Hudson

[image]hudson.jpg

The day we found out that our unborn child had a life threatening birth defect was an overwhelmingly tragic time in our lives, but it was only the beginning of our journey. Our son had Congenital Diaphragmatic Hernia (CDH), a rare condition where a section of his diaphragm was missing and his bowel and part of his liver had formed inside his chest. The result of this was a lack of space for lung tissue to grow, leaving our son with extremely underdeveloped lungs. Despite only being given a slim chance of survival, we wanted to give him a chance. The second half of my pregnancy was more about scans and statistics, and less about celebration and baby shopping. While my family and friends tried to be positive, I resigned myself to the fact that is was more than likely I would not get to see my son grow up, so I tried not to get too close to him.

The morning I was scheduled for a caesarean, I told my baby that no matter what happens I love him and I asked him to be brave. Thankfully, later that day I was able to tell him I loved him to his face. After Hudson was born he was whisked off by the NICU team to be intubated and stabilised. My husband and I waited in recovery until I was well enough to go up to the ward. On the way, we were able to visit Hudson for the first time. He was still and silent. There were so many machines and tubes that it was difficult to see him. My visit was over in minutes, and I had to wait until my spinal block had worn off enough for me to get out of bed into a wheelchair. The nurse who was caring for Hudson took a photo so that I could see him while I waited. The day lasted an eternity.

My husband and I were finally able to go down to the NICU that night. We chose the name Hudson at this point; as we thought a strong boy needed a strong name. We were told that our son was living hour to hour and the doctors could not yet tell if he would be strong enough to undergo the surgery that would remove his bowel and liver from his chest and repair his diaphragm. He remained this way until the day I was discharged from hospital. It was hard to leave him alone at the hospital, but I was eager to go home to spend time with my daughter, who was missing us terribly. The afternoon I arrived home we found out that the surgeons were prepared to go ahead with the surgery the following day. We felt as though we had won the lottery!

The day of the surgery was scary and the hours felt like days. Finally we got the call that Hudson was out of surgery. The surgeon told us the hole in Hudson’s diaphragm was too large to stitch together, so they used a synthetic patch to bridge the gap. At this point we were told that his fight was just beginning. We were in total shock. We were devastated because we thought he would be home soon. We couldn’t have been more wrong. Each day I went into the hospital waiting to hear about the improvements he was making. There were rarely any good reports. Hudson got gradually sicker by the day. He had pulmonary hypertension. We watched his saturations on the monitor go down and up with each nappy change and blood gas taken. At three weeks of age, Hudson developed an infection and his pulmonary hypertension worsened. He was already on a high frequency ventilator and was now on nitric oxide. There was nothing else that could be done for him.

One Saturday morning we were taken into a counseling room where we were told that he was very, very sick and was not likely to survive. I was in so much pain and shock I didn’t know what do. I had a lot of difficulty understanding what was medically wrong with Hudson. By the Monday his morphine dosage was raised to keep him comfortable and I was advised that if I wanted to Christen him, that I should do it now. We called our closest family to attend his christening by his bedside, and they came from far and wide to say goodbye. This was the darkest day in my life. The fight appeared to be over. Hudson’s doctor gave us the option of trying steroids, but they hadn’t seen them work on a full term baby before. We were willing to try anything, so we agreed.

The following day I held him for the first time. It was magical to hold him after all this time. I think I was allowed to hold him so I could say goodbye, but it actually gave me hope. He laid on me for a couple of hours. Although he was sedated, I knew he enjoyed being held. What happened next is amazing. He began to get better. Four days after his Christening and 3 days after his first cuddle he was taken of the ventilator and put on CPAP. He fought the CPAP so they changed him over to hi-flow. I was able to hold him every day now. I changed his nappies, bathed him and took his temperature. I began to feel like I was Hudson’s mother by doing these tasks. Every day his sedation was reduced and we could begin to see his personality. It was hard to leave him each day to go back to my other life, where the school pick-up and cooking dinner awaited me. We juggled spending time with Hudson and maintaining a fairly normal life for our four year old daughter Hayley. It was hard and tiring, especially when my husband returned to work and I was commuting alone each day. I was in a routine and I made it work, because I needed to spend every minute I could getting to know Hudson and helping him get better.

After 8 weeks the day finally came when I was asked to room in and learn how to care for him with his feeding tube. I learned how to measure and insert a naso-gastric tube so he could be fed by a pump. He vomited a lot too, so it was a lot of work, but totally worth it to have him home with us. His oral aversion led to feeding difficulties that took months to correct. We had countless appointments back at the hospital. I was thankful of this though, as only the medical staff knew of the adversity I faced daily. He fought me tooth and nail all the way, but teaching him to suck feed was a huge win for us, as many CDH babies do not reach this milestone this early in their rehabilitation.

Hudson is now a happy, healthy one year old. He has met all his developmental milestones and seems to be uninhibited by his small degree of pulmonary hypertension. He has marveled his family and friends. The medical staff are in awe of his progress. I am so very proud of my little miracle baby. He is truly inspirational.

 

 

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