Today is a big day our little fighter! She finally gets to eat!! Tonight at 8 they are starting her on what they call "gut priming". They are currently thawing some of Mommy's colostrum/breast milk and they will use that to get her digestive track ready for use! They will start slowing through her OG tube and make sure she tolerates it well. She is 16 days old today and this is her first meal...so she must be hungry! We are just hoping this will help fatten her up a little so that she doesn't look so small compared to Daddy's hand.Today was also a big day for Callie medically. Unfortunately, the spinal tap did not work, so they have made the decision to transport her either Monday or Tuesday to Johns Hopkins where they deal with this more regularly. Most likely, she is looking at surgery again later this week to put in a reservoir in her head. This will provide an outlet for the Neonatologists to drain the excess spinal fluid that is causing the pressure in her head until the blood clot dissapates. It is scary to think of another transport and another surgery, but we trust in God and know this is what Callie needs and that Johns Hopkins is the best place for her to be going. We hope down the road, she will be able to come back to St. Joe's to feed and grow. Callie also made big strides with her lungs today. She had her best x-ray yet and she was able to get the settings on the oscillator low enough that they have transferred her back to the traditional vent. And so far today, she has been requiring no additional oxygen which is making her Doctors and Nurses very happy.
It is the best news about getting Mommy's milk. Way to go Mommy!!! There is nothing better.
ReplyDeleteLove you all,
Rick, April & Matt
Yeah :) Poor Callie must be so hungry!! We are sad to hear another surgery might be coming...but will say a few extra prayers for Callie to be strong through this one too. Lee, hope you enjoyed that first diaper!! Keep the faith!!
ReplyDeleteMommy's milk will help Callie get even stronger and more prepared for this next transport and possible surgery. It's 8:30 right now so hopefully Callie's first feeing has gone well.
ReplyDeleteIt's great to hear that she'll be going to Johns Hopkins for this next phase in her treatment -- it sounds like they know what they are doing.
Glad to hear those little lungs are doing well. That's great news.
She's so strong. She inspires us to believe that anything can happen when you have faith and believe in it! She's a little miracle.
Love,
Kim and Jack
XOXOXO
16 days old already! Callie's a very brave little girl. She's been through quite a bit so far but that's great news that she can start having a good meal. I'm sure that will help her get through the next phase of treatments. Stay strong Marci and Lee.
ReplyDeleteLots of love and God bless,
Phil and Delyza
Great to hear she is getting a solid meal. Hope it will give her physical strength for the next phase. Keep up the faith. Love you all Callie, Marci and Lee.
ReplyDeleteSo excited to hear Callie is ready for mommy's milk! It will help make her strong for the trip. I have no doubt Johns Hopkins will give your little girl exceptional care. So glad to hear that her lungs are doing well, her strength is awe inspiring.
ReplyDeletelove you both,
Al
So happy to hear that Callie will be eating!! Hopefully it will give her even more strength to continue her fight! Praying for her next surgery and keeping the faith that God will keep her close in His care.
ReplyDeleteThinking of you all,
Jon, Amanda & Sadie
in my thoughts and prayers every day little girl...keep making us all so proud of how strong you are and how much progress you make every day! you are quite the little lady already:) mommy and daddy (and everyone who loves you and your parents) are so proud of you for all that you have accomplished already!
ReplyDeletethinking of you every second!
love,
bren
Marci, Lee and Callie!
ReplyDeleteI just sit and read all of this love and look at these pictures of this ever changing little girl. You are both so inspiring....just being able to sit and write these blogs so Callie's fan club understands...what a gift from you to all of us and what a gift for Callie. Never mind the "you're going to be great parents" saying....YOU ALREADY ARE PHENOMENAL PARENTS. You certainly are living proof that God never gives more than one can handle. Callie is clearly growing and making awesome strides. I pray, as always that God gives you all strength and perseverance and that the medical team caring for Callie is blessed with wisdom, safety and success. Thanks for all of the posts and sharing such an intimate journey with so many. I have learned so much from your infant daughter! Godspeed to each of you.
Strong work Callie!! So glad she is going to get to eat, what great news. And of course it makes me super excited that she came off the oscillator and isn't requiring additional oxygen. That should make you feel a little bit better about the transport. Have faith in the care at Hopkins, I can tell you first hand that there is no better place to have Callie at this point. She is making awesome strides, it is so great to hear your updates. What a fighter!! Keep it up Callie!
ReplyDeleteDear Lee and Marci,
ReplyDeleteMy sister, MaryAnn, just sent me a link to this website. I just want you to know that I am praying for you and for baby Callie. What an amazing baby she is and what a blessing in your lives. My thoughts and prayers are with you.
Cousin Joyce