Monday, December 22, 2008

A case of the Mundays...

Being that it's Monday the regular doctor took over again from the weekend replacement. Last week Rhys' doctor specifically said absolutely not to the OT's suggestion that they thicken Rhys' milk to make it supposedly easier for him to eat. Somehow the OT got the weekend doctor to write an order for it (when Rhys did so terrible with his feedings) and today the normal doctor came back and was none too happy. The milk was so thick he couldn't really get it out of the bottle, so when the doctor discovered that this morning they switched him back mid-feed so he had to take the remainder of the feed with regular formula because his milk had already been mixed for the day. So, a whole day's worth of milk (with the thickener) was tossed. Boo, it's hard work getting that milk my friends.

Anywho, today we tried a few different types of bottles trying to help Rhys out with his feeds. I had planned to use the Playtex drop-in system since I already wash a ton of pumping supplies and would like to not add to that by having to sterilize a bazillion bottles a day. Cody also went to get the wide neck Born Free bottles. The hospital uses the standard single-use bottles with a plain jane nipple... probably not a bad deal for kids without Rhys' problems. The goal was to give Rhys a larger base on the nipple in hopes that it will help him with keeping his mouth sealed. He did well with both bottles, and didn't fight the feeding nearly as much. The Playtex seemed to work a little better, but how the heck are you supposed to measure how much he's eaten? We had to keep pouring it into the hospital bottle to see how much was left. Similar story with the Born Free. So, by the end of the night Rhys had both bottles to try, along with two different nipples for each one. If only we could get the boy to be interested in food now! So, he took 1.5-2 ounces for the noon and 3pm feed and then at 6pm he wasn't at all interested in eating, he was too busy snoozing. *sigh* Try imagining 30-35 minutes per feed, every three hours. And during this time you're trying every traditional and some not-so-traditional feeding positions and all but begging your child to take just a little more. It is very frustrating. He is totally capable of doing it, he's done it plenty of times before. But, there is no quick fix to this problem. More than anything I am worried about Rhys losing weight (the doctors are keeping a close eye on it), if we have to stay in the hospital a bit longer I am totally fine with that.

Rhys cooed for the first time today - twice! He was crying when we came in today so I picked him up and was just a talking to him. He was staring at me like he knew what I was saying and he so looked like he wanted to talk right back when all of a sudden he cooed. Oh gosh it was very unexpected and oh so cute. I think it surprised him too. Speaking of talking, we also had a nice long talk Rhys' doctor today. She was not at all discouraged with what happened on the weekend, in fact she said she was sort of expecting it. On Friday she felt like Rhys wasn't acting like himself so she thought he might be getting sick. So far that doesn't seem to be the case (thank you Lord!). She also does not think Rhys' problems stem from reflux because even though there can be reflux without spitting up, she doesn't feel like Rhys is exhibiting any of the other signs. Instead, she thinks Rhys' problems are something he is going to have to outgrow based on what he's been through. She said there are some signs of CP, like tightening in Rhys' trunk and in the way he sometimes arches, but being that he is so young you do not diagnosis it at this point. After overcoming so much with Rhys this is one of the major things Cody and I were dreading having happen. But the doctor was very positive and said she feels like it is something that therapy can correct, and already he seems to not do certain things as badly as he used to. His hands and feet are not tightly curled and he loosens up and "slouches" when he's sitting. He is very alert, is acting age appropriate, and she does not feel this will effect his cognitive ability in the least. She said he should still meet all of his developmental milestones, he just might be a bit delayed. Of course only time will tell, but I am already anxious to start working with little man to try to help him out.

The home health peeps came to the hospital today to give Cody and me training with the apnea monitor and portable oxygen, and the home oxygen tank is being delivered tomorrow. Rhys passed his car seat challenge last Friday (with a little help from Mom and Dad holding the pacifier the whole hour). Woohoo! We got his meds from the pharmacy today and got CPR training finished. All we need is to do Care by Parents so we can finally walk out the door with our little guy! Still no definite date nailed down for Rhys to come home, but we're inching closer and we are prepared for when that happens... the question is when will Rhys begin to cooperate?! They sure do start ignoring your instructions at an early age.

6 comments:

Shane & Ambra said...

It sounds very frustrating with the bottle feeding... My daughter a former preemie only would nurse? She was on O2 & would desat or just simply refuse to suck off of the bottle. Our lactation consultant at Texas Children's said it is probably because she doesn't want another tube feeling in her mouth(she was intubated for so long). So, when we got my daughter back to her original hospital(born at), I stayed up there for the whole weekend & let her nurse on our own schedule. However, she still did require the fortifer, so I had to wear the bag when nursing. It was a pain, but when you are ready to go you will do anything! My daughter was the first one from her hospital to every be discharged not nippling all her feeds in the NICU. We would do pre/post weight before & after nursing. You might want to ask the doctors about this if you plan on breast feeding when you get him home. Will keep praying for a soon arrival at home!

amyoutlaw said...

That's sooooo frustrating about the bottles. I know Max isn't a preemie but he hates the bottle so I went out and bought what Brian calls the "plastic tit" (crude Brian, very crude) by Adiri. Hoping that will work. It has a wide base and is soft. Hang in there!!!!

Crystal M said...

I know bottle feeding can be so frustrating, hang in there. When I nursed Colton, he would literally eat from 45 min. to an hour and then want to eat again an hour and a half later. It was constant. I felt like a living breathing feeding machine. (as much as I loved it, it was exhausting) Then when I couldn't produce enough we had to go the bottle and I think we literally tried 5 or 6 different ones before we ended up with the Playtex Ventair system with the natural nipple. He had colic so bad nothing seemed to work, yet he was as hungry as a horse, so he would eat and then cry for hours. It will get better, I promise. I really thought with Colton it was an age thing as well. Rhys' whole world has been rocked and he may just want to do it on his terms as frustrating as that is. Just wait gal - they seem to do a lot of things on their terms despite gentle coaxing by mommy and daddy! :) We love y'all and praying for your arrival at home with little man. We hope y'all have a wonderful Christmas.

Brian said...

Bottles take an extreme amount of patience. After all, who wants plastic when they can have mommy? My advice - make Cody do it and then stick with the old-school bottles. As for the new designs - if it ain't broke, don't fix it! That's the problem with the 'PT' from Amy's comment and other newfangled devices - there is no improving on a design that has worked on 6 billion babies.

Kelly said...

My son was also preemie and was very lazy with bottles. The only kind he ever did well with wad Dr. Brown's.

Mary Anne Whiteley said...

Both of my kids had issues with "sealing" around the nipples of bottles and the only one that worked for them was Avent. You can even buy an adapter so that you can pump directly from the standard pumps (like Medela, etc) into the avent bottles. http://www.mybreastpump.com/medelaaventbreastpumpconversionkitpage.html is what I used.

Most people I know who have had preemies, though, had best luck with traditional nipples or the dr. brown's.