Thursday, March 1, 2007

Project Muffinhead Update

This week we feel almost as though we are back to normal. We have lingering fears that will likely last a lifetime. Someone said to me over the last week, "Well, that won't be the last time you save your son's life". It was a poignant statement and one that somehow normalized the intensity of our situation.

The last week has been filled with more medical appointments that one would think possible for a little being pushing nine pounds. Miles has been prompt and quasi-present for all of them. I think his favorite appointment would have to be a tie between chest x-rays (which involved sleeping on his side) and the consultation with his sleep doctor (who knew there was such a specialty!) which in his case involved lots of sleeping while mom and dad asked questions.

What we mostly know is that we will never know what happened last week. We have gathered quite a bit of information about our son, which quite frankly, makes me feel more comfortable about some of his concerning behaviors . . . . oh you know, things like wheezing, pulling breaths against his chest, rapid respiratory rates, head bobbing while breathing and not to mention a few others.

The best news is that the sleep study suggested that Miles' heart rate, oxygen saturation levels and brain activity were all very normal. That led us to discount somewhat a couple of the possible explanations (seizure, apnea) for last week's episode.

Miles has a mild form of bronchial pulmonary displasia (BPD). This is a chronic lung disease that he will outgrow. It is stiff lung tissue that is a result of being on prolonged assisted oxygen. As little Miles grows new lung tissue, he will outgrow this condition. His condition is mild enough that it will not be treated at this point. We will visit his pulmonary doctor in six weeks to make sure that the condition is not worsening. It reinforces our need to be vigilant about his level of exposure to public places. Dean and I have also adopted mildly compulsive hand-washing practices.

Miles also has reflux or GER. This is likely the cause of his episode last week. I believe this only because I saw a similar, though more mild, event occur yesterday that was clearly a reflux event. Miles' reflux relates to the immaturity of the muscles around his esphonageal sphincter and his windpipe. It is possible that he has liquid (as in breast milk) pooling up between the two, which ultimately causes him to choke. We will undergo another test to determine if this is the case and if so, the treatment is an easy one--thickening breast milk with rice cereal to make it easier for him to completely swallow. Miles' choking episodes are very severe and will require him to sleep on a specially fashioned inclined wedge. Somehow I find it ironic that I had to lie with my feet up in the air in order to get him here, and now that he's here, he has to lie with his head up in the air.

Yes, going to sleep at night is a little scary, but we take the precautions that we can and we believe as we have all along that our son is going to be ok. So we shut our eyes and know that the little Muffinhead will be letting us know sooner rather than later that he's alive and thriving and ready to EAT!

Every sleeping breath Miles takes is punctuated by auditory accompaniment. Many sounds remind us of rare bird noises and other tracks simply sound like a family of chain saws. When things go quiet . . . we wait for a few seconds and take a closer look. So far, so good.

Is Miles breast feeding? Sort of.... Miles came home from the hospital drinking breast milk from a bottle. Thanks to the wonders of pumping, we have several thousand ounces stored in a deep freeze in our garage. So, if breast feeding doesn't work, he will be drinking the stuff for a while! But really, Miles and I have been working hard on transitioning most of his feeds to breast. We have a breast-feeding scale in our home on which we weigh him before and after each breast feed to see exactly how he has done in this department. We are working closely with a lactation consultant on our transition plan. As like all things with Miles, it's a little bit forward and a little bit back. I am confident that we will find a spot that feels right for us. Yesterday morning, Miles had his entire breakfast from the breast (which we have not duplicated yet, but we are hopeful).

Over and over again, Dean and I are showered with well wishes, prayers and compliments of how we are handling our situation. We are so thankful to have this support, and don't know where we would be without it. As a result, we are doing really quite well. Yes, a vacation has a certain draw to it right about now, but life is not so bad for us. Every condition that our son has been diagnosed with is something that he will almost certainly outgrow. Finally, we are able to settle in a bit in our home and begin dreaming about sharing the world with the littlest Falvy. Life isn't so bad.


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