Originally: Buggle's Drew's journey

[CaptHeather]

Buggles
Member


I thought that I would share the journey of my son, Drew. He lived 5 weeks and 4 days and was such a little fighter. I'm just going to copy and paste from his memorial website, if you'd like more detail, I kept a day to day (or every couple of days) journal of his progress at http://allaboutbabydrew.blogspot.com .
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Raymond and I decided to start trying for another child when Elizabeth was around 15 months old. We wanted about a 2.5 year age difference in our children and figured that it would take a while to conceive. It was important to me that Elizabeth have a sibling as I’m an only child and Raymond enjoys his siblings so much. That and the fact that we just wanted another child!

I discovered that I was pregnant around July 6, 2005. I was approximately 5 weeks along. We were so happy! However, the minute that I saw the first positive pregnancy test, I had a very strong feeling that something was not right. I tried not to let it bother me but the feeling never would go away.

On October 17, 2005, we went in for my routine ultrasound. The tech spent quite a bit of time looking and taking pictures. She had a student with her. With our daughter, we did not find out the sex until she was born. We were kind of waffling on whether or not to find out this time and I had decided that I wanted to know. It’s a good thing because the very first shot showed without question that our baby was a boy.

The tech said that she couldn’t get the views that she wanted so she went to get a radiologist. The radiologist looked a bit and then all 3 left the room. The student came back in and asked if I minded if she practiced on me. Of course not! That just meant that we got to see our baby even more! We left with no indication of any kind of problem.

I had my routine OB visit on Wednesday the 19th. My OB told me that they had problems getting a clear picture of all 4 chambers of the heart. Raymond and I found that odd because we clearly saw all 4 chambers ourselves. My OB gave me the name and telephone number of a perinatologist that I needed to call to make an appointment for a more detailed ultrasound. He was expecting my call. My anxiety level went up but I tried not to panic.

I called the peri’s office as soon as I got home and they WERE expecting my call and worked me in the very next day. We went for the ultrasound and got some 3D and 4D photos of our son, Drew. The perinatologist then came in and looked. He said that what the hospital had thought was correct—our son had a condition known as a congenital diaphragmatic hernia. I thought, “A hernia, no biggie, that can easily be fixed.”

Dr. Stanley then explained in more detail what we were facing and the picture was not good. They gave Drew a 50% chance of survival. We were told that the condition is genetic in about 25% of cases but based on our history, the odds that it was genetic were around 5%. We were then told that we had two options: 1) terminate the pregnancy, or 2) continue the pregnancy and see what happens. I told the doctor at that point that I did not think that termination would be something that I could or would consider.

We were shell shocked. There were a lot of tears, research and discussion done that Thursday night before we ultimately decided that termination was not an option for us. I told Raymond that even if Drew died in my arms, I needed to hold him and let him know how loved he was. I don’t think at that point that I knew how prophetic my words would turn out to be.

I decided to have an amniocentesis to rule out additional birth defects. The results came back clean and yes, we were definitely having a baby boy. My emotional state during the pregnancy was not great. All I could think about was how much I wanted my baby to be ok.

My OB care was fully turned over to the perinatologist and I saw him about every 3 weeks. In December, I began having horrible back pain. Nothing would ease the pain. I was much larger than I was when pregnant with my daughter and I was happy about that. She was full term and only 5 pounds, 11 ounces so I wanted Drew to be larger.

In early January, I was diagnosed with polyhydraminos, excess amniotic fluid. My AFI got fairly high and the main concern was pre-term labor. I opted to receive injections of betamethasone (steroid shots) and had to go into the office twice a week for non-stress tests until the end of my pregnancy.

Drew’s heart always sounded very good at the NST. It was decided that I would be induced around 38.5 weeks, March 7, 2006. I regret that decision now but at the time, it seemed like the best way to go. By attempting to “control” my labor, we could ensure that the entire medical team that was needed would be on hand.

My induction began around 1:30 a.m. on March 8. The pitocin stepped up my contractions considerably—there was no break between them and they were very short and intense. After about 9 hours on high doses of pitocin, I had only dilated to 4 cm. I decided at the point to have a c-section (another regret).

Raymond “Drew” Lewallen was born at 11:58 a.m. on March 8, 2006. He weighed 7 pounds, 10 ounces and was 22 inches long. He was a good sized boy! I heard 2 or 3 very weak cries and then they whisked him to the other side of the room and intubated him. I never got to see him.

[CaptHeather]

Before he was medi-flighted across the way to Children’s Hospital, he was brought to my room. All I could do was touch his hand and cry. When he heard my voice and felt my touch, he opened his eyes and tried to turn his head toward me. Then he was gone.

