And the story goes….
Jackson’s Journey
We are the Westerheims– Brandon, Kathryn, and Jackson. Our journey started 5 years ago. A couple of months after Brandon and I were married we decided to start a family. We finally became pregnant in January 2008. At our first ultrasound at 7 weeks we discovered that we were pregnant with not one baby but three! We were excited and scared at the same time. The doctor warned us about the complications that could occur when pregnant with triplets. We were so worried, but our worry soon gave way to excitement at the prospect of this instant big family! My belly started to grow rapidly and by 14 weeks I was already showing like I was half way pregnant. At 16 weeks we were thrilled to discover that we were having two identical girls and a little boy.
Everything was going very smoothly until at 17 weeks my cervix shortened. We had to rush to St Joseph's Hospital in Bryan because I started having contractions. They eventually stopped and the doctors sent me home the next day on strict bed rest. The doctor started me on progesterone shots to help relax my uterus and prevent the contractions. Every week I went to the doctor, and every week my cervix was getting shorter and shorter. Then at 21 weeks, the second part of the saga started...MY WATER BROKE! I quickly woke Brandon up, and we headed to St Joseph's yet again. There they confirmed that my water had indeed broken, but was not dilated. I remained there for the rest of the night and the next morning they decided to transfer me to Temple via ambulance. The ambulance ride was terrifying. At each bump I was afraid that I would go into active labor. We soon arrived at Scott and White safely and I was quickly admitted. I felt a surge of relief- I felt safe because I knew that I was going to have the best care and there would be a doctor there for me when I needed one. The diagnosis was that the water had broken on one of the identical girls. The doctors explained that most women went into labor within 24 hours after their water broke. If they made it past that, than most of the remainder went into labor within the week. It was devastating news but I decided to focus on the fact that there was a small chance that I could not go into labor. They put me on IV antibiotics and oral antibiotics to help prevent infection. I was lucky that the water flow slowed and on the ultrasound after that first week, there was no difference in fluid level around the girls. The doctors believed the tear was up against the wall which helps slow down the leak. They put me on a round of steroids to help the babies’ lungs develop so that if they were born early their lungs would be strong enough to breath. My goal at that point was to make it to 23 weeks. At 23 weeks they would try to save the babies if they were born. When I reached 23 weeks the neonatologist from the Neonatal Intensive Care Unit (NICU) came in and gave me the odds of my babies surviving if they were born then. Babies born at 23 weeks have only a 17% chance of survival. I prayed that my body would hold out and I would make it far enough for the babies to have a greater chance of survival. Sadly, this did not happen.
The evening of the 21st of June I developed a high temperature very quickly which meant that I had an infection. The contractions started to come on quicker and quicker and before I knew it they were wheeling me into the operating room. The doctors and nurses delivered our three precious angels and when I regained consciousness Brandon told me he walked with the nurses and doctors as they took all three babies down to the NICU. They were so small, he said. But we were thankful that all three of the little ones were alive.
I was so anxious to see my babies when I stepped into the NICU for the first time. I stopped at Evelyn’s bed first. Even with all the tubes and IV’s she was still beautiful to me. She was my smallest weighing in at only 1 pound. She was fighting for her life and losing the battle. I next stopped at Katelyn’s bed. She was just as beautiful and innocent as Evelyn. She was also the largest of the three, weighing in at 1 pound 7 ounces. She was fighting for her life but like her sister she was losing the battle. Over the next couple of days both girls lungs collapsed, Evelyn’s heart gave out, and they both had severe brain bleeds. Their little bodies were shutting down. After five days of struggling for their lives both girls passed away. It was heart wrenching, but our salvation was laying peacefully in that third bed.
Jackson Scott Westerheim! He was so handsome to us! From the very beginning, we knew he was a fighter. He was fighting for his life and seemed determined to hang in there. He was born weighing 1 pound 5 ounces and was 10 ¼ inches long. He was on a high frequency ventilator that made him breathe 900 beats per minute. It gave him tiny puffs of air because anything stronger would destroy his fragile lungs. His skin was so delicate that if it was touched too hard or too long it would tear and would send his body into shock. We were unable to hold him because of his ventilator, the IV’s and tubes and his delicate skin but we could change his diaper, take his temperature, clean out his little mouth, and talk to him. This we did at 3 hour intervals— and our lives revolved around these few minutes that we were able to see our little boy without the plexiglass of the incubator separating us.
The doctors and nurses in the NICU told us that having a premature baby was like being on a roller coaster ride. Some days would be uneventful, and thus good, and some days would be devastating. The first couple of weeks of Jackson’s life we were riding on the high side of the roller coaster. When Jackson was one week old they preformed a brain scan on him to check for brain bleeds. Brain bleeding is common in micro-preemies, and can cause all sorts of developmental problems, from speech and motor issues to severe cerebral palsy. We were thrilled to discover that Jackson did not have a brain bleed at all. This to us was the biggest milestone to pass.
It didn’t take us long to reach the bottom of the roller coaster. We found out that Jackson had a PDA in his heart. This happens when a valve in the heart that is supposed to close after birth does not. Jackson’s did not close and they started him on medicine to help it close. If it didn’t close with medicine they would have to perform heart surgery on him to close it. We were worried but after the round of medicine thankfully it closed. Another milestone we got to check off the list.
Over Jackson’s first couple of weeks they started to feed him through a tube that went directly into his stomach. He started out by getting 1cc every 6 hours. Since he was digesting the milk well they were slowly able to increase the amount they fed him.
