This past fall Jude started doing a lot of new and exciting things. He started sitting on his own and eating baby food. I was over the moon with his progress and felt like crawling was not too far off! Then as the days and weeks progressed, Jude started having trouble keeping his food down. He was struggling to eat any baby food with texture. He would wake up at night screaming and I would find him with vomit everywhere. Finally, I noticed he was not gaining weight and I called his doctors. One of his specialist used her "magic" to get Jude in to see a GI specialist within a few days.
The morning of October 30, I was dressing Jude for his GI appointment when I noticed his jeans were loose around his stomach. At that moment, I knew we were going to be at the Clinic for a while. During the long and gloomy ride down to the Clinic, I fought back tears as Jude smiled and babbled in his car seat. Thirty minutes into our GI appointment, we were admitted into the hospital for GERD and failure to thrive. Jude had not grown in length or weight in a month and half. Jude spent days undergoing multiple tests and having a NG tube put in for feeding. The doctors decided that based off Jude's hypotonia, reflux, and other complications it would be necessary to have a G-tube and Nissen Fundoplication surgery.
After 6 days in the hospital, they sent us home with an NG tube and 10 days at home before we would have to return for his surgery. While we were at home, Jude pulled out his NG tube twice. The second time we did not have extra supplies and had to go to the emergency room to have it replaced. Unfortunately, it took going to