The Power of Prayer

Sorry it has been so long since Ihave updated. I know a lot of you follow my parents, Hunter’s family, or myfacebook, but this will give you more information on our crazy rollercoasterride of emotions the past few weeks.

            So how the hearttransplant list works is there are 3 groups from most critical to leastcritical, 1A, 1B, 2.  Christian was a 1A(most critical), so even if he had been on the transplant list for 1 day and a personthat was a 2 with the same blood type had been on the list for 6 months hewould get the heart over the 2.  Christianis now officially inactive on the transplant list.  He remains on it, but as of now he no longerneeds a transplant, but if something were to change they don’t want to wastetime with the paper work again so he is inactive instead of completelyremoved. 

We never thought as parents we wouldbe faced with the possibility that our child might have to receive a hearttransplant.  I cannot explain the painboth Hunter and I felt.  I pleaded withGod to heal Christian, as I had done so many nights and days before.  After we met with the transplant coordinatorI hated God.  I could not understand howHe could have me pray to Him for another mother to lose her child so that minemight live. I could not do that. My heart hurt. I honestly cannot even begin todescribe how much pain I felt. I had what I can only describe as a brokenheart.  The coordinator gave usstatistics of survival rates.  BasicallyChristian would have a 50% chance of survival if he could make it past thefirst year.  Why my baby?! I told God thiswas not fair. I might not have always been the best Christian, but I certainlydid not deserve this, and my baby was an innocent.  I had so much anger and hate in myheart.  If I heard another person saythis was part of a bigger plan I was going to scream. 

The next day Dr. Pizzaro turneddown Christian’s pace maker so that his heart could do the beating and the pacemaker would only kick in when needed as well as he was being weaned from theremi pain medicine to morphine and Ativan. It was a little hope I needed toreinstate my faith in God.  I decided Ineeded a night at home from the hospital so that I could sleep in my own bedand regroup on everything that had happened. On my way home I just broke down. I gave Christian to God completely.  I told him that my child was in His hands andI trusted Him to do what was best for my sweet boy.  I asked him to heal Christian so anothermother would not have to go through a loss of a child, but that whatever Hiswill I would accept.  I was listening toChristian radio and Third Day “I Need a Miracle” came on.  It was the first time I had ever heard thesong, but it really touched my heart.  Iasked God for a miracle. I needed a miracle. I truly gave Christian up to God, but I asked God for just a miracle ofhope.  God listened and blessed us withanother day of good news. The doctors did not understand how Christian wasdoing so well when 2 days prior he was put on the transplant list.  The power of prayer is an amazing thing.  He began to improve each day and was takencompletely off the pace maker.  December10 Dr. Pizzaro came to us and said he was doing surgery the next day.  Christian would be getting the Norwoodprocedure done.  Praise God.  I cried with so much joy as did Hunter and allour family.  God was answering prayersand although we would have liked for Christian to not have to receive any heartprocedures, we were so thankful he was improving each day and that the hearttransplant was not the only option we had anymore. 

            TheNorwood procedure went well.  Theyactually had to stop his heart and put him on bypass in order to perform the Norwood.  There were no complications and everythingwent smoothly.  It was the longest 5-6hours of my life. He remained stable through the night; had minimal drainage,good urine output, good vitals, and blood gases looked great.  God continued to heal our little superman andDecember 14, just 3 days after surgery he was off the ventilator.  He had been on that for a total of 15 days.  Due to the fact he had the oxygen tube for solong; it had caused his left vocal cord to become partially paralyzed.  This should heal itself in time. 

December 16 Hunter got to semi holdChristian for the first time.  He had hisarms under him on Christian’s bed.  Ialso got to do this as well as change my first diaper.  It was a wonderful day!  They began to feed him through a tube December17, which went directly to his intestines. This was so he could get the nutrients from my breast milk that I hadbeen pumping, without overworking his heart by sending blood to his gut toprocess the food.  Each day somethingeither came out or was improving. 

