Kaden, our little fighter

I was done, so done, having kids after Joslynn, my now 3 year old. I had my amazing two older kiddos, BrieAnna (now 17) and Judson (now 14) who were already fulfilling my dream of being a mom. Then I was blessed to meet and marry Jason, and add Joslynn, our sweet, special needs, light and joy little girl. Between the three I was keeping plenty busy, even feeling overwhelmed with meeting all of Joslynn’s needs.

Another baby was out the question as far as I was concerned. And then it happened … the promptings that there was one more kiddo meant for our family. I couldn’t care for another baby AND Joslynn AND give my husband and two older kids the time and attention they need and deserve. So, I fought it, for quite a while actually. But it never went away. After much prayer, and an undeniable experience that there really IS one more meant for our family, we proceeded with trying to get pregnant.

It only took two months. The first half of my pregnancy was pretty normal. I underwent a little extra genetic testing at 13 weeks with the high-risk doctors because Judson has a kidney condition called Nephrogenic Diabetes Insipidus which I carry the gene mutation for and passed on to him, and we had just discovered shortly after I became pregnant that Joslynn’s medical issues actually stem from a gene issue called COL4A1 brain small vessel disease. Thankfully, all of baby’s testing came back normal, including a normal looking ultrasound. Baby looked GREAT!

The time came for my 20-week ultrasound and my OB suggested I have the high-risk doctors conduct it because they have a higher level of training in identifying any brain issues that could indicate this baby may have what Joslynn does. It’s called an anatomy ultrasound. We were all expecting to find everything looking as good as it did at 13 weeks. It was apparent she spotted something that was not right. She got through the check points of the scan and then began to show me a fairly large ball sitting under my baby boy’s chin. Her initial diagnosis was a cervical teratoma. At this point we decided his name would be Kaden, which we later found out means little fighter or warrior.

We were referred to a surgeon in Houston (we live in North Fort Worth) with the thought the baby would have a better chance at survival if we underwent fetal intervention. I went down to Houston thinking there were two options: I was either going to have to stay and have fetal intervention (remove the tumor and put him back to finish cooking) or I was going to come home and continue to be followed by my Fort Worth team. I assumed my team would either feel comfortable delivering him within six weeks or they would send me back to Houston if he became distressed before they could deliver him. What we learned through our day in Houston of many tests is this is not actually a cervical teratoma we’re dealing with, but rather a lymphatic malformation.

My pregnancy was still handled the same. We still needed to plan for an EXIT delivery so they could establish an airway once he was born, but upon his delivery, his care and treatment plan completely changed.

Before, this was going to be a one-and-done surgery. Now he would require one initial major surgery (14 to 16 hours) with likely more surgeries, treatments and follow-up for a long period of time and potentially the rest of his life. The good news is the potential risk to Kaden in-utero diminished slightly. The bad news was I now had to plan on relocating to Houston at 32 weeks pregnant and remain until Kaden was born and stay as long as it took for him to have his surgery and recover. This was all decided at about 26 weeks, so I had six weeks to soak up as much time with my family and friends as possible.

I was in and out of the hospital from the time I arrived in Houston, needing to have two amniotic fluid reductions, as well as two rounds of magnesium treatments to stop labor. Originally, we had schedule my EXIT delivery for July 3, but after having to stop my labor twice, we moved it to June 28.

Kaden Richard Lee was born at 10:01 a.m. on June 28, weighing 10 lbs. 8 oz. and he was 20 inches long. Kaden’s team planned on having about a two-hour window to secure an airway. It only took a few minutes, which was such an amazing, HUGE blessing! He is a big boy and this worked in his favor for the major surgery he would have. They were guessing he actually weighed around 7.5-8 lbs. which means the rest of his 10.8 lb. weight was his mass. He had between 2-3 lbs. just hanging out on his chest. He couldn’t handle the weight on his chest, so they moved him from side-to-side to keep the weight off his little body. He was receiving all of his nutrition through IV until his surgery and being kept sedated so his airway remained secure. At this point, I had not held him, which was the hardest part. I sat by his bed, held his hand and kissed his sweet head and told him how very much I love him.

Kaden’s big surgery was five days later, on July 3. It began with ENT doing an exploratory procedure through his airway to see what they were dealing with. Dr. Rosenberg was the surgeon in charge of how the lymphatic issues were affecting his throat, esophagus and tongue. She showed us in pictures where his voice box is and how it’s affected. There was quite a bit of swollen cysts they were able to remove at the back of the throat. Dr. Rosenberg was encouraging and hoping with the bulk of the mass gone, and the opportunity for things to start draining, that some of the problems would take care of themselves. She is an awesome doctor and even teared up as I did while thanking her for helping our sweet Kaden.

Dr. Olutoye came to visit and again expressed that the surgery went better than expected. He said Kaden’s neck skin will be a bit flappy at first, but will tighten up over time. He still has some swelling in his face because it wasn’t safe for them to remove anything above his jaw line since there are so many nerves that could be damaged. His incision is pretty much from ear lobe to ear lobe, but tucked back under his chin.

20170828_185801-300x225Kaden spent the next 4 weeks recovering before going back into the OR. There, it was determined the swelling throughout Kaden’s airway was too severe for him to breathe on his own, so his intubation tube was removed and they performed a tracheostomy. He also received a G-tube for feeding. A week after Kaden’s surgeries, I finally got to hold him! It was just as glorious as I imagined!

Learning how to take care of Kaden’s trach and G-tube is quite a process. There will be lots of education classes, bedside training from the nurses and even a test I have to pass. Getting his care transferred and having home health care established will be a long process. It’s a lot and it’s easy to become overwhelmed. I am taking it one day at a time and I’ll work as hard and fast as I can to learn it all.

I am extremely blessed with an amazing family and wonderful, supportive friends who continue to tell me how strong I am. I don’t really feel like this journey is a matter of strength, but rather one of survival and maybe endurance. I’ve realized sorrow and negativity doesn’t do anyone any good; not the doctors, nurses, family or Kaden. There is no denying that being in the neonatal intensive care unit (NICU) with a baby, especially for a prolonged period of time, is mentally and emotionally exhausting, but there is also much to be grateful for each day.

Above all, the care Kaden and I have received throughout this journey has been exceptional. We have been cared for by the best of the best! I can say that we have created a family at Texas Children’s and we will miss everyone dearly when we venture home and onto the next chapter of this journey.

Posted in Guest Post, Neonatology, Pregnancy, Surgery

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