A Little Something Extra

Wednesday, November 28, 2007

New Photos & Visit to Milwaukee

As you can see on the side margin, I've posted some new pictures (Mark and I and one of our little guy on ultrasound yesterday). I thought the 3D/4D of the baby was so appropriate... he looks like he's boxing!

Our visit to Milwaukee on Monday was as expected. Our little guy does have an AV Canal. The cardiologist said to expect surgery around 4 months of age. If he comes early, though, he would likely need a minor surgery after birth prior to the more major surgery later. So let's hope that he doesn't decide to enter the world before 36 weeks (mid-January).

The cardiologist was great: very informative and supportive. She agreed that the majority of baby's cardiac care, barring the actual surgery, can be done here in Neenah at Children's Hospital - Fox Valley. We feel quite fortunate to live 10 minutes from that branch of Children's Hospital and that there is an excellent pediatric cardiologist on staff there.

We also toured the NICU and Labor & Delivery on Monday after we saw the cardiologist. It was bizarre, actually. I didn't ask how many deliveries they do there every year, so I have no way to compare that number with Northside in Atlanta (where we delivered Nathan... they do 18,000 per year!). But there were only 2 operating rooms for c-sections and multiples and neither was occupied at 10:00am on a Monday, which seemed rather bizarre to me.

The NICU was very nice. It has 41 beds and on Monday there was only one bed open. Thankfully, Nathan is over 2 or he wouldn't be allowed in the NICU to visit during RSV season. As it is, we'll have to get him comfortable wearing a mask. Yeah, right. But our nurse coordinator, Andrea, from Fetal Concerns is sending us a mask with Mickey Mouse on it so we can try to teach him about it in advance.

I also had an appointment yesterday with my local perinatologist, Dr. L (she's the one who took that cute picture posted to the right). Baby looks good. His femur and humerous were both measuring about 2 weeks behind, which is common for babies with Down syndrome. He has hair on his head (no surprise, considering Nathan was nicknamed "Monchichi" by a friend in Atlanta). He was moving around like crazy, just like he was during the echo on Monday. I have a high level of amniotic fluid, but it appears it hasn't gone up since my last measurement 3 weeks ago. Due to the high level of fluid, however, I will see the perinatologist every week throughout the rest of the pregnancy (as well as my ob/gyn) to have the fluid level checked and the baby measured for growth. With all these doctor's appointments, I'm so thankful that we live close to Mark's parents, who have been so great about watching Nathan while I make my medical rounds.

The delivery is currently scheduled for Thursday, Jan. 31. For those of you counting, that means I would be in the hospital when the Packers beat the Patriots in the Super Bowl. I'm not too pleased about that schedule, but it's still tentative... Dr. L will give advice to the peri in Milwaukee as we get closer to the end of January.

Next step... I need to set up a tour of the NICU here in Neenah to try to determine whether we should push to get the baby transfered up here after he's released by the surgeon in Milwaukee. It could be weeks after that before he could go home depending on whether he's quick to learn how to eat.

9 comments:

Kris said...

Jennie,

I think that is the CUTEST ultrasound pic I've ever seen. Just adorable, and amazing how clear you can see your little one's face! Also, you look so familiar. I'm sure we've bumped into each other at MSU, even if we don't remember.

We continue to keep you all in prayer. I wish I could bottle my excitement I'm feeling for you. I know that may sound strange, knowing everything you'll be going through. But excitement is what I'm feeling, looking at your little guy. The difficulties will pass and your love will grow leaps and bounds beyond what you thought possible.

I also wanted to say that Erin went three months at home without eating well. She had many feeding issues and was ng tube fed before and after her surgery. She now eats fabulously well. So, my thought is...once he's recovered from the actual surgery, I really think you could work the feeding issues out at home on an outpatient basis. It's an additional challenge trying to work on feeding in a NICU, when you're exhausted. Just my personal opinion, based on my own experience, unfortunately. Do you think that's possible? Just a thought.

God bless,
Kris

Jennie said...

Kris,
I'm pretty sure we were on the same floor at Akers in '86-87. I think your roommate, Windy, was a friend of one of my roommates, Kimmie.
Thanks for the compliment on the ultrasound photo. We think he's pretty cute too!
Interesting thought about the ng tube and feeding issues. But we've been told that they won't let him out without him gaining an ounce a day eating on his own. But if it goes too long, I imagine they'll let us go with an ng tube.
Thanks for keeping in touch! Let me know if you're ever visiting our area (or shopping at Fox River Mall). :-)

Jonathan said...

Hi Jennie,

Of course the baby looks cute, as someone else has already commented, but you and Mark look great. What a great picture of you both.

Thanks for keeping us up-to-date...so glad you have a blog. :)

Miss you all!

Love,
Amy

Shelley said...

Jeannie,
I just found your blog and wanted to let you know that I'm reading along :) The ultrasound picture of your son is so cute.....looks like he's going to be a fighter.

Kris said...

Jennie,

I do remember Kimmie, and now that you mention her, I'm certain I remember you now too! That is so funny.

They (meaning the NICU docs) wanted Erin to gain an oz per day before leaving the NICU too, and she did, with nursing alone. Her feeding issues came soon after we were home, however, because of her heart. She was born in March and gradully lost the energy needed to eat, and had the ng tube placed in July. Of course it would be better to not have the ng :) But I only mention it because I wanted you to know that you can manage all sorts of feeding issues at home. In addition, Dr. Stausburger likes to see all kids on the regular growth charts, not the Ds growth charts....so she'll be watching very closely. So closely in fact that every oz matters with her. This is bringing back memories of counting all those oz, and weighing Erin daily. We rented a scale so we didn't have to leave the house as much, and expose Erin to germs.

We were at Children's Hospital in Neenah two times with Erin, although not the NICU. We were very impressed. Hope that all goes well so you can be close to home!

God bless,
Kris

Rena said...

I am so glad you've started a blog and so appreciate you sharing your thoughts. What a journey you have been on.
Your little guy is the cutest little fighter and I know God has great plans for him.

Beau and Patti said...

Mark and Jennie....we are continuing to pray for you often. Thanks for sharing your hearts and your journey with us! Patti is going to call you this week and is looking forward to catching up with you. We love you guys! - Beau and Patti

ATLKrafts said...

I love the picture of you and Mark! You look great!

Tom said...

That's an amazing ultrasound picture! And sorry you'll miss the Packers game... :) I'll cheer extra loud for you.