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Thursday, February 09, 2006

That depends on your definition of “Good”

When you have a new baby, you can’t help but have it be the focus of most of your conversations. Almost everyone will greet you with “Oh, Hi! How’s the baby?” Usually, we respond with “He’s doing well/good/great”, because to us, he is. It all comes down to how you define “good”.
If you were to see me in the hallway and say “Hey, Brian! How’s ya doin’?”, “good” might be interpreted as “I’m feeling well, just ate a ham sandwich, and think I’ll go for a walk now.” When we answer about Jeffrey, we really mean that he’s doing well – for a 34 week gestational age preemie. What that means for him is that, maybe he only stopped breathing 6 times today, or his heart rate dropped over 100 beats per minute just once during a feeding. When we found out that he passed his vision test, it means that things were still growing into place, but there weren’t any defects observed.
I talked to my Mom this week about the upcoming family baby shower. We’re really looking forward to seeing everybody and showing off our new home; especially the new nursery. But I felt really bad when I told her that we wouldn’t be able to bring everyone up to see the baby. I know how much everyone loves to hold babies – they’re just so damn cute! (Ours especially – not biased at all!) I’m sure that my family was looking forward to seeing our boy, and he’s “good”, but not good enough to handle that many visitors. Golisano Children’s Hospital is a level III NICU and the Regional Perinatal Center, and as such has very strict policies about visitors. The policy stands that Mom & Dad and both grandparents have access 24/7. Then, depending on his condition and that of the other babies in the room, we can have 2 support people per day, and only in our company. I hope everyone understands.
My geek solution to this is a webcam. During the shower, I’m going to go into the hospital with my laptop and my webcam, and set it up to look at Jeffrey. We’ll be able to see and hear him (though not the other way, it’s too much stimuli for him). I hope that will make do until he’s home and healthy enough to have visitors. His doctors tell us that will be a few months after he’s discharged.
While we’re on the topic of misinterpretations, I thought I’d mention something I overheard in the waiting area of the NICU last night. Two NICU mothers were talking about their pregnancies and one mentioned that she was really disappointed about not being able to carry her baby the full 9 months. So many people had told her that she was so lucky not to have to carry the baby during those “brutal” 8th and 9th months (she delivered at 27 weeks). While she understood the kind intentions of the comment, she was looking forward to looking down at her growing belly, feeling the forceful kicks of the baby as her daughter grew older, and seeing her hand or foot pushing out against her abdomen. While there’s any number of horrible physical things that a woman’s body goes through during those last 13 weeks, she would have traded it in a heart beat for not having to go through the ups and downs of having a child in the NICU.
The other mother countered that with a comment made by a checkout clerk. Apparently this clerk had a few children of her own. “If you think you’re tired now, just wait until you get your baby home!” This is horribly discouraging! I can attest to the fact that it’s a lot of work having a baby in the NICU. Danielle only just began nursing the baby, and until that point had to rely solely on a breast pump to maintain her milk supply which is so important to the baby’s growth. Every two hours, hooked up to a machine, is very different than the human emotional response of feeding your child when they cry for milk. In our case, we’re very fortunate to have friends and family who’ve volunteered to make meals, provide transportation and help out with projects around the house to keep us from going insane. For this, we’re very grateful. There are many other parents who are in more difficult situations.
We hope that things will get easier when Jeffrey comes home. We won’t have to drive to the hospital 2-3 times per day, 7 days a week. We won’t have alarms and monitors going off all around us. Jeffrey will be able to maintain his temperature, heart rate and respiratory rate all on his own (more or less).
Now all we have to worry about is sickness, hazards around the home, riding a bike, the freaky dates he’ll bring home, borrowing the car… oh, I hope it gets easier!

Vitals:
Our boy is growin’! His weight is up to 1575g. He’s been taking most of his 31cc (about 1 oz) feedings orally, either by bottle or by jug, and with fewer and fewer “events”. His vision test came back with no anomalies, and he’s scheduled for another test before he goes home to check out the rest of his development, sometime around week 36. Another head ultrasound revealed that the IVH on the left is nearly gone, and slightly decreased on the right. They did find a periventricular leucomalacia cyst on the right side, and they’re unsure how that will affect him. It may possibly affect motor movement or right brain learning, or it may be completely benign. We’re hoping for the latter. Chris Tryon, the child development specialist fed him on Wednesday and told us that he’s reacting exactly as a 34 week neonate should, and his neck muscle development is quite good.
And on the topic of heads, he out-grew his first set of clothes: 2 hats.

7 comments:

Unknown said...

Yay for growth! Yay for outgrowing clothes! Boo, hiss for shadowy things in ultrasounds!

Good pre-emptive coaching on the visitor rights for the upcoming baby shower. Though I'm sure there must have been a catalyst prompting this and therefore awkward, uncomfortable discussions along the lines of "I'm sorry but..."

Brian Meehan said...

It just makes it easier. Many folks just aren't that familiar with the NICU - and that's good. Most people know or have some knowledge of the standard nursery or even a special care nursery. But there's a difference, as I keep telling myself: "He's not in here because he's got a hang nail."

Anonymous said...

Brian we totally understand the hospitals policy. We don't even need you to set up the Webcam. We check the Blog everyday to see Jeffrey and get his updates. Its really nice that you do this for all of us, even under these circumstances. THANKS! I can't wait for the day that you bring your baby home, this must be very hard. Can't wait to see you and Danielle next weekend.

Brian Meehan said...

Thanks for the words of confidence. We're really excited for next weekend, and having the chance to see you all here. It's going to be a lot of fun.

Anonymous said...

I still want the webcam anyways. He's adorable! There's no way anyone could NOT wanna look at that little boy!!! Besides, I'm kind of surprised you haven't already set up a wireless baby monitor system for him!
Hey, how is "Bunting Beta #1" working out?

Marc said...
This comment has been removed by a blog administrator.
Marc said...

I am glad we can be part of Jeffrey's special time, awaiting his journey home. I constantly am asking Heidi about the ongoings of the day. she reads and informs me daily. The room looks awesome and what can I say he deserves it. I have to admit I am very proud of you, Dani and Jeffrey. You are all going through this wonderful thing that alot of families in that situation don't do. I am very happy that you will always be a part of our family. - keep the chin up and the eyes focused, "A Thousand Mile Journey Begins With Just One Step" People are affected for better or worse by their surroundings, with you and Dani those surroundings couldn't be better