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

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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

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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