I'm blessed. I dont' know what else to say about our lives at this point, except that. Life is never something you can plan on in the first place, although between CJ and I's OCD, you would think that we had a crystal ball and knew everything about how our lives would go. I remember the day I was admitted, CJ told my dad, "But this is not what we planned....". That's how I've felt every day since. But the coolest thing about all of this is how God works, and the ways He's shown Himself and His divine knowledge about the best thing for our lives the past 6 weeks. I have to trust that this is exactly the way my life is supposed to go, and that no matter how crummy I feel the fall out has been regarding Avery's premature debut, everything is going to turn out just fine. The one thing Mom, Dad and apparently Daughter all have in common is that we crave instant gratification. I want my baby to be well today. I want her to be gaining weight and remembering to breath today. I want someone to tell me that she will unquestionably and miraculously recover and grow and mature perfectly without any complications... and that they know that as fact. I think I would let myself stop holding my breath and sleep more than an hour at a time if those things could happen. However, as it stands, we go day by day. It feels as though I exist only in the moments when I see her face in the isolette and am able to touch her hair, change her diaper, hear her cry and see her search for my voice with her beautiful blue eyes. These times are so few and far between. I find myself trying not to resent the parents and babies I hear in the next room over, laughing and cuddling together with no thought about what life is like when a stranger tells you you can only touch your child 6 times a day. Why don't I get to have that? Why do I have to go home without my child? I never thought the amount of tears I've cried could exist in a human body. But that is not to say that I don't know how utterly and completely blessed we are. Avery's lungs are almost fully mature. She passes all her tests as far as reflexes go. She is so very active and already has a personality that is very apparent and all her own. Here are some more medical stats on our sweet baby:
Platelets- This count should be at or over 100. Initially when they tested this for her, her count was in the 50's. There are some conditions this could be associated with, but Avery isn't exhibiting any signs of these. The doctor has indicated that this is probably just a side effect of being premature, and indeed, her levels have risen to around 80+ in the past day.
Jaundice- This is a very typical ailment for almost all babies to have, to some degree. Especially preemie babies, from what I'm told. They have her under these special lights in order to break up the abundance of red blood cells in her body and lower her jaundice levels. She has pretty cool eye shades she wears, but she tries to pull them off constantly. It's basically like being under a tanning lamp; she is under these for most of the day unless it is a "touch time" or "kangaroo care time". We're told she has no idea she is under the lights, she just feels the warmth, which is critical b/c she can't control her body temp by herself at this age. For right now, she will continue to be under these for the next few days. They will let her stay off for a few days, take more blood work, and perhaps put her back under them depending on the results. We are not concerned with this, again, it is said to be normal for babies.
Feeding- So far, Avery isn't digesting her food very well. Basically, her body hasn't caught up with the fact that she's not receiving her meals through her umbilical cord yet. She has lost some weight since birth (although this is also normal in term babies) and has no correlation to her being early. They briefly thought that she could have a blockage or hole in her bowels/intestines (and had Mom extremely worried) but an abdomen xray showed she just has a lot of air in there that she must push out herself. They pulled back from feeding her 8x a day, 8 cc's per feeding, to 6x a day, 6 cc's per feeding, and she was only digesting about 2-4 cc's per time. I get the feeling at this point, they think she just has a lazy bowel, but it is necessary to rule out every other infection or issue b/c she obviously needs to eat in order to grow and get healthier. As of yesterday, they halted all her breast milk feedings in order to give her bowels "a break" and see if we can slowly introduce my milk to her (today hopefully) and that she will begin to digest this. Another factor in a lot of her health "hiccups" is the fact that I am blood type O Positive, and she is O Negative. The doctors think this could be the cause behind some things that have no other explanation.
