A Little Something Extra

Friday, February 15, 2008

Happy Valentine's Day



Here's our little guy in his adorable outfit (thanks, Mar). I forgot to take a picture of his back. There are little angel wings on the back of the shirt. The second photo is of the bottom of his feet. So cute.

We had a Care Conference yesterday. It was organized by the social worker, and participants included the neonatologist, cardiologist, cardiology nurse practitioner, physical therapist, genetic counselor, discharge manager, and a nurse. This was scheduled a few days ago, prior to Micah's setbacks of the past couple of days. He didn't eat very well on Tuesday. And when I arrived on Wednesday morning, I felt like I was bombarded by the speech therapist (ST) and Micah's nurse. The ST seemed pretty upset that we had stopped using the nasal cannula for his feedings (to give him an extra dose of oxygen). One of Micah's nurses and I made that call on Saturday because he had been doing better (no desats while eating) and he seemed to dislike the nasal cannula so much (wouldn't you?).

Anyway... the ST and his nurse informed me that they were now supplementing his breastmilk with formula and that he wasn't to take any more feedings without oxygen because he wasn't eating well at all. He didn't perk up during the day. And yesterday morning he was not himself. He's usually pretty self-soothing but he was very fussy most of the day. And he didn't take anything from the bottle. He seemed like he had a belly ache. They ran a CBC and there are no indications that he has a virus or an infection. I've asked the doctors to consider whether the bellyache relates to the formula fortification or possibly reflux.

His cardiologist stopped by to see him around lunchtime. She thinks that his heart is working harder and that is the cause of his lethargy. She started him on two medications (low dose to start), with the option to add a third. She's a cut-to-the-chase sort of person. If Micah doesn't show significant improvement over the next week, then it's likely that we'll have to go back to Milwaukee for 3 days for him to get a G-tube (a tube inserted into his belly and it doesn't go through his nose; rather, it comes out his belly). It's a surgical procedure and due to his heart defect, he needs an anesthesiologist who specializes in pediatric cardiology.

A G-tube is something we had really hoped to avoid. But it's much more important that we get him home. As I said to the attendees in the meeting, he needs to be a baby. He needs to come home and see things other than the mobile over his crib. He needs to be able to use some of his energy to play, not just eat. Right now, we're not doing much interacting with him... we're trying to give him a break so that he can use his energy to eat. That's just not good for his overall development.

So, it sounds like we'll either be home in two weeks or on our way back to Milwaukee for a G-tube.

12 comments:

The Lenda's said...

Micah looks so sweet in his adorable valentine outfit. I am praying that God will give you guys and doctors wisdom in dealing with his feedings. Hoping that very soon you can bring him home so he can hang out with his big brother.
Rachel

Amy said...

Hi Mark and Jennie,

All this news about Micah seems like a lot to take in at once. You are all in our prayers, and like the Lendas said, we'll pray for wisdom as you make all these decisions for him. Miss you!

Love from all of us

Melanie said...

I loved the outfit. He is so adorable!
I agree that he needs to be home. If a GTube is what it takes, then that sounds like the right thing to do.
It had to be so hard to watch him be so uncomfortable the other day. We are praying that he will be home soon so he can enjoy you and your family and toys!

ATLKrafts said...

Love the outfit, he is getting so big! We will pray for wisdom for those making the decision about the G-tube. Hope you guys are feeling OK and Mark is over the flu.

Beth said...

He is adorable. Hoping you can bring him home soon!!!
~Beth~

Jean said...

Hang in there! Your family has been so strong through this process.

I just wanted to let you know that when my kids got their breastmilk fortified, they got really gassy and were miserable between feelings. Not sure if it was a digestive thing or not. Only one of my kids had acid reflux too. So it may just take a day or two for his body to get used to the changes.
I hope he starts eating so you can bring him home.

Kacey Bode said...

Micah is so beautiful!! He looks so great, and I love all his hair. We will be praying that you get to bring him home soon!

Kris said...

Jennie,
Getting Micah home is so needed for all of you right now! Of course you can continue working on oral feedings regardless of the g-tube or ng tube. With the g-tube, you won't have to worry about the swallow problem that you get with the ng. Erin had troble with that, and couldn't get the suck swallow down until the ng came out. I'm with the cardio too, the heart is going to take a lot of extra energry from Micah. I remember Dr. Strausburger stressing this with Erin and she was always absolutely correct. Once his heart is repaired, you will notice a lot more energy!! In the meantime, a g-tube can be a real blessing... I know, it's one more thing to to "let go" of, which isn't easy. I've been there, and was so determined to get Erin eating well. But looking back, I can easily say that if I had to choose between worrying constantly about getting enough calories (like I did for three months), and the g-tube, I'd go with the g-tube. It's not permanent.

We continue to keep Micah in our prayers. And let me say again, he is just so adorable!! My kids absolutley love seeing him and cannot get over how cute he is. Rememeber, for future reference, my girls love to babysit! LOL. God bless, Kris

Kris said...

Jennie, I forgot to send along Hidden Treasures, a site that a friend of mine set up. It comes with a Catholic flavor, but is for all to enjoy. Be sure to check out the beautiful montage.

http://www.hiddentreasuresthet21journey.blogspot.com/

Kris

Keagansmom said...

Jennie,
Oh, Micah is so cute! And, Kris is absolutely right: you will notice a huge difference once the G-tube is in and the NG tube is out. The NG tube used to distract Owen SO much from focusing on the suck, swallow, breathe rhythm that he would just give up. The g-tube really is easier,on the kid and the parents,even though its a hard choice to accept. And the doctor is probably right, his heart problems are making him tired, that was the case with Owen as well.
We all hope he gets home soon! He has great hair and really is a cutie!
Love,
Scott, Kelly, Keagan, Owen

leah said...

Jennie, I came across your blog today and loved reading. I work as a pediatric occupational therapist assistant. I just wanted to tell you that, Ive always said that if God told me, "Leah, youre child is going to be born with a disability, pick one" Down Syndrome would be it!!! As Micah gets older, you will learn one thing.....you have the sweetest, most loving, caring, yet hard-headed :) individual!!!! God knows exactly who to give these kids to, because he knows your family can do it!! God bless you and Micah.....you all have a great, fun, exciting journey ahead of you!

Anonymous said...

I have to agree with the ST - especially in a baby with a heart defect - extra O2 would definitely be needed when incurring any type of stress/extra work. Yes, he may not like it, and yes, you as a mother don't want him to be uncomfortable - but ultimately that choice may have lead to his setback. As hard as it may be - this is a situation where you have to put aside your wants, desires and needs. The focus has to be on Micah and what will most benefit him in the long run. Children don't always like what is best for them and babies don't have the ability to even comprehend it. Hence the job as parents - unselfish devotion to the ultimate best for our children - and that includes heeding the advice of medical professionals. They can look at the situation objectively and they have the experience to know what to do. They don't have a personal adgenda involved