Day 1
This photo is one of the very first we have of Joey. He is in his transport carrier, about to be taken by ambulance from Huntington Hospital to Children's Hospital Los Angeles. We are forever grateful for all of the doctors, nurses and surgeons that Joey met along his journey, and you can see her from this very picture that it takes a lot of support. If you look very closely, you can see Joey slightly opening his eyes to look for us, and I will always remember that moment.
Day 2
After Joey was born I only got to hold him for a few seconds before he was taken to the NICU to be prepped for transport. It wasn't until this moment, 4 days later that we were able to each take turns holding him. Joey remained intubated until about day 10, but it was so nice of the nurses to help us move all of his lines and wires and hold him most days. Once he was off the vent, we still had the external pacer wires and box to deal with for the 12 days following, which still made it a challenge, but totally worth it.
Day 3
A baby's heart is formed within the first 28 days of gestation; a CHD occurs usually before the woman even knows she is pregnant.
You never want your baby to need surgery, especially a life-saving one. And finding out during your pregnancy, doesn't really make it any easier. In his first 20 days of life, Joey had more procedures, surgeries, and anesthesias then my husband and I combined. On day 6 he had a catheterization balloon procedure to open a hole in his heart that was closing and to allow oxygenated blood to mix in his heart. One day 8 was the big surgery, Arterial Switch Operation, VSD and ASD closures, and stenosis repair. Surgery went "beautifully" and "perfectly", every doctor stopped us in the halls to tell us that they had witnessed it. Day 9 was chest closure and Day 20 was pacemaker placement. .
This photo was the only one taken post surgery on Day 8. Nothing can prepare you to see your child in that condition. Tubes and wires and pumps and pacers coming from everywhere. After open heart surgery they also leave the chest cavity open to allow for swelling. It. Was. Rough. But also strangely calming, to LITERALLY be able to SEE your son's heart beating, knowing that it was repaired by the most skillful hands. To SEE the results of the miracle that had just occurred... not many people can say that. .
Day 4
In the US, twice as many die from CHDs each year than all forms of childhood cancer combined. .
I will forever cherish the video that we have of this very moment. You'd never think that you would love to hear your baby cry, but this was the first time (besides the few minutes after birth) that we got to actually hear Joey cry. It was perfect. He was intubated for the first 12 days he was alive, and we couldn't hear him cry, cough or make any peeps. It also was a little more of a struggle for Joey to get off the vent because he was dealing with a partial lung collapse as well. Although the crying in this photo was pretty much silent, it was so nice to finally see his face with only a nasal cannula. This was also the first day that he got to try some of Mama's milk and although they would later have to put the NG tube back in, he started off pretty well with his feeds! .
At this point Joey remained in complete heart block and was being fully paced by his external pacemaker. Some of the nurses were really nervous about letting us hold him because maneuvering the pacer box and wires was a big challenge, but we were glad that the nurse this day helped Jamie hold him!
I will forever cherish the video that we have of this very moment. You'd never think that you would love to hear your baby cry, but this was the first time (besides the few minutes after birth) that we got to actually hear Joey cry. It was perfect. He was intubated for the first 12 days he was alive, and we couldn't hear him cry, cough or make any peeps. It also was a little more of a struggle for Joey to get off the vent because he was dealing with a partial lung collapse as well. Although the crying in this photo was pretty much silent, it was so nice to finally see his face with only a nasal cannula. This was also the first day that he got to try some of Mama's milk and although they would later have to put the NG tube back in, he started off pretty well with his feeds! .
At this point Joey remained in complete heart block and was being fully paced by his external pacemaker. Some of the nurses were really nervous about letting us hold him because maneuvering the pacer box and wires was a big challenge, but we were glad that the nurse this day helped Jamie hold him!
Day 5
Believe it or not, this photo was taken just two days before we got to go home! And the very first time that his face was completely unobstructed!!❤ Joey's scars will forever be with him. He has his chest scar, which was opened twice. His sternum was pulled shut with wires, which will forever be a part of him as the bone grows around it. He has his pacemaker scar above his belly button. This will be opened at least one more time in a few years and he will soon earn another scar above his chest when they move his pacemaker. He also has two drain tube scars, which are some of the most visible because they were punctures. He also has three tiny dots where his external pacer wires were for 12 days while in heart block and some small scarring on his neck and ankle where is PIC lines were. We were lucky to have some of the best heart surgeons choose to mend Joey's heart. Dr. Vaughn Starnes is renowned in his field and is thought to be one of the best in the country. And Joey wasn't the first Sbicca that he worked on. Over twenty years ago he did Joey's Great Grandfather's surgery and just a few years ago he helped Joey's Great Great Aunt Jean's heart also! Dr. Cynthia Herrington was the second surgeon and she was great as well. She studied under Starnes and has helped so many babies and children at CHLA! .
Day 6
This photo was taken moments after we found out that we were going home the next day. We were still in the CTICU, and expecting to move to CVACUTE, the step down unit, to continue recovery, but during morning rounds the attending simply asked, "do you want to go home tomorrow?" My answer was an immediate, "yes!" I think we skipped right over the step down unit because Joey had 12 days of recovery and feeding practice while we were waiting for his heart block to clear up, so once they got the pacemaker in and he recovered from that surgery, he was ready to go home! .
The next day was a mix of excitement, nerves and complete terror. We had spent 24 days in the hospital, Joey hooked up to tubes and wires and machines that told us his stats at every moment, and nurses and doctors that responded to every beep and alarm. Then all of the sudden, on that morning, they unhooked him from everything and handed him over... it was the best day and the mix of emotions was overwhelming. .
Day 7
Day 8
The last in my CHD Awareness Week series. And it fitting that we celebrate during Valentine's Day because my love for this little nugget is so immense. He has added so much bright light and purpose to Jamie and my life. Happy Valentine's Day, Buddy! .
For one week each year people are reminded of CHD Awareness and the special love that goes into caring for our little ones born with a broken heart. My family is reminded every day. But it is a good reminder. It's a reminder that knowledge, care, support, and love can help our littles live happy, healthy lives. ❤
For one week each year people are reminded of CHD Awareness and the special love that goes into caring for our little ones born with a broken heart. My family is reminded every day. But it is a good reminder. It's a reminder that knowledge, care, support, and love can help our littles live happy, healthy lives. ❤
Joey is special because he is a heart warrior. Who had fabulous doctors and nurses. But he also has 2 very special parents that were there for him every step of the way. And grandma and papa feel blessed he is in our lives.
ReplyDelete