Formula

It's amazing how Dominic's personality changes when he does not get the MCT formula that he needs. I ordered last week but someone messed up at Vitaflo and so I called frantic yesterday that the formula is still not here. So last night was his last formula bottle. For the night feeds I breast fed only, then breastfed this morning again. By 9:30am he just wanted to sleep and has been so fussy. In 8 hours not having the MCT formula = a fussy over tired baby. We received the overnight shipment today and I gave him a bottle, he's back to his normal happy self. I'm shocked at how the lack of Medium Chain Fats affect him. It makes sense though because he cannot burn the Long Chain Fats for energy, with out the Medium fat he can burn he had no energy.
I hope to not run out of the formula or MCT oil when we start that. I'm gonna have to figure a way to have a good stock pile of it.

Things are looking up??

We had Domino's metabolic genetics appointment today. He's doing very well, growing like a weed. The last lab results on fat were very good, in the normal range so that means his diet is working. He had slightly elevated CK levels (muscle/heart damage levels) that I was worried about but the Doctor said they were nothing to worry about - woo hoo! He will get another Eco cardiogram at 12 months of age to be sure his heart is not enlarging.
We also got a Glucose meter to check his blood sugar when he doesn't eat very well or starts to get sick. We have to take him in if it's under 60 but we are not to rely solely on it, we are supposed to really rely on the way he is acting when he's not feeling well. So irritability, lethargy like when he was a newborn and of coarse if he's not keeping anything down we'd go in. We got through his first cold and he did great, kept on eating!
We found out today though while he is still on formula & breast milk until he's a little over a year he is only allowed 2 grams of fat from food, this is such a small amount! One baby food jar of chicken & rice dinner has 3 grams of fat! So we will mainly feed him only fruits, veggies & baby cereal until he's over 1, anything we give him for table food at first will have to be fat free. We didn't expect it to be that low of a number. Eventually he will be able to have more fat. So that was the only downfall to the visit, overall he is doing much better than we thought he would.

Aidan had his DNA testing done so that we can be sure that he is not VLCAD, it will be a major crisis if he is, trying to get him to eat fruits & veggies and no fat would be impossible! We highly doubt that he would have it, if he did it would only affect him mildly obviously, he's always been a healthy child.

He Poops!

Finally, he is pooping regularly. This has been so difficult for us. Dominic has had constipation and pooping problems since a few days after he first started the Lipistart special formula he's been on starting at 1 week old. Before the formula he was a regular pooper, 4-5 times a day. You'd think we wouldn't complain about not having to change poopy diapers but it's really hard to watch your baby struggle trying to get one out. Since we could not change formulas, we've had to force it or it doesn't happen, we forced it by by suppositories, kyro syrup and even prescription laxative almost daily. Since he started solids this week I've gotten a poo every day without doing anything!! Woohoo! Big milestone for us!

Captured the Smile!

Dominic has been smiling for a long time but he never lets us get it on camera, the second we bring out the camera he stops. So I finally got one!
He's been rolling around all over, giggling at all of us, he's one happy baby!

He seems healthy, is he?

I've recently had the question "he seems perfectly healthy, is there really something wrong with him?" asked about Dominic. So I want to answer this for anyone wondering. He is a healthy baby, doing very well. He is however missing/does not work the enzyme that breaks down fat. He will live a normal healthy life as long as his very low fat diet, his supplemented medium chain fat, and his more frequent feedings that are needed are followed. We do have to always keep an eye on him making sure that he is acting "normal" but again we normally would only have an issue that would require immediate hospitalization if one of the following happens:

-He gets the flu - *it is very important that we are not around people that are sick/have just been sick*
-Illness/infections
-He has diarrhea
-He has been out in the heat too long, overly heated
-Excessive exercise
-He is dehydrated
-He is not eating for some reason
-Going too long without food; currently it's feeds 3 hours during the day and 4 hours at night since you use less calories while you sleep
-Low blood sugar (we get a glucose checker soon)

Any of these would require hospital care and a continuous IV until he is better.

This would be called a metabolic crisis - here are some symptoms of one:

* extreme sleepiness
* behavior changes
* irritable mood
* poor appetite
* fever
* nausea
* diarrhea
* vomiting
* hypoglycemia

We have so far not had any problems, he has never been sick and he eats like a champ. We are just extra cautious when we are outside for long, we feed him on a strict schedule. He is doing much better than Jeff and I thought it would be. He had at birth abnormally high risk fat levels, they are now in the normal range with his diet and get checked regularly.

Sadly for me, Aidan will not be able to go to Preshool this year, out doctors think it would be best if he is not around so many germs that he could bring home to Dominic. As long as Dominic is doing well next year Aidan can then start Preschool for 1 year before Kindergarten. Aidan is actually very happy about not going to Preschool, he thinks school is some bad place for some reason. I'll be working with him at home.

So to anyone wondering, I hope this helps explain!

What a big boy!

We had Dominic's 4 month check up appointment today, he is so big! He's in the 80th percentile for height at 26 inches & in the 50th percentile for weight at 14 lbs 15oz~ this is so big for us as Collin & Aidan were only in the 5-10th percentile for weight and 50th for height. He's doing great developmentally as well. This formula with Medium Chain Fat is making him a super baby, he's so strong, which is perfect for what he has, we want him to be as strong as possible!

The initial shock

I had written this shortly after we found out about Dominic

We had Dominic on April 3rd 2008. He seemed like a normal newborn for the first 2 days of his life. When we came home I noticed he did not eat very well, he also did not have the fast sucking motion that Aidan and Collin had. He also seemed extra sleepy, barely waking up to eat even.
On April 9th, we received a call from out pediatrician’s office – they said that a result from the newborn screening had come back abnormal, they did not tell me much about it other than we needed to contact Children’s Hospital immediately. Of coarse I was already crying and very concerned over this news. I then contacted Children’s Genetics Department and was put in contact with the Metabolic Geneticist there. The words they were using did not make sense to me, they said he tested abnormally high for VLCAD –


I was told we needed to come in first thing in the morning for additional testing. Also they told me I needed to feed Dominic every 2 hours. They asked how he was doing, I had let them know my concerns for the lethargy/very sleepy and not eating well. With that information they wanted to see us as soon as possible so we needed to get the the emergency room for monitoring and tests. We watched Dominic getting a catheter, getting poked all over because his veins were too tiny to get blood from for all the testing they needed to do. We had a long hard night with no sleep watching our newborn that we thought was healthy and we still even at the hospital had no answers. Finally in the morning the Specialist visited us and explained what he has. We also met with the Dietitian and were told that Dominic would have to eat every 2 hours through out the night for at least the first year of his life. I could no longer fully breast feed and had to now supplement with a special formula every other feeding.


For the first few weeks after we found out our new baby had this disorder we were both so upset and having a hard time dealing with it. We couldn’t believe that here we had had 2 healthy boys together and the whole time we had a 1 in 4 chance of having a child with this disorder. I think I cried almost every time I looked at Dominic for the first few weeks of his life. Jeff & I would talk about how bad we felt for him and that it really makes you look at life when something difficult comes your way. Granted this could have been much worse, this is something that with proper care is manageable and Dominic had a good chance of a healthy long life. I’m so thankful to God that he is okay and doing well.