"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."--Author Unknown

Wednesday, May 5, 2010

I'm a Mad Chemist and Some Preemie Issues

Or it seems that way when I am mixing up Noah's food. While in the NICU he didn't gain as much weight as he should have so they started supplementing his food with extra calories. To keep him gaining weight they sent us home on the same schedule and it is crazy. They say I can nurse him every other feeding, but for the in between feedings he needs to get some different concoctions. He needs to get two formula bottles a day with the special high calorie formula for preemies with a special thickener mixed in. The other bottles he gets needs to be breast milk with a half a scoopful of the high calorie formula per 3 ounces of fluid. However, since he has reflux issues we have to add a thickener to it to help him keep his feedings down. To mix the thickener up we have to add one package of thickener per 8 ounces of fluid. So between adding the half scoopful of formula with the thickener it can get a little confusing. I even had to explain it to the pediatrician because he didn't quite understand it either. So to start out the day I have to defrost some breast milk, mix in the formula and then mix it with the thickener. Then I have to mix up the formula bottles with the thickener so our fridge is full of bottles for Noah's feedings. It is crazy!! It makes me feel like a mad chemist with all the mixing ;). He still is not waking up so we also have to wake him up every 4 hours and make sure he eats the whole bottle. Since he doesn't get the thinkener when he nurses I am supposed to hold him upright for about an hour afterward. I guess that's when Noah and I get our bonding time in as I try to ignore all the chaos around me.
As for our first night last night...it wasn't very restful as you can see from my face in the picture:His apnea alarm went off a ton of times--I lost track after about 7. When that alarm goes off, let me tell you, it is loud and shrill enough to wake the dead or give you a good scare. A few of the episodes were because his heart rate dropped too low and the other times it was because he stopped breathing. He mostly recovered on his own, but a few of them required me stimulating him in some way--either rubbing his cheek or flipping his feet. Then early this morning the apnea monitor started going off because the lead had came off his chest and stuck on to his arm. It was alarming because it couldn't pick up his heart beat--ya, that was fun. I did take him into the pediatrician's office today because they like to see him as soon as he gets home. It was crazy trying to balance the oxygen tank, apnea monitor, diaper bag, purse and car seat. By the time I got into the pediatrician's office all the wires and tubing was hopelessly tangled up in knots. Oh well what can you do? One nice thing about him being a preemie is we don't have to wait at all in the waiting room, they get us right back to a room ASAP. I don't even have to sign in before we are whisked back to a room. AWESOME!! They certainly know my family at that office. As soon as they saw Noah they then asked if he was an accidental home birth, too, but I can thankfully say NO!!! The pediatrician looked him over and he looked great. We get to go back a week or two for a weight check to make sure he is gaining. If he is gaining then we can talk about changing up his mad chemist diet (see above paragraph). Unfortunately, he will continue to be on oxygen and the apnea monitor for a while. For tonight, we are keeping our fingers crossed for a quiet, peaceful night without any scares and alarms...How's that for wishful thinking?

Since Noah was a preemie there are a few extra concerns for him. Preemies can have issues with eye muscle development so they have an increased chance of having cross-eyedness and lazy eye. We have an appointment set up for the opthamologist for November to get him checked out. We also have an appointment with the developmentalist for November to make sure he is on track for his adjusted age in his development. Since he was 7 weeks early we can count on him being about 7 weeks delayed in hitting his milestones. Hopefully he won't be any more delayed than that.

Anyway Matthew and Josh were excited to meet Noah for the first time yesterday. As for the rest of us we are just in "survival mode". I didn't even get Sarah dressed today or do her hair. Because she didn't get dressed she went and found her own accessories to go with her nightgown. I took a picture because I thought she looked so funny with her mismatched shoes (on the wrong feet) and the cowboy hat.

As for me if I turn up missing just look for me in my laboratory (kitchen) mixing up some crazy high calorie concoctions in a delrious, half awake state while trying to silence the alarms :).

3 comments:

bamatamb said...

Let me come and get Daniel & Sarah tomorrow. I'll call you in the morning! Now, go to bed! (Hopefully to sleep!)

Unknown said...

Oh my...you are supermom!!! Good luck sleeping tonight and let me know if you need anything!

KiLee said...

I wish I could help. I don't know how you handle it so well! Good luck with the alarms tonight. Hopefully everything will just keep getting better. :)