Henze, Jacob Nelson

[left:b0a04d9eda]http://www.cherubs-cdh.org/Album/new/henze-jacob2.jpg[/left:b0a04d9eda]My husband and I got married in April 1995. He already had two children from a previous marriage, but we knew we wanted to have at least one together. We decided to have a year for us before we started trying. In May 1996, we found out we were expecting. We were so excited and never dreamed it would happen so quickly. At about seven weeks, I spotted. I immediately called the doctor and was told to come in. They did some blood work and examined me. They did a vaginal ultrasound and confirmed that there was a heartbeat and that there didn’t appear to be any problem. My doctor did notice that I had a couple of fibroid tumors, and he told me they would just watch those closely to make sure they didn’t grow too much. He said this would be checked through ultrasounds.

After this small scare, things moved along smoothly. At my second ultrasound at 18 weeks, we decided to find out the sex. A boy – we were thrilled. We decided to name him Jacob. At my third ultrasound at 26 weeks, the doctor did indicate that I appeared to have a little bit higher than normal amniotic fluid, but it wasn’t high enough to worry about at that point – they would just keep an eye on it. Now I know that was an indication that there might be a problem – then I had no idea and totally trusted what the doctor said. Throughout my pregnancy, I had a total of four ultrasounds, with the last one at 34 weeks. Each time I was assured that everything looked fine.

My due date was January 19, 1997. The week after Christmas, my legs, ankles, and feet started swelling extremely badly, so much so that the doctor decided I needed to quit work and stay home. So my maternity leave from work started about two weeks earlier than expected. Jacob was also still in the breech position at this time (again, now I know that this is another indication that there might be a problem). The doctor talked to me about trying to get him to turn by doing a procedure where they push on him, but I decided against this and was then told I would need to have a C-section if he didn’t turn on his own. Jacob never did turn, so we scheduled a C-section for January 20, 1997. I could not wait for this day to arrive. I was so big and miserable by this time, but I just thought that’s how all women who were nine-months-pregnant felt.

Jacob Nelson Henze was delivered by C-section at 8:03 a.m. on January 20, 1997. He weighed 8 lbs 4 oz. – a full term, good sized baby. Immediately, I knew something was wrong when he didn’t cry. We heard a whimper but no cry. I kept asking my husband why he wasn’t crying, and he just kept saying they were working on him. The OR got extremely busy with doctors and nurses. They put him in an incubator, stopped him by my head for one second and whisked him away. I had no idea what was happening.

They asked my husband to stay with me while they finished working on me. They then took us to the recovery room. The nurse that was with me was so sweet and kept telling me that a lot of C-section babies have some fluid in their lungs and not to worry, everything would be OK. The next thing I remember is one doctor standing beside me and two standing at the foot of my bed telling me that Jacob was a very sick little boy. They explained he had a right-sided congenital diaphragmatic hernia. His liver and intestines were up in his right chest cavity, and they didn’t know how much lung, if any, was on the right side. He needed surgery immediately to repair the hernia and move everything back into place. Glenn, my husband, and I were numb. They had gotten him stabilized, and they wanted our consent to do the surgery. So two hours after he was born, Jacob was in surgery having his hernia repaired. The surgery went great. They moved everything back to where it was supposed to be and used a Gore-Tex patch to close the hernia. He was on a ventilator and was still in critical condition. Then they started talking to us about ECMO. If they couldn’t control the pulmonary hypertension, then ECMO would be our next step. I was still flat on my back from the C-section and only had pictures that the NICU nurses had sent up to me by my husband. I could never have imagined that a baby could have that many tubes and wires attached to him.

The day turned into night and Jacob was holding his own. Our other family members went home, and Glenn and I settled in to try and get some rest. Glenn had spent most of the day down in the NICU, and he was exhausted. At 1:30 a.m., the phone rang, and to this day I can still hear the NICU doctor say, “Jacob has taken a turn for the worse. I need your husband to come to the NICU immediately.” Glenn ran to the NICU. I was hysterical and called the nurse. The nurse that was on duty was an angel. I know God placed her there that night to be with me. She came in and told me she would get me down to the NICU no matter what it took. She gave me a shot of morphine, and put me in a wheelchair. At that point, I couldn’t feel any of my own pain, other than my heart breaking. I just wanted to get to Jacob. She stayed right with me the whole time.

When we got down to the NICU, and I saw Jacob for the first time, all I could see was a beautiful little boy who was my child and was so sick. So many wires and tubes and blinking lights and bleeping monitors – it was so overwhelming. They told me it was OK to touch his arm and hand. I touched him, talked to him and told him that his daddy and I were with him. After a few minutes, the doctor said he had to talk to us. Jacob was very ill and needed ECMO. Our local Children’s Hospital in Birmingham didn’t have an available ECMO bed. They were contacting hospitals in Georgia, Tennessee, Arkansas and Louisiana. He would have to be life-flighted by jet to the closest hospital that had an available ECMO bed. But he wasn’t even sure if Jacob would survive the flight. He suggested that we might want to have Jacob baptized before he left. I called my parents and asked them to contact our preacher. At 2:30 a.m. on January 21, 1997, Jacob was baptized in the NICU of St. Vincent’s Hospital, and I was trying to prepare myself for the worst.

