Musings of a Marfan Mom

Well-Visits

| 13 Comments

Yesterday I took the boys for their well-visit checkups: the Menininho for his 2nd birthday visit and Baby J for his 2 month exam. I had a long list of things to discuss, especially for M since he only goes once a year now.

First up were measurements though. M. stayed pretty consistent: 25th percentile for weight and 10th percentile for height. He truly is his dad’s mini-me in every sense. It seems as though he’s looking at an adult height of right around 5 feet tall….5’ 5’’ is probably pretty optimistic (Mark is 5’4’’ on a really really good day).

Last month J had been in the 25th percentile for everything. Today, he was in the 50th percentile for weight and 75th percentile for head size.

Now, those of you who follow me on Twitter might have seen me discussing J’s eating and sleeping habits recently. He was eating every 2 hours 7 am to 1 am and not really napping. After a week I wondered if maybe his latch was causing problems and J wasn’t getting enough milk. I mean, what growth spurt lasts more than a week?

A growth spurt where the baby grows 3” in 4-5 weeks.

J’s now in the 80-90th percentile for height (but only just now at my birth length…my poor mother!). He’s about 8” shorter than his older brother. Mark is quite pleased as this means he can realize his dream of having sons to dress as Mario and Luigi for Halloween one year, haha.

After the pediatrician got over the shock at the differences in my sons’ sizes (she forgot Baby J has Marfan syndrome, haha), we discussed the Menininho. We’re going to start him on melatonin for his sleep and hopefully it helps him fall asleep at night. (I’ve been told that it won’t help him sleep through the night, but we’ll take what we can get!) We also need to start transitioning him to a toddler bed. I’m really reluctant to do this because the crib is M’s “safe space” when he tantrums. We can contain him there and know he can’t hurt himself or anyone else. But, J is going to outgrow the bassinet before too long and will need the crib. We’re just going to make the transition from crib to big boy bed a gradual one, and M’s behavioral therapist should be starting in the next week or so and I’m hopeful she can help.

My only concern when it came to Baby J was his blood pressure. When he had his echo, his blood pressure was high…in the 120s. The nurse assured me it was probably because 1) she took it on his leg and 2) he was crying. It’s been bothering me ever since though, so I asked the pediatrician to retake his blood pressure yesterday to reassure me. Although he was calm when she started the process, J would cry as soon as she started fitting the cuff on his arm. Each arm came up with a reading in the 120s. The pediatrician suggested I wait a week or two and see if I get my copy of the official echo report, let her know what’s on it, and then call J’s cardiologist. I guess we just need to get a reading where he’s not crying, to confirm that it’s the tears raising the BP and not anything else. I’m sure it’s nothing, but I need to know that. Anyone have any tricks to share to get a baby to stay calm for the reading? Nursing him didn’t help.

I think the highlight of the appointment was M signaling to the pediatrician that he’d dirtied his diaper and being able to report that he has almost 40(!) words. Hooray for progress! :-)

Be Sociable, Share!

Related Post

13 Comments

  1. Awesome in so many areas. ((hugs)) for you being Super Mom. Hope the bp is really just a crying thing.

    [Reply]

  2. I know you are nursing, so this might not be the answer for you. We used to give the baby a binky dipping in sucrose or just plain sugar water. It kept him busy for a minute or two. Even if he can’t have the binky again after that, it might be worth a shot.

    [Reply]

    marfmom Reply:

    And he stayed still for the whole BP reading? While that’s not something I’d *love* to do since he’s nursing, if it works and we can get a valid reading then it’s probably worth it. Thanks :-)

    [Reply]

  3. 40 words??? THAT IS AMAZING! GO M GO!
    LOL@Mario and Luigi. :)

    [Reply]

  4. Good for you keeping on top of the blood pressure. I sing to Charlie to calm him down when they take his pressure, but he was never a fan. Maybe if you could borrow a cuff somewhere, you could do it regularly at home and get him used to it.

    [Reply]

    marfmom Reply:

    Have you seen infant ones at the store? Did/do you take Charlie’s at home?

    [Reply]

  5. That is quite a lot of growth for baby J! I think Samantha is aiming to be a Marfan kid too. She grew 6.75″ in 4 months! She actually slightly outpaced Joshua in his first 4 months. Sounds like M is doing well. The melatonin did wonders for Joshua, who also can’t fall asleep at night. It does not keep him asleep though so he still has some rough nights. Hope everything with Baby J turns out ok- stress can really raise your blood pressure so it’s probably just all the crying.

    [Reply]

  6. Hey – please, please post a picture if they dress up as the Mario brothers later. I’m also kinda curious now if there’s growth charts out there for kids with Marfan.

    I saw 2 kids recently. The ~1 year old really wasn’t sure of me until I hid my stethoscope (b/c babies are supposed to cry with strangers at that age, and don’t know that things that disappear didn’t actually pop out of existence), and the 2 year old was more curious than anything, and actually wanted me to put the stethoscope on his ears, which I couldn’t really do, but he didn’t cry at all.

    I’m wondering, do you know how to take a BP reading, or have a close friend who J is comfortable with who can take a BP? Maybe then you can get a BP w/o any tears.

    [Reply]

    marfmom Reply:

    I don’t think there’s a growth chart out for kids with Marfan, but there is a paper that talks about how kids with Marfan tend to mature earlier…I think it’s from 1998? I can find it if you’re interested. I take my own BP all the time, but I can’t find an cuff that reads digitally that’s small enough for an infant. I’ve checked Target and Walmart.

    [Reply]

  7. Maia has never had difficulty holding still for BP, but she wiggles a bit for her ultra sound. I’m hoping it will be better for her next one. They talked about sedating her…don’t really want to do that if I don’t have to. She is in the 98th percentile for height now. She is nearly 2 and figured out how to crawl out of her crib today. Guess we need a toddler bed. Not sure how long she’ll be in it though as tall as she is.

    [Reply]

    marfmom Reply:

    What about buying a twin bed and just attaching a rail? That’s probably what we’ll end up doing for Baby J.

    [Reply]

  8. Have you tried bubbles. Maia really likes the bubbles
    .

    [Reply]

    marfmom Reply:

    That is a GREAT idea! I am going to bring some to conference to use during the echo, because I forsee it being difficult for J to sit still during that. Thank you!

    [Reply]

Leave a Reply

Required fields are marked *.