April 25, 2011

Taking it slow

Merritt had his first well-baby visit on Monday. He weighs 7 1/2 pounds now, and will be 10 weeks old on Friday. He was vaccinated and then for the rest of the day cried out in pain every time he moved his little legs. It was sad, and I wanted nothing more than to curl up with him on the couch and cuddle all day, but Roscoe had needs too, so we all had to compromise.

As much as I've hoped for Merritt's prematurity not to impact him, the reality is that he doesn't act like a 10 week old and is developmentally more or less in line with his adjusted age of 2 weeks 5 days. I hope that we can drop the "adjusted age" talk soon, and that his early birth won't define him as he grows up. In the past few days he's learned to hold up his head in a wobbly fashion, and also seems to be more active with his arms and legs when he is awake. I would love to see a smile one of these days.

He has been monitor free for several weeks now, which has freed us both literally and figuratively. I'm quite exhausted of the weekly appointments, phone calls, and the organizational feats of time and energy required to keep up with all the follow-up for this little guy. I think my pessimism comes from a place of feeling that much of what we are dealing with at this point is unnecessary. Everyone errs on the side of caution, at our expense.

The latest order came yesterday from Merritt's Pulmonologist who is pushing for a barium swallow test, "just to rule out" any abnormalities in his anatomy. I feel like the doctors we deal with are in the business of running everyone through the same slew of tests and procedures without considering the individual needs or risk factors of each patient. I know the idea is to not let anyone fall through the cracks, but I'm not keen to expose Merritt to radiation just because it's the next item on his Doctor's checklist.


  1. I can only imagine how frustrating it is to have to deal with "ajusted age" I truley belive though with how commited you and Andy are as parents that by M's first birthday that will be a thing of the past. I know that seems like 10 million years from now but it will pass so quickly, I wish I could reach out and give you a hug.

    As far as the barrium swallow test it made me think of what we were taught in birth class about intervetion during labor we were giving an acronym of BRAN I can't for the life of me remember what B is but the rest was Risk- of the procedure and of not having the procedure. Alternatives- what are they and is there a more acceptable alternative. Nothing-what will happen if we do nothing at all. I would work though this with the barrium swallow test and if you feel it is not the right thing to do right now stick to your guns ask for alternatives or ask for more time to see of any syptoms crop up that require the test to be done. Your are M's Mama you know what is best for him and don't let anyone tell you other wise or scare you into things because the was born early.

    Your Amazing-Don't forget it!

  2. Jane got her vaccines yesterday too - I was so stressed about it!

    Good for you to question things that docs want to do as routine but you feel uneasy about - go with your gut.

  3. Poor little guy. I HATE when the kiddos have to get shots. Especially when they seem to be effected by them for a time afterwards.
    I'm sure it must be frustrating to have to measure his progression according to his adjusted age, but it sounds like he is progressing well, and that's whats important. My niece was 5 weeks premature and while she did develop more slowly, especially in the early months, she is 15 months now and all caught up and doing everything her peers do.

  4. Although I did not experience testing on Jordan (he was born at 35/5), I did deal with slight delays in his motor skills. If a child normally rolled over at 5 months, Jordan would do it by 6 almost 7 months. He also walked at 13 months. I just want you to know that as time continues his prematurity WILL NOT define who he is as he will catch up and be just fine!! I had to discover that each child is unique and not a clone of another. I have faith that all is well with Mr. Merritt!

  5. Thanks Tammi! In some areas he seems on track (?), and in others he's def behind. I think I'm particularly sensitive to the social markers because so much energy is being put in, and I know how rewarding those first smiles can be. I'm hanging tight, I think he'll be ok with time.

    Yankee: Yes! The decision tree is definitely relevant here. I hate how skeptical I've become of modern medicine! You brightened my day with your comment--thanks for the encouragement.

  6. i've come across your chronicle during our own hospital stay (some months behind yours) & i'm in awe of how similar your thoughts are to mine on the cost/benefit of interventions, defining your mom role in the NICU, etc. Wow, thank you so much for sharing.

  7. I'm so glad that you're finding some sense of community through reading about our experience. It is a really challenging circumstance and I know that it can be lonely and heartbreaking as a new mom to face the realities of the NICU and then all that comes after. Luckily, it isn't forever, although it can seem like a very long road. Give your little one a hug from us :)


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