This personal story is written by Kristy Pry, Isaac’s Mother. It is straight from the heart and about how she found out about Isaac being born with HLHS and the processes he went through to survive.
I will start from the beginning.
We found out we were going to have another baby. We were all so excited. I had a lot of complications and I was very sick from the getgo. I ended up having gestation diabeties. THey did many sonograms , I had stress tests done every few days. AND they still say nothing ever showed any problems. My water had broken and they sent me home anyway, because the doctor that was to deliver was out of state. So I got sent home.
I ended up being 10 days past my due date. I was to be induced on Feb 23, 05. In the end Isaac decided to come on his own. I went into labor that morning, got to the hospital and he was born at 12:01 pm. He weighed 8.71/2 and was 19 inches long. That night my husband brought my daughter home. My mom came to the hospital to stay with me. I hate hospitals.
That night I kept telling the nurses something was wrong they would not listen.
They said” it was just mucus”. He was still very blue.
They said “it was just due to the cord around his neck 4 times”. He still wasnt feeding. He was breathing very fast.
The next day my husband came with my daughter Karly. They took pictures of Isaac.
The nurse came in and took him to the nursery she said “they would be back in 10-15 minutes “.
Isaac never came back.
They wouldn’t tell us anything other than he couldn’t breathe. Five hours later they came and said “they thought something was wrong with his lungs”. They did a test on his lungs and they were fine. Then I was told his heart was failing. Isaac wasn’t going to make it. They contacted cardiology at Janet Wise Children’s Hospital, Danville PA. They diagnosed Isaac with HLHS, which basically means he has half a heart.
Now the big thing was to get Isaac to Danville. Life flight couldn’t fly because we were in the middle of a snow storm. Danville was only two hours away from Altoona Hospital. The hospital was to start Isaac on prostaglandin to keep the Ductus open. They didn’t have it there becuase it has a low shelf life and was rarely ever used. Danville came and got Isaac. It took them six hours to get to us. But Isaac made it.
My husband took my daughter to my sister to look after, while we went to be with Isaac (my brother-in-law came and got us). He took us to Danville. Before Life Flight and the nurses left with Isaac I wasn’t allowed to hold him. I did kiss him good bye. They made me leave the room so they could insert a breathing tube.
They came back and got me to say goodbye.
They told me we were not to follow them to Danville because if they had to pull over it was because Isaac stopped breathing. Well,l we followed anyway.
They pulled over two times.
Later we were told it was due to the oxygen running out. They got Isaac there safe an sound. It was a few hours before we could see him. Around 4 a.m. they came and told us we could see him. But don’t touch him, talk to him, nothing – they didn’t want him worked up. We got in there and Ii could have just died. I nearly collapsed. There was my baby boy just lying there with all kinds of tubes and lines connected to him. They let us stay for the ECHO that they did which was a few hours long. We were made to go to a Motel to get some sleep.
A few hours later we went back and met with the suregon who was doing Isaac’s operation. He told us “Isaac didn’t have a good chance but there was no other option but to have the surgery” to give Isaac a chance at life. However, they did give us another option but that’s not an option in my eyes.
Just let him be and let him die.
I couldn’t do that.
I needed to give my son a chance, we went on with surgery. Isaac was 5 days old. They let us go on the morning of his surgery for five hours to hold and love Isaac. They took him away. My heart just broke into a billion pieces. It’s not supposed to be like this. I’m not supposed to be saying goodbye for possibly forever. Hours went by and then the suregon comes out. The surgeon says Isaac came off the bypass successfully, it’s going to be touch and go but take it a day at a time.
Then a few hours later we got to see him. Once again I nearly collapsed. There was my precious baby boy just 5 days old, lying there, cold, in a drug induced coma, I wasn’t allowed to kiss him, hug him, touch him, nothing not even talk to him. We were allowed to be with him for 10 minutes at a time every hour. They soon had him off the vent, then within days, weeks tubes and lines and the medications started being taken away. The last line to go was the picline. I was there when they removed that and I was taken out of the room quickly when they took the line out because Isaac almost died. He bled out. The pic line attatched itself to the artery and they did not know it. When they pulled it out a chunck of his artery was attatched to it which is why he bled out.
