As I write this (while drinking a caramel shake), Sara is laying in her bassinet to my right as Jennifer bathes Abigail and Emma Grace. No trip to the hospital tonight, just bedtime at 9pm tonight and every night for the next 3 months.
Jennifer and I felt the pressure of leaving today. We had been told that if Sara bradyed (sudden drop in heart rate) while feeding we could be in the unit three more days. So while I gave her a bottle at 9am and Jennifer at 12pm we were sweating bullets. Here Sara, drink this down, no not too fast, oh no, wait, is she choking, what's her heartrate, is it dropping....AAUUGGHH. Pressure. She made it through. The docs gave the ok, half of her stitches were removed, she nursed and away we went.
This is post-op. Still has IV in hand. But she has no oxygen and no feeding tube - that was a first. She never looked back. Has taken every bottle with no problem since the operation. The nurses continually were amazed at her. That's what happens when God shows up!
This one is for the women, the little shoes on her feet. Every nurse made a big deal of them. Whatever - it's an outfit.
Abigail and Emma Grace hanging out in the courtesy room with Uncle Buck while mom and dad talk to doctors and nurses about leaving.
This is the second time Abigail and Emma Grace have seen their sister. The first time was 7 weeks ago when we had to tell them their sister might not be alive much longer.
Hard to put into words how Jennifer and I feel about Dr. Desolar. He was with us the first three weeks when it was dark. He has been with us the last 3 and we've been doing alot of smiling and laughing with him. He's not only an excellent doc, but has the warmth of a father. Jennifer really appreciated that when it was tough. He loves children and works very hard to help them live.
The New Normal
So what will life be like now? I wish I knew. I know it will involve 3,745 doctors visits in the next 3 months. Ok, maybe the next 6 months. Pediatricians, neurosurgeons, neurologists, heart doctors, eye screening, hearing screening, and weekly therapy visits to the home. Not to mention us learning therapy routines and doing it ourselves daily.
We have to live with precautions we are not used to. Basically if Sara gets the flu or RSV it will be life threatening. Why? Several reasons. She was born with the strep infection and was hammered with antibiotics. Therefore her immune system is weak. She had lung developmental issues. She's a preemie. Any sickness would probably send her to the hospital and back on the vent. Therefore we have been advised to stay home with her as much as possible until the spring. When our girls come home and have been around other children they have to come in, change clothes and wash hands. Same for Jennifer and I. No trips to church, Walmart, mall or other places with big crowds. Limited visitors at home. Pray we will be wise. Pray she doesn't get sick.
Sara will receive the special RSV shot, so that should help. Are all the precautions necessary? No one knows, she might still get sick. But it's a chance we are not taking. After 65 days in the hospital we don't want to go back.
Several people have asked me about the blog. Of course I'll keep it going. Updates will probably be more weekly than daily. But so many of you have grown so attached to Sara, we wouldn't dream of ending this. This has been a journey God has decided for us to go on. Many of you have chosen to go on it with us. You have made the load lighter. We have felt like we have marched through the valley of the shadow of death with an army of brothers and sisters in Christ, friends, and family. In the spiritual realm you have had our flanks and our backs. Thank you, let's not stop now.
Here is part of our family over the last 65 days. These are docs, nurses, and other support staff who have been incredible! Thank the Lord for them, we get to leave, they stay and continue to help the helpless. I wish we could have gotten all their pics, and I hope I spelled their names right. We'll never forget them.
Neurosurgeon - one proud doc. He said today - I think the Good Lord has been helping your baby. Could there be a bigger understatement?
There's more to this story we haven't told. I'm working on putting something together that tells it. All of you are a big part of it - thanks. Your prayers, encouragement, and support have meant the world to us. Jennifer and I look forward to the day we can be that for a family in our situation. I pray God's richest blessing to flow freely in your lives for years to come! With His Love and all our love - go have a milkshake!
That is AMAZING news!!! So glad to see your Sara home...safe and sound.
ReplyDeleteHallelujah!!!! I think that about says it all! I am so happy for you and your family!
ReplyDeleteCongratulations that's wonderful! Praise the Lord!
ReplyDeleteI am so thrilled!! I will look forward to your updates in the future. I feel like Sara is part of our family too! God is good:-)
ReplyDeleteIn the beginning, I cried tears of a mother, grieving the unknown of another mother. Today, it is tears of joy! Congratulations and welcome home!! We'll continue to pray for Sara's health and the health of your family!
ReplyDeletePsa 69:30 "I will praise God's name in song and glorify him with thanksgiving."
ReplyDeletePlease keep us updated on little Sara!
Peace & Grace,
Amy
I'm sitting here crying tears of joy for your family! God is so good! I praise HIM for every step in this journey little Sara Rose has made.
ReplyDeleteI'm so glad your family is back together and you can adjust to a new schedule. The first day of this new season sounds wonderful!
I am so happy to read that Sara Rose is finally home! I loved seeing all of the pictures! What a blessing to have Buck there to take them for you. Abigail looks so thrilled to be home with her! We're praying that Sara Rose stays well and healthy!
ReplyDeleteJessie
I am so happy that Sara Rose is finally home. Ive been following your blog since the beginning. It was sent to me by a friend and it really touched a place in my heart. 16 years ago my little cousin was in the nicu at st francis and in 3 months she will be getting her drivers liscense.....seems as though u all have become a part of my family and i wish you all the best and i cant wait to see the updates. She is going to be one strong little girl.
ReplyDeleteHolly
I'm so happy for you all!!!!! Celebrating with you from Alabama!
ReplyDeleteKelli @ ugottafriend.com
I am sitting at my desk and crying happy tears!! I know God can work miracles but boy it's amazing to actually witness it!! We are so proud of your sweet Sara and I'm so happy that you will continue to update the blog. Your family has become a part of my family. I look forward to all the little, "normal" things to come. Thank you, Sara, for making me stop and appreciate all the good in life.
ReplyDeleteI will continue to pray that all goes smoothly.
With love,
Jamie Corona
North Carolina
www.colesfoundation.com
Yeah!!! I am sitting here at my desk crying for you all. Praise God she is home.
ReplyDeleteSoooo happy for all of you! I will continue to pray for good health, happiness, and peace for all of you! Love you!
ReplyDeleteI'm so glad you guys got to bring you beautiful little girl home. Still praying for you in Huntsville, Al.
ReplyDeleteWelcome home, Sara! What a huge praise! God is GOOD! Oh my he's so GOOD! My sweet Zachary turned 1 today and he's a 28 weeker. He is thriving! I look forward to watching your miracle grow.
ReplyDeleteYeah!!!!!!! I am SO happy for you!!!!! Thank you for letting me join this journey and thank you for letting us know how she continues to do. She is truly a miracle!
ReplyDeleteleaving the NICU is sweet but sad-its hard to say good bye to those that took such GREAT care of your baby for so long.Our baby came home at 36 weeks also-born at 27 weeks-he got synigis for 2 years and has (thankfully) never gotten sick beyond an ear infection-we have been so blessed,in fact I think he's the healthiest of our 3 children-the lord looks out for these little ones...and they are fighters-good luck :-)
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