Lungs/air- As I said, her lungs are looking good. This was the most worrisome thing to me before she was born and while it still concerns me (I AM a mom, after all!) the nurses and doctors all remark that she has a set of pipes on her that are really impressive!! She definitely lets everyone know when she's not a happy camper. She never needed any additional oxygen (SUCH a big deal for a preemie), but had a C-PAPP machine on that basically just pushed through room temp air whenever she needed it (which wasn't often). However, it came with the head gear looking apparatus and took up a lot of her tiny face. She looked like she was a sick baby b/c of all the wires/tubes/machines, but I promise you, she is not sick... she is just being looked after extra hard : ) Anyway, yesterday they completely took her off all the machines associated with breathing!! She had NOTHING on her face at all! I never realized how much I took for granted being able to see my baby's face in its entirety. She looks a lot like her dad did when he was a newborn. I am totally okay with that ; ) She opened her eyes for a long time and made scrunchy faces. I fell so deeply in love, it took my breath away. That being said, I still forget that she is premature (I just think she's tiny) and that although she is a ROCK STAR already, I have to be realistic in terms of expectations. When I came back down to visit her the next touch time, they had to put in the small air granules in her nose (the kind adults in the hospital wear). When people mess with her too much (drawing labs, repositioning her, etc.) she gets very upset and holds her breath!! Also when she is very, very comfortable (laying on Mom/Dad's chest, at night on her back while sucking her paci) she forgets to breathe. These are completely normal occurrences for a premature baby, but nonetheless, scare me to death every time the alarm goes off. She only had this happen twice last night, but I will be keeping track of this going forward, as it is one of the criteria of her coming home with us eventually. When she does this, it's called "Brady"- short for "Bradycardia". They only push through room temp air so that she draws a deeper breath; this is still not considered "oxygen help", and they only push it through when she needs it and then let her do all breathing/regulating on her own. She continues to impress everyone daily on this!
PIIC line/IV's- Right now, she has alternating IV's that they are using: one in her foot and one in her hand. They are holding up okay, but her veins understandably are so small and fragile- they don't want to blow out all of them when she's a week old. These IV's will only be really necessary though if she continues to need around the clock fluids and nutrition, which she wouldn't need if she was tolerating her feeds. If she continues to not digest her food, they will most likely need to start a PIIC line on her. It is basically a long term catheter that will sustain itself a lot longer than an IV (which needs to be changed every 24-48 hours). That being said, the process of inserting a PIIC line is very scary, especially into a baby. There are risks including infection and possibly something to do with glancing her aorta w/ the catheter... I honestly can't even think about it. It terrifies me and although I know it is a last resort and something the doctors wouldn't do unless they were confident this is best for our child, I have so many reservations. We are waiting to see once they start feeding her again if she is digesting and if not, will revisit the PIIC line option.
Touch Times/Kangaroo Care- We are allowed to see her any time we want- however, we are only allowed to touch her at specific times during the day/night. If she is eating, it is at 3, 6, 9 and 12 (AM & PM). If she isn't tolerating food, it goes down to every 4 hours. During these touch times, we are allowed to take her temperature and change her diaper. And if we want to touch her skin or anything else, this is the time to do it. Kangaroo care is the time at night where Avery is allowed to lay skin to skin against Mom or Dad for at least an hour. This helps her recognize our smells and touch and can help me be able to pump more milk for her. There is so much documented support of this kind of care, and it is the absolute BEST part of my days now. She snuggles into us and falls fast asleep...tonight she picked up her tiny head, looked up at me for a few seconds, turned her head the other way and laid down on my chest again. Hello NECK STRENGTH!! At 4 days old! She is truly amazing.
I know there are a million more things for us to worry and fret about, but they are so overwhelming at times. I thank God every moment that He has brought us to this point, and allowed us to have a basically healthy daughter who just needs a little more time to develop. I am thankful for our families that have rallied around us, and our friends who check on us daily. Being in the hospital is like existing in a completely separate world... days and nights run together; bills and responsibilities cease to matter; what goes on outside of these building walls seems so innocuous and unreal. My reality is the few hours a day I get to spend with my daughter. Seeing her smile and make scrunchy faces, and knowing that for right this moment, she is doing good and that's all that matters to me.
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