Adam has done a good job posting some updates on Facebook, but a quick recap of what's been going on the last week:
James has been doing a great job gaining weight. He's consistently been putting on about an ounce per day which is what they expect. As of today, August 10, he weights 4 lbs 11.4 oz (up over a pound since birth - 3 lbs 10 oz). I can honestly say he feels heavier and looks bigger. He's got chub to his cheeks, a double chin and rolls starting to appear. This makes for a happy momma and some very pleased nurses!
He's now getting about 40 ml per feeding or a little over an ounce every 3 hours. When he's awake and showing signs of wanting to 'nipple,' like making sucking noises and bringing his hands to his mouth, we or the nurses will try bottle feeding. He has taken the full bottle twice and has been consistently taking about 10-15 ml out of the bottle. In order to be discharged he has to take the full bottle every time. Not something we're really pushing for right now until his breathing gets a little better and he matures. About half his feedings are done via bottle and the other half are still done via the NG tube down his nose to his stomach. He also gets caffeine and some added vitamins via the tube. Breastfeeding is something I would like to try more as he is able but is not a huge priority of mine right now; we've tried a couple times but it worries me that we can't monitor as easily how much he gets and my concerns are more that he's getting what he needs to grow and that he's not being worn out by trying something new. I'm pleased with his bottle and NG feedings as he is getting my breastmilk -- which means pumping every few hours around the clock. This is exhausting and makes me feel tied down to this pump, but I guess if we were home with a 'normal' newborn I would feel the same way with bottle feedings and breastfeeding. If I could figure out how to pump and type at the same time there would be lots more blog posts!
Now what he's not doing so well. James has been having more frequent episodes of bradycardia and apnea. Some specific names of some of what is going on are periodic breathing and disorganized breathing. Essentially what happens is that his little lungs still aren't strong enough to be breathing fully on their own or even with little support so they tire out and he basically stops breathing causing his heart rate to drop and to turn him a little dusky or even blue colored around his lips. Sometimes this happens in smaller bits and he is able to recover on his own, and sometimes he goes into a deeper apnea where he really does stop breathing and this is when he starts to change colors on us, the monitors are all beeping and the nurses come running. Very scary because we feel like there's nothing we can do to help or stop this from happening.
What we've learned as this continues is that he may have some mild trachea weakness (normal preemie thing) and he has a small mouth (like mom) and possible smaller airways (they had trouble intubating him when he was born) and that they've tried weaning him and have even had him off all breathing support and airflow a couple times (making him tire out after a day needing several days to catch back up with the airflow support) and possible reflux (normal baby thing) and just being a general premature baby all contributing to the problem. Lots of little normal things that when added up are a lot for a young baby and that we've been reassured again and again he will likely outgrow once he gets to term or soon after. Even writing this makes me feel better because I'm trying to explain and reassure all of you that it's normal when I sometimes worry that it's not again reassures me that *hopefully* this really all is normal and to be expected. Hard to digest when none of this is normal for us and not what we expected.
A recent concern of mine has been that it seems these 'episodes' of bradycardia and apnea seem more frequent and worse now than they have been and it was finally explained for the millionth time to me today in a way I accepted; basically he was on more support initially that masked the problem and we've been pushing him and testing him out recently without any support and he's just tired and not ready. Also, around feeding times and with cares he has more stimulation which often times is negative causing him stress and to have more issues around those times. I often worried it was due to feeding, reflux, allergies, my fault, a congenital abnormality, etc that was causing problems but in my chat today with our nurse and doctor I'm finally understanding that no, it's just a part of the normal process and there's nothing I or they can really do differently besides be here and watch him when these episodes are happening to encourage him to take a breath or reposition his little head if it's too flexed or extended causing a kink in his little airway.
We've also been told with more certainty that we may not be going home soon. For some reason I had it in my head that it was always "maybe next week" basically every week. On Thursday we were told at least two more weeks or until he's about 37 weeks old or considered 'full term' as this is when his lungs and breathing should be matured. Two more weeks seems like an eternity to me as I've been away from home since July 5th. But hey, at this point what's two more weeks?!
I'm not sure where the time has gone but the thought of not getting home with him until nearly the end of August breaks my heart. Mainly because my short term disability will end the first week of September and financially I will need to go back to work sooner than we would like/basically right away when he gets home in order to be able to pay all of our bills. In theory I should have also had more vacation time by his due date as it accrues with each paycheck, so we would have been more prepared with more time off if he would have made his arrival closer to his due date. Also, lots of my vacation and sick time were zapped up in April with my surgery to remove the cyst and again with one of the following infections that got bad enough I had to take off with sick days. Cue the first "Why me?" comment.
I would give anything to have those seven weeks of disability back or to have it start over again with him when we finally get home, just to feel like a normal family with a normal healthy newborn for just one second. Cue the second "This isn't fair, what did I do to deserve this?" comment but in reality, thinking of going home and going back to work and leaving him are the hardest parts about this because I feel cheated of that time with him, especially since it's more important that I'm home with him because he is a preemie.
We have applied for social security medical assistance for him to help with medical bills for him as long as he is in the hospital but still waiting to hear whether we were approved. We also sent the short term disability company a letter from our nurse practitioner requesting more paid time off for me because he is a preemie and cannot be sent to daycare, etc. but haven't heard anything yet. What do other preemie families do, especially when their babies are in the NICU for months? Honestly, how do people get by? Must go read more blogs...
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