Happy 3rd Birthday Jilly!

Jilly turned 3 years old November 17 2012:)  She had a Finding Nemo themed birthday party since that became her favorite movie after watching it in the hospital every day as it was one of the only movies they had.  Lot's of her friends came to celebrate with her and she had the cutest Nemo outfit!  Thank you Lord for 3 wonderful years with Jilly!

Surgery # 3!!!

Jilliana's 3rd surgery was postponed to August 6th due to her testing positive for a cold.  Her surgery went perfectly!  After surgery she went to the CICU (cardiac intensive care unit) but was moved to the step down unit the next morning!  A lady that works with the kids after surgery told me she has never seen a child move as quickly to the step down unit as Jilly did:)  She did wonderfully however her oxygen levels were much lower than they should have been, (they were low 80's sometimes even the 70's and should have been in the 90's) and they couldn't figure out why because she was acting fine.  (Before her surgery they were in the 60's!)  Usually the chest tube is the thing that keeps kids in the hospital the longest because it can keep draining and draining but she got the chest tube out (that was disturbing to watch and the ONLY time I broke down because they had to tie this string really tight to close the open hole where the tube was and they were pinching her skin she screamed so bad it was terrible) and was still on oxygen which wasn't the norm and was pretty annoying.  They discovered why her levels were so low which is kind of hard to explain, as I'm typing this it's November and her surgery was in August so I can't remember all the specifics but basically there was a vessel somewhere that was opened that shouldn't have been.  So after being in the hospital for 2 weeks they were going to do a heart cath August 20th to see if they could find this vessel and close it.  Mommy was pretty depressed about this, Jilly was almost completely recovered and was now going to have another procedure, more recovery time and there was a good possibility that they wouldn't be able to find the tiny vessel or if they did wouldn't be able to close it because it could rupture or what have you.  The morning of the heart cath (a Monday), the cardiologist informed me that quite a few different cardiologists had been discussing her situation because over the weekend her levels had improved  so they decided if they were still good on Monday they wouldn't do the heart cath.  Well her oxygen levels WERE good.  They think that tiny vessel closed on it's own which apparently happens sometimes, the body corrects itself.  Her cardiologist called it miraculous.  I was so happy and thanked him and he said "I didn't do anything, I guess there's a God somewhere haha" so after 2 weeks in the hospital the day she was supposed to have the heart cath, she went home!  So many people prayed for Jilly and I truly can't thank everyone enough for their prayers and for caring about her!  I was able to be there to send Aidan and Rylee to their first day of 3rd and 1st grade (Aug 22nd) which I was worried about missing!  God always provides, He always comes through.  We just have to trust in HIM and give it to HIM He is in control.  When we got home from the hospital Jilly didn't even make it to the house she went straight to the playground in our apt complex to play with her friend Maddie:)  Thank you Lord for protecting Jilly I'm so thankful she is HERE!!!          

Surgery #3

Jilliana's 3rd heart surgery, the fontan, is set for June 19th!  (The first surgery she had, at one week old before she even left the hospital, was the BT shunt and the second one, at 6 months old was the BiDirectional Glenn.)  I'm so nervous but I know we will get through it.  I've been thinking about this surgery since I was pregnant with her and found out her diagnosis.  This will no doubt be the hardest surgery since she is older now at 2 1/2 and talking and more aware of what's going on.  What a journey it has been but we are finally almost done with surgeries for a long time!  I pray for God's protection over the whole situation is Jesus' name *Amen*

Why I do what I do

There is not a day that goes by that I don't thank God that Jilliana's congenital heart defect was diagnosed so early.  The earlier a CHD is caught generally the better chance the baby has.  If a baby is not diagnosed during the pregnancy and no one knows there is something wrong until the baby's health begins to decline after he or she is born then it's a race against the clock to figure out what's going on and what needs to be done.  At my very first ultrasound at 11 weeks they saw something wasn't right!  (They couldn't tell that something was wrong with her heart that early on but saw excess fluid around her head) so by the time it was time for Jilly to be born her heart defect was already completely diagnosed so then everyone was ready and knew exactly what to do when she arrived!  That is what I want for everyone who is pregnant with a CHD baby.  While we may never know what causes congenital heart defects or how to prevent them (although hopefully one day we will!) we can do our best to make sure they are diagnosed before the baby is born and hopefully spare a precious little angel from losing their life...a mother and father from losing their child, a brother or sister from losing their sibling, a grandparent from losing their grandchild, an aunt or uncle from losing their niece or nephew..so I feel compelled to share what I have learned about CHDs with everyone and tell my pregnant friends to ask about their baby's heart...not because I think something will be wrong with their baby, (I think their probably won't be ANYTHING wrong) but because by that rare chance that their little one happens to be that 1 in 100 like my Jilly was I want them to have the best chance possible!!!  So that is why I do what I do:)  

*heart hugs*

Jilliana Noelle Corcoran

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 it wasnt working out...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 Corcoran. 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.  Jilliana is now 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!