Tuesday, April 1, 2008

Jude's Special Story

We discovered Jude’s uniqueness during a routine ultrasound to find out the gender of our first baby. After finding out we were having a boy, the doctor came in; she immediately told us that our baby had some issues. Her concerns were that our baby had a 2 vessel cord (the norm is 3 vessel ), that his arms and legs were measuring on the short side, and that because of his position, she could not see his heart. She explained to us that most of her 2 vessel cord babies are fine, but wanted us to see Maternal Fetal Medicine to be on the safe side. 

Two agonizing weeks later, we had our visit to Maternal Fetal Medicine where we saw a specialist and did another ultrasound. The news was devastating! The Dr. explained that our baby had skeletal dysplasia (dwarfism), and that it could possibly be lethal by not letting his heart and lungs develop correctly. He also informed us that our baby was a strong candidate for Downs Syndrome and wanted an amniocentesis done- which we immediately declined. On a bright note, his heart looked fine. 

We continued to see MFM throughout the pregnancy and watched as his heart and lungs developed well. They decided to take Jude at 37 weeks because he wasn’t growing well. On October 12, 2007, at 8am, Steven "Jude" Watts was born via cesarean section weighing 5lbs 2.5oz, and was 16.25" long.  

After a little O2, his breathing was fine, but they still sent him to the NICU because of his dysplacia diagnosis. They did x-rays and found that he had no breaks, and although his arms and legs were a little on the short side, he did not have dwarfism. He also did not have Downs Syndrome. He did have Grade I brain bleeding, and a tiny hole in his heart which doc said both were normal for a baby that is a little early. 

Due to a difficult delivery, I received general anesthesia and did not get to meet my sweet baby when he was born.  I got to meet him when I was strong enough the next afternoon.  I remember crying when we entered the NICU because of all the little babies crying, and I did not know my own baby's cry.  My husband smiled and encouraged me that I would find out why in a minute.  When the nurse handed him to me, I couldn't believe how beautiful he was and how much he looked just like me.  I was in love and thought Jude was perfect in every way!  And the reason I didn't know his cry is because Jude didn't cry.  He was such a good baby; from the day he was born 'til today he only cries when he is sick or doesn't feel well!  

The doctors continued to keep Jude in the NICU for a bit to run tests and found that he did not have the Suck, Swallow, Breathe skill down pat so he stayed there. We learned a week later that Jude had chromosome abnormality; the underlying cause of all his problems.  Lane and I were asked to do genetic testing but refused at the time out of fear.

For weeks we visited the NICU, but he never really was able to finish bottles consistently.  All the nurses commented on how alert Jude seemed and that he seemed to know what he was doing with a bottle, but he just didn’t have the strength to finish it.  The therapist even let me nurse him at night which he did so well with, just couldn't last long.  So we had a feeding tube placed so we could bring him home.  We brought our baby home November 28th!  I remember that day well!  I dressed him in the most precious outfit and we stopped on our way home to buy a Christmas tree.  Life seemed to be getting better and better.

Then Jude started getting sick.  He seemed to be sweating all the time no matter how cold it was and not being as alert.  Christmas day was the worst and we had to bring him to the emergency room the day after Christmas because he was having these weird spells when we fed him and he couldn't breathe.  A first for us because that something Jude always seemed to do well at maintaining a good oxygen level. 

We were admitted back to the NICU and the specialists poured in as the testing began.  The cardiologist checked him out and said he looked fine, and for two weeks Jude had all sort of tests run to find out what this problem was. And feeding him was a nightmare because it put him in so much pain. The nurses kept telling me he looked like a cardiac baby so I finally convinced them to get the cardiologist back in. 

When he came in he took one look at Jude and knew that his was having congestive heart failure. To our complete devastation, he was right. Jude was diagnosed with Left Ventricular Obstructive Hypertrophic Cardiomiapathy. In our terms, the lower, left ventricle of his heart (the part that pumps oxygenated blood to the rest of your body) was too thick and not taking in or putting out enough blood causing fluid to back up into his lungs. The normal pressure in a heart is 15; Jude’s was over 100. How he was holding on in his condition is completely the Lords doings. The cardiologist became very distressed and told me that without a surgery Jude wasn’t going to make it, but sadly he didn’t think it was operable.  He said all he could do was pray for us.  They gave Jude only days.

They started him on some heart meds to hold him together, while the family completely fell apart. The next day was awful as family and friends poured in to pray and offer their support.  Prayers and phone calls poured in from strangers and churches stretching out from other states. 

The next night a peace came over me and Lane and I prayed openly over Jude. We told God that we were very sad, but if he wanted to take our son we would be okay with it because Jude really belonged to Him anyway. We confessed that we were amazed at all the lives Jude had touched in his short three months of life, but it wasn’t about us or Jude. It was all about God and anything that had to happen to bring glory and honor to His name. We praised Him for giving and we praised Him for taking away.  We believed that God would grant a miracle healing in our baby and that doctors, nurses, and any other witnesses would be shown the glory of God.

The next day, they did an ultrasound on Jude’s heart and found that the pressure in it was only reading 47!! And Jude’s condition had improved and he had become stable. The cardiologist said they must have read the last ultrasound wrong, but I knew the Lord had done a miracle in our baby! After a couple weeks, we got to go home. 

However, during those weeks, Lane and I consented to the genetic testing in a measure to help Jude.  We discovered that Jude has Partial Trisomy 17. It is a very rare chromosome pattern (only about 50 cases ever reported in history) that is the cause for all of his major medical problems.  The condition was inherited from me.  This caused my a great grief and overwhelming guilt which the Lord has since delivered me from!  And there is a 50/50 chance it will affect our future children, making expanding our family too scary to do (still dealing with the Lord on this). **see below**

Today Jude’s heart is still improving with every visit. The pressure in his heart is back to normal, and he is only on oxygen at night and that too is improving. Jude now wears glasses and hearing aids and is still fed mainly by his feeding tube; such a small thing to worry over after everything we've been through.  The genetics doctor told us that because Jude’s condition is so rare that he doesn’t know what his future holds or how much future he has. However, none of us are promised five more minutes. We understand that everyday we have with Jude and each other is truly a gift.

Here are some pictures of our baby boy...

**In November of 2010, Lane and I were very surprised to find out we are expecting our second baby!  We were very nervous in the beginning, but the Lord showed us that He trusted us with one of His special children so we could handle another if that was His will.  So far, we have been blessed with nothing but good reports from the doctors.  Our baby should be here in July and we are so excited for this gift!