A finish line in site

Christian is scheduled to have the G-tube inserted Wednesday morning at 10:00 am EST. it should take about an hour and half. There is a 5-7 day recovery time. As long as every thing stays stable we should be out of here in the next 10 days! Please pray hard! We are thrilled there seems to be a finish line in site for this hospital stay. Although we have grown to know and love the staff here at A. I. DuPont, we are happy to say our goodbyes until his next surgery.

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!

2nd heart surgery I failed to mention

With everything going on I knew I would miss something.  Sunday when Dr. Pizzaro explained that Christian's heart rhytm was irregular he decided to go back in and put pacer wires to make his heart rate regular.  This was done at his bed side in the CICU, but he still had to reopen a little part Christian's chest and stick the wires in.  I do not know how this completely skipped my mind, but with everything going on that was an update I failed to mention. Obviously he did well and it is helping keep his heart rate up and not dropping to 80 like it was.  The wires are attached to a temporary "pace maker" to make the rhythm regular. After looking at the stats with this that is when the Dr explained that with all the complications with irregular rhythm and pumping function added to HLHS complete heart transplant was the best option for Christian.

Rock Bottom

Friday, November 30, 2012, was the hardest day for Hunter and I. We had to hand over our little superman to the surgeons to conduct Christian’s unexpected first heart surgery.  Because the pumping function of Christian’s heart was not improving with medicine, Dr. Pizzaro decided that it would be best if he did half of what they call the hybrid procedure and possibly do the other half later if there was still no improvement and eventually have to get the Norwood.  The procedure they did Friday was went in and put bands around the pulmonary arteries to help his heart not have to work so hard.  I was able to hold my baby and Hunter and I loved on him and cried over him.  When it was time to give him to the doctors we walked along side until we got to the O.R.  That has been by far the hardest moment in our life.  I came back to the room and just lay on my bed and cried for my sick baby.  I wish there was a way I could take his place, a way to give him my healthy heart.  Not being able to do something for your child to alleviate their pain is the worst feeling in the world.  As a mother you want to comfort your baby, and I can’t.  The procedure went well and we were able to see him right after surgery.  No one can begin to prepare you to see your 2 day old baby with tubes and wires coming out from everywhere.  It was the most painful feeling.  We both cried over our little boy.  The questions of Why?! Still flood our heads.  He remained steady Friday through Saturday morning. 

 

Saturday afternoon when we went into see him in the CICU he had a mask on with a “sun lamp” over him.  We were informed he had Jaundice.  Seemed like if it wasn’t one thing it was another.  Hunter and I have begun to read him books nightly before we go to bed.  We want him to know our voices and know that even though we can’t be with him 24/7 that we love him deeply. 

Sunday came and the nurse on Saturday night told us that Christian’s heart rate had been irregular throughout the night and she wasn’t sure what they were going to do, but she didn’t act like it was much of a big deal.  The phone call came a few hours later that Dr. Pizzaro needed to speak with us.  My heart sank I knew it was more bad news.  He explained that Christian’s heart he cannot recall having another patient with not only HLHS, but also having all the other complications, pumping and irregular heart beat.  He told us that if we proceeded with the Norwood Christian’s chances of survival drop substantially.  If he had a “normal” HLHS heart the Norwood would be the best option, but at this point he told us a complete heart transplant is the option we will need to go with.  I cannot even begin to explain the devastation I feel.  We will be talking to the heart transplant coordinator today to get on the list.  The problem is we are competing with people all around the world for an infant heart.  They are in high demand and the supply is sparse.   Christian has O+ blood so any O blood type would work for him and O blood is higher in the population so that is working to our advantage.  It is not a matter of days when he will get a heart, but months.  My heart aches for my child.  There is no pain greater.

So at this point our option for Christian is a complete heart transplant.  Hunter and I are both devastated.  I keep trying to understand the reasons behind it.  I try not to get angry, but I do.  I cannot seem to understand how someone that has thrown away a child with an abortion, or taken drugs during pregnancy, or has complete disregard for their children are given healthy children.  We appreciate all the prayer and encouragement.  I personally am not responding to anyone because I just don’t want to talk.  Please don’t take this personally.  What we are going through is something no one that has not been in our situation can relate too and we are wore out of hearing Christian compared to something or someone completely irrelevant to what he has or having to explain over and over what is being done.  We are NOT accepting visitors besides our family.  We ask for continued prayer through this very difficult time.  I keep getting told how strong I am and honestly I am at a breaking point.  I am emotionally drained and I really don’t know how much stronger I can be.  No one should ever have to endure the kind of pain Hunter and I are feeling.