The doctor advised us that they had found an available ECMO bed at Vanderbilt Children’s Hospital in Nashville, Tennessee, and they were waiting on Jacob. The South Carolina Transport team arrived to fly him to Nashville. They were extremely sympathetic and supportive. They assured us they would take good care of Jacob and gave me several pictures of him before they left. I said my goodbyes to Jacob and told him I would see him in Nashville in a couple of days – his daddy would be up the next day. Watching them wheel Jacob away was the hardest thing I’ve ever been through because I didn’t know if I would ever see him alive again.

We received the call from the doctor at Vanderbilt that Jacob had arrived and was stable. He discussed ECMO with us again, and we gave our consent to place Jacob on ECMO. After this had been done successfully, they called us back to let us know. My husband took off for Nashville to be with Jacob. Jacob’s nurse called me to let me know she was caring for Jacob and would take good care of him and for me to call her anytime. Glenn arrived in Nashville on Tuesday night – Jacob remained stable. I was finally able to leave the hospital on Thursday morning and my parents, my sister, brother-in-law and I headed for Nashville. I was still extremely sore and not able to get around very well, but at this point that was the least of my worries.

Due to another child being on ECMO in the PICU, Jacob was placed in the PICU instead of the NICU. When I saw him for the first time I was overcome with a variety of emotions. I was so thankful that he was alive, but my first look at him on ECMO scared me to death. There were so many machines and wires and tubes hooked to him, plus there was no sign that he was breathing. His nurse was wonderful and explained everything to me – what all the machines were doing – what all the tubes and monitors were for – that the ECMO was giving his lungs a rest and was oxygenating his blood – it was all truly overwhelming.

Jacob did well on ECMO. They did the first trial off after six days, but he wasn’t quite ready. They tried again on the 7th day, and he was able to come off. So we had surpassed our first hurdle. He was still on a ventilator but still doing well. We were able to touch and talk to him more. He was aware of his surroundings, and I know he knew that we were there. About three days off ECMO, I walked into the PICU, and there was a rocking chair next to Jacob’s bed. The nurse told me to sit down – she had a surprise. She started gathering up all the wires and bundling up Jacob – next thing I knew he was in my arms – I was finally holding my son after ten days. It was wonderful! – a little scary with all the wires and tubes – but wonderful!

Also during the second week, Jacob came off the ventilator. When I first heard him cry, it was the sweetest sound I had ever heard, and I cried along with him. What a miracle to hear that sweet voice. Jacob was able to stay off the ventilator for two days, but his blood gases didn’t stay at acceptable levels and after two days he had to go back on the ventilator. I felt like we had made a huge step backwards. But the doctors and nurses were very comforting and reassuring and helped us see that Jacob just needed to get stronger. I must say he is definitely a fighter.

The next day, Jacob decided to extubate himself. I guess he was tired of that tube down his throat. So the doctor advised they would try C-PAP. Jacob did well on C-PAP for four days. So well, that it was decided that Jacob was at a point that he could be transferred back to St. Vincent’s Hospital in Birmingham. They had a NICU and were well-equipped to handle his care from that point on – they had saved his life when he was born. We were thrilled – it would be so nice to be back home. We were scheduled to make the transport on Friday, February 14 – what a wonderful Valentine’s present. That morning I was holding Jacob – his nurse was preparing all the paperwork, and we were waiting for the transport team to arrive – it was an exciting day. As I was holding Jacob, he stopped breathing. The monitors started wailing, and the nurse came running. After a couple of shakes, Jacob started breathing again – we thought one episode – nothing serious – well, not so. Over the next hour, Jacob had three more of these episodes. The transport team arrived and they were told about the situation. We were asked to leave while the doctor examined Jacob, and they all reviewed the situation. I was in shock. After about another hour, we were called in to meet with the doctor. They weren’t sure what was causing the apnea spells – but because of them, they had to put Jacob back on the ventilator, and they felt he wasn’t stable enough at this point to transport. We were staying at Vanderbilt. Again, we had suffered another setback.

Over the next week, Jacob stayed somewhat stable on the ventilator, but he continued to have a few episodes of stopping breathing even while on the ventilator. A week and two days after the first apnea spell, they took him off the ventilator. But after about 12 hours, he went back on. After running a variety of tests, the doctor met with us and said he felt like they had determined the cause of the apnea spells. He was being fed breast milk through an NG tube – during these feedings or shortly after, he was refluxing so bad that it was causing him to stop breathing. They felt that the only way to stop this was through surgery. They wanted to do a fundoplication and put in a G-tube (feeding tube directly into his stomach). Again, this was all so overwhelming but we trusted them to do what was best for Jacob. The surgery was scheduled and done the next day. Jacob came through the surgery fine. I’ll never forget what the doctor said to me when he came to talk to us after surgery – he told us what they had done and that Jacob did well – then he looked straight into my eyes and said, “I truly believe Jacob is going to come through all of this fine and be OK.” It was the first time anyone had said they thought Jacob would make it.

