For some reason, Ava has lost a lot of weight. She was up to 2lbs 12oz a few days ago and has dropped to 2lbs 9oz. We are not really sure why this is happening since she is now on full feeds of breastmilk and tolerating them very well. The most important thing for preemies is to GROW, so this is a little discouraging and frustrating. Her doctor also mentioned that she looks a little bit modeled. This basically means her skin looks sorta "marbly" if that makes sense. Her blood count is good and all her vitals are stable, so this is sorta a mystery as well.
She is still on the high flow nasal cannula but yesterday they bumped her up from 3 liters to 4 liters because she was having so many apenic episodes. She is still having them so they are considering giving her another med to help her remember to breathe, but apparently this medicine can cause problems with the tummy and she is doing so well with her feeds we really don't want to go backwards there. This is the NICU dance. She needs this, but it causes this, so is it worth it? That is the question we ask all day, every day. It is a difficult balance.
Last night we got to really enjoy Ava. She was WIDE awake and looking all around. I have never seen her eyes so big! We got to give her a bath pretty much by ourselves and it was so awesome! We love the nurse that she has. Yesterday afternoon I also got to kangaroo her. She did not tolerate it quite as well as I was hoping although she did seem very relaxed and it felt so great to have her against my skin. I really wish she was still in my belly :(.
I know I should never wish any of my life away, but it's hard not to want to fast forward through all of this to the day we bring our baby home. I know first hand that the preemie journey does not end there but I so badly want my family together under one roof, where I can REALLY be her mommy. Every day there is something new or different to worry about and I can't be there 12 hours a day like I was with Travis. I am completely exhausted at all hours of the day. Dragging myself up in the middle of the night to pump seems to just be getting harder and harder each night. But I know we will get through this because we got through it before. And someday, when Ava is three years old and dancing all over the house with her brother, it will be hard to believe any of this even happened.
5 comments:
What are they giving her now to remember to breathe? She is doing so well girl. It does not make sense that she is losing weight, hopefully it was just a fluke and she will be right back up in no time flat...and continue to gain weight! Her smile is so infectious, I just love it! She has the biggest most gorgeous eyes! I am glad to see her blood counts stabalize! Lets hope that the Drs can figure out something else to do other than a bone scan, I would imagine that would be hard on her! Many continued prayers girl!!
Alecia LeeHey girl, I love reading ur updates...thanks for keeping us in the loop. I can't possibly imagine how ure doing this....I thought I was drained with 2 kids n 2 jobs by myself was bad....but hands down to u....you are an amazing mother and an inspiration to all who knows ur story, not many mothers could do what you do...wed like to say they would, but reality is, there aren't many......if there's one thing I've learned from my loss of my daughter is too cherish EVERY single moment and memory you have with your child, take pictures n video cam everything.......your children are strong because they have ur blood in them....if u need anything girl, u know how to reach me.....I love ya
So pretty
I felt the same way when Jim was in the NICU, I just wanted it to be over so we could bring him home and I could feel like a real mom. It's impossible NOT to feel that way when your child is in the NICU.
Oh wow! Look at those eyes! She is such a cutie!!
Still thinking of you and Ava, and hoping and praying she gains weight and goes down on the cannula soon.
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