Peyton thankfully is doing wonderful as far as her health, her personality, and her development goes. My little almost 9lb baby (she was over 9lbs but recently lost weight) is such a HUGE inspiration to me! She is constantly cooing, smiling, and seems to always be in a good mood. I find this to be nothing short of AMAZING considering everything she has gone and STILL goes through on a daily basis!
I will start with the good news. They were able to stop giving her the lovenox injections because they re-ultrasounded her arm and the blood clot was gone. This is a HUGE relief to me!!! She was getting these shots TWICE a day since the end of August rotating the injection site between her arms and her legs. I did the math….she has received OVER 128 needle injections JUST for the lovenox!!! I’m not even counting the biweekly blood work and many many IV’s! Her legs and arms are so black and blue with welts and knots under her skin from getting all these injections. It was one of the hardest things for me to witness her go through. The craziest thing about it is that she didn’t even cry most of the time when they would poke her with the needle. She is so use to getting poked and prodded that it doesn’t even phase her! So THANK GOD the blood clot appears to be gone and it is one less thing she has to go through!
Other good news is that she has FINALLY reached her full feeds goal this week. The feeds are still being given to her through her ng tube. Right now they are giving her the full feed amount spaced out between 3 hour, so she is getting fed 24/7 because she is due to eat every 3 hours. The next step is to compress the feed time to 2 1/2 hours, then 2 hours, then 1 1/2 hours, then 1 hour, then 1/2 hour, then FINALLY HOPEFULLY she will be ready to take the feed through a bottle and eat normally and not need the tube in her nose. The doctor plans to compress her feeds in the half hour increments reducing the time every other day…so we still have a while to go before she can eat from a bottle. They are doing it this way to slowly ease her intestines into working to digest the food.
Since she is now on full feeds they stopped giving her the tpn nutrition via her broviac (the iv nutrition that she has been on to help her thrive since she wasn’t eating). This is were it’s getting frustrating…Unfortunately, since she’s been off of the iv nutrition she has been steadily losing weight, even with her being on full feeds. They have been adding calories to her feeds by adding formula and fat lipids to my breast milk. They were about to put her back on the iv nutrition but they decided to hold off yesterday and give her one more day to gain weight on her own and thankfully she actually did!! The iv nutrition is something I am REALLY hoping she doesn’t need to be on long term. It effects her liver because it is constantly being pumped through her body so it never has time to rest. It makes her liver enzymes really high causing her to be jaundice. From being on it for so long the whites of her eyes are actually yellow. So even though it does help her thrive it also effects her…Not to mention long term iv nutrition means she will need to keep that tube in her chest and constantly be hooked up to an iv pump. So although it looks promising that she gained weight last night, I’m trying to not get my hopes up.
I'm trying to stay positive, but it seems like every time something good happens it is followed by something bad..constantly giving me that feeling over and over again like someone is punching me in the gut! I was truly starting to believe that she would be home soon, I really had my heart set on her being home by Thanksgiving and my family FINALLY being able to meet her. Now with her losing weight I feel like everything is up in the air again and the light at the end of the tunnel once again feels unobtainable!
I don’t know how much more my body can handle..I feel like someone is ripping a piece of my heart out every time I leave her to come home, and I feel the same way every time I leave Rad to go be with her. I NEED this to end soon. The doctors need to see her gain weight at least 5 days in a row to even consider going home anytime soon. Although I don’t want to sound negative, I really don’t have my hopes up. I can’t handle the disappointment anymore!
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