Article on Congenital Heart Defects

This link is to an article about a recent study done on the brains of babies with CHD's. I saw something about it on the news yesterday so I looked it up to get more info.
Article, Titled: Brains of term infants with heart disease resemble those of preemies

I'm not for sure, but I don't think that Conway's specific heart defect puts him at risk for the type of in utero brain damage they are talking about because he was not cyanotic at birth and never had or has low oxygen saturations. The babies in these studies had transposition of the great arteries (NOT Congenitally Corrected Transposition, like him) or Hypoplastic Left Heart Syndrome. Both conditions usually run kids in the low 80's for oxygen sats and his have always been in the high 90's (100 is best). Anyway, I thought it was still quite interesting and I was excited to see something in the news about CHD's. Anything that brings this issue to the forefront is worth passing on, I think. No offense, but I'm sick of seeing all coverage that autism is getting when it affects a reported 1 in 150-166 children and no one ever talks about congenital heart defects and 1 in 100 births has one and many don't make it to one year of age. Why the American Heart Association spends less than 1% of its donations researching or promoting awareness about CHD's is beyond me. Okay, I'm done with my soapbox for tonight. Thanks for reading!

Good News All Around!

Today was a great day and very reassuring for us. First we saw the GI doctor where his weight has again increased and she is very pleased with that. We told her about his progress with oral motor stimulation and what the child development people said and she was even more impressed. She said they are usually the ones pushing her to have the surgical g-tube placed in order to get rid of the ng tube but if she said they must really have hope for him and that they are not usually that optimistic. That made me feel good. I told her that they wanted a goal of his to be to get onto bolus feeds (like every three hours rather than continuous) so we changed him over today. He will get 100mL at 7a, 10a, 1p, 4p, 7p and 10p. If he throws up less than an ounce each time (less than 1/3 of the feeding) then in about a week we will try giving him 120mL every four hours for a week or so and then if that goes well we'll try the 150mL just five times per day. That would be our goal. I am to call her in about a week to let her know how it is going or sooner if he's not tolerating his feeds.
Next we had a Physical Therapy Evaluation by First Steps. The therapist came to the house and I had to wake Connie about 1/2 way through his nap so it took him a few minutes to really get into it. She was very surprised after reading the therapy notes from the hospital how much better he was doing now. Rather than rating his skill level at a certain age range, she was more comfortable just labeling him as "a weak baby" right now. He is doing some things around 4 months or 5 months, but he has a lot of emerging skills that he can't get full credit for on the rating scales because he doesn't do the entire skill or task. We're focusing now mainly on trunk and head control. His legs and lower body are stronger than his upper body and torso. She gave me lots of positions to work him in and ideas for home therapy. Monday we will develop a plan for future therapy visits and I'll get the report in writing about today's visit.
Overall it was a great day for Connie. Everyone who sees him is impressed. Even other parents in the waiting room! Oh, and the Synagis shot is scheduled to be given Tuesday. Finally!
Side note for all parents out there: There seems to be a consensus among those in early childhood that the bumbo seats and bebe pods are not very beneficial. Everyone who has dealt with him since we've been home seems to agree. They don't help a child learn to sit at all. They do help children develop head/neck strength, but that's about it. So, if you're on the fence about buying one, skip it.

