Connected By Heart...
The Congenital Heart Defect Journey CHDers and
CHD parents travel on is never easy, but it can be filled
with so much joy despite everything and CHDers give
so much joy
Journey: passage or progress from one stage to another
Joy: something or someone greatly valued or appreciated
& the emotion of great happiness
Today is all about J's... What better way to represent
the journey and the joy than three CHD warrior stories
that all have a name starting with J...
Today is the three J's...
Jacob's Story:
It all started when I was going for my six month ultrasound and I was told I was having a healthy baby girl, I was a bit confused because I didn't feel like I was carrying a girl. So as I patiently waited on the arrival of my second daughter I told a few people that Lisa was going to have a sister. Got a few gifts cute girl clothes pink teddy bears and such. On July 1st, 2001 I hit my 42nd week the doctor said to go to the hospital to be induced. When I arrived the doctor gave me Pitocin to induce the labor. I was progressing along nicely the pain wasn't too bad until I was about 7 cm dilated I needed an epidural. It's a wonder drug, I felt nothing. After about 7 hours I was ready to deliver I had trouble with the pushing either due to the epidural (cause I couldn't feel anything) or cause his head was so huge. When I finally pushed him out the doctor told me I had a beautiful baby girl I named her Arianna. As he handed my daughter over to the nurse to be cleaned she called him over. They were talking amongst themselves and the doctor came over to me and said we are not sure if the baby is male or female and they were going to place him in the NICU as a precaution. As the nurse was giving him tests she heard a murmur and proceeded to do an echo on him. This is where they found he had Hypoplastic Left Heart Syndrome. They gave him medication so the ductus arteriosus would remain open. This was the only thing that was flowing oxygenated blood through his body this is why he wasn't blue at birth. If it wasnt for the ambiguous genitalia they would have put him in the regular nursery where the ductus arteriosus would have closed and he would have had nothing but deoxygenated blood flowing through him. He was then transported to Columbia Presbyterian to have his first surgery done. He had his first open heart surgery at six days old they gave him a survival rate of 80% because he had a good weight. He was 7 pounds 13 ounces (I still the 7 pounds was all head) Jake was almost not a candidate for the surgery cause the small stent was too small and the medium one was too big.
His surgeon Dr Ralph Mosca was awesome he cut the medium stent till it fit. He was in the hospital for 3 months after the surgery just known as Baby Rosa. During the time there he had some genetic testing done to see what his sex was. Was it a boy, was it a girl, or just a hermaphrodite. When the test came back it showed XY Chromosome he was a boy (xx=girl) (xy=boy)(xxy=hermaphrodite) So he was now Jacob Ryan Rosa. When I finally brought Jake home he was loaded with medications around the clock and a feeding machine. I needed a visiting nurse who was late he was screaming cause he was hungry, he wouldn't bottle feed so I tried the bolus it leaked all over him I cried to my mother to bring him back to the hospital because I didn't know how he worked. Jake is now 4 months old I see a huge bump on his head. I brought him into the ER where they x rayed him while waiting on the xray he fell asleep a nurse walked by and looked at him and asked if he was OK when I looked at him he started turning grey the nurse went took his blood and it was coming out purple he had no oxygenated blood flowing through him. They admitted him upstairs by the time he got upstairs the bump was completely gone. Jake was soon transported to Columbia Presbyterian where he was put in an oxygen bubble which didnt work. So he went to the OR for an angioplasty. His O2 sats were still poor so they decided to do the second stage of the surgery early. His weight wasn't good enough for it but without it he will die. He came out of the surgery with few complications and was released in 5 days. He was doing great. By the age of 2 he went for his last surgery. For the next few years he was doing very well. By age 4 his heart rate was dropping to 40 BPM so he had to wear a 24 hour heart monitor upon reviewing the results the doctor said that Jake was flat lining every 3 seconds throughout the night it was time for a pacemaker.
He is now 10 and bouncing around like a typical 10 year old boy should. He is about 2 years behind his physical age. He is in Special Ed and takes speech and occupational therapies he no longer needs physical therapy.
