And the NICU ride continues...By moving to transitional care, I think we just expect that things will go smoothly and Alyssa will continue to progress until she is well enough to go home. But I have to keep remembering what the nurses and other Mom's told me week 1. The course of 25 weeker's is like a roller coaster ride, with your up days and down days...and things can change so quickly. Well, let me tell you, I've always hated roller coasters, I am not a thrill seeker and I try to avoid scary rides the best I can. Needless to say...my experience here makes me HATE roller coasters even more.
I really shouldn't complain because considering how much we've been through, and how far Alyssa has come...in the overall scheme of things, she had a pretty good week...however I am going to complain somewhere in this blog anyways.
Alyssa continues to grow really well, she now weighs 6lbs 2oz, she's tripled her birth weight. She really is a miracle, when I think back at her birth weight of 1lb 14oz, and Jessica was too for holding on as long as she did. Most nights Alyssa gains 50 grams on average. This week we started trying to nipple feed her more (remember this is the bottle). And she did so well, I was so happy when I heard that she took 46 ml from Keith without ANY major heart rate or Spo2 drops...and August 11th she took her first FULL bottle with Courtney!!! So exciting!! She continues to nurse 1-2 times a day, and doing fairly well, but I never feel comfortable that she's received a full feed so she is always "topped up" by gavage. This was the "up part" of the week.
Because Alyssa's apnea's have all been related to her feedings the past couple weeks, the decision to stop her caffeine was made last Friday as she really had already outgrown her dose with her increase in weight. The weekend she was not herself, she was having many drops in her Spo2 while sleeping in her cot for no real reason. She would drop as low as the 30's and take a long time to recover, when before if she did drop in the 70's she would recover rather quickly. It still is scary when she stops breathing and her heart rate drops with feeding, but I'm starting to get used to stimulating her so that she starts breathing again. But when she does this for no reason...there is no getting used to this. Yesturday was a really bad day. Many times during the day, she stopped breathing. At one time, she dropped 3 times within 10 mins, where she required blow by oxygen in her face to recover, as she was lingering way to low for too long. Her color was awful, she was pale, and at times looking very blueish, and SO limp. She felt like she had no tone at all when I was trying to stimulate her.
I've just really had enough of all of this. Are we ever going to go home, and will she be ok when we do go home?? These are the big questions that I wonder everyday. I am being silly. I know we will eventually go home, and that we will have to be very careful with Alyssa with getting any illnesses, it really just sucks. Alyssa's nurse yesturday was thinking enough was enough as well, so she had some bloodwork done, which surprizingly turned back normal, no infection which is wonderful, and her hemoglobin was 101, which isn't stellar, but not bad either, actually better then her last results. So they decided to put her back on the caffeine...good old Timmy's, I can't live without my caffeine either, how can I expect her too.
Cross our fingers...but since she's been back on her cafe latte, she's been perfect. She was her old self last night. She was awake and happy and feeding well, with no major dips in her oxygen or heart rate. She looked at me with the cutest little eyes as if to say "Mommy, what is all the worrying about, I am just fine". Well thank you for reassuring me Alyssa, I slept well last night. Hopefully she will eventually outgrow the caffeine, and everything will be ok. But yesturday it was not ok...I pray that this ride will now go up and stay there, or just stop already so we can go home.
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