Child Development Update

I just returned home from Conway's appointment at St. John's Child Development where he was seen by an OT and Speech Path to work on his oral motor skills and feeding issues. The waiting room was crowded so I explained his situation regarding the Synagis vaccine for RSV and they let us wait in their conference room instead of out with all the other kids. Wasn't that nice? Renee and Joann were very pleased to see that he shows no reservations about having things in his mouth anymore. He was accepting of the spoon and the chew stick the whole time. That is very awesome progress. They added a tiny drop of apple juice to the ice water we are spoon feeding him and he seemed to like that, smacking his lips a lot and cooing. He does have a "delayed" swallow, which means he needs lots of time between each "spoonful" of water to process and swallow the water. He tends to let it all pool up in the back of his throat and then it becomes overwhelming to him and he gags and sometimes vomits. We're hoping that at the next visit we'll be able to do the swallow study where they add some barium to the water and take an x-ray while he's being fed to see where the liquid goes. Some kids don't send it down the right pipe, so to speak, and so very much volume would be unsafe (aspiration danger)to proceed with. Today he still has that cold so he had a lot of mucous back there that he just couldn't get down. Joann tried using the percussion instrument on him (beating on his back to initiate a cough) which worked, but it also caused him to throw up the 12 noon feeding. All over himself and her! Mom and I thought it looked like a lot of milk (and phlegm) but Joann said that it was probably only about 15cc's. That was very reassuring to me to hear that because I feel like he really isn't throwing up all that much maybe. Obviously he's gaining weight still so that's good. We go to the GI doctor tomorrow where we will ask about increasing his bolus feeds and eventually getting off the continuous overnight feeding pump. Our goal, according to them, is to keep practicing oral stimulation with him and get him to tolerate us adding some flavored juices to his ice water and to increase the amount of bolus feedings and decrease or eliminate the continuous feeds. The filling the belly, emptying the belly thing (rather than 1/2 full all the time)is a more normal thing and so that's what we'd like him to be able to do. They do not feel at this time that the G-Button (tube in stomach) is the answer. Since they see progress they want to keep going this route (NG tube).

Action!

Connie had his Parents As Teachers visit today. He woke up early from his nap with nausea just before she came and wasn't "on" so to speak. He did reach for things and play a little, but acted like he could do without any of the fuss. I think he just wanted to go back to bed so half way through that's where I put him. Mary Kathleen enjoyed it thoroughly as she was introduced to the wonderment of scissors. I was told she "handles them quite well" for her age and experience (lack of). She practiced some more tonight. The other thing they have her working on is using tongs and tweezers to pick up small things. Great fine motor practice!

This afternoon Grandpa George watched them while I went to the grocery store. It was my first time in one since August (Greg's been making short trips here lately). Weird feeling. One I could do without frankly, but the family's gotta eat! I wish I could take a yearly, 3 month sabbatical from grocery shopping. Just not if we have to go through what we've been through just to get out of it. When I got back from the store Connie was more animated and lively-and for a longer period of time-than I've seen him since before the surgery.

I contacted the insurance company (apparently the phones are slower toward the end of the week) today about his Synagis shot to prevent RSV and they told me it could be up to two weeks!! I was livid and called the home health nurse and the pediatrician. Hopefully with them both on it, something will happen sooner.

Improving

Connie's cold seems to be improving tremendously. He still has a lot of junk but the bulb syringe and vaporizer are a big help. Last night he slept from 7:30-11. Got a diaper change and slept until almost 2. Had a small vomit and fell back to sleep until almost 5. Got another clean diaper and slept until 7. It was great.

We're waiting on the RSV vaccine for this month. The shot is supposed to protect against it for 28-33 days and so should be given every 28 days. He hasn't had a shot for 34 days and is now unprotected. All because insurance is dragging their feet on coverage. It is such an expensive shot they won't even ship it to the home health company until they approve it. I asked about paying it out of pocket and getting reimbursed later and our nurse said it isn't possible. I asked her what this means for him and she just said strongly to NOT TAKE HIM ANYWHERE. We don't have big plans on shopping or other outings and haven't since we've been home, but he does have two appointments at the end of this week where he'll be exposed in doctors' offices to whatever else is there. One of them is at St. John's and that means walking through part of the hospital to get there. Yikes! Isn't that frustrating? I mean, they covered it last month, why aren't they covering it this month? They did the same thing with the drug Prevacid. He got a scrip for it last month and they filled/approved it and now they won't approve the refill. Ridiculous. The home health nurse suggested calling insurance myself which I've attempted before and had no luck. You sit on the phone for over an hour without ever getting to a real person and there is no menu shortcut to actually get a person. I've emailed questions via their website which have gone unanswered. Ever since Anthem took over for Blue Cross/Blue Shield it has been this way.

