Saturday, July 31, 2010

Take a deep breath and hold on..we are entering the ride of a life time.





Ok so where do i begin..so much has occurred since my last post and I hope you haven't been holding your breath waiting on one. I have not been updating as often for several reasons..first school is out so Emily is also at home and that leaves a little less down time. Secondly Harrison has had surgery and recovery which has added to the usual list of doctor appts and things to do list. Thirdly, I have just been in one if those burn out moments. I am burned out from the adrenaline rush I survived on while he was in the nicu. I am burned out from the daily care regimen. I am burned out from having to repeat the same information over and over to my spouse, family, doctors, and whoever else needs to know what is going on. I am burned our from the constant worry. I am burned out from the constant analyzing and assessment of his general health and development. I am burned out from being house locked unless I want to pack up my house ( not really but it feels that way) just to go to the store. Did I mention that I was in one of those burned out moments? Haha..so needless to say I have not been in the writing mood. So i guess i will start where I left off.

On June 11, Harrison underwent his 2nd stage repair for his imperforate anus. They created the opening and pulled his rectal pouch and fistula which was connected to his urethra down to the opening. The surgeon said that his anatomy looked good and that in a couple of months he could close the colostomy. But along with this surgery came a setback. Harrison completely refused to take the bottle and to this day will not take anything by mouth. This has probably been one of the most depressing things for me. I know it might sound stupid to be bothered by, but him being able to bottle feed was allowing some breathing room and freedom from such a strict feeding schedule. In addition to this setback, Harrison had an MRI that confirmed he had a tethered spinal cord. This test was done before leaving the hospital from surgery. So with this diagnosis, the closing of the colostomy will be delayed because spinal surgery will take place first. And if that wasn't enough to swallow, Harrison's jaundice returned, probably the worse Ive seen it since his heart surgery. I was overwhelmed with all of this because essentially it just added more worry to my plate.

So I guess from here i will give my usual run down of updates.

Liver Harrison had to have his liver labs drawn in the emergency room on Tuesday. This was due to the fact that I noticed that his breathing was quicker. When I took him to have his labs drawn the nurse was concerned and told me the drs wanted me to take him to the ER for respiratory distress. So off we went and his liver labs came back with his bilirubin levels at 15.9. They haven't been that high since March. And they made a remarkable jump in 2 months. His enzymes were also elevated but nothing more than usual. I saw the liver dr on Thursday and he didn't really have much to say other than he needs to gain weight to get as healthy as possible for a liver transplant. He also ordered an ultrasound of his liver to be done so that they can look for any changes, cysts, or other things that can be of concern. We go back in 2 months for another followup. His stool color has also been much paler these days. We did increase his feeds and it seemed to produce more colored stool but not enough to relieve my worry. So the state of his liver is not great by any means and at the moment I guess it is stable. I am just not sure how much longer it can hold out. So please be in hard prayer that Harrison's liver will continue to work well and that bile will flow.

Heart during our recent ER trip cardiology did another echo on his heart and said that they see nothing that has changed that would be causing his breathing issues. That is a huge praise. They said his heart and function look good.

Weight and Growth Harrison weighs 12 lbs 11 oz and is 24.5 inches long. So he is still itty bitty but he is growing. Please pray for continued good growth.

Tethered cord We met with the neurosurgeon after the MRI. He said that the tethered cord surgery was to be done before any other surgery. So it is scheduled for Aug 26. This surgey is on his spinal cord and is an extremely delicate surgery. Any nerves damaged in surgery could affect his ability to move his legs, bladder and bowel function. So it is serious. Please be in prayer for Harrison and the drs during this time. Please pray Harrrison's liver status remains stable so this surgery can remain as it is. The earlier it is donnas, the better the prognosis long term.

Development Harrison currently has therapy twice a week where we he works on sitting up and pushing up on his arms when on his tummy. He has definitely gotten stronger but he still needs support to do some of these things. All of the stuff on his tummy in addition to his large liver making it harder to breathe make all of these tasks so much harder. He has also just started seeing a speech therapist for his feeding issues. All I can say is praise God for her. She really took the time to assess Harrison and all that he has been through, all that he has going on, and all that he still has to go through. With all this she has developed a plan that his specifically for him and she took the time to explain why he does some of the things he does that worry me. She helped me understand how the smallest of things are so important in development of a baby. Overall she helped me not be so frustrated with his feeding issues but instead understand how he needs to be approached,

Baptism on June 27, 2010 Harrison was baptized. An amazing moment and one in which we feel blessed to have had the opportunity to experience. Praise God for all that he has done and continues to do in Harrison's life.


Overall Harrison is still doing well. He is currently sick with a cold which is making him miserable so I ask that you pray that the Lord will relieve him of this. We are now going on a week of it. Also Praise God for Harrison qualifying for Med Cap C program. This will allow a nursing aide to come in the home and care for him for a couple hours a day so that I can do things like go to the grocery store and other errands. It is a blesing that he qualified because it also qualifies him for medicaid which will help in covering the costs of his medical bills.

And not to steal the thunder from our precious miracle, but I figured I would take this time to share the news that brought about the title of this post..take a deep breath..sit down..are you ready...ok..

We are no longer going to be a family of four but a family of Five. Yes you read correctly..No I am not kidding, no we are not crazy, no it wasn't planned, but it is by no means an accident. A true miracle of God. Yes i am handling the news in stride, we all are. I am 12 weeks and am due Feb 13. All I ask is that you please pray for the health of this baby. I am undergoing lots of testing due to Harrison's history and with each test comes the fear. I have completely relinquished it to God for I believe he will not give me more than I can handle. I have some tests coming up this week and as they draw closer I get more nervous. So please just pray.

Thank you to everyone for your kindness and support and prayers. We could not have done this without you.

4 comments:

  1. Oh Congatulations!!!!! That is awesome!!!!! God is in control. Our "unplanned" baby was such a shocker but has been such a sweet "little" (he's 25 lbs at 7 1/2 mos)blessing in our life!!!!

    I will continue to pray for Harrison...I love reading your blog and your strength that you get from God amazes me and humbles me.

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  2. WOW!! Congrats on new little one on the way! I'm so glad you've gotten some help! I can understand how you are def burnt out! I admire how you are doing so very well with all that is going on! You get the Mom of the Century Award! If I can help with anything, please let me know! Always in our prayers and thinking of you all the time! - Jill Lenox

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  3. Congratulations Lisa!!! I"m praying for you guys all the time!!! I can't imagine how hard it has to be to do the day to day things...I think you are amazing and I am in awe of you!! Thanks for the update on little man!

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  4. I'm pretty sure I have cat eye syndrome and I will be completing my genetic testing in May. I just wanted to say be strong and have faith in God! He is completely amazing. I was born with most of the same problems your son did and my parents never finished genetic testing on me. I'm 22 and currently in medical school, besides my surgeries when I was a baby, difficulty with overcoming some of the struggles my abnormalities brought, and ear reconstructive surgery at age 18 I have lived a relatively completely normal life! The only reason I feel like I should finish getting my genetic tests is to get 100% clarification on my exact genetic syndrome and my chances of passing it to my children (which they say is about 50% without fully knowing yet). Even if I do have a 50/50 chance they say in vitro fertilization with prior genetic testing on the embryos is doable and I can still have healthy children of my own.

    I enjoyed reading your ups and downs of a pregnancy with cat eye syndrome.. My parents went through the same thing.. infertility, unexpected pregnancy after getting dye ran through my mom's tubes to check for blocked ovaries.

    Thanks so much for sharing!!!!

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