing!

My Gamers... :3~

"My mom IS the paparazzi"...(see the eyebrow?)

A little closer and he'll grab it! He's taunting me.

Baybeh feets and Baybeh hands...mmm

Here comes the giggles...

Time for some close ups!

And lastly some adorable pics of Ollie sucking his thumb in his new ring sling. I must add a shameless plug for the sweet mama named Hope who makes these slings at home as a second income-She is so sweet and puts her heart and quality work into these slings! If you ever want one, please consider her. She'll even help you learn to use it! www.myspace.com/daryon Here's my lil peek-a-boo thumb sucker!

Love to all!!!