Wednesday, July 6, 2011

Happy 8th Birthday, David!!

Today is a rough day for me and has been for eight years. My firstborn son was born today but he didn't survive to his next birthday. In fact, he never made it home. He only lived for five short months and then died in my arms. Today, I normally curl up with his scrapbook and cry but we have already packed up the scrapbook (it's in the storage shed hoping for someone to buy our house so it can come out again) so I'm making a long blog about it instead. Some people have trouble with this story and the pictures so if you're sensitive to this type of thing then don't read. I just feel like I need to get it out since I don't have the scrapbook right now. So, here's David's story.

I went into preterm labor at 23½ wks. The nurse told me the pain that I had been feeling were my ligaments stretching. Well, guess what -- they were contractions. I called my doctor on Sunday July 6, 2003 and told her that there was something wrong and she told me to meet her in labor and delivery at the hospital and she'd check me out. In route, I started bleeding. By the time I was at the hospital I was already 6 cm dilated. They tried to stop contractions but the ultrasound showed that he was already in the birth canal. At 7cm I pushed David out still in the sac to help protect him. The NICU ambulance was there to take him off to the hospital in GA. I had to stay in South Carolina for the doctors to keep an eye on me. It was horrible. I wanted to go with my baby. I wasn't able to hold him or anything. I touched his foot though.

The next day I was finally discharged from the hospital. David had already had two cardiac arrests and a couple of blood transfusions. Paul drove as fast as he could to get to the hospital. We had the emergency lights on and tried to flag down all the police cars we could so they could escort us or something. But, they all ignored us and let us drive 95 mph down the road. Any other time, they would have pulled us over and ticketed us.

We arrived at the hospital as David was having another cardiac arrest so they didn't allow us back there because they were trying to get his heart started again. This is when they took us to a room and told us all of the bad news... starting with the PDA. This is the Patent Ductus Arteriosus. It is basically a duct that runs from the heart to the lungs. When an infant is in the womb, the lungs aren't needed for air so the blood circulates through them too. On full term babies, the duct closes on it's own. On preemies, it's open and the blood flows into the lungs. This was happening on David. The other problem was that he had a grade III brain bleed. A grade I is the least severe and a grade IV is the most severe so a grade III is pretty severe.

After giving us the bad news they let us in to see our son. He was 1 pound 4 oz and 13"long. They said he was big so at least he had that working for him. For four days we watched him struggling to keep his oxygen saturation up but it kept falling. The medicine to close the PDA wasn't working.

At 23-24 wks old, the baby's heart is roughly the size of the very tip of your thumb. The doctors wanted to go into my son's chest and close a duct that ran from his teeny tiny heart to his itty bitty lungs. We had no other option so at four days old, my son had heart surgery.

This is my hand, and to give you an idea of how small my hand is, I wear a 4 and 3/4 size ring. You can see the tape near the tip of my pointy finger... that's from the surgery. He's also wearing the "shades" because his bilirubin levels were too high and the jaundice lights could have hurt his eyes. His eyes were still fused shut but they wanted to take the precautions. I wasn't going to argue.

Yay!! He could breath! Well, with the help of the intubation tube and machine. Obviously, his lungs weren't developed yet. Then, we had another problem - hydrocephalus. This is when the brain swells. A few things were going on in David's head. The ventricular fluid in the brain normally drains down the brain stem and through the spine but his brain stem was blocked up and the fluid couldn't get out. Also, he had PVL (perventricular leaukomalasia) which is basically pockets of fluid on the brain. He had to have brain surgery for a shunt which would drain the fluid into his abdomen (not his stomach but the abdomen).

These pictures were taken as soon as he was out of surgery. He was still a little drugged up though. In the bottom picture (from left to right) is me, David, and Angie. Angie was David's primary day nurse. She was absolutely awesome!

Things kept going up and down from there. At 6 wks, Paul and I were finally able to hold him.

Can you tell that I was super happy to be holding my baby?

 Eventually, he was able to get out of the heating bed to the isolette.

Here are a few pics of two of the g-parents with David in the isollette. The first one is my mom and the second one is Paul's dad.

David continued to grow and was eventually put on a CPAP which is between the intubation tube and the nasal canula....
He continued to grow. He had 6 more brain surgeries (all for shunt repairs/infections), laser surgery in both eyes for ROP (retinopathy of prematurity -- basically the retina was pulling away from the back of the eye. It's common in preemies), and multiple procedures like PIC lines and such. He got pretty big.

On the morning of Sunday November 23, 2003 (exactly 20 weeks from the day he was born) we got a phone call before it was daylight saying that David was not doing well. We rushed up to the NICU and all the lights were off except for the lights in one corner... David's corner. We went in there quickly. David's nursery had been quarantined with MRSA a few weeks previous and David had ended up contracting it shortly after. He was the last baby in the nursery to get it. The MRSA had gotten into his ventricular fluid so they put an external shunt in his head to drain the fluid out. Unfortunately MRSA spread to other organs and they were slowly shutting down. Paul and I were told we could either let his organs all shut down until he died or pull the tubes and let him go quickly. He was back on the full respirator mixed with hand bagging him because his lungs were doing so poorly. So, we did the only thing we could think of. Paul gave him a blessing. It was supposed to be a blessing to heal him but the words that came from Paul's mouth were a goodbye to him and telling him how much we love him. Now what we intended but a peace fell on us and we knew what we needed to do. The nurses and doctors were all in there crying with us because they had all gotten attached. Even the ones who weren't on duty came up there to say goodbye. I didn't want to hold David as the tubes were pulled but the doctor knelt down beside me and said that he or any of the nurses would be happy to hold him and he understood that it was terribly hard for me but I would regret it later if I wasn't the one who held him. So, I wrapped my arms around my little man as the tubes were removed. A moment later I felt the life leave and they called the time.

This was the first time we held him with no tubes....

I am grateful for the wonderful ward. With all the donations and the talents of them we were able to provide a funeral and an adorable little outfit, and a headstone for him.

I'm not really sure why this one is turned sideways... I can't get it to rotate on here but in my pics it is... oh well... turn your head. =o)
So, today is his birthday and I'm not really sure what to do for him. We used to celebrate it by providing service for others. This year, I haven't come up with anything. Just forming a big blank. Hopefully, I'll come up with something before the day is over but as of right now.... blank. I just want to stare at pics and cry. *sigh* At least we're sealed for eternity but it doesn't stop my heart from aching.
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