Baby Sarai Update

The Christmas Princess

Well here we are 2010! It seems as though time has just flown by! It seems like only the other day when we were blessed with the news of pregnancy....and like yesterday when she was born. As of yesterday she had her 6 week birthday. That was special for her and her big brother Danny as it was his 8th birthday as well!

Sarai is doing very well. She was moved from the PICU back to the NICU on December 19th. Each day that goes by we see more and more of our Father and His great Love for us all. Each day brings another step towards going home, her healing and recovery.

About 2 days after returning to the NICU she had her catheter taken out, her dialysis tube taken out and was taken off the ventilator! So close to being tubeless. On Christmas morning her last tube was taken out...the chest tube...Hooray it was such a great gift to her and us. She was left with one IV running her nutrients and the morphine which was slowly being weaned down. She was getting breastmilk through a feeding tube and all was going so well that they decided she could be moved up to the wards or floors as they say. This is just a normal hospital word, however when we got there I had a very uneasy feeling. Like "were we ready for this?" She was in a shared room with another child and the child's dad. We were not ready or even really knew that we could room in with her. So leaving her that night was very hard, maybe even harder than her first week of life leaving her in the NICU. The reason being our little princess was in this room and the nurses were in the hall! We have been so used to her having 24 hour care with a nurse at her bedside! So I am sure you can imagine to some extent how we were feeling.

Way too Cute! Little Cutie

Of course the next morning we were up pretty early so one of us could go be with her. When I arrived in the room she was awake and seemed sad and lonely, Poor girl. The nurse informed me that her heart rate had gone up a little and also her breathing, so she was being taken for an Echo Ultrasound. It was quite the production getting her there. I packed her while one nurse pushed her med pole and another with the monitor! I just had this feeling that she wasn't really ready to be on the "floors" yet. A decision was made later in the morning that Sarai should go back to the NICU. The doctor and nurses were so sympathetic about it, however I felt much peace about it. And not to mention when I told Sarai she was going back to be with her friends in the NICU she brightened up!

This has got to be my Favorite Picture so far!!

So we moved back to the NICU. We feel so much better now and we also know what exactly to expect when she does go back up to the "floors." We will be more prepared. After we moved back to NICU Sarai hit a little bump in the road, however it is not a bump we are going to be stuck on, we continued praying and praising and God continues to answer. Tests showed a bit of left diaphragm stunning, which the doctors think will come back on its own, and this is what we are praying for. She had quite a large accumulation of fluid around her chest cavity which was drained twice on the right and once on the left. Since then there has not been any problems with that Praise the Lord!! That being said she was having a harder time with breathing and was put back on the ventilator. Yes it was emotional having to see her getting tubes put back in however we are happy that they are dealing with all these issues. We want her to be healthy healthy before she goes home. Sarai was taken that next morning to the Cardiac Cath lab where they go into a vessel in the leg up into the heart to get good images of how everything is functioning. There was a lot of praying happening and the Lord answered yet again!! They couldn't find anything and things are functioning better than they expected...man God is GOOD.

She is so very sweet!!

She was getting x-rays each day to check for fluid but they have not found any more. The fluid they were finding has something to do with the fats from the feeds, it is called Chylothorax. To deal with this issue and get it resolved they have stopped her feeds and will resume in a week and a half. Until then she is on nutritional supplements so she won't starve, no worries. She also had a short surgical procedure yesterday (Jan 4) to insert a central IV line which was put into her leg. This will insure she is getting optimal nutrition and the meds she needs. She is still on antibiotics for a bacteria she got when on ECMO and will finish that on Jan 17. All tests for the bacteria are negative, Thank you Lord. She did however end up with a couple clots and is on a blood thinner to resolve those which we will have to administer once we go home, the total time for her to be on that is 3 months.....I just have to get the guts to do it, as we will have to give her 2 shots each day. But there is something called and encephlon that can be put in place so we can just inject into that instead of poking her all the time, that will make it easier.

They did go up on her morphine again and added another med to help with blood pressure while they give her time to strengthen. They began to wean the morphine again yesterday and will take it slow with weaning over the next week. Today she is to be extubated (be taken off the ventilator) again. YAY, this is exciting for us cause when she is on the vent we don't want to hold her...as I can see this tube being pulled or something and the fact that it takes a nurse and a respiratory to get her on and off our lap!

They're making her a soother girl!

Dad just called and says that she is extubated and on c-pap, which is just the little breathing tubes that sit just inside the nostril. YAY Thank you Father for all you are doing in this little girl!!

So we hit a bump, but we are over that bump and refuse to dwell on it and get stuck. We must keep looking forward with our heads held high, continue praying and praising!!

She is so content and makes such great eye contact. She communicates with us using her eyes and has shown us ta few smiles here and there. She is such a trooper. One thing she has made known to us all is her temper!! I told her brothers they better not make her mad....lol When she is mad there is no working up to it, she instantly turns bright red and sometimes purple, we try to console her quickly with prayer, singing and stroking her hair. The quicker we can get her to calm down the better cause they like to pull out the sedatives, so if we can get her to calm down then she doesn't get them. The one morning she got so mad at the nurse and she pulled her feeding tube out!! The nurses comment on how calm she is when we are around so we take turns going over to be with her so she doesn't have many long stretches without one of us during the day. One of us usually stays until late evening to get her to sleep and she is then quite settled throughout the night.

She was just chilling out lastnight after her bath

I am able to give her sponge baths and change her diapers, it's not much but it makes me happy as well as Sarai, she enjoys our time together with her.

We look forward and go forth towards our goal of going home soon. It is our hope and prayer to be able to take her home by the end of this month. But we will not rush her, she needs a the rest she can get for that is when the most healing takes place. It is so amazing how God has created these little tiny ones' bodies, cells and tissues to regenerate and fix themselves so quickly!! His creation is so amazing!

Thank you Father for our sweet baby girl, thank you for her continued recovery and healing. Lord thank you for the surgeons and the wisdom you have shown and given them, thank you Father for the nurses and doctors who look after all these children and thank you for the compassion, love, wisdom and grace you instill in them. Lord bless each one of these doctors, nurses and surgeons, bless each parent that is going through the same things as we are, bless each child and bring great healing to them all! Lord Bless each person who is standing with us in prayer and agreement Father for our little girl and Lord we thank you for each one of them. Thank Lord for the awesomeness of all you do all you show us and all ways in which you bless us Lord. Send forth your angels and let us here the ROAR!!!! In the loving name of Jesus
AMEN

Thank you to you all for your continued support and prayers be blessed!!