Cardio Appt Today

Elijah had his cardiologist appointment today. The doctor was pleased with his weight gain and said that Elijah was actually in the 10th percentile for height, although he is well below the second percentile for weight. His lungs look better on the xray and we are going to try to scale back on his lasix dosage. Elijah is still showing narrowing in his arch and the blood is flowing the wrong direction through his PA. This can't be fixed until he has his cath and they address the collateral arteries.

All in all it was a good appointment. He was supposed to have a cath tomorrow, but he has been ill. Although he is doing really well and doesn't seem to have the cold anymore, the surgeon wants him to be symptom free for 2-3 weeks before doing the cath. They are looking to reschedule it for January. I'm a little apprehensive because with Noah around, I'm not sure if Elijah will be symptom free for that long and at the right time. It seems that we are constantly battling some little bug in our house. I guess that's what we get for having a preschooler in the house!

Thankful on Thanksgiving...

It's the night before Thanksgiving and I can't help but reflect on what I have to be thankful for. First and foremost I am thankful for my amazing husband. We have endured things I would not wish on my worst enemy and yet when I look at him, I still see the man I fell in love with. I still think of him as my partner, my lover, my friend.  I am thankful for my boys. The light they possess inside them is bright and shines freely. They too have been to hell and back and yet our house is filled with laughter and squeals. Looking at them, you would have no idea what they have seen and experienced.

I have to mention family when I contemplate my blessings. Both sides of the family have been amazing supports. We have had family members come to the hospital when Elijah has been admitted to keep us company. We have had family pay for Dion and I to get away for a few nights for some much needed sleep and time together. Family has come and watched the boys so that we could go on a date or attend a friend's babyshower. Family has committed to watching our fragile little guy every day for months in order to give us peace of mind and ensure our baby is safe. Family has watched Noah daily during hospitalizations and dealt with all of his emotions and fears. Family has stuck with us through this all and been there to stand tall when we were falling, there to hear us as we talked about our frustrations and struggles, there to wipe the tears away or just say that they understood.

Our friends have also been by our side through all of this. They have brought us meals, sat with us, and held our hands as they took our little guy back for yet another surgery. They call to check in and try to find ways to help.  Our friends have spent hours just sitting and waiting. Sitting and waiting.  They have become family.

There are two organizations that I must also mention. Sisters by Heart is a group that was formed to support newly diagnosed families. They are an amazing group of women that were there for me. They answered questions and guided me in the right direction. They are a great source of information and comfort.

Children's Hospital... they saved my child's life. Do I really need to say anything else? Their amazing doctors and nurses saved my child's life. While they saved his life, they saved our sanity. They are perhaps the most empathetic and kind people I have ever met.  I will forever be indebted to them.

Dr. Sklansky is our little guy's cardiologist. I have no words to describe this man. I have never met a doctor who would call on the weekend to check on a patient or call me after a doctor's appointment I was unable to attend to explain what happened and answer any of my questions. I can email him day or night and he will get back to me. He continues to fight for Elijah and I am forever grateful. He is assisted by a nurse named Ashley.  She gave me her cell number to call or text any time. When Elijah was in the very fragile stage between his first and second surgery, we were in contact daily. She was patient and kind.  She kept me sane. She kept me moving forward in a time when I just wanted to quit. If she didn't have the answers, she found them.

All of this to say that we are blessed. Incredibly blessed.

13lbs 4oz!!!!

That's right folks! I'm now doing my happy dance! After a full month of absolutely no weight gain, our little guy is finally putting on some weight! I'm hoping this is enough to convince his cardiologist that he doesn't need a g-tube.

12lbs 6 oz and 7.5 Months Old

Elijah had his cardiologist appointment this last Tuesday. He has not gained even once ounce since last month. This is beyond frustrating. His doctor brought up the idea of a G-tube, but said that we still had a little time to work with Elijah before we would have to take action. After talking with the dieticians at UCLA, we are now adding oil to Elijah's bottles and fortifying with extra formula at night. He is also eating baby food now. It's frustrating because he eats what a typical 7 month old would eat. But he doesn't gain any weight. His body works so hard that he just burns everything we put into him. He can't eat more because his body can't handle more.

We had to cancel his cath that was scheduled for next week because he has come down with a cold. So far he has handled the cold well, and is one happy baby. The doctor also said that he isn't getting any blood flow through the PA that has the stent and that he still has decreased heart function (it isn't beating as it should). But he was happy to report that it hasn't gotten any worse. As of now, Elijah will have to go in for another cath at the end of this month and hopefully they will be able to address some of these issues at that time.

On another note, the boys had a good Halloween. Noah had a fabulous time trick-or-treating, but the baby was asleep and unable to join us. I added some pictures to commemorate the evening!