Thursday, May 22, 2008

Today's happenings

Today has already been very busy. First though, I'll recap yesterday. He had his shunt surgery and Dr. Puccoini said it went well. He came back and was very, very tired. We spent sometime with him yesterday, and my mom and Megan and Mason were able to come see him. My mom was able to hold him and so did Megan. He was pretty wiped from the surgery. We went to my room for the night around 10 pm and other than pumping every 3 hours; got a good nights sleep (for a hospital).

This morning, we were up around 7 am to get ready to see him. Dr. Bonebrake and the OB resident, Dr. Grossenburg came through along with another resident. The nurse came through and did her morning assessment; and we were off to see Matthew. I was pretty sore this morning, but have been feeling better each day.

We got to Matthew's room around 8:30 am. The neonatalogist had ordered an echocardiogram (they heard a slight murmur) and the tech was there to do that. As soon as she was finished, lab was there to draw some more blood. His poor little heel looks like a pin cushion :( As soon as she was finished, ultrasound was back to do an abdominal ultrasound. They also had a new machine and wanted to test the "new functions" out on Matthew. So it took EXTRA long to do his ultrasound.

Let me back up and tell you why they are doing all these tests. The neonatologist has consulted with a geneticist to look at Matthew. The geneticist ordered this abdominal ultrasound. The neonatologist told us this morning that in addition to having a heart murmur, he also has two vertebrae that are "butterflied" Basically the vertebrae should be a rectangular shape, but 2 of his are shaped more like a butterfly. No concerns for now, but it'll need to be followed by a orthopedic doctor as there is a chance he could have some some scoliosis. Also some of his blood work that looks at his thyroid was slightly off, so they had to draw more :(

Then this afternoon, the results of the abdominal ultrasound showed that he has some abnormality to his kidneys. He for sure has one kidney and thinks that maybe the other kidney is fused to it. This is very perplexing to us, as I've had a gazillion ultrasounds and every one showed that he had two kidneys. We're hoping that maybe this ultrasound is wrong; but regardless, they will be getting a kidney doctor also involved. The neonatologist also wants to do a MRI tomorrow to look at some different areas of his brain to see if /what damage has occured. He is also having an eye doctor come check his eyes to see if his optic nerve has any damage. Both Steve and I are very frustrated today. We just want them to quit looking for things wrong with our precious baby boy. To us, he is perfect; hydrocephalus or not. If he's blind; so be it. If he has scoliosis, we'll deal with it. We just feel like every test they do, they find something more. If it's a genetic abnormality, so be it; it won't change the way we love our baby. In a way, we understand the Dr.'s point that if we can collect all this while he's here, we can save ourselves a lot of appointments down the road, but it doesn't make it any less frustrating.

We did get some good news today; his echo (heart ultrasound) is normal and we get to try to start feeding him today. He, on the other hand, is not one bit interested yet. He is still very groggy. so we'll see how today goes; if he doesn't take to it, they'll place an NG tube (a tube that goes in his nose and down to his tummy)tomorrow and start giving him some of the milk I've been pumping to him, so we can discontinue his IV. We'll continue to keep trying to feed him orally, but the tube will supplement what he doesn't get. Steve and I are both ready for his IV to be gone. We're always worried about pulling on it.

He'll also have the MRI tomorrow, so they won't feed him for a while before that; because he will need to be sedated for the procedure.

Well, I'm exhausted. I don't know if I'll update anymore today, but will try to tomorrow.

I'll leave you with a couple of pics of our darling!
Megan gets to hold Matthew

Mommy and Matthew enjoying so "skin-to-skin" snuggle time

Daddy and Matthew


Sherri said...

oh, Jill- you certainly have that new mommy glow! Despite all of the annoying testing- He must be doing pretty well, I know they didn't even talk about taking Miles' IV out for quite a while. It sounds like the communication between you and the Dr.'s is going well, too. I remember being so frustrated because no one was telling us what tests they were running and if we needed to be concerned about anything.
Sounds like you are already head over heels for this little guy! And rightly so- he is absolutely precious. So glad to hear you guys are getting to hold him often! He is just beautiful- can't wait to meet him!We'll be praying for all the tests!

Robin said...

Steve & Jill --
Matthew looks absolutely beautiful! He just fits your family amazingly! I will be praying for you guys... keep your spirits up. Am so glad to hear both of you are doing reasonably well.
btw...this is robin lahman...just in case you were wondering... :)

Kristen said...

Oh, I love Matthew's hair! It's a walk down memory lane as I read about all Matthew's tests and the many new findings that are concerning. I'm so glad you get to hold him. It's hard and exhausting this kind of experience, but it never takes away the joy of holding your baby. I love Matthew too just how he is! Mike and I are praying for you all there! Cayman says to tell Matthew that she understands and to hang in there...And that life gets better out of the NICU, so get eating like a little piggy! :o)

Holly said...

Dear Jill and Steve,

It is good to see you in the pictures, it makes me feel better just seeing you. Matthew is sooo cute, his hair is darling. You will get through the next days and they will be gone, then on to the next one. You guys need 20 hours of solid sleep. Matthew will be just fine. Keep up that pumping! And keep giving him lots of skin to skin contact like you are. You will make wonderful antibodies against all the stuff in the NICU to protect him through your milk just by exposing his skin to your skin. You are his special gift.
Love, Holly W.

vickie said...

i wanted to write and let you know that I am thinking of you and sending lots of prayers for you and Matthew and your whole family. I know that things are tuff now with all the tests, but it will be very short lived and you will all be together again here in Lincoln. Keep up the great attitude and things will seem better.
Since I can't mox mail you at work, I guess I will have to send you a little reminder of me every so often. will continue to send you thoughts and wishes and lots of prayers, keep us updated.
your friend and coworker

Briahtia said...

Always here for you and praying for you----Love Brenda

Briahtia said...

Hello Soldatke family--
It was great to work with you today. And if I haven't said it in awhile---YOU are amazing. God knew exactly what Matthew needed---all of you!!! Keep doing what you do best--being Matthew's MOM! He is so lucky to have all of you!!! You all remain in my prayers and remember if you need anything at all I am always here even at 2am!!!
I love ya====Brenda