Xavier’s Heart

My name is Sheree Gallegos, I am the very proud mommy to Xavier Gallegos and this is our story.

Early October 2008 was the happiest day of my life, I found out I was pregnant after going through a tubal ligation reversal and fertility drugs. My husband and I had all our dreams coming true, we couldn’t of been any happier. Everything was going good I had all the usual stuff going on like morning sickness and being tired all the time. We went to our first ultrasound appointment on November 12th it was Joshua’s birthday, my husband was so excited when they gave him a picture of his baby he looked liked a little peanut. All we could do was stare at his picture still in disbelief we really were pregnant.

For the next 17 weeks everything was as normal as could be. I was at a Dr’s appointment for my 24 week check up and found out I was having a boy and I was so excited , within days all my excitement turned to fear I had a feeling in my heart something was wrong. I told my husband babe I can’t shake this feeling that something is wrong with the baby.

He said “Honey don’t worry I am sure he is fine, the Dr’s would of told us if something was wrong”.

So I just kept it in for about another week and still something didn’t feel right so I called the Dr and said “I know you’re the Dr and I know you said everything was fine at my last appointment but I have a feeling something is wrong”. She said “come in next week and we will do an ultra sound but I am sure everything is fine”. So I sat in worried until my appointment date. We were in the Dr’s office and they finally called us back and I’m thinking here we go, as I lay on the table and watched my baby on the screen I remember just praying in my mind ‘God please let my baby be healthy, let all this just be my fear and tell me he is okay’. Within about thirty minutes the Dr was still looking and then all the sudden just walked out of the room without saying a word. She came back in with two other people and they start looking at it together and I knew.

I asked her is something wrong with my baby, she said “I’m sorry to tell you this but your baby has a very serious heart condition and I am going to have to send you to the Shuster Heart Center”. We went home and all our dreams had come crashing down, still at this point we did not know what his condition was and we had to wait another week to be seen by the heart Dr’s. The next week dragged on and on and felt like a whole year had passed and we were just living a nightmare. But nope it was still reality as we walked into the heart center. My husband and I sat there hand in hand not saying anything to each other but we knew what one another was thinking, finally we heard Mrs.Gallegos the Dr will see you now. We went into the room where he was going to do another ultrasound on our baby and waited for him to come in, he walked in the door and said “I understand your baby might have a birth defect so let’s see what’s going on with this little guy”. He started the ultrasound and was quiet the whole time – before we knew it he was done. He said “okay you can get dressed now and meet me across the hall to go over your ultrasound”.

We walked across the hall and sat down and said “okay we have been waiting long enough please just tell us what’s wrong with our baby”. He said “your baby has a rare birth defect called Hypoplastic Left Heart Syndrome (HLHS) but nothing could of prepared me for what he would say next, he said “your baby only has about 30% chance to live over 72 hours after his birth but there are a few options”. He also said “you can either put your baby on a heart transplant list or do compassionate care for him”. He went on to say that most babies with this defect die waiting to get a heart at that age because there just are not enough hearts to be transplanted. So he says ‘that leaves you with the option of compassionate care and that means you will take your baby home from the hospital on a pain medication pump and keep him comfortable until he passes away, and that way you can be with him. He said “he wont be in pain and will most likely pass in his sleep”.

I couldn’t believe the words coming out of his mouth I sat and cried.

Then he gets up and tells us have a nice day and let your Dr know what you want to do!

I went home and cried and screamed and cried some more. I yelled at God and cursed him for doing this to our baby. I even yelled at my husband blaming him. After about 4 days of not sleeping I finally laid down to take a nap. When I woke up I could actually think – I said “well I have to do something for my baby I cant just let him die”. I started looking up his condition on the internet.
I had to find a hospital that could fix him.

Then after what seemed like hours I came across the Texas Children’s Hospital web site and clicked on it, right there on the home page it said “they were number three in the nation specializing in birth defects of the heart so I looked at all the birth defects they had listed and low and behold there were the words Hypoplastic Left Heart Syndrome.

I finally had a glimmer of hope.

I looked for a number and called them, I told them what the Dr’s in El Paso were telling me and they said “we would like to see you”. We set up an appointment; even though it was still two weeks till they could see us I was hopeful. My husband and I made the 14 hour drive to Houston two weeks later and we had yet another ultrasound, and we were just hoping the Dr’s in El Paso were wrong and they were going to tell us something different – but the condition was still the same.

They took us into a room and sat with us and explained in detail what was wrong with our baby, they drew pictures and even used different colors so we could understand blood flow patterns. For once his condition made sense. Then came the options, either heart transplant, compassionate care, or a third option which is called the Norwood operations, they explained it was a three staged operation that would be done at different ages of his life but the first one to be completed at birth. We knew right away that this was the route we would take. They told us that he would have an 80 to 90% chance of survival through this operation even though there are many risks with this operation. We set up another appointment with this hospital and we went back to El Paso.

