Who will fight for your child, if not you? This is the story of Dawn and her baby boy, Wyatt, with excerpts pulled from her family update blog.
Due on July 17th, Wyatt was past due when we found out he had a condition called Congenital Diaphragmatic Hernia (CDH). Which means that there was a hole in his diaphragm and part of his intestines had moved up into his chest around his heart and lungs. The artery leading to his left lung was compressed, limiting blood flow to the lung. The doctor told me, "Babies like this don't live," and then left me to deliver what, in his eyes, was a doomed baby. I could not believe those words were said aloud to my face as I lay there and prayed and prayed and prayed.
Wyatt was delivered by c-section on July 22nd so that he could be immediately treated by a pediatric surgery team and neonatal intensive care team. They had to stabilize his lungs and allow the compromised artery to repair itself and the lung. Once that had happened there would be a surgery to repair the damaged diaphragm. He was born at 12:57, weighed 9lbs and 10 oz, and measured 20 1/4 inches long upon arrival.
Two days after delivery, big sister, Macy, finally got to meet her baby brother in a sweet moment. We were still waiting for Wyatt's oxygen level to improve in order to perform surgery.
Three days old--we got the gift of touching Wyatt for the first time. I gave it a try and he wrapped his little fingers around mine. Surgery was delayed due to the OR schedule, then because of fluid build-up in his lungs, then because Wyatt began having seizures.
I got to change a diaper five days after Wyatt's birth. I know that doesn’t sound like fun but being able to touch him and be a hands on mommy was great. In the words of Springsteen: “We’re countin’ on a miracle.” When the surgery was finally performed a day later, it went well. We had a peaceful morning and knew our friends' prayers were helping to hold up our arms.
Macy got to spend some time with him reading Good Night Moon and she got to touch him for the first time. She was so sweet and gentle – beautiful to watch. We were also given the gift of being at the bedside when he opened his eyes for the first time. Then Wyatt's chest tube got a kink in it and the fluid that should have been draining backed into his chest. By the time the kink was discovered and fixed, the fluid had already collapsed the right lung. Wyatt began to show withdrawal symptoms as they continue to lower the sedation medication. It’s really tough to watch when his little body is shaking uncontrollably but it’s another step closer to taking him home.
Perspective is a funny thing – the smallest event can shift it and alter an entire experience. I’ve seen it time and time again as a joyful event such as a wedding gets derailed by something unexpected. So the question is, what do you do when that unexpected thing comes your way? Do you take it in stride or allow it to ruin your precious moments?
I came really close on Friday to having an unexpected thing ruin what should have been a day of celebration. Thankfully my 7-year-old is wise beyond her years. Most of you know by now that Friday was the first day we were able to hold our sweet boy. In order to do that they had to remove an arterial line from his belly button. While they were doing that procedure we left the hospital to take Macy to her pediatrician and then to a friends. We returned full of excited anticipation for the momentous milestone that had seemed so very far way just a few days prior. Upon entering the nursery we were greeted by the sight of Wyatt trembling from drug withdrawal with a new IV line in his little head.
It was clear something unexpected had happened AND that the hospital had yet again failed to inform us. When the nurse entered we asked what was going on. She said very casually that Wyatt had experienced a round of seizures which were probably from the bleed in his brain. This was the first time we had heard anything about the bleed and she was completely unprepared to answer our questions. We pleaded, to no avail, for someone to come speak with us regarding the new information. Informed that we were at the mercy of Neurology she went on to explain there was no need to worry they had given him his first bath after the seizure and he did well. This was the point where I initially picked to jump the track. Not only had they failed to communicate valuable information they had blatantly disregarded our repeated requests to be present and part of this “first” in Wyatt’s life. It took some calming words from Keith, holding my boy, and encouragements from some of the most amazing people I know to pull the brakes on my crash scene.
