Keeping in Touch

Dylan wanted to call you all to tell you how great things have been going for him, but we've never really shown him how to work the phone yet, so I figured I'd post it here. The little guy sure did give it a good try though, as you can see.

Seriously though, not much new has really been happening. He gave us a bit of a scare today though, when his herniated umbilical cord got hard, swollen and could not be reduced back into his abdomen. This can be dangerous if part of the intestine gets caught in the hernia and becomes twisted or strangulated. Typically, the hernia is nothing more than a little bulb on his belly that is squishy and can be pushed in temporarily, quite easily. This morning though, Dylan was very upset, seemingly in pain, and the bulb was hard and sensitive to the touch. After a quick call to one of the staff in the NICU (still helpful even two months after discharge), Barbara packed him up and headed off to the ER. I was working, and arrived a little after she did.

It turns out that it wasn't strangulated, and Dylan wasn't in any immediate danger, but the doc agreed that we did the right thing by bringing him in. Apparently, part of the intestine had gone into the bulb, and it may have been painful. Since he was in pain, this then caused Dylan to tense the muscles in his stomach which in turn caused the bulb to tighten and become hard. Once he had relaxed a bit, they were able to reduce the bulb back into his abdomen without much effort, and he was fine. Still, he recommended that we mention it to his new pediatrician (who we go to see on Wednesday) and have them set up a surgical consult. Apparently, he feels that it likely will need surgical intervention at some point (perhaps because the intestine is entering the bulb- it doesn't always happen that way) and that we should have a familiarity with the surgeon and the surgeon should have a familiarity with Dylan and his case before it comes to that. So, it's on our list for his new pediatrician.

Incidentally, the ER doc mentioned that he is familiar with our pediatrician and he spoke highly of her. He also mentioned that his own children go to the same practice. That's a pretty good endorsement, in my eyes. We'll she if she lives up to the advance billing.

Otherwise, Dylan is doing very well. He is about 25 inches long and weighs 15 lbs 7 oz. His latest thing seems to be long winded conversations with his Mommy and Daddy. We'll talk to him and he seems to be responding. We can go on for 30-45 minutes at a time sometimes. He'll coo and goo and make all sorts of sounds that sound like he is trying to form words. It's great to see him starting to develop language skills. He is also getting better control over his hands, sometimes holding his pacifier for a while, grasping at his bottle while being fed, and even rubbing his eyes when he first wakes up or get's sleepy. His head control is much better as well. When on his belly, he has full control, turning from side to side at will and holding his head up whenever he wants to see what is going on around him, which is most of the time. When upright, he is still a little unsteady, but he get's the idea of it and can keep his head upright, if not altogether still, when he wants to. He's just really impressing me with all of the little things he can do. It's amazing to see a little baby learn to do things that I never would have given a second though to until he came in to our lives.

Anyway, that's it for now. We have his pediatrician appointment on Wednesday during which eh will get his 4 month shots. I'll try to post back and let you all know how that went.

Take care!

Keeping you up to date...

Hello again!

Our plans changed again last week, as it seems they are doing with some regularity since Dylan was born- even before he was born.

We canceled his consult about the herniated umbilical cord. It just didn't make sense to drive all the way into Gainseville and to wait at least an hour to see the doctor, for something that we aren't really all that concerned about anymore. In fact, the bulb where his belly button should be has actually gotten quite a bit smaller recently. We'll continue to keep an eye on it, and we'll definitely ask his new pediatrician about it as well.

Which brings me to my next point- We canceled his pediatrician appointment also. Neither Barbara nor I were impressed with the pediatrician we selected. The fact that she works as the only doctor in her office, the fact that she seemed to not have time to answer questions, listen to concerns, among other things, all led to us finding him another doctor. His first appointment with them will be Oct 1.

