Wednesday, July 23, 2008

Pediatrician Appt., etc.

Our appt. with the pediatrician this morning went well. We've been with this ped since Kevin was born, and although he and I don't always see eye to eye on things like co-sleeping and vaccines, all in all I do like him very much.
When we got there, my favorite nurse, Diane, came out excitedly to the waiting room to take us back to an exam room. She has also been there for as long as we've been going there - 11 1/2 years now. I still remember taking Kevin in several times during the first couple weeks of his life for jaundice, and that's when I started getting to know Diane. She's probably about my age, and she's always been so thrilled each time I've shown up pregnant with the next baby (or in the case of the twins, babies), and then when I bring the new little patient in. Today was no different - she was thrilled to get to meet our newest addition. I knew as soon as I saw that she would be our nurse for this visit that I was going to start crying. I can't explain it . . . all the times I brought in a healthy, perfect little baby for her to coo over, and this time I felt like I let her down in some way. She took us back to the exam room and she asked us how everything was going and I did, I just started crying, and I told her that he had to have surgery and that he was in the NICU for almost two weeks, and that he has Down syndrome. She started crying too, and she just wrapped her arms around me and said, "It's okay, it's okay." Her compassion moves me.

So we got a weight check for Finn. According to their scale, he weighed 5 lbs. 15 oz. as of this morning. However, even Diane pointed out that he's now been weighed on not only 3 different scales (theirs, the one in the NICU, and Sue's scale), but 3 different types of scales, and that it would be almost impossible for all of them to be calibrated exactly the same. What we have to keep in mind is that it's not so much the number that matters, but if he gains or loses. So now the ped has a baseline weight to go by on his scale. And for the record, Sue came over again this afternoon and weighed him on her scale and he was up to 6 lbs. 3 1/2 oz., which is a gain of a couple of ounces since the day before yesterday.
Anyway, Dr. Wong spent a long time with us. This is one of the things I've always liked about him - in the 11+ years I've been taking my kids to see him, not once has he ever rushed us through an appt. He always takes a seat and allows as much time as we need to ask questions and voice concerns, and he takes his time with the exams and always tries to answer all of our questions.
He was pretty unhappy about the fact that he got the records from the NICU after Finn was discharged. He explained to us that he is supposed to be notified by CHOC as soon as a patient of his is admitted so that he can be involved in the process, but that CHOC isn't good about actually fulfilling that expectation. He said if he had known that Finn was in the NICU there, he would have made several visits and could have been instrumental in getting Finn discharged sooner :(

Our main concern today was the issue with Finn's testes. Dr. Wong confirmed that they're undescended, and he was unable to palpate them in his groin, so he thinks they're pretty high up in his abdomen. He said that even if future fertility isn't an issue, they need to be brought down because of other potential medical risks. He's making a referral to a pediatric urologist and indicated that surgery is a pretty high likelihood. I can hardly think about it . . . another surgery.

Other than that, the exam was pretty routine, and everything looks good - his hips, his reflexes, his eyes, ears, mouth. I appreciated that Dr. Wong never suggested supplementing with formula, as I think a lot of pediatricians might do with a baby who appears to be a slow gainer. He's not an alarmist, and that's also something I've always liked about him.

He said that Finn's Ds features are subtle. He said he's seen Ds babies with much more noticeable Ds features. He's not the first person to say this about Finn. Is it true or are people just trying to make us feel better about the situation? Sometimes I look at him and I see the Ds, especially in his eyes. Other times I look at him and I don't see Ds at all . . . and then I wonder if I'm just becoming numb to it. I don't know what to make of it. I suppose we should be grateful that Finn doesn't outwardly look like a "severe" Ds case. One of the nurses in the NICU told me that in her experience, the severity of a Ds baby's physical features directly correlates to how severely they are impaired mentally, etc. At least one thing I read, however, disputes this and says that there is no correlation between a Ds person's physical features and how impaired they are. I put a lot of effort and energy into trying not to think about these things too much . . . but sometimes I can't help myself.

Finn is proving himself to be a crabby baby. Which means he fits right in, since 3 out of 4 of Michael's and my babies before him were super crabby babies. Lilah was always a relatively calm and content baby, and I'd like to think it was due at least in part to her being born gently into water at home. I had hoped for the same for Finn, and maybe it would have held true, but whatever peace his actual birth may have brought him I'm sure was completely undone by all the trauma he suffered over the next couple weeks of his life. My poor baby. I've started carrying him around in one of the slings I made for him before he was born, and he does seem to be soothed by that.
The nursing is getting better and better every day. It really has just been a process of him learning how, I think, and he's really nursing like a champ now. When Sue came over this afternoon, we even got him to nurse while lying down with me, which has been the last challenge to overcome, and he did just great. That will make things easier at night, if I can nurse him without having to get up and sit with him, plus, if he snacks all night, all the more calories to help him grow.


Anonymous said...

Hi there - it's Audrey's friend again. I'm still following your and Finn's progress.

I help at a drama group for kids and for the last year or so we've had a little boy with Ds in the group. I have to admit I had reservations at first about what he would be like and how the other kids would treat him etc, but they were completely unfounded. He's a lovely little thing. And as bright as a button. He had lines and everything in the last thing they did, and he did a good job. :o)

Like Finn, his features don't seem particularly pronounced. Sometimes I notice it, sometimes I really have to look to see it. He also goes to mainstream school.

He was Peter Rabbit in the last thing they did. :o) If you'd like to have a little look, you can see a pic on this page. He's on the first picture in the blue coat.

Anyway, I think what I'm trying to say is if I can wish anything for you, I have everything crossed that what the NICU nurse said is right. It would certainly seem to follow with "my little guy". I wish there will be no reason that Finn can't lead the same sort of life as the little guy I know.

Love, Nerys x

Larry said...

I'm happy you have a supportive ped - and frustrated to hear CHOC did not coordinate with him and you as they should have - argh! Also glad to hear the nursing continues to improve - hope you have a good day with your little boobala! Lisa B

Anonymous said...

Oh Lisa, this entry made me cry. Your such a sweet mama, you know that? I don't know what it is about seeing familiar people that make us break down ~ I guess it's a safe place to be vulnerable and I'm so glad your nurse friend was able to be there for you.

Even though I've not experienced what your going through, I've been through other trials and so much of what you write I feel I can relate to. Especially to the longing of wanting to go back in time beore it all happened. I do that alot with my ppd experience after having Seamus, something I'm still dealing with and I get so upset sometimes, wishing I could go back to a place in time where none of it existed & I had no idea what anxiety or panic attacks or OCD is, and what it'd be like to be pg and have a baby & not worry about those things, but to just have the pure ignorant bliss of having a newborn & enjoying that time.

Anyhow. Your amazing, and your strong & I really admire you.


Anonymous said...

Just checking on the progress for you and Finn. In one of your earlier post you had mentioned that someone, maybe your SIL or whomever was watching the other children, had went to visit Finn and they commented they could see the DS in him. I looked at the pictures that day and I didn't see it. And I have looked at all the pictures you have posted and I still can't see the feature in his eyes. I think he is gorgeous and I love the fair hair! You are such a great mama!

Carla said...

I'm so glad that you have a receptive, kind soul in that nurse. She sounds like a wonderful person. Here's to Finn's all night snacking!!!

Cindy said...

Most everything sounds positive except a possible other surgery. I am glad that things went well for you and Finn.