For a couple of weeks things were going smoothly. He was eating, breathing, and even earned the name of Super J because he was doing so well. Because they were able to turn his settings down on his high frequency ventilator he was able to change to a regular ventilator. Once they changed him to the regular ventilator we were able to start holding him. Holding our little boy close to us for the first time was amazing. We were able to start doing Kangaroo Care which is when you hold him up against your skin by your heart. While holding him this way our body temperature helped him maintain his body temperature, our heart rate helped maintain his heart rate, and our breathing helped him remember to breathe regularly. He had come a long way in a month but the bottom of the roller coaster ride hit us again. Jackson came down with pneumonia. They started to administer antibiotics to him and they had to clean out the fluid that collected in his lungs. Simple illnesses like this are serious enough for a full term baby—for Jackson, it was life-threatening. Thankfully, our little fighter beat the pneumonia too.
At this point the doctors wanted us to think about giving him steroids to help his lungs so that he could get off the ventilator. Being on a ventilator for a long period of time can cause heath issues but the steroids also had side effects.
After much thought and discussion and research we decided to go ahead and give him the round of steroids. We were hopeful that this would help his lungs enough to get off the ventilator. Along with the steroids they were also giving him caffeine to help with apnea. (Apnea is when they forget to breathe.) After a couple of days he was able to move to a C-Pap machine. The C-Pap looked awful and looked very uncomfortable but he no longer had to have a breathing tube down his throat. A C-Pap provides pressure to help keep his lungs open but he has to breathe on his own. For a couple of days he was doing really well, but his little body soon tired out from all the extra work and he had to be put back onto the regular ventilator. We were disappointed but didn’t want to stress out his little body too much. Jackson sailed along on the ventilator and they were able to lower the amount of oxygen he was getting. Like many things in preemies, the cures often have consequences. Jackson needed additional oxygen, but that extra oxygen is bad for his eyes. So we rejoiced every time they were able to turn the little oxygen knob down a fraction. He continued to eat and grow and at a month and a half he was 2 pounds 8 ounces.
During this time they started to let him control his own body temperature. The incubator that he was in had been controlling his body temperature from birth. He had a probe attached to him and when his body temperature would dip the bed would automatically heat up and vice-versa. Now they were slowly lowering the temperature of his bed, forcing his body to keep itself warm. Every three hours we would take his temperature. If he was too hot we would turn the bed temperature down and vice-versa. Once the bed temperature reached room temperature they could take him out of the incubator and put him in an open crib.
Another week passed and he started doing really well on the ventilator. He did so well they were able to skip the C-Pap and go straight to a high flow nasal canula. This was an amazing time! We actually go to see our little boys face for the first time without all the tubes. We enjoyed getting to hold him more and more.
Not only was he doing well on his breathing but because his eating was doing so well they were able to take the PIC line out of him. The PIC line was used for fluids that went directly into his blood. Because he was now getting enough milk they did not have to supplement his diet with fluids. One by one, the tubes and wires were going away, and each day we spent with our little miracle he amazed us more and more.
We were on the top of the roller coaster ride but down we would come. Jackson developed a staph infection and his little body was too busy fighting the infection to worry about breathing. Back on the ventilator he went. Test after test was run to make sure it wasn’t a very harmful staph infection. Our life revolved around when test results would come back. We were relieved when it was determined that he had a mild staph infection and would recover. After a couple of days on antibiotics he was able to return to the nasal canula.
At two months old he was 3 pounds 2 ounces and he was finally ready to start trying to eat from a bottle. The first couple of times he only got a few drops down but the more he practiced the better he did. During the next couple of weeks Jackson got to move to a regular crib because he was holding his own body temperature, was doing well eating from the bottle, and got to move to a lower flow nasal canula. He body was beginning to support itself. We were enjoying every second we got to spend with him.
He was sailing along but at about two and a half months they did an eye exam on him and discovered that he had Stage 3 Retinopathy of Prematurity with “plus” disease. ROP affects many premature babies and is basically a result of the eyes having to mature outside the womb. Because Jackson’s eyes had to develop outside the womb the blood vessels have not grown correctly. If not corrected the blood vessels could grow inward and detach his retina and cause blindness. The next day Jackson underwent laser surgery to freeze the growth of the blood vessels that were growing incorrectly. The surgery went very well and over the next couple of weeks they continued to monitor his eyes. In the end the ROP did not return and the only issue he might have in his future is he might be a little nearsighted and require glasses.
Over the next month Jackson continued to improve. We were working toward getting him completely off the nasal canula before we went home from the hospital.
On day 99 of his NICU stay we got to see his face completely tube free. On day 110 Jackson came home.
We were overjoyed to have our little boy home and doing well. Over the past year we have got to see Jackson smile, laugh, babble, roll over, sit up, clap his hands, eat solid food, crawl, pull up, stand, and enjoy life. Jackson is a miracle, but he is a miracle that wouldn’t be here today without the research that March of Dimes does. The fact is, without March of Dimes, Jackson would not have made it. Because of this wonderful organization, he is thriving.
The March of Dimes is very near and dear to our hearts. We would be honored if you would join us in the March for Babies on May 1st at 9:15 in the morning at Wolf Pen Creek Park in College Station. Let’s march for Jackson, let’s march for the millions of other babies that wouldn’t be here today if it weren’t for the March of Dimes, and finally let’s march to raise money so babies that wouldn’t have a chance of survival today will have a chance of survival in the future. Below is a link to our March of Dimes Team Page. There you can sign up to walk or just donate money. If you do decide to walk we will be getting T-Shirts for our team. I will email all of those that plan to walk to get your T-Shirt sizes. Our family would like to thank you in advance for all your support!