He then needed another blood transfusion. Within a few days he was sent to the NICU. Isaac was having trouble eating he ended up having reflux severely. They put him on pre-gestimal, pre-digested formula. We added rice to to thicken it so he wouldn’t be sick so much.
We had to take CPR and first aid in order to bring him home. We had to learn to give his meds (medication), and draw them up. A few days later we got to bring him home. We were at the local ER constantly because of his blue spells and due to this they carried out the stage 2 early. That went well. We were home in 10 days. We still had many visits to the ER. He was life flighted to Danville, admitted with RSV, phenomnia. They also carried out a cath before stage 2.
They did a MRI and saw that something was very wrong. Isaac had no blood flow to left lung. They did a cath and it showed his pulmonary artery was a 100% blocked.
He needed an open heart surgery before they could do the completion of the staged surgeries.
They took him in a few weeks later and repaired the pulmonary artery but ithin three days he was rushed to cath lab. He had completely clotted again, he was in the cath lab for nine and a half hours. They had to stent him, not long after that we were home. He had many more CT scans and MRI’s. He was on lovenox injections twice a day for over a year, as well as being on asprin. They took him off the injections and got ready for stage 3. They did a cath and weren’t sure if they should do it because of his pressures being to high in the atrium. They postponed surgery for a few months. They then did another cath and went on with surgery.
In 2007 they did the Fontan procedure.
Three days out of surgery isaac died.
They were able to bring him back.
They lost him because he was o’d on fentnal and ativan. A few days later they thought he was in renal failure. He still had no blood flow to his left lung. We got sent home a few weeks later.
Isaac’s oxygen in his blood should be high 90′s but Isaac is still 70-80% with still no blood flow in the left lung. He’s got a total of 3 stents in the pulmonary artery, platnium coiling closing off an extra vein that was leaking blood around his heart. His aorta is narrowed and new narrowing found in his upper chest. nothing has been done to it yet – but it could mean another open heart. He’s had 4 so far.
- He does Physical therapy, occupational therapy, and speech twice a week.
- He still has reflux and they think he could possibly be taking seizures so he will go to Neurology on January 16th 2009.
- They also think he has Celiac disease and he is having a scope done on February 5th 2007, along with a biopsy of his kidneys and liver.
- He also has hearing issues and his eye sight isn’t great but it isn’t really bad either. His vision is 20 30.
He’s still on many meds:
- Captopril for blood pressure,
- Oxygen for blueness and shortness of breathe,
- Zofran to help with puking from his relfux,
- Prevacid for his reflux,
- Milk of magnesia for constipation,
- Asprin to act as a blood thinner.
Resource breeze to help make sure that he gets all the vitamins and nutrients he needs.
He hadn’t gained weight in 2 years but a few weeks ago he was weighed and he had gained 2 lbs!! WOOOOOOOOOHOOOO…I was very happy. However, we think it was due to him being full of pooh. With albuteral breathing treatments he can have that up to every 2-4 hours.
You may wonder what we did with our daughter when this was all going on. She was at the hospital as well. We couldn’t leave her behind with her grandparents anymore. Her great gram had passed and we told her that gram was the moon and the stars.
When Isaac got life flighted, it was at night and she said he was flying away from her cause he didn’t love her anymore and he didn’t want to be her brother and that I didn’t want to tell her he was gone.. So as you can see it’sand it was better for her to be there.
After the surgeries she would see him after they pulled the breathing tube. We would cover Isaac from the chest down, so she couldn’t see the tubes or anything. She would go in and sing him their song “broken road” rascal flats, give him a kiss and she would be ok after that.
Karly played a big role in him getting better. They are very close.
We took her to movies, she met other kids there.
We would take her outside and they would tell us to make happy memories with the kids. Cherish every moment and we do.
A lot of you don’t know what it’s like to go to bed and be afraid to wake up, and not know if your son is still alive or with god. .
A lot of you do know and guys we need to make awarness.
We need to get all infants tested before they come home.
A simple ECHO can detect a heart defect or even a simple pulse oximetry reading PLEASE PLEASE help raise awarness.
(for more information please click on this link Every Baby Needs Testing for CHD:
It may not have happened to you but it can.
It happend to us.
We live in fear constantly.
I will update as time goes on please keep checking back!!
To contact Kristy or just to view her MySpace page and keep up with what is happening with Isaac, click on the link below.