Little Wiggler

Update: She weighed in at 13 pounds, 12 ounces! good job little one. Ice cream sundaes all around.

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Veej has her weight check scheduled this afternoon.

If she weighs at least 13 pounds, 10 oz then she is right on target for a baby with heart disease.

If she weighs at least 14 pounds, 5 oz then she is on target for a regular (ha) baby.

So anywhere in between there will be great. If she weighs less, it might be time to increase the calorie content of her formula. If she weighs more, the chances will definitely increase for her not having to have surgery until next year.

I will report back! I have a good feeling about how it’s going to go. (hoping I don’t have to eat my words later).

We saw the cardiologist today. Veronica is doing so well. We’ve come a long way from those first scary days. This little girl is a trooper! Here’s the info we have from our meeting today:

Does she still need surgery?
Even though she is currently doing great, the cardiologist believes it would be extremely rare for a baby with Veronica’s type of defect to be able to skip having surgery. Doesn’t mean it can’t happen, but in his experience, she will need the surgery eventually. We just want to wait until it’s really and truly necessary.

When will she have the surgery?
We’ll be watching her weight gain as a sign of how hard her body is working. When her heart eventually works so hard that she’s not able to maintain a steady weight gain, we’ll know it’s time.

What are you doing to make sure she keeps gaining weight?
Right now she is getting an extra 2 calories per ounce with her special formula concoction (an extra 2 calories per ounce over what regular formula provides). She eats 25-30 ounces a day so that’s an extra 60 calories per day more than she would be getting otherwise. She is banking those calories and it’s adding up as extra pudge on her baby belly.

When she starts becoming more active those extra calories will be used up as her heart works harder and she’ll begin to see less improvement on her weight gain. When that happens, we will keep increasing the caloric content of her formula in order to keep her on an upward growth arc. We’ll go to 24 calorie formula, then 26, etc. As she gets more and more active we’ll see less weight gain and when we’re no longer able to match that with food intake, we’ll know it’s time to repair her heart.

Can we take a commercial break to see how long and lean she currently is?

Are we talking surgery a month from now, a year from now, or when she’s sixty years old?
Up till now she’s been pretty sedentary. But now that she is entering the active stage of her life, we’ll be able to see how quickly she uses up her calories. If she starts burning those calories up immediately we may be looking at a timeframe as early as this fall. But if she continues to do well, we could be looking more at age 1-2. The next few months when she begins to crawl and move around more will tell us a lot.

What’s the next step?
We will do another weight check in 3 weeks and we’ll see the cardiologist again on her 6 month birthday.

VJ weighed 11 pounds 13 ounces.

If you noticed in the previous post, this puts her directly in the middle of the range we wanted her to be in. We’re going to keep doing this food plan since it is so successful. I do have 150 ounces of frozen breastmilk that I want to use up so the pedi gave us a way to enhance the breastmilk with extra calories too. Now I’m just wondering if she’s going to get so used to the calorie rich food that she’s going to demand whoppers and big beef n cheddar when she moves to solids.

I’m going to try recommending to her that she conserve calories by not crying so much.

Veej has her next weigh-in today to see if she is still on track.

She needs to weigh between 11.9-12.1

Stay tuned!

We had a great meeting with the cardiologist today. The 22 calorie formula worked like a charm and Veronica gained 9 ounces in 1 week!

Weight-wise, she started out at the 50th percentile, then dropped to the 25th, and when we had her weighed last week she had dropped again to the 20th. But with this huge weight gain this week she is back up to 25%. As long as we stay on the 25% arc, everything is good. The doctor is very pleased and we are going to continue with this high-calorie formula plan. She is still getting breastmilk too but after seeing such a dramatic difference in the formula versus breastmilk, we may start the weaning process and break out the freezer stash. By using pumped breastmilk we can add extra calories to it so that she is consistently getting high calorie meals.

Her murmur is still a grade 4, meaning that her heartbeat is very loud and has a “thrill“, which is a tremor or vibration that can be felt. If you ever get the chance to put your hand on her heart, you should do it.