Joshua's Story:
I was about 16 weeks along when I went for an ultrasound. I've always been high-risk because of being diabetic and losing 5 babies. I saw the flicker of the baby's heartbeat and thought everything was ok. Then the doctor came in and said "As you know, we're looking at a large hole in the heart." No, I didn't know. The next few weeks were a whirlwind of genetic testing and the OB kept asking if I wanted to abort. For me, no matter what the outcome would be, I couldn't do that. April 28, 2009, Joshua was born via c-section. The NICU at the hospital gave him to me to see for only 2 minutes before they transferred him via ambulance to the Children's Hospital of Michigan. I busted my butt to get discharged so I could be with my baby. I didn't get my staples out for a month because I wouldn't leave him to go back to the other hospital. First time I saw him, I was terrified. I wasn't prepared for him to look like that, with all those wires and tubes. :( They had done testing to see what all was wrong and he was diagnosed with Tetrology of Fallot, Pulmonary Atresia, Complete Atrioventricular Canal Defect Type A, as well as a T3 hemi-vertebra and an inferior and swiveled right kidney. The BT shunt was done at 8 days old. Unfortunately, my sister, brother and cousin were also due around that time so I was alone. He was in the NICU for 3 weeks and before he could be discharged, I had to learn CPR as well as how to place his NG feeding tube. The NG tube was the scariest for me and deservedly so.
He wound up pulling it out at least 5 times a day and was later diagnosed with choeneal atresia and CHARGE Syndrome as well. He had failed his newborn hearing screening four times and it was discovered that he had bilateral sensorineural hearing loss. At 4 months of age, he received a G-tube and at 10 months, the Mick-y button. He was in OT and PT to help him to learn and eat and develop his gross motor skills. He had a heart cath in Oct. '09 and it was discovered that he would need the repair soon and his O2 sats were at 49. So on Nov. 10th, at 6 months of age, he had his tet repair. He had to be reintubated four times as he kept crashing. His breathing became retracted and it was discovered that his right lung had collapsed and blood was pooling around his heart. That was horrible for me to see my baby struggling like that. They had to do a conduit as opposed to the patch so he will need surgery to replace the conduit every 2-5 years. His mitral and tricuspid valves both leaked after the repair but the tricuspid closed up on its own.
He had surgery to repair the mitral leak, replace the conduit and do a pulmonary angioplasty on Aug.23rd, 2011. He suffered a min-stroke post-op and it took weeks for him to fully recover but thankfully, he did recover. He has also had surgery on his ears and his testicles. For now, he is a happy, smiling, amazing warrior and I couldn't be prouder to be his mom.
<3 Sarah, mom of Joshua, Age 2 1/2
Jilliana's Story:
When I found out I was pregnant with Jilliana I was a single mom of 3 so I was not happy about it. I had been dating someone but decided He wasn't right for me but then I found out I was pregnant. I had gone through 3 pregnancies so I knew the drill and I was planning on getting an ultrasound to find out how far along I was but then not going back for a while after all I had been through all this and I felt like if God wants this baby to be here it will be here. Well at that ultrasound I found out I was 11 weeks pregnant. The nurse didn't act very happy or smiley which I thought was kinda strange but I didn't think too much of it. A few days later I got a call that I needed to come in and talk to the doctor because something was wrong with the baby. Apparently there was excess fluid around the baby's head and the doctor was thinking the baby possibly had Down Syndrome, Turners Syndrome or some other condition resulting from a chromosomal abnormality. I was definitely shocked. I had 3 healthy kids so the LAST thing I was worried about was something being wrong with the baby and I immediately felt guilt for at first wishing I wasn't pregnant. I have also never been the type to worry about my baby being healthy and didn't understand why people worried about that when it's so rare that something will be wrong. At my next ultrasound the fluid was gone but it appeared that there was a heart problem. Since the fluid was gone I thought the baby was fine and that they just didn't get a good enough picture of the heart. But I assumed wrong.
More ultrasounds confirmed that the baby, which I found out was a girl, had Hypoplastic Right Heart and would need heart surgeries which really broke my heart. The doctor told me that most couples who's baby has what mine had choose to terminate the pregnancy. I knew that was never an option for me as I am pro-life and well, now was the time to prove it. If she died I didn't want it to be because of me. My doctor would remind me that I could still terminate the pregnancy and I could up to 24 weeks but my answer was always no I'm not gonna do that. My kid's pediatrician told me that it's rare that babies with HRHS live so you can imagine how upset I was to hear that! I didn't buy much for her as I wasn't sure if I would be bringing a baby home! It was terrible I was preparing myself to possibly have to say goodbye to my baby.
