Weight baring

Oh my god!!!! Very first time ever: Mr A stood up holding on to just my fingers! For almost a minute! And then did it again! So proud!!!!

Shrinky Dink

I shouldn’t be surprised. I weighed him out of turn for a reason. His spine, pelvis, scapulae becoming more prominent.

The stomach bug (presumed Norovirus) Mr A, Mr D, and I had of course hit him hardest–the one with the least to lose lost the most.

I weigh him every two weeks to adjust his milk amounts as needed. On the 25th, he was weighed at the hospital when scheduling his palate repair (which, by the way, Blue Cross is demanding “additional information” before approving, because a palatoplasty is something all the toddlers are trying to get these days). Clothed in overalls, he was 7.41 kilos (16 lb, 5.4 oz). Subtract the overalls but add a few weeks, and I figured he would weigh 16 pounds at his 1-year checkup this Friday.

Tonight, fully clothed in fleece pants, he weighed 6.97 kilos (15 lb 6 oz).

I am heartbroken. I think my son has failed to thrive.

Playing Favorites

Not to brag or anything, but my kids are totally everyone’s favorites.

On Friday, I cancelled their swim class (which is really water therapy–teacher is a SpED teacher and former PT/OT and has been working with special needs kids in the pool for over a decade). All three of us were on the tail-end of a nasty stomach bug, and I just didn’t trust their swim diapers to contain anything at all. Their teacher literally said, “Oh no–they’re my favorites!”

(This is funny because, up until last week, I wasn’t sure she liked us at all, much less more than anyone else.)

And then Mr. A’s PT/OT not only came to their birthday party, but she also stayed for quite some time. And brought them the neatest sensory bin and a bunch of oral-motor “toys”.

It makes me happy that my boys are so loved, even by those we (or the state) pay to work with them.

The Portable Baby

At some point, I do plan on making this blog more of an update-y type thing, but for now, it’s just random thoughts. So.

I used to say, jokingly, that Mr. A wasn’t “very portable”. And he wasn’t. Carrying him from the bedroom to the living room each morning, and from the living room back to the bedroom each night, was often the extent of it. As in, I couldn’t carry him into the kitchen to heat up a bottle, or into the nursery to change his diaper. Given that Mr. D soon weighed twice what his brother did, and I could just toss him in the Moby and call it good, this might require some explaining.

Mr. A came home from the NICU weighing just over 6 pounds (at 2 months old). He also came with accessories. From the head down: a nasal canula, which hooked up to either about 8 feet of tubing, or about 200. (I don’t know the actual lengths. Bad home-heath caller that I am.) The 200 was so we could have him hooked up to a very large tank (M-tank, I do believe) of oxygen and walk him around the house. Or so the cats could play with it when we were trying to sleep, as it stretched from the living room to the bedroom. The 8-foot went to a small, “portable” tank, that came in a nifty carrying container with a strap. He wore this 24-hours a day.

He then had a large suction machine, which also came in a nifty carrying container with a strap. In the pockets of the case were assorted suction tubes. We had to have this with us at all times, as he had (has) bad reflux and failed his swallow study with flying colors…as if repeatedly aspirating (resulting in severe bradycardia and desats, and 2 extensions on his NICU stay) said reflux did not clue us in. His suction machine was more important to me than his oxygen (he was only on 1/16th, and then 1/32nd of a liter), and I used it repeatedly to save his life.

He also came with special bottles and nipples and fortifiers and thickeners, all in an attempt to get him to take anything by mouth. And a bunch of pink swabs to clean his mouth, since he wasn’t eating. But as this isn’t all that different from what a typical baby needs (and can easily fit in a diaper bag), it doesn’t really count, except that you can’t buy anything good at Babies R Us.

Along those lines, he also had a thermometer to use under his arm every 3 hours, as he had difficulty regulating body temperature. And a tape measure to measure his abdomen, to make sure food was passing through and his intestines hadn’t gone and re-rearranged themselves, following his intestine-rearrangement surgery (Ladd procedure). And a hoard of gauzes, tapes, swabs, creams, ointments, and sterile water containers, for dealing with his stoma, which needed to be done at least twice a day.

The stoma is the hole going from his skin on his tiny abdomen all the way into his stomach. It typically contains his G-tube button (except when he, his brother, his mother, or, you know, anyone or anything, has yanked it out). At this point in his life, Mr. A needed to eat every 3 hours during the day, for 90 minutes at a time. And continuously at night. That meant, for 18 of 24 hours, he was also hooked up to additional tubing (6 feet? 8 feet? Whatever), which fed into a pump and had a feedbag attached to it. We usually hung this from an IV pole, although it too came with a nifty container with a strap. And he needed frequent burping, which required a 60cc syringe. And of course all the little syringes for his medicines.

It also came with his “emergency G-tube kit”—a bunch of (special) syringes, dressings, lubes, catheters, etc., in case his button was yanked. We’ve been lucky and can just pop it back in each time, but it can require trips to the ER and plugging it with whatever is on hand in the meantime. So this kit has to be at his side at all times.

And lastly, on his foot, a sensor leading to a cord, leading to a pulse oximeter. Which, if you can believe it, ALSO came with a nifty container and a strap. We would usually hang this on the IV pole too, to keep it at eye-level and make it easier to hit the mute button.

Add in all the usual baby stuff, and you can see why we only left the house for doctor’s appointments. Add in a twin, and you can perhaps understand why, after I (in a fit of optimisim one fine April day) once loaded up the stroller with my boys and their gear for our very first walk, and the damn sensor fell off his foot and wouldn’t stop alarming and I couldn’t get it back on, I burst into tears less than a block from my driveway.

This post will be continued (at some point), when we add in the joys of TPN (2 IV pumps and bags and yet another nifty container with a strap!).

Last baby days

Today is the last day Mr. A and Mr. D are babies. Tomorrow they are one.

I can’t believe it’s already been a year. I can’t believe it’s only been a year.

But to jump right in: today Mr. A broke his record. His previous oral intake max–achieved on Day Ten of Life in the NICU, was 13 mls. He never met, much less exceeded, that amount, in milk or solids.

Until today.

He took nearly an ounce of applesauce by mouth. Everything went great, until (as always) he pushed some food through his cleft soft palate, into his sinuses, causing a sneezing fit. I am so proud of him! And I am so hopeful that we are turning a corner.

The breakthrough began with a stomach bug. He got fairly dehydrated, and his mouth was so dry that I began dripping Pedialyte (even though it is a “thin” liquid) into his mouth by syringe. His mouth and tongue and jaw movements were incredible!! So I kept doing it. And today I showed his lovely PT/OT (he does have a speech therapist, but she’s…not helpful) and she suggested putting his puree into the syringe. And we tried it.

Happy pre-birthday, little men. May you both eat cake soon.

Testing

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