We were starting to think more positive. We took care of a few things, packed some clothes and we came back to Houston where we stayed in a motel for three weeks until we could find an apartment. We went to weekly appointments with the Drs here then at 34 weeks I started having contractions – I went into the Dr and they said “I was in early labor” and they put me on bed rest. A few days later I went into labor we went to the hospital. I checked in and they said “well your only at 2 centimeters so I think you will be okay just go home and rest and call your Dr in the morning”.

We came home and I knew I was in labor but they said “to wait and call my Dr in the morning”. I labored at home scared cause I didn’t want to have him at home with his heart condition. At 12:00 am we decided to go back to the hospital – I got there and they told me we told you this morning to just go see your Dr. I told her lady this baby is coming now they looked at me like I was crazy. They took me back into a room after a few minutes and checked me again and yup your in labor alright, by then the pain was so intense I asked if I could have a epidural, the Dr came in to give it and before he could give me the medication in it I had started pushing. One push and here he was. There were so many people in the room I had no idea what was going on, they rushed the baby out of the room. I didn’t even get to see him. My husband left the room to go see where they had taken him. He was born a preemie so we were thinking oh no he surely wont make it now, he had a heart condition now this.

To my surprise about 45 minutes later they brought him into the labor room in a little incubator and he only had a few heart monitors on him and a line going through his belly button. They opened a little door on the incubator and I touched my sweet baby for the very first time. He was so beautiful, he didn’t look like anything was wrong with him. He was tiny with a full head of hair. I got to see him for just a minute and then he was gone. They took my baby and my husband and they went to Texas Children’s Hospital and I stayed at Saint Luke’s. About four hours later I was able to go join my baby. I got into the NICU and it was huge with a lot of sick babies. I just sat by mine and adored him, I could not believe anything could possibly be wrong with this tiny but perfect looking baby. They let us stay by him for as long as we wanted.

Around 9 that morning Josh got a call from the army saying you need to be in El Paso by tomorrow. He told them we had just had our baby and he couldn’t go. They told him they didn’t have a choice. We then asked the Surgeon if there was any possible way he would just wait a few days to do the operation, he said “I cant we need to do this while he is still stable”.

We left the hospital, came back here and packed him a bag to go to the airport the next morning. Josh left and I was there with Xavier just hoping they wouldn’t do the operation till Josh got back. They came in the morning after Josh had left and said “it’s time we need to take him to the operating room”. I cried as I kissed my baby and told him to be strong and brave; and mommy would be right there waiting for him. I told him that the angels would be with him. As they walked down the hall with my baby and I had seen the doors to the operating room I realized how alone I was.

I went to a waiting area and sat.

I was there for about three and a half hours when I got a call from the operating room telling me that Xavier was doing good, they said “his chest was open, his heart was stopped and that he was on the bypass machine”. Thirteen hours later the Dr came into the waiting room and said “he was done”. I hugged the Dr and said “I want to see him”. About 30 minutes later they were walking me into the CVICU to see my baby. Nothing could of prepared me for what I was going to see as I walked into his room. He was hooked up to all kinds of machines, he had two chest tubes, IV’S pick lines medication running through all kinds tubes. He had pacing wires, and was grey, swollen and cold.

I hit the floor.

I went home, I could not stand seeing him like that. I knew my husband would be back by morning so I sat here and waited for him to go with me. Josh got home about 9 that morning and we went back to the hospital. He was on life support still and stayed on it for three weeks, he had good days and bad days. He would take 2 steps forward and 20 steps backwards.

Finally by his due date June 8th he was HOME can you believe it HOME. He has done amazing albeit a few set backs where he stopped eating and went back into the hospital for two more weeks. But after that he started really taking off. He is now 4 months old and weighs 10 pounds, he was 2 pounds in the CVICU – so 8 pounds he has gained in 3 months.

On August 5th he had his heart cath done and they put a stent implantation into his heart, he spent 2 days in the CVICU and came home. Xavier is going to be having his second stage of the operation called the Glen, on October14th. Xavier has brought so much joy to my life, he has taught me that as long as you have faith and never give up things can and will be okay. He is such a strong and brave little boy with a very special purpose in life. He smiles at me and I melt.

I don’t know what his future will hold for him but I do know he will be brave and come through whatever it is he is facing. Xavier’s heart may not be whole but I know he holds more love in it than I have ever seen in another person. He wakes up every morning with a smile on his face and is happy all the time. If he can endure everything he has and still smile, I know God is telling us that he will be okay. Through Xavier I see the meaning of life in a whole new way and I will not take one moment of it for granted again. I hope that by what we have gone through someone will see that terrible things can happen but if you keep faith and never give up things will be okay. God’s tests for us may be hard and we may not understand him sometimes but we are not supposed to, we are just supposed to trust him and have faith, and let him be in control of the lives he has created.

Forever Loving my Xavier.

Wrote by Sheree Gallegos
February 2010

Sheree Gallegos has given CHD-UK permission to use the photographs on this page.