I was transferred to another area of the hospital and had Raymond wheel me to the NICU fairly quickly. It’s amazing what having a baby in the NICU will do for your recovery time. We had to sign all sorts of consent forms. At one point, a surgical resident came into my hospital room when everyone had gone so I was alone. I signed consent for a chest tube and PICC line.

Drew had to go on ECMO (extra corporeal membrane oxygenation) when we was about 30 hours old. He was suffering from PPHN—persistent pulmonary hypertension. There is an area in the heart called the ductus arterosis. While in utero, blood flows from the mother to the placenta to the umbilical cord to the heart and back. In the vast majority of children, this ductus closes after birth and the blood begins flowing from the heart to the lungs and back, oxygenating the blood and removing carbon dioxide. In CDH babies, PPHN is a big problem.

ECMO is basically a heart/lung bypass process. There are 2 different kinds, venovenous (VV) and venoarterial (VA). Drew was on VV ECMO which utilizes minimal support for the heart and focuses on the lungs. VA gives maximum support to the heart and lungs. Drew’s heart was always very structurally strong and, aside from the PPHN, had no real problems.

The odds that we were given regarding coming off of ECMO successfully were 1 in 3, not very good odds. But Drew was the one in three. His PPHN began improving and he was taken off of ECMO support after 15 days on it—March 24, 2006. He had no problem coming off of it. He had a large hematoma on his right shoulder, it was approximately the size of a baseball but that was really the least of his worries.

We let him rest for a few days and then he had his surgery on March 29, 2006, at exactly 3 weeks of age. Until surgery, the amount of lung tissue and the actual severity of the hernia were all speculation. It turns out that things were worse than we had been anticipating.

Drew was in surgery for approximately 2 hours. His surgeon came out to talk with us after he was done. Drew was missing 80% of his diaphragm, a HUGE hole. They used the largest gore-tex patch that they had available and it still did not cover the entire hole. There were some places that he was even missing the “rim” or “lip” of the diaphragm so the patch had to be stitched in creatively, attaching it to intercostal (rib) muscles and the like.

ALL of the normal abdominal contents were in his chest: stomach, intestines, spleen, pancreas, part of the liver, etc. Some of the organs didn’t look “normal” but the surgeon did not think that would affect their function. Chances were very good, almost a given, that Drew would have to deal with severe reflux since the diaphragm did not close tightly around the esophagus as it usually does.

He was missing the phrenic nerve that contracts the diaphragm when you breathe. Drew would have to learn how to breathe using his abdominal and intercostal muscles but it would be the normal way to breathe as far as he knew.

His right lung was approximately 80% of normal size which is pretty good. His left lung was 20% of normal size which is not so good. His heart was not far over to the right and would migrate into a more favorable position on its own now that the abdominal organs were out of the chest.

Drew did very well during and after his surgery; after some pretty bad blood gasses he began stabilizing. His incision was about 7 inches long and took 17 loose stitches to close. He was left with a hiatal hernia because of the tight fit in his abdomen.

Fluid began accumulating around his left lung in the empty chest cavity which in turn compressed the lung affecting any function. He now had 2 chest tubes and that were draining an abnormally large amount of fluid. The draining of that fluid affected his metabolic balance as it consisted of protein but if left in, it hurt his lung.

Things began to turn bad around April 9, 2006. That was the last day that Drew was awake. Pneumonia or an infection of some sort was suspected so cultures were taken to be grown and he was put on antibiotics. No infection ever showed on his cultures aside from pseudomonas, a fairly normal colonization that forms around vent tubes. His antibiotics were changed and directed to fight that colonization (never reached an actual “infection” stage). At one point we walked into his room to find that he had been removed from the conventional ventilator and put back on the high frequency vent (oscillator).

His blood gasses were coming back consistently bad and he had periods where he would desat (oxygen levels going down) for extended periods of time and severely. His urine output basically stopped and his BUN (measure of kidney function) was well into the 100’s. Five to six is normal.

We were told on Friday, April 14, that if his kidneys did not begin working to pull some of the fluid off of him that his heart would start to be affected and we would have to make some decisions on how/if to proceed with treatment. The surgeon told us that if Drew did not show drastic improvement before the weekend was over, he did not think that Drew’s chances of survival were good.

On April 16, 2006, Easter Sunday, we were forced to make the decision that no parent should have to. We decided to let Drew go. He was tired and had fought so hard. I also suspect that there was some brain damage due to the frequent and long periods of desaturating.

Drew was pronounced dead at 3:29 p.m. on April 16, 2006. He died in my arms. They disconnected his respirator and he did not even attempt to take a breath on his own. The official causes of death were respiratory failure, renal failure and cardiac failure (PPHN). We miss him terribly.