Christian Matthew's Big Debut

Waiting to start induction

November 26, 2012, at 9 p.m. we were at Christiana Hospital getting checked in to deliver our little miracle.  They used what is called a Foley bulb to induce me.  I was not dilated at all.  This bulb was to stay in until I was 3 centimeters dilated which then they would proceed with Pitocin to start my contractions. I was to be able to urinate regularly, however, the bulb was not inserted far enough up and fell out shortly after it was put in while I used the restroom.  They had to come back in and insert another.  It was very uncomfortable as they put it in, so getting it done twice was not fun.  I dilated to 3 at some point in the night and they put me on the contraction medicine.  The contractions were not bad until around 2 p.m. the following day.  They came in and broke my water that I wish I had received my epidural before having done.  I had an excess amount of fluid the doctor said.  I went ahead and received an epidural around 4 centimeters after my water was broke. The doctor that did it seemed to take a long time to get it in there and poked me several times.  This too was very uncomfortable. I was able to sleep 2 hours and woke up to contractions.  The epidural was not strong enough so they tried upping the dosage 3 times, to the maximum amount.  When I was still in tears from the pain, another anesthesiologist came in to redo the epidural.  This doctor put the epi higher up and it took all of 2 minutes. I immediately felt relief and it lasted through the birth process.  Around 7:00 p.m. I felt as if I needed to push and the resident came in and I was 6 centimeters. Within an hour I was ready to push Christian out.  It took about 5 contractions, 3 pushes each, to get him out.  It wasn’t that it was painful, but that it was hard to catch my breath to keep pushing.  Little Christian Matthew Pauley made his appearance at 8:13 p.m. on November 27, 2012.  He weighed in at 7 lbs. 12 oz and was 21 inches long with a full head of black hair.  He was beautiful. The doctors told me he had came out like superman with a fist in the air like he was flying.  I got to hold him for a brief minute before he was whisk off to the ICU.  Hunter, Terry, and my parents were all able to go visit him while he was in the ICU. I needed stitches so I had to wait “patiently” to be able to see my beautiful miracle.  They brought Christian down in a little “container,” Grandpa Rolla called it his Farrari.  I was able to reach my hands in and touch my sweet baby, but not hold him or kiss him goodbye before he was transferred to A. I. Dupont Hospital in Wilmington.  Not being able to go with him was so hard.  How could I miss someone so much I just met? 

Terry and Hunter went up with Christian to Dupont and waited to see what the next steps were.  He was stable and they were able to get a room to stay in for the night at the hospital.  I was transferred to high risk maternity recovery and my mom stayed overnight with me, while my dad went home to tend to the puppies. The next day I was determined to get to my baby. Dad came to get mom so that she could get home and shower and get around before we all went up the see Christian. I talked with my doctor and because I was doing well and I was determined she signed my discharge papers within 20 hours of labor. We all went up to Dupont to see our sweet little boy.  It was so hard because I was not able to touch or hold him like a mother should.  He was in a little plastic tent to keep his oxygen regulated.  I talked to him and just watched him sleep.  He was so beautiful on the outside, why Did God allow him to be so broken on the inside. I just kept praying he was ok and that everything would come back normal and that his heart was miraculously healed.  Thursday we went home to get cleaned up and grab some things before heading back up to the hospital.  We received a phone call the doctor wanted to speak with us about what he saw on the echo.  When we got back up to A. I. We met with a doctor that was for the CICU (not Christian’s surgeon).  He explained to us that Christian’s heart not only had HLHS, but that it was also not beating the way they wish it was.  It had been moderately depressed while I was in the womb, and although it was only mildly depressed now; Dr. Pizzaro (Christian’s surgeon) did not want to risk the Norwood without first fixing the pumping of Christian’s heart.  He did not think Christian’s heart would tolerate the bypass machine very well during the Norwood and Christian’s heart needed to be stronger to undergo such an intense surgery.  He decided that Friday morning Christian would undergo his first open heart surgery to put bands around the pulmonary arteries to hopefully help with the way Christian’s heart pumped.  Thursday night was very long and I barely slept. The news just kept getting worse. All I could do was ask; WHY God WHY?!

First time I got to hold my sweet little angel

The start of our perfect little family

Just talking to daddy, telling him all about his plans

Our little hair ball

Hard to believe something so perfect on the outside can be so broken on the inside

Daddy looking after his little boy

First time I got to see Christian after I was discharged