weighed last night she hit the 2lb mark! It is noticeable in her cheeks. While the feedings are off to a good start we were told it is common to have to stop and restart several times, but so far it has been good enough to get her off IV fluids/nutrients completely! Her lungs continue to fluctuate and with her chronic lung disease it will probably continue this way for many weeks before we see significant improvements. It seems like there is always some troubling news that comes along with each positive step. Part of Callie's reservoir in her head came loose the other day and the doctors were worried that the catheter came out of her skull and would need surgery, so after several ultrasounds and x-rays, they determined that it was still intact and working properly. So the good news was that it was still where it needed to be, the bad news is that they also found some damaged tissue around her left ventricle. This is very common for babies with brain bleeds and we were expecting to see this at some point. The prognosis is still unknown and will remain that way for a while. It can take months to several years to see what lasting effect, if any, this will have on her. Some babies do really well while others really struggle, regardless of the size of the bleed and damage. This finding just increases her chances of having some lasting effect. We will do everything we can do to stimulate brain development, like reading to her and playing her music. Babies have amazing resiliency and their brains have the ability to compensate for the damaged areas. We just hope and pray that Callie will be able to adapt and live a happy and fulfilling life.
We wanted to thank you all again for your thoughts and prayers. We also wanted to ask you to pray for another family here in the NICU. Lily Grace was born on Sunday with Spina Bifida. She had surgery on Monday and has been making daily steps towards recovery. We have had the opportunity to get to know her parents and we all strongly believe in the power of prayer. If you could keep both of our girls and all of the other babies, as well as their medical staff, in your prayers, it would mean a lot to us.
Congratulations on reaching your next milestone, Callie, and what a remarkable one it is! We know that your progress will be slow; we just also pray that it's steady. We will continue to pray for you and the rest of the little ones in NICU, especially Lily Grace, as well as their parents and medical teams.
ReplyDeleteBev & Bill
She is such a rock star. I love this picture in her little outfit. She is getting so big. Congratulations.
ReplyDelete-Amanda (the RT at night)
Congrats! What an exciting milestone! We continue to pray for Callie and will now add her friend to the list!
ReplyDeleteWhat? no more naked baby? seriously, she is so wonderful and 2lbs is such a great milestone! HORRAY CALLIE! and i love how alert she is opening those big eyes to look all around! precious, she is so precious! keep up the love guys, you are doing amazing:)
ReplyDeletelove you,
bren
What wonderful news! Mommy's milk is just what Callie needed! 2 lbs, what a magical number. You have finished another chapter in the big novel of life.
ReplyDeleteCallie looks so beautiful in her pink outfit. All our in our prayers.
Love you all,
Callie, you are one amazing little girl! So happy to hear that you are now 2lbs, soon you will reach your next milestone and be 3 lbs before we know it!! We know that whatever obstacle may come your way that you will conquer it with the strength, courage and perseverance that we have seen in you since the moment you were born. We trust that God will continue to bestow his blessings on you and keep you ever so close in his care as well as your little friend Lily. Lee & Marci, your love, commitment, hope and faith are an inspiration to all of us. Thinking of you & sending our love,
ReplyDeleteJon, Amanda & Sadie
Congrats on hitting the 2lb mark little girl! Stay strong through these other struggles Marci and Lee. Callie's one determined girl. Give her a little hug from us. Always in our thoughts and prayers,
ReplyDeletePhil and Delyza
Lee and Marci,
ReplyDeleteThe strength you have shown through all of this is truly amazing. You really are a remarkable young couple. We will continue to pray for Callie and your new friends.
I am really glad you have met parents to share the ups and downs- it will be great support for all of you. I love the pink dress and hat!! She is so cute!
Love,
Don, Lisa and Dean
What a beautiful little girl! Callie continues to motivate all of us each and every day and we continue to keep her, and Lee and Marci, in our prayers every day. We'll be sure to add this new family; how great to hear that Callie is already making new friends!
ReplyDeleteLee and Marci, I can't begin to explain how much of an inspiration you guys are to all of us here. We are blown away by your courage and strength and feel so blessed to be able to follow your journey. All our blessings to you and your family!
Keep growing strong, baby girl! All our best,
Kate & the Key Property Management team
Through the ups and downs, Callie has fought her way to this milestone - 2 lbs. What a great accomplishment for her and for you, Marci and Lee!!
ReplyDeleteShe looks very fashionable and adorable in her new outfit. It's great to see her free from all those IV's. We're praying that she'll continue to do well with her feedings so those IV's remain a thing of the past. 3 lbs is next...
We'll keep Lily in our thoughts and prayers as well.
Love,
Kim and Jack
XOXOXO