The excellent news is that the cardiologist feels that Veronica is now in a holding pattern and that we can be more conservative regarding her surgery. We can go back to waiting a while so as to give her brain more time to develop for going on the heart-lung machine.  Her liver is still enlarged and lungs are too but he feels we are still better off in the long run waiting as long as possible to decrease the surgery risks. We will do another weight check in 3 weeks to see if she is still doing well on the food plan and we will see the cardiologist again in May to make sure she is still doing ok.

On a funny note, Veronica was referred to as being ripped today. (The doctor was commenting on how he has a few patients with her long and lean body type and how they don’t have the rolls and cellulite like other babies, but instead have six packs by 1 year of age and are doing pilates.)

I had a long telephone conversation with Veronica’s cardiologist yesterday to discuss her weight gain problems.

If you’ve spent any amount of time with us you know that we are constantly feeding her. This isn’t an issue of not eating enough, it’s just that her heart works overtime and her body burns the calories she needs to be storing up.

We have a plan of attack. We’re going to put her on 22 calorie formula. Basically it’s a way of concocting the formula so that each ounce has 22 calories instead of the usual 20. We will take her in next Friday to be evaluated again by the cardiologist. If she doesn’t improve, I assume we will go up to 24 calorie milk and so forth and so on until we see improvement. Right now I am still breastfeeding but for the time being she’s going to be receiving more formula so that we can plump her up.

Ok I do have words. Just none for the title. I can’t think of anything fabulous enough to say to express how happy I am right now.

This is more Synagis talk, so I’ll try to recap quickly: RSV (lower respiratory infection which is very dangerous for babies) has a season where it is contagious: September through April. If a baby with a heart defect or lung defect gets RSV, it can potentially be life-threatening. There is a shot called Synagis that provides immunity to RSV, but each shot is only effective for one month. Therefore, in order to be fully covered, you should have the shot every month from September to April. Synagis is very hard to get–it’s extremely expensive (it starts at $1,800 a month and goes up from there) and is only given to babies who are born premature or have heart or lung defects.

(here’s a CNN article about RSV)

In our case, our insurance was not given the correct information the first time Synagis was requested. Because of that, we were denied. We have been going through an appeal process to be covered but it’s a lengthy process and we are dealing with strict time constraints here with April 3rd being the date when she needs to receive her next shot.

And here’s the amazing part:

[post snipped to protect the identity of some pretty amazing people-May 8, 2008]

Our cardiologist sends a letter to us and our pediatrician after every visit detailing what happened at the meeting, what his findings were and what he believes the best course of action is for the future.

He does describe these things to us during our meeting with him but of course it’s so much information and so technical that things can easily be missed. I love the letters because it refreshes my mind and sometimes I learn things that I hadn’t caught in person.

We just received our most recent letter and in it the doctor has finally listed a timeframe for Veronica’s surgery: late spring/early summer. It’s a little earlier than we had expected but I’m pleased to have some specifics finally. It looks like we have only a few more months before this thing becomes a reality. I feel relieved and yet scared at the same time.

We had a pretty good visit with the cardiologist today.

The doctor is once again satisfied with her weight gain, but we have to do a weight check again at the end of the month. Because of her heart condition it is normal for her to gain half of what a ‘normal’ baby would gain in a month, so she’s technically doing fine on the charts, but they would love to see her be on the higher end of the scale.

Her heart murmur has graduated from a Grade 3 to a Grade 4. Murmurs are rated on a scale of 1-6 with 1 being the quietest and 6 being extremely loud. During the echo he saw that there is evidence of some repair work trying to be done on the hole, which is fantastic. Unfortunately he does not feel it will be successful, as in his experience he has never seen an infant with a Grade 4 murmur heal itself.

The conclusion of the meeting was very positive. She is still compensating perfectly, showing no symptoms of being out of breath or having her quality of life affected in any way. She does not need immediate surgery and we are still looking at being able to put it off as long as possible for her to mature. No impending need to do anything about it at this moment. He increased her dosage of heart medicine and we will see him again in April for another checkup.

Veronica got her synagis today! I feel like I can finally be comfortable taking her out into the world. Our doctor’s office also reassured us that no matter what she will receive it in April, even if our insurance denies it. They feel it is just too important and we cannot risk letting her go without it during the RSV season.