Busy Boy

Here's a movie of Connie playing in his high chair after he woke up/threw up this morning. He had a better night, only throwing up around 11pm or so. He woke up a few times for a clean diaper, but other than that was restful.

Busy Boy 11/6/07

New Appointments Made

Conway will be evaluated at home by the First Steps Physical Therapist on Friday afternoon. Then on Monday the Occupational Therapist will do her eval followed by the Family Planning Meeting where Connie's therapy plan for services will be created by all those who will work with him. It's shaping up to be a busy week. Wednesday Parents as Teachers is coming. Thursday is the OT/Speech visit at Child Development to work on Oral Motor and Friday we have both the GI doctor visit and the PT eval! Crazy!

Giggling with Mommy Nov 5, 2007

Sleep at Last!

Connie got a lot more sleep last night. The trickle down effect was that we did too!He went to bed a little before 8p. He woke up at 11p, 1a, 2a, 4a and 5:30. Two of those times he threw up (one required a change of clothes/sheets) but then he went back to sleep easily. The other times he needed new pants. I'm always shocked when he has poop because I've never heard of a kid pooping in the middle of the night, but then again, most kids aren't eating all night long like him! That's when most of his calories are consumed so it makes sense that that's when he'd need to eliminate.

As I type he just had a huge vomiting spell. At least the tube didn't come up.
Thanks for checking in.

Weighted NG Tubes Rock!

We are discovering that the NG tubes with a little extension and some weights at the end that goes into the stomach tend to stay put a little better during violent vomiting episodes than those without. 2X today he has thrown up his tube out of his mouth. Next time it gets changed or thrown up we will grab the one with the weights to replace it.

Conway had a pretty good afternoon. He took a nice nap and did great with his "homework" again. We tried the biter biscuit after the water on the spoon and he played with it for awhile and then threw it. Belle (that's our dog)liked that and decided hanging around his high chair was a good idea. Little does she know that he rarely has anything to eat in it! He looked shocked that it was gone so I got him another and split this one with Mary Kathleen. She kept saying that, "When Mookie is a baby she can have a biter biscuit." She hears us say that when she's older she can have things like gum, etc. so I guess she figured if she was younger she would be allowed baby food items. Makes sense to her! He chewed on that one some and then lost interest. Mary Kathleen helped put the spoon to his mouth and he seemed very engaged while she was there helping. Please pray for continued progress in the area of oral motor. He is making progress, but it is slow. It seems we have a couple great days and then a bad day. It is hard to remember how far he really has come. I want him to be all the way back, but it won't be overnight.

Along the lines of progress, I'm happy to report that Mary Kathleen has pooped in the potty for the first time!! She's been peeing for a couple of weeks but today was the first time for #2. She didn't even say she had to or anything. I took her to the potty after her nap and when she said she was all done there was a big surprise for me!

Lord, We thank you for continuing to show us your mercy and love. We know you are working in us and through us, especially Connie. Grant him rest and comfort tonight so that he may continue to heal and get stronger. We are trying to remember to praise you, even in the midst of the storm. Even the storm is a gift. Please bless our loved ones and all those pulling for and praying for Conway. We ask these things in your son's name, Amen.

Vaporizer

If you haven't yet, don't forget to set back your clocks!

We dusted off the ol' vaporizer last night and it seemed to help him breathe somewhat better. I guess it will be out all winter, with the dry indoor air. I forgot that when he was a small baby, still in the bassinett, we had his bed inclined and used it then too. Last night he was up several times fussing and acting like his belly hurt. He finally threw up big time around 5am (6am but with the time change. . .). He lost the tube and all. It was only an hour before we were supposed to turn off his pump anyway so we just let him go to sleep and gave him a break. We figured he wasn't due for any meds for a while and didn't get his next feed until the 9am bolus feed--if he can wait that long--so we'll replace the tube then.

Yesterday evening we took a walk after supper up to the playground. It was pretty dark by the time we got there. Bah Humbug! When we got home we had some hot chocolate to warm us up and then it was time for baths and bed. My cousin Meghan stayed with us this weekend to help out. She and Celeste "camped out" downstairs watching a movie and Mary Kathleen slept in her room.