Eclectic Update

The first batch he was crying the second he was sleeping,
oh well, it's a memory.

On the Diet and Growth Front: The soy formula helped with gassiness but caused constipation.  His vomiting increased and I asked for some advice from a website for moms of children with heterotaxy and they felt like I did - constipation causes vomiting.  I called the pediatrician's office for some over-the-phone advice but they felt Keller should be seen, on a Saturday. (I have learned quickly if things are going to go downhill they are going to go downhill on a Friday night around 5pm or on a holiday). We saw the doctor that was on call.  He was very nice but was unfamiliar with Keller's case. He was more concerned with how Keller was breathing, which was slightly worse than "normal." I did eventually get permission to try a suppository which the reason I called in the first place.  It did help but was a temporary fix and soon we were needing more guidance.  The following week we started giving him some prune juice; it turns out he needs 2 tsp of prune juice in his tube a day to keep things moving along.  Developmentally, Keller seems to be keeping somewhat on track.  He tracks toys and people, is staying awake longer, and is starting to "coo" a lot, and trying to hold his head up.  He is not as smiley as Norah was but he's had a more difficult road and I'm not sure but I would think backwards guts would make digesting more uncomfortable.

So here is what his weight gain looks like lately...

        July 19 - 8lbs 5 oz

        July 24- 8lbs 7oz

        July 30-8lbs 11oz and 22inches long.  Started rice cereal
       August 7- 9lbs 2oz!! (weight check only, didn't see a doctor)

As you can tell, he's not been gaining an ounce a day.  However, his pediatrician seemed fairly happy with how we are progressing.  Keller was getting close to 400 calories a day from milk and formula.  His doctor suggested adding rice cereal to his milk for two reasons. The first reason is to help "weigh down" the milk and aid in reflux.  The second reason is added calories.  Just by adding a tablespoon of rice cereal to every 2 ounces of formula he is now getting a total of over 520 calories a day.  He can continue to get his milk and medications through his tube even with the cereal added. It seems to be helping, he still spits and vomits but it does seem to be less... plus, anything he keeps down is "higher octane" nutrition and we are hoping for some serious rolls soon.  He also got his two month shots - the standard ones and a few extra for good measure.  Things such as meningitis and pneumococcal. The NICU told us that we needed to be hyper vigilant in regards to germs until 2 months and then still be very cautious.  Now that we have reached that time Keller is meeting more family and we are slowly increasing visitors as long as they have been well and not been around sick people.  

On the Cardiology Front: Keller has been sweaty, when he gets upset it takes his nostrils flaring to get his breathing back to normal and he grunts when he's breathing 80% of the time.  All of these things made me think it was time to increase his medications. Today we saw his cardiologist and he also felt it was time to increase medications.  He also said that it is time to start communication with Duke regarding surgery. The echo did not show any more valve leakage than before but Keller is working hard to breathe. He feels that increasing the Lasix and adding Captopril will make Keller more comfortable and will buy us several more weeks before surgery but we are now talking weeks and not months before surgery. We're looking at a maximum of 6 weeks at this point, according to what we were told today. We did meet the surgeon at Duke while I was still pregnant but they have not yet met Keller.  Our cardiologists feel that Duke will want to do their own imaging, then consultation among their group, then scheduling and they feel it is best to start the process now. I told Phillip weeks ago that the day we hear "it's time" would scare me.  Even though we knew the day would come that we would hear that news, even though we have known for 8 months or more that he would need surgery, even though....it is still more real.  It's still really scary. Even though God has paved the way for all of this it doesn't make me excited about my baby undergoing heart surgery. I know this is the path we must take and to an extent I am *okay* with it.  But it is really stinking scary.

It seems that two year olds have a lot to offer in the wisdom department or at least in the stop-and-make-you-think department. Several of my friends lately have posted sweet moments with their toddlers and though I have a sweet moment with Norah everyday but one moment really got my attention.  She is a huge helper with Keller and she LOVES him.  I really feel that she does.  

Norah "Splash a puddles"

She wants to know where he is, kiss him, soothe him and help wash him.  Sometimes Keller loves his bath and sometimes he doesn't.  I'm beginning to think Norah's presence while in the tub may make him less at ease.  This time he was crying and my sweet Norah says "Don't worry buddy, you've got Mommy."  It took my breath away.  It made me feel so appreciated.  She was telling him that she felt secure with me and he should as well.  She was saying that he could lean on me completely. As I mulled it over I realized that right now, I'm like Keller.  I have so many people telling me "Don't worry Allison, you've got God."  These people are telling me because they have been able to rely fully on Him and are trying to convey the trust that can also place in Him.  And they are right! I'm not always crying for the most part; I am truly having to rest in His arms just like Keller does with me.  God has had me. But sometimes when we are talking surgery, when the vomiting is bad and he looks like he is struggling to breathe, I need to hear "Don't worry...God." And He always provides someone to push me forward.