What we did not cancel, however, was his NICU reunion. We were happy to head to Gainseville for that. Dylan was quite impressed with things. He got to see Elaine and Judah, his physical therapist and social worker from the NICU, also a couple of the nurses who took care of him and Doctor Baines and her daughter as well. He even got to meet his first celebrity. Mother Goose was there, signing some books for the children. We made sure Dylan got an autographed copy. It was nice to see the familiar faces and talk to some other NICU parents about our shared experience there. Dylan was a big hit with everyone who saw him. Those that new him from the NICU were all amazed at how much bigger he has gotten and how bright his eyes are and how they light up when he smiles. It was a good time for all.

Keep your eyes on the blog for a special poll to be held in the first or second week of October. It seems that we are having a very difficult time deciding what costume Dylan will wear for Halloween. We'll be posting pictures of Dylan in each of the four possibilities for you to vote on to help us make our selection.

Until next time...

Change in plans

Well... we thought we had an MRI scheduled for Dylan, with a follow up with a neurosurgeon. The neurosurgeon thinks otherwise.

We got a call today from his office. We were told that the neurosurgeon looked over Dylan's chart and does not see the necessity for an additional MRI, especially given the fact that he has already had three. His main concern is any unnecessary exposure to additional radiation. Considering the lack of abnormal head growth, the encouraging results of the last MRI done and the fact that Dylan has exhibited no symptoms of any continuing problems related to the hydrocephalus, it really does not make much sense to do it. I never knew there was any radiation involved in an MRI. I never looked too far into it, but I always thought they were radiation free. Live and learn, I guess.

The curious thing is this, though: If this is the case, why did the neurologist not come to the same conclusion? Is it just a matter of a more aggressive approach vs. a more conservative one? Did the neurologist simply not look deep enough into Dylan's chart and look at the "big picture"? Whatever the reason, I just wish that the docs could all get on the same page.

In other news, something I left out in my post yesterday... Dylan was at his first party last weekend. He helped us celebrate his Mom's birthday. In fact, he even bought Barbara a very nice pendant for her birthday that say "Mom". OK, maybe he had a little help with that, but as he proved on Father's Day, he can definitely shop with the best of them. I guess he appreciates having such a super Mom. He was very well behaved, although I think he may have had a little too much to drink. He drank himself to the point of passing out. That breast milk packs quite a punch, I hear.

Anyway, I just wanted to give you all a quick update about the MRI appointment. More news as it comes...

What's new, and what's not...

In spite of the title, there's really not much new going on. Dylan is still the world's most gorgeous baby, he still lights up the room with his smile, and he still has his mom and dad wrapped around his tiny little fingers.

We do, however, have a busy couple of weeks coming up. Next week, Dylan will be seen for a consult on his herniated umbilical cord, he get's his second round of vaccinations, and he's going to his first reunion (more on that later).

The consult about the umbilical cord is probably unnecessary, but it will help settle our minds about it. A herniated umbilical cord is typically nothing of concern, but it can and very occasionally will become strangulated and lead to serious complications. At the time that we made the appointment to have it looked at, Dylan was rather constipated and acting very fussy. The bulge had also grown quite a bit since he was released from the NICU. These can be signs of a problem with the hernia, so we opted for the more cautious(paranoid?) route. Of course, these can also be signs of a normal baby. I'm sure it will be an uneventful appointment.

I'm hoping that his appointment for his shots goes as well as his first visit to his pediatrician. He tolerated the first round of vaccinations very well and he impressed his mom and I very much. If he has the same lack of reaction to them as he did last time, I will be very happy about that. Who wants to see their child upset and uncomfortable?

As for the reunion, that's something that I know Barbara and I are looking forward to, and we think Dylan is as well. The NICU has a reunion planned for their former patients. Although we have stopped in to see some members of his care team when we are in Gainseville, there are some nurses we haven't seen and that we would like to say "thanks" to and show off our beautiful boy to. The flyer says they also have some "fun activities" planned, but I somehow think that Dylan may be a bit young for them yet. Maybe at next year's reunion though. :)

I'll let you all know how things went with all of the appointments in my next post.