Wednesday, November 18, 2015

November 18 - Dear Nicholas Sparks (Guest Blogger Lisa Hoewing)

Dear Mr. Sparks,

We were diagnosed with CDH at 18 weeks through a routine ultrasound. I was not having any problems; we just wanted to know the sex of the baby.

After diagnosis, we saw a specialist every 4 weeks to check on the progress of his hole. It appeared that our son had a left-sided hernia with stomach and a loop of bowel in his chest cavity. Both lungs could be seen, however the size of the left lung was unclear. We live in Central Illinois, and our hospitals were unable to handle the CDH repair. My husband and I researched hospitals with successful CDH repairs. We chose Children's Hospital after meeting with the surgeons and touring their NICU. We felt very comfortable with the quality of their facility. They also had the ECMO machine, which we had been told that our son might need.

On February 2, 2002, I gave birth to Aaron Jacob Hoewing, weighing 8 lbs 12 ounces and 22 inches long at 6:37 PM. The delivery was a 39-week induction, and I delivered Aaron vaginally with help from the vacuum suction. I had a pretty normal pregnancy until the last 3 weeks in which I had excessive amounts of fluid, which is sometimes common with CDH babies because they are unable to take in as much amniotic fluid. He was delivered at Barnes Jewish Hospital in St. Louis, MO across the catwalk from Children's Hospital. When Aaron was born we heard a faint cry that sounded like a little lamb. My husband and I were excited because we had been told previously that he would not make a sound. He looked so beautiful and healthy on the outside that it was hard to believe that there was anything wrong with him. He was immediately intubated and placed on medicine that kept him paralyzed. His Apgar scores were 2 and 7. His initial heart rate was 46. CPR was begun, and he was then stabilized. We were told that we could gently touch him but not to stroke him. We held his hand and took quick pictures before he had to be whisked away. I told my husband and family to go with him while I waited for my epidural to wear off. The NICU doctor called me immediately after Aaron was admitted to tell me that he was stable and that they would watch him carefully through the night and would meet me in the morning.

I finally got to see my son the next morning. He was still on a regular vent but at very high settings. I was not allowed to hold him. Later that day Aaron was switched to a high frequency vent called an oscillator. The next day Aaron was put on Nitric Oxide, which he remained on through his surgery.

The surgeons came by to check on Aaron every hour. I did not know how sick our son was; we thought this was normal procedure. The surgeons postponed Aaron's repair until they felt that he was stable enough to handle the surgery. The repair was done when he was 5 days old in the NICU because they were unsure whether Aaron would handle being moved to the OR. The entire NICU had to be shut down for our son's surgery. We felt terrible because that meant that other parents could not see their children during this time. We found out later that surgery had never been done in the NICU before Aaron.

The surgery was a success. Aaron had enough muscle in his diaphragm that he did not need a gortex patch. His stomach, spleen, and loop of intestine had been put back where they belonged. The surgeons informed us that the surgery was just a small part of the entire CDH recovery. Aaron was not out of the woods yet.

On Feb. 19th, Aaron was placed back on a regular vent. WE FINALLY GOT TO HOLD OUR SON!! They took off the paralyzing medicine. We were beginning to see movement for the first time. Each activity was a big deal to us. The first time his foot moved, eyes opened, wiggled his fingers-- it was good medicine for both our son and for us. Aaron began recovering very quickly. His settings were lowered each day. On March 6, 2002, Aaron was extubated!

He was put on C-Pap for two days and then finally to nasal plugs at 30% oxygen. His medicine was switched from IV to oral medicine. We were able to try feeding him from a bottle on March 14, 2002. He seemed to have an oral aversion. The nurses explained that this was normal for babies who had been as sick as our son was. They have never had anything good put in their mouths before so naturally they hate anything put in it.

We worked on feeding issues for the next couple weeks while Aaron continued to get stronger each day. He was weaned from all medicines and taken off oxygen on March 28, 2002. We were able to take Aaron home on April 10, 2002 without ANYTHING!! He is presently on no medication or oxygen. To look at our son you would never know that there was ever a problem. He weighs 12 lbs 5 ounces and is 23 inches long. He is a happy baby, always alert and smiling. Everyone comments on how alert he is. We have Occupational and Physical Therapy that come to our house one time a week to work on range of motion activity. Since Aaron was paralyzed for so long, some of his muscles became stiff.

We know that Aaron's success is from the many prayers that were prayed on his behalf. We had several churches praying for our son ever since we were diagnosed. We believe that God has a special plan for our son. We are excited that we will get the chance to witness our precious cherub grow and become the man that God intended him to be.

Aaron's mom, Lisa Hoewing (Illinois) 

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