carpet

We have been talking about replacing the carpet in our house for almost three years. The biggest reason is the noise level. Our home is open and the ceilings are high so everything echos. The other big problem is that a few weeks after Ethan was born the boys room and guest room flooded and we ripped up the carpet, let it dry out and laid it back down. After Molly was born Nathan was home for two weeks and only a few days in he decided he couldn't handle the noise level and basically ordered the carpet. Well this was only a few weeks after Molly was born and in the middle of us finding out she had a large hole in her heart and galactosemia. Needless to say things were already chaotic but we thought why not add to it and rip out our carpet. So we ripped out the carpet and when Nathan was pulling off the baseboard in Molly's room we found mold. We then had to cut out all the mold and replace the insulation and drywall. 

 We also ripped out all the laminate in the living room and put tile down in front of the fireplace.

 Due to Nathan's school and work schedule we were forced to live like this (all our stuff in the kitchen and concrete floors) for a few days. It was a ruff few days but we made it through.

 Now we have this wonderful new carpet. Our house is so quiet and the boys love all the space they have to rough house. A lot of people questioned our decision to pull out the fake wood floor and put in carpet but honestly we couldn't be happier about the decision. 

health update

Molly and I have spent a lot of time at the Doctors this past month and there have been plenty of appointments with nothing but grim outlooks but this week we had two really good appointments.

Monday Molly had an appointment with her cardiologist and the hole is still there but other then the size of the hole and a slightly enlarged left ventricle she looks good. Her growth is their number one concern at this time and she is growing. Because her Dr. is so pleased with how she is doing we don't have to go back for another EKG and Echo for another month. It's amazing how we went from her first appointment where he was certain she would need surgery at three months to this last appointment where he just wants to monitor with the possibility of not even needing surgery if she continues to do so well. So as for her heart we will continue to play the waiting game and see how things go. 

Today we heard back from her galactosemia test results and we were able to talk with the specialist in Austin and her body is producing about 15-20 percent of the enzyme needed to break down lactose. So as for now we will continue to keep her strictly on soy formula because anything else would be to much for her body to break down and become toxic. In 5 months (October) we are going to Austin to meet with the specialist and he is going to run some tests to see how well her body tolerates lactose. Those tests should give us a better idea of what her needs are as far as her future diet. As the liver matures it is able to process things better so there is a hope that as her liver matures (it won't ever create more of the enzyme) it will be able to handle very small amounts of lactose so an accidental ingestion of something dairy won't be as toxic as it would be now. Basically we won't know anymore for the next 5 months.

We do feel blessed and like our prayers are being answered. She is a strong little girl and we love her so very much. We feel blessed that she has so many people who love her and are concerned about her. The outpouring of love and support for both us and Molly from friends (especially those here in Corpus) and family has been  wonderful. So please continue to keep her in your prayers because it is working.

one month

Weighs 7lbs 6 ounces
21 inches long
sleeps 2-3 hours at night
drinks 2-3 ounces of formula
loves to be swaddled
loves to have a pacifier
gets pretty fussy at night but is great during the day
loves to be held
doesn't like baths
doesn't like having her diaper changed
gets a little to much attention from her brothers
is really gassy since switching to soy formula
sleeps in the swing (not moving)
has lost all of her yellow coloring and is now perfectly pink

Galactosemia

Oh sweet child of mine, you have been poked and way more then anyone your tiny size should ever have to. Nonetheless you have been a real trooper. You are far healthier then anyone expected and you are a fighter.

Let's put Molly's heart condition on hold right now, after all there isn't much we can do while we wait for her body to either close up the hole or not. So in the meantime we are dealing with something new.
Last week I got a call from the pediatrician and he said there was a potential problem with her newborn screening. He wanted us to meet with him the next day so we could talk about her results. After meeting with the pediatrician we learned that Molly has galactosemia. Galactosemia is a rare genetic metabolic disorder that affects an individuals ability to metabolize the sugar galactose properly. We don't know exactly how serious Molly's case is but we know her body is not producing enough of a certain enzyme that is needed to break down and digest lactose. Friday Molly had several more blood tests done and we should get the results back sometime in the next 2 weeks. As soon as we get that back our pediatrician is going to talk to a metabolic specialist (which there isn't one in Corpus so we have to talk to the one in Austin) about what Molly's needs will be. We are hoping that her case isn't very severe and so far with the testing that has come back that is what it looks like. This means that the only real change will be in her diet. Right now we put her on a soy formula because breast milk is no longer an option since she can't digest lactose. As soon as she is on solid foods we will have to adjust our families diet to cut out dairy. It's going to be a drastic change for us but if it is what Molly needs to be healthy we are happy to do it.