Thursday, April 19, 2007

April 19, 2007

"The LORD is my helper; I will not fear..." Hebrews 13:6

And the roller coaster continues…Yesterday morning we received news that Kyle’s platelet count had improved, and we were feeling very encouraged. The doctors were going to begin steroids today, however, last night we received news that Kyle has CMV when a urine test that was done came back positive for this serious viral infection. CMV is a virus that about 60% of pregnant women carry without ever knowing. It presents problems only when it is passed on to a baby during pregnancy. Kyle could have contracted CMV while he was still inside of me, or he could have contracted it since birth from the hospital, my breast milk or through one of his many blood transfusions. Unless it is life threatening, and thank God for Kyle it is NOT, there is not any treatment that can be done for CMV, as the medicine to treat it is very toxic to newborns.

The risks of CMV vary greatly depending upon whether Kyle contracted it in utero, or since birth. If it was contracted while he was inside of me, Kyle has a 90% chance of having some sort of long term disability such as cerebral palsy, vision or hearing problems. If it was contracted after birth, the risk of any long term affects decreases to just 10%. Although it will not change his course of treatment (as there is none) the doctors are going to run a couple more tests to try and determine when Kyle contracted CMV. Unfortunately, we will not know for sure, as Kyle would have had to of been tested in the first three weeks of life for a definitive answer. One very positive thing we have learned so far…Kyle had an eye exam yesterday and the doctor checked for CMV related eye problems and did not find any. At this point, we are just in a wait and see mode. If you want more information on CMV, the following website has a much better explanation than I can give:

As I type this, I am on a flight back to Ohio. The timing is not great, but I don’t think there will ever be an ideal time to leave Kyle. Joe and I are “swapping places” for a week, and tomorrow Joe will fly down to Orlando to be with Kyle while I spend time with Madison in Ohio. The following weekend, we’ll switch back. Although it will be (and already is) so hard to be away from Kyle, Madison needs her mommy too and we’re just not comfortable with her missing any more school at this point.

Sorry for not posting last night. With all of the events occurring surrounding the CMV, I was not able to hold Kyle until late in the day when I usually post…I Kangarooed with him from 8:00 PM until 2:30 AM, the nurses said 6 ½ hours has got to be a NICU record!

When I arrived back at the hospital this morning, the nurse said that I wasn’t allowed to hold Kyle before I left for the airport, as his oxygen levels were very high (around 60%) and he was desating frequently. Not long after I learned this, I was changing Kyle’s diaper and he pooped ALL OVER his isolette. I have never seen anything like it; Madison certainly never made messes like this! Anyways, there was so much poop on the walls of the isolette, as well as his bedding, that they had to change out his isolette, which meant that I got to hold him while they did all this! God certainly has a sense of humor! I held Kyle for about 2 ½ hours, during which time he did so well that his oxygen was able to be weaned down to 48%. I’m not usually the type of mom to tell “poop” stories, but in this case I just thought it was so funny!

As always, thank you all for your support! Your thoughts and prayers have definitely sustained us during this difficult time.

God Bless You,

Jennifer, Joe, Madison and Kyle


Aunt Karen said...

"Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths. Proverbs 3:5-6

Sounds like this hurdle of CMV is totally out of the hands of you or the doctors. But remember that God is in control, and there is no greater physician than the one who created Kyle and loves him more that any of us can even imagine.

"Beware that you do not look down upon a single one of these little children. For I tell you that in heaven their angels have constant access to my Father. And I, the Messiah, came to save the lost. Matthew 18:10-11

That conjures up the picture in my mind of Kyle's angel(s) continually bringing Kyle's needs to God. And so many are praying continually, around the clock, for Kyle. When I wake up at night, I pray for him. When I go through my workday, I pray for him. When I drive in Atlanta rush hour traffic every day, I have plenty of time to pray for Kyle. Stay encouraged because nothing is impossible with God.

I am happy to hear that you get to be home for a few days. I know you will receive an outpouring of love and encouragement from your family and friends. This break will be good for you, and I know Madison will love having her Mommy home. Joe and Kyle will have some special time together, and that's important for both of them also. You all inspire us.

God bless you all,
Aunt Karen

Anonymous said...

Dear Jennifer, Joe, and Madison,
I hope you are all holding up well and keeping faith in God and the caregivers at the hospital. The pictures of Kyle continue to make me smile - he is so cute. The kangaroo time sounds very beneficial to both of you.

I am saddened to hear about Kyle's CMV infection and I pray that the rest of the testing will bring good news. He has been so strong so far and will continue to fight with everyone' love and prayers.

Jennifer - enjoy your special time with Madison back in Ohio. Hopefully you waited until the snow melted. Joe - enjoy your special time with Kyle. He knows when his parents are with him and that must help him overcome his daily challenges.

As always, my thoughts and prayers are with all of you.
Aunt Kathie

Annie said...

Thanks for the "poop" story. It is a bright spot in all that is going on down there - especially with the CMV. Sounds like the little guy had an "explosion". Where did he get all that poop. He isn't eating very much.

I can remember when Julie was in the hospital after her surgery. It seemed like we never got any good news. I can remember wishing that just one day the doctors would lie and tell me something good.

You are all in my prayers. I know how hard this time is. I hope you have a great week with Madison.


Anonymous said...

Jennifer and Joe, It indeed sounds as though the "switch" will be beneficial for everyone. And, clearly God supplied the opportunity for Jennifer to kangaroo with Kyle before she had to leave. Kyle does respond so much to the bonding and caressing time. And, who knows what impact it may have beyond the oxygen levels improving each time.
You each continue to be in our prayers. I wish there was more we could do. Laura

Anonymous said...

Dear Jennifer,
What a wonderful poop story, and a great way to end your entry. I will be praying for Kyle's CMV and hopefully good news as to it's origin. This little guy is certainly blessed to have such a wonderfully faithful family! I am encouraged each and every day that I read about the latest events. He looks so healthy and full in the pictures. Keep them coming!
We will continue to pray for you and your family each and every day.
In His Love and Peace,
Pam Hunt, HCC