My due date was December 2nd 2009. I was scheduled to go in for a c-section the morning of Nov. 17th but I had never had a c-section and was incredibly nervous. They were planning on doing a c-section because she was measuring to be over 9 lbs and my 3rd child was 8 lbs 11 oz and I had a hard time delivering him so they were afraid she would get stuck which would be extra terrible because of her condition. Also I was borderline gestational diabetes and babies of moms with gestational diabetes tend to be bigger and there was also a risk to babies of moms with gestational diabetes of passing away late in the pregnancy so to avoid all that they were just going to deliver her early. They were going to do an amniocentesis first to make sure her lungs were developed which I was VERY nervous about because they stick a long needle into your stomach and draw fluid from around the baby and test it to see if the baby's lungs are developed enough to be born. When I got to the hospital I was already 5 or 6 cm so I was already in labor so there was no point in the amniocentesis because she was on her way regardless of her lungs. I was so relieved to not have to get one done! I was still nervous about the c-section though and upset that if I got a c-section I wouldn't be able to leave the hospital and go to Nationwide Children's Hospital to see the baby the next day. Labor progressed well and the nurse thought I should just go ahead and deliver her naturally since I had already had 3 naturally before. So that's what I did and I'm glad because she was only 7 lbs 13 oz.
I named her Jilliana Noelle. She was the ONLY one of my kids that cried when she came out and she was the one with the heart problems, she was a feisty one from the start. Everyone knew exactly what to do and immediately started doing whatever they needed to do. I only held her for a couple seconds then they took her to the NICU. She was there for an hour or two and then they transferred her to Children's Hospital where they were waiting for her there. That night I spent at the hospital without her was difficult but they let me lave the next morning. I went to see her in the NICU at Children's. The next day they transferred her to the CICU. I cried every time I went to see her it was so hard seeing her with tubes and stuff everywhere and I wished I could stay there all the time but I had my 3 other kids I had to take care of. My daughter Rylee was so excited about having a baby sister and it broke my heart when she asked "where is baby sister?" after she was born but didn't come home. She had her first heart surgery, the B.T. shunt, the day before Thanksgiving.
It went well and she finally got to come home Dec. 4th. She needed a 2nd heart surgery at 6 months old, the bi-directional glen. So the first 6 months were spent trying to get her as big as possible for her 2nd surgery. I had to weigh her every day and write it down in this 3 ring binder and subtract the weight from the day before and that difference needed to be a certain amount or I needed to call the heart center. I also had to write down when she ate and how much and she was supposed to eat 24 oz a day but she never did so her formula was extra concentrated. If she ever ate less than 13 oz in a day I needed to call them and they didn't want me to let her eat for long periods of time because she used up a lot of calories eating so they wanted her to eat a lot quickly. I had to check her heart rate and oxygen saturation and write those down as well.
It was a lot of work but she was really chubby when it came time for her 2nd heart surgery which was May 12th 2010. She got up to the 80th percentile for weight! Her 2nd surgery went well. After her chest tubes were removed fluid did re accumulate on her lungs which was causing her her to have a hard time breathing and her lips were blue and her sides were sucking in real deep it was hard to see. I was actually holding her I think they gave me her to hold while they got stuff ready and it was very scary to see her that way. She was in the hospital about a week for the second surgery.
Now Jilliana is 2 years old and will be having her 3rd surgery, the Fontan, soon (as she is supposed to have it when she is 2.) She is as feisty as ever and although she has slimmed down and is now on the thin side, (she doesn't eat much), she is doing wonderfully!
I thank God for her every day and I want people to know that if your
baby is diagnosed with a serious heart defect it's NOT
a death sentence and they can have a mostly normal life!
**Congenital Heart Defects effect 1 in 100 babies
born...CHDs are the World's number ONE birth defect
and birth defect killer... Get educated and BE AWARE!!**
**A great CHD Organization: Children's Heart
Foundaton.. .if you go to Build A Bear and buy a limited edition
Valentine's Stuffed animal, a portion of each purchase will go
to the Children's Heart Foundation for CHDs!!!**
www.childrensheartfoundation.org (go to there site to read all about
CHDs and Build A Bear fundraiser)
