Elijah at birth

Elijah before surgery

Elijah after surgery

At home finally

Elijah 1st Birthday!!!!

Elijah was born on 2/11/2005 but his story started much earlier than that. At my 20 week check-up with my ob/gyn we did a routine ultrasound and everything appeared normal but we couldn't get a good view of the heart, because of his position, and we couldn't get him to move, because he was asleep. So we did another ultrasound a week later. The tech was very quite during the entire ultrasound so I couldn't really tell what was up but that Saturday I received a call from my doctor (can you see the big red flag—I did). She told me I needed to go to Hurley Medical Center (local hospital) to have a better ultrasound done.

The appointment was made for two day's before thanksgiving. I will never forget this day. The tech doing the ultrasound knew that there was a problem but for many reasons, they are not allowed to give parents ANY information, so she went and got the doctor for us. He came in looked at some pictures and moved the wand around on my stomach for about two minutes. When we asked what the problem was he told us flat out with no emotion that our son had hypoplastic right heart syndrome and told us it was correctable with surgery. He acted as if he was telling us it was a boy, not as though he had given us the worst new of our entire lives. He left and we went home, and started doing what anyone would have done, we started doing research online. There wasn't much out there.

There is a ton of information on hypoplastic left heart so, using some of this info, we looked for someone who could help us more and maybe get a second opinion. We found the U of M hospital in Ann Arbor. They have some of the best thoracic surgeons in the country. So we made a appointment. At that appointment we had a fetal echo done, we had our own private room and they sat down with us and explained the procedure and made the whole process a little less nerve-wracking. The echo took 2-1/2 hours. After they explained that they couldn't be 100% sure what was wrong, but they thought there was a problem with the aortic arch, and that he would likely need to have the entire aortic arch rebuilt. We scheduled a follow up and came back a month later. They then told us that things looked the same. So after much research we found that sometimes transferring a baby in his condition could pose more risks, so we made arrangement to give birth at U of M.

When Elijah was born, I saw him for only a few seconds before he was taken to the NICU. After birth I was in a haze. Once in the NICU, they did an echo, and inserted iv lines in his bellybutton and his hands and one of his feet they started him on some medication to keep him calm and another to keep the natural holes in his heart open, they had him on a nutritional fluid that replaced the milk he wasn't allowed to have and probably more that I didn't pay attention to. They had him off and then on then off and on the ventilator several times and we waited for about 12 hours to see him and talk to the cardiologists. They finally told us that he had a combination of defects that all amounted to Shone's Syndrome and that we needed to proceed with surgery or he wasn't going to make it because of the severity of the coarctation.

We waited for a week (it seemed like a lifetime) for surgery. The night before, I was finally able to hold my newborn baby and the nurses took pictures because this could possibly be that last time we would hold him. The day of surgery was horrible. We waited for about 8 hours. The surgery went smoothly. They had no trouble taking him off the heart/lung machine and no problems closing. Recovery was a lot faster that I would have guesses. He started to have some breathing difficulties but they went away and he couldn't eat on his own so we had to learn how to do the NG tube, but he was able to go home a week and a half later. Once home he quickly came off the NG tube and all of his meds in about six weeks. We felt so blessed.

When we had been home for about 3 weeks we ended up in the ER with symptoms that appeared to be congestive heart failure but it ended up being a flappy thing in his throat. At about six months we saw his eyes starting to cross and went to a ophthalmologist who said that his eyes were not crossing. He was right, Elijah has out grown that problem. Over the course of his first year he didn't really do much, at one he was barely eating baby food, he couldn't sit up on his own and didn't communicate other than crying. He was thankfully gaining weight. (He is small still, only in the 3rd percentile for his age) Since then he started therapy (physical therapy, occupational therapy, and speech) for his delays which are global. At 20 months he is just now starting to walk.

It's been almost a year since he has seen his cardiologist but so far he is great. There is always the threat the coarc returning or that he may need surgery to repair his mitral valve, but today we thank God for every wonderful day we get to spend with our beautiful son. God gave me the strength to keep going. I needed to be strong for Elijah and my daughter Elizabeth, who was 1 when Elijah was born. During this time in our life we leaned on God and he carried us. For all the other families out there in a similar situation, we are praying for you.

December 2006 Update

On 12/15/2006 we had a checkup with our cardiologists. They did an echo. The repair that was done on Elijah's aorta looks very good. The left side of his heart that was a little small is now normal size :). The mitral valve is the same a before and the bicuspid aortic valve, which was creating a murmur is getting better. Obviously the valve can't fix itself and grow another leaflet but it's allowing only a trace amount of bloodflow back into the chamber. They did see one thing that is a little bit of a concern. He has developed a sub-aortic membrane. This, apparently, has to be monitored so we have another checkup in six months. He was also just recently diagnosed with a condition not related to his heart called craniosyntosis. Currently we are waiting for our consultation with the surgeons. This condition will most likely result in surgery in the coming year.