Two days after surgery, Jacob came off the ventilator for good. He was put on oxygen – nasal canulas. Six days after the surgery, Jacob was transported back to Birmingham to St. Vincent’s Hospital. Finally after six weeks in Nashville, we were back in Birmingham.

Back in Birmingham, we settled into a routine. My husband went back to work, and my mom and I spent the days at the hospital with Jacob. Glenn would come to the hospital after work, and we’d stay with Jacob until we had to leave. It was nice to be back home.Our next step was to get Jacob home.

Jacob stayed in St. Vincent’s NICU for 4 ½ weeks. During this time, he remained on oxygen, but we worked at slowly lowering the amount he needed. A button was put in on his g-tube – we learned how to feed him through this. Due to his rapid breathing and continuing need for oxygen, they didn’t feel that I should attempt to breastfeed him. That’s really the only issue I wish I had pushed a little harder, but I trusted the doctor’s judgment. I was still pumping breast milk for him, and he was getting it though his g-tube. Regular attempts were made to get him to take a bottle, but he wanted nothing to do with it. We knew this was something we would have to continue to work on for a while. While at St Vincent’s he also had inguinal hernia surgery, and his circumcision was done with this surgery. This surgery was tough because we knew he would have to be placed back on the ventilator, and we weren’t sure how he would react when removed. Jacob did wonderfully with the surgery and had no problem at all coming off the ventilator.

One week and five days after this last surgery, Jacob was able to come home. Eleven weeks after his birth, we were finally bringing our son home. We knew Jacob was truly a miracle from God.

Granted, Jacob’s homecoming was far from a normal homecoming. We went home with an apnea monitor, a pulse oximeter, oxygen and with a feeding tube in. St. Vincent’s did a wonderful job of training us how to use and read all of these machines. A week prior to leaving St. Vincent’s, we were placed in a private room so that we could learn how to care for Jacob. We knew we had a long road ahead of us, but we were willing to do whatever it took, and we were so thankful to have the blessing of Jacob as our son.

A week and a half after we got home, we were back in Children’s Hospital – Jacob had pneumonia. Luckily they were able to treat it with intravenous antibiotics, and we were back home after a week’s stay.

For the next few months, we continued to try to get Jacob to eat by mouth. We worked with physical therapists and occupational therapists. Due to his time in the hospital, he had developmental delays. We were able to get Jacob into our county’s Early Intervention Program, which is supported by the United Way. I cannot even begin to say enough good things about this program. We were able to work with a physical therapist and an occupational therapist on a weekly basis and a nutritionist on a monthly basis. Not only did they work with Jacob, but they provided tremendous emotional support to our whole family. Jacob was able to make tremendous strides in this program. Slowly, he started taking more food by mouth, and we were able to cut back on the tube feedings.

In October 1997, Jacob was able to come off the oxygen during the day – he still remained on it at night. On December 22, 1997, Jacob came off oxygen completely. What a perfect Christmas present! Jacob continued to make strides with leaps and bounds. We had our setbacks, but we also had major victories. He was able to overcome all of his delays and is a very bright and smart child. In August 1998, his g-tube button was removed. He has been in the hospital twice with stomach problems. Whenever he gets a cold or cough, we jump on it quickly to be on the safe side. Jacob has a wonderful pediatrician who is very in tune with what he has been through. Jacob has endured respegam treatments and synagis shots. In March 1999, his diaphragm re-herniated, and he had to have repair surgery again. The same surgeon who did his first repair surgery at two hours old also performed the second surgery. This time he was able to use Jacob’s own tissue to repair the hernia, so we’re hoping that will be the last repair he needs.

As of this writing, Jacob is five years old and is a normal, happy, healthy kid. His is still a little smaller than the other kids in his class, but this doesn’t stop him one bit. He is very smart and has the memory of an elephant – his favorite animal. The only doctor we visit on a regular basis is his pulmonologist – about every four months. He has no breathing problems, and she has placed no limitations on Jacob at all. We know he has a small right lung, but he leads a normal life. Jacob has been attending a daycare/pre-kindergarten program at our church for the past two years and will begin kindergarten in the fall of 2002.

What a miracle and a true blessing from God we have in our son Jacob. I look at him now and it’s hard to believe he had such a rough start in life. Sometimes I think back to that first year and wonder how we ever made it through. I know I could have never made it without the support of my husband and my parents and the rest of our family. My parents have been there with us every step of the way and stepped in and took care of Jacob when I had to return to work. I sincerely don’t know how we would have made it through this without them. Jacob also had wonderful care from the moment he was born. St. Vincent’s Hospital and Vanderbilt Children’s Hospital took excellent care of Jacob. His doctors, surgeons, and nurses were all wonderful, caring professionals. I also know that Jacob is a miracle given to us by God. Jacob has had so many people praying for him. From the moment he was born, prayer chains were started that reached across the country. Without our faith and trust in the Lord, we would have never made it through this and we are so cognizant and thankful every day for the miracle that He has given us in Jacob.



Written by Jacob's mom, Vickie Henze (Alabama)
2002