VACATION!!!

We finally went on our vacation about a week and a half ago.  We really had a great time!

We went to Destin and it was absolutely beautiful!  The water was perfect and it wasn't too hot.  J really loved being in the water.  He also enjoyed the sand.  I think his favorite thing was riding in the elevator at the place we stayed!!!  He is so funny!!

Some friends were at another beach near by so we met up with them one night for dinner and Putt Putt.  J LOVED riding the little rides and the Go Carts!!!

Of course there was some stress at the beginning of the trip and I was a little worried, but it really ended up being a great trip for the three of us to be together.  We all enjoyed ourselves and are thankful we were able to take this trip before J's surgery.  We continue to be blessed in amazing ways.

 

Katie

Thoughts of a mother

As J's surgery looms closer I can't help but think about his birth mother.  I often think of her, but she has been in my thoughts and prayers more often recently. 

When we first received J's referral we were under the impression that his parents split right after hearing all the medical problems he had.  Anyone with basic knowledge of Chinese culture knows about the one child policy and how, because of this policy, most people want perfect (a birth mark is known as a special need) child.  So it wasn't hard for me to believe that his parents left as soon as they heard their son wasn't perfect.  It made me angry and mad until a friend told me that the quality of life had to mean something to them because they actually had him.

We know that he was his parents SECOND child.  He has an older brother.  In order to have a second child they probably had to go into some sort of hiding.  And then to actually give birth to him they had to spend a lot of money to go to Hong Kong (which is not considered China and multiple children are allowed) to have him.  To go through all of that and then find out that he had some serious problems must have been heart breaking.  While in HK we found out that they didn't sign off on him for a month.  My thought over the past week has been..."what were they doing during that month?"

They were in the hospital that whole month.  Watching their newborn son, who they had already sacrificed so much for, go through so much.  What were they thinking?  Were they scared of the family humiliation they might face at home?  Were they concerned about the money?  When did they first think to leave him?  Since they waited as long as they did, I KNOW they must have loved him and I'm sure the sacrifice they made of leaving him there was the hardest thing they have ever done. 

Then I think about his brother.  I imagine that he is something very special if they wanted to have another child just like him.  How did he handle this sacrifice?  What is he like?  Does he look like J?  Does he ever think of his brother?

My mind of course always goes back to the mother.  I can't imagine the pain she went through leaving her son in that hospital knowing she would never see him again.  I imagine that she is still in pain.  Does she think he is dead?  Does she think he is in an orphanage?  I pray she feels a peace that he is loved and being taken care of.  I pray God is giving her a peace now more than she has ever had.  I pray that if she doesn't know Him that somehow through the experience of losing her son, she has come to know His Son.

I know J will ask all of the questions and more when he is older.  We were told to tell him that his parents loved him very much.  I really hope we all one day get see his parents and tell them how much their sacrifice meant to us and for all of us. 

I'm so thankful for this mother.  The woman whose womb God chose to knit my son in.  Because of her I have the best gift God has ever given me.  The only way for me to repay her is to pray everyday that she knows about God's sacrifice for her.  And if I don't get to meet her here...maybe I will meet her in eternity.

Katie

The plan

So Jonah had the heart cath procedure on Tuesday.  He did not, however, have the MRI.  There were many reasons for this that I won't go into.  The doctors got the information they needed from the cath.

The doctor who performed the procedure and our cardiologist will present the information to the board this coming Wednesday.  For now the plan hasn't changed...he will have the Fontan surgery in June.  Our doctor is going to call us after the discussion with the board to schedule the exact date.  After looking at all the information they suggested we go ahead and have him "wired" for a pacemaker while they are preforming the Fontan.  His heart rate dropped quite a bit during the procedure and that made them a little concerned.  He does NOT currently need a pacemaker, but there is a possibility he will need one in the distant future.  Having the leads already there will ensure that he won't have to have open heart surgery if he does need a pacemaker.  We like this idea!

We stayed in the hospital over night and I'm really glad we did.  Now we know kind of what to expect.  We know all the rules, we know what is available to us and what is not, and we now know a lot of the nurses we will see next time.  I'm already making plans for what we need to take and how we will maneuver everything while we are in there.  We were also able to meet the surgeon who will be doing his open heart surgery and from what we have heard and read, he is amazing.  He is going to have a bit of a challenge because of J's situs inversus, but we feel confident he can do it.

Overall, it was a good experience.  J did great, but I know it was hard on him.  I'm really praying for next time.  I'm not worried about how he will physically handle everything next time, but I am a little worried about how he will emotionally handle everything.  So far he is doing well, but I'm always concerned about how certain activities will affect him.  While his attachment to us has been supernatural (only from God), it is easy to forget that he has only been home for 2 and a half months and we are still in the middle of the attachment process.  That is why we still haven't let many people keep him (only our parents) and we haven't left him for long periods of time. 

I'm honestly not worried about the procedure, I'm worried about life after the procedure.  My God is faithful though and He continues to give me peace.  I'm so thankful that I can cast my cares on Him!!

Katie

Heart Cath Day Pt. 2

He's doing well.  Was up for a little while this afternoon.  He ate some jello and had some water and is now sleeping pretty hard.  Our moms just left and now it's just me and Katie here.  We met the surgeon who will do the operation and the family counselor came by.  It has been a very positive day so far.

Heart Cath Day!!

Today we're at LeBonheur getting the heart cath.  Things are going well.  They took him back about an hour ago.  He was doing fine until they put the mask on him.

Procedure Update



Well...we had planned to be in the ICU this weekend, but that is not where we are.

Wednesday night J was not acting like himself.  He didn't eat dinner!!!!  That is not my boy!  He also had a fever.  He continued to decline all day Thursday.  He had fever on and off. He didn't eat much and he slept a lot.  He would wake up crying because he just did not feel well.

I spoke to the nurse at his pediatrician's office a few times that day and also a lady at the hospital.  When he was still running a very high fever at 4:30, we decided he should not have the procedure on Friday.  I was sad that we weren't getting it over with, but I knew there had to be a reason he wasn't suppose to have it that day.

His fever finally broke Thursday night and he woke up Friday feeling fine.  I guess it was just a bug or something.  I spoke with his cardiologist (Miss Dr Jean) Friday afternoon.  She said that since they didn't do the heart cath Friday, they (she and another cardiologist that would be doing the cath) looked at his file again.  They decided that they wanted to add an MRI.  The reason is because they are used to doing the Fontan on kids under the age of 3.  Since he is almost 5 and his insides are special, they want to make sure they know exactly what they need to do during the surgery.

She doesn't really like the fact that they have to add 30 minutes to his anesthesia time, but she still feels like it is the right thing to do.  So we are just waiting for them to reschedule.  We are pretty sure it will be this Tuesday or Friday.  They will be doing the heart cath, MRI, and abdominal ultrasound.  I was very happy to find out that they have room for both of us to spend the night with him in the ICU.  I'm so glad we get a run through before his surgery. 

Please continue to pray for us during this time.  We are all really looking forward to our vacation that is coming up!

Katie