Later that night we went to pick up Macy and I told her I needed lots of hugs and love as my day had been very bad. A few moments later I showed her the photo of Keith holding Wyatt for the first time. She sat there for a minute looking at the photo and then looking me in the eye said: “Now how it is THAT a bad day?!?” Such truth spoken in pure innocence. I was so wrapped up in what went wrong I was nearly robbed of something that I should be treasuring. It’s all about perspective …
We were finally able to speak with Neurology and they filled us in. At some point near the time of his birth Wyatt had a small hemorrhage in the gelatinous part of the brain that disappears in most term babies. His was still a little jelly like and it ruptured. At birth the brain isn’t fully developed. The port that promotes seizure activities is and the part that controls them is not. So – the bleed, which is not currently active, may be causing what they call reactive seizures. Apparently lots of premature and or sick babies have them. They control them with medication and monitor for developmental delays until the age 2 or 3. Wyatt was not showing any signs of issues but we needed to have the seizures under control to prevent damage or reactivating the bleed.
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Doctors began to introduce food, or rather force feed him. After 20 days with nothing in his stomach the medical experts decided he needed to be at normal intake for a baby his size in 3 days. Needless to say, he couldn’t keep up. Babies with this type of hernia/surgical repair frequently suffer from reflux. So of course it was aggravated when they tried to shove huge quantities of food in him quickly. They have now decided to revert to a base line intake and progress slowly which is what I wanted from the beginning. I’m thinking the professionals need to go 20 days without food and then have someone force feed them a five course meal – I’m betting most of them would throw up too…
At this point I had reached a point of exhaustion, frustration, and the mama bear instinct was in full force. The medical staff at the hospital saved our boy and for that I am eternally grateful. They certainly had shortcomings and the hospital policy was a nightmare but those are distant memories. I chose to take the road less traveled and worked on extending grace and patience whether or not they were deserved. They have been given to me so the least I can do is extend them to others. I was reading a book by Phillip Yancey called What’s So Amazing About Grace? Guess what – the reason it is so amazing is you don’t have to earn it or deserve it…it’s just freely given. Great book…check it out if you are looking for a good read or you are having a melt down moment like I was this morning.
Eventually, Wyatt rocked the nursery with his battle cry. He was so persistently loud that the nurse actually came and found me which had never happened before. Usually I was begging to be with him and they were kicking or locking me out. She said my “presence was being requested.” I think they found his volume a bit annoying but I LOVED that his lungs were that strong after all he had been through. It’s a sound we waited weeks to hear and if you ask me it was a joyful noise.
I suspect that his surgical scar will be a very faint line by the time he is an adult. It is more likely that the chest tube insertion point and central line insertion point will be the more prominent scars and they are small.
On August 21st they told us we could take Wyatt home the next day. So we went to work checking off the list of requirements that had to be completed for that to happen. Follow up appointments, oxygen monitoring on the carseat, video’s about shaken baby syndrome and more.
FINALLY on the 22nd of August – one month after his arrival we carried our sweet boy out of the hospital. He still wasn’t eating enough so he left with an “NG” tube running into his nose and down to his belly. I had to be trained on how to put this back in place as he liked to remove it frequently. Let’s just say it isn’t a fun process for anyone involved. After two days at home and some gentle coaxing he began to use the bottle which allowed the tube to be removed. Two or three days later Wyatt began to throw up everytime I fed him. After 24 hours we headed back to the hospital for xrays and ultrasounds. Thankfully all came back clean and the doctors said he had reflux.
We have been so blessed by the community surrounding us. Thanks to everyone who cared for Macy, our dogs, filled our tummies, cried beside us, laughed with us, prayed for us and joined us on this journey every step of the way. We have seen so many miracles and blessings I can’t even begin to account for them all. If someone wants to see evidence of a mighty and loving God who works still today send them to me – they can hold my boy.
Wyatt has been diagnosed with verbal apraxia and sees a Speech Therapist on a weekly basis. She is hopeful that he will speak at least to some degree by the time he is three…in the meantime we are all learning ASL (American Sign Language). It is remarkable to see how quickly he has picked it up and how well he can communicate with the signs. He also sees an Occupational Therapist to help him with a Sensory Processing Disorder. With the exception of the minor life adaptations above Wyatt is a healthy happy boy who is a joy to be around. I look back at the pictures from our days in the NICU and then look at him now and I can hardly believe how far he has come. He is my daily reminder that nothing is impossible and HOPE has no bounds.
For more information on CDH and CDH support, check out CHERUBS -- The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.
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