After a long and hard fought battle through the NICU, Kayleigh has gotten to a stable place in our eyes where we will allow Kayleigh's grandparents to hold her. You are probably wondering why it has taken this long and probably saying "It's about time." Well, for most of you who have not traveled the NICU journey before, the biggest fear when it comes to other people touching Kayleigh is that if she gets sick, you don't want anyone taking blame or pointing fingers. I would be devastated if someone in my family were to hold Kayleigh and something go wrong, and them blame themselves. Whether or not they had something to do with it, we didn't want to take that chance. It might sound cruel in a way, but until you are in this situation, you might not ever understand.
Anyways, it is long overdue and they were so excited to finally get to hold her. Kayleigh is doing great today. She is up to 32 mls on her feeds and tolerating every last bit of it. Every time I have to smell one of her "beyond stanky" diapers, I am quickly reminded of the troubles she once had with her bowels, and I proudly change with a smile on my face.
Aimee got Kayleigh to latch on again with the nipple guard and Kayleigh stayed on for at least 20 minutes while they tube fed her her normal feeds. That way she got the amount she needed while working on her feeding skills. It was cute when she wore herself out and fell asleep right there with Aimee. Normally, she would struggle to fall asleep because she always seems like she is going to miss out on something. She sleeps with one eye open and at any slight movement, she perks up and looks around. Today, she was smiling for everyone and just seemed to be in an very happy mood.
We are at a crossroads though. Kayleigh is not growing as much as the doctors would like, even being on full feeds. We have alternated her bottle feeds with tube feeds so we can save the amount of calories burned from bottle feeding/breast feeding all the time. We are thinking of cutting back more, so we can save those calories to grow. The doctors are even thinking about fortifying the breast milk again, but I am so weary of going down that road again. Whether we cut back on her bottle/breast feeding or we keep things the way they are and she grows slower, we run in to a situation where it may take a lot longer to get her to come home. If we feed her fortifier and she blows up again, we run in to a bigger issue where she doesn't feed at all and we have to go back on TPN, which would be a big mess. It is a tough decision and a crazy balancing act, but hopefully we will pick the best road to travel. She only grew 7 grams from last night, which isn't too exciting.
Some had asked about the Molar Pregnancy issue and we have not found out the results of that yet. They said it could take up to 6 weeks and it has only been 3 or 4. Hopefully we will find something out soon, so we can get some answers.
I wish everyone a great weekend and please pray that the doctors make the best informed decision on which road to take with this feeding/growth issue. I am ready to bring my baby home!!! ha:)
Thanks and God Bless,
The Freemans :)