Mar 26, 2012 -Jacob is FINALLY healthy and eating right! It has been a long journey, but we've made it! I always have these fears that we are going to go to the doctor and they will tell me Jacob is not doing as well as expected, thus I am failing as his mother. I know this may sound silly, but day to day I am always having to make decisions on Jacob's care and needs (which are constantly changing.) I always confer with Andy but he always defers to my judgement because I have had more experience when it comes to medicine (albeit very little experience.) This has put a lot of pressure on my shoulders because, as a perfectionist, I feel Jacob's failings will be reflections of my failings.
Two weeks ago we went to a follow-up appointment and all my fears were put to rest. Although Jacob has been very sick with a respiratory virus and the stomach flu, he has managed to grow and gain weight. The doctor and nutritionist were very pleased with his progress! They couldn't believe how well he was doing despite how much he has been going through. We were given the go ahead to let Jacob determine how much he wants to eat (or not). I can't tell you how much pressure that relieves! Since then life hasn't seemed so straining day to day with worry. Jacob is telling us when he's hungry and can actually push his bottle away with his hands now when he doesn't want it. (He's getting pretty good with his hand motor skills.)
We had another appointment today with Jacob's cardiologist and his echocardiogram looked great! He is oxygenating at 100% on and off his oxygen. The doctor lowered Jacob's medication for pulmonary hypertension (Sildenafil), and if he continues to remain steady, I can discontinue it altogether in three weeks! She also said she was comfortable with Jacob being off his oxygen. WHAT?! Those are words I didn't know we would even hear his first year! Since the symptoms of having trouble with weaning the medication are the same as taking him off the oxygen, we decided to keep him on the oxygen for as least the beginning of trialing him at the lower med dose. Do you know how amazing it will be to be able to carry my baby without being tethered to a machine?!?!?! I was buzzing with excitement all the way home from the hospital!
We head back to the pulmonologist, surgeon, and nutritionist next week for check-ups and a chest x-ray. Jacob has had a chronic partial collapse of his right upper lobe of his lung. It has pretty much been this way always and no one is really sure why. Jacob's surgeon has discussed the possibility of a CCAM/CPAM (Congenital Pulmonary Airway Malformation)-more to come on that if it is the real culprit. If there is still no improvement, Jacob will be having a c-scan and possibly some other tests to see if they can determine the true cause.
For now, we are all SMILES!!! : )
So pleased for you that things are going so well, Katy! How fantastic that Jacob has continued to eat and grow well through his illnesses. Good job, mama!!! I know that feeling of responsibility and fear of failing, oh my yes, but you and Jacob are a flawless team. Breathe!
ReplyDeleteAnd yes, I do! I DO know how amazing it will be to not have your baby tethered to a machine all the time. I remember when we were told Samuel could have room air "sprints" for up to 2 hours. I used to take him off to go pick up my kids from school so that I didn't have to hook him up to the portable tank and lug it blah blah. It was such blessed FREEDOM. It's all coming your way, Katy. And Jacob isn't even 6 months old! AMAZING!
Blessings.
Corinne
Great news! I know, you know, any lack of progress, does not reflect on your parenting... but I can imagine how hard it must be to think this way knowing that he fully depends on you. You are doing a wonderful job. I hope you guys have a great week next week together as a family.
ReplyDeleteSo thrilled at this report! You are such a trooper.
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