All of our family was home byDecember 18 so Hunter and I had to decide how we were going to handle the dogsand stay with our son.  We decided wewould do a 2 night switch.  Hunter’s workhas been really working with him so he has only had to go in every so often.  We haven’t been able to spend nights witheach other, but it has been a good plan for us because we are each able to gohome take care of things we need to and get a good night sleep in our bed. 

December 19 speech therapy came andtried to feed Christian by bottle.  Hedid well and took 8 mL.  He has beenhaving a difficult since, but we continue to pray for his feedings and taking abottle.  December 19 he was also takencompletely off his pain meds.  He wasmore awake and alert and it was wonderful seeing his big bright eyes.

December 20 Christian had a littlehigh white blood count so they started him on an antibiotic to make sure thatthey could take care of it before it could become a concern.

Christian’s last major line, RA line,came out on December 21 and Hunter was able to hold his son and snuggle him forthe very first time.  When I received thepicture I cried with joy.    

I was able to hold my sweet boyDecember 22 for longer than a minute.  Ohit was the most wonderful feeling.  Itwas a big day because Dr. Pizzaro decided that Christian was doing so well hecould move to the recovery floor.  Wewere now able to stay at the hospital in the room with Christian instead of theRonald McDonald House down the road.  Wewere actually getting to do normal things like hold our baby whenever we wanted,give baths, and change his diaper.  Theymade Christian portable with a portable vital pack that was linked to the nurses’station.  We do have his feeding bag on awheeled bar we have to lug around if we go anywhere. 

December 23 was the first dayChristian was able to wear clothes. Hunter put him in a darling baseball outfitsomeone had gotten us.  Our baby wasbeing able to be more and more like a normal baby.

Christmas day we both spent timetogether at the hospital.  There was a Santathat brought a big bag full of gifts to Christian as well as a family that hasa boy with a CHD.  He received a bunch ofpresents and I brought some back Santa had left at our house that he could useat the hospital.  One thing was amobile.  He absolutely loves it.  He watches all the fish go around. 

The past few days they have beendoing some test to determine the best method in feeding Christian at home.  He needs to be getting enough nutrients sothat he is able to gain weight for his next surgery, the hemifontan/glenn.  The doctors seem to thinkthat a g-tube is probably our best option due to the partial paralysis in theleft vocal cord and he has a bit of reflux. The G tube is a tube inserted into Christian’s stomach.  There is a machine that we will hook him upto for his feeds.  Although this is notsomething we would like for our baby we do want him to be able to grow healthyand this is a sure way of that.  We willstill be able to try and work with him on feeding him by mouth and eventuallywhen he is able to get adequate nutrition by eating by mouth the g-tube can beremoved. 

December 26 the stitches came outand his incision looked good.  I was expectingsomething hideous and gruesome, but it wasn’t at all. 

They tried to pull his ND tube(feeding tube in the nose to his intestines) up to his stomach.  This was not a success and he aspirated a bitinto his lungs so they put it back down. This is another reason for the G-tube. They will also tighten where the esophagus opens to his stomach so thatthere is little chance for aspirating into his lungs again.  This will grow with him and will not affecthim long term. 

They did a pacing wire test onChristian to see if the rhythm issue he was having earlier was due to anelectric malfunction in the heart.  Thetest came back normal and he was able to get his wires out December 28.

We are now in the waitinggame.  The only thing keeping us in thehospital is the feeding.  We are unsurewhen they will schedule to put the g-tube in. We are more than ready to come home with our big boy.  He will be 5 weeks old on Tuesday.  Please continue to pray for Christian andimprovements that go against all the pessimistic doctors.  We are so proud of our little fighter and thankGod every day for blessing us with such a beautiful little boy.  Thank you for all the prayers and for theencouragement.  We also want to thankeveryone sending us gift cards and money to help us out with our stay.  We appreciate you all more than youknow.  We pray God will bless you as youhave blessed us.  We also pray that yourhearts are touched with our little fighter’s testimony of the power of prayer.

 

Here is a recent picture of Christian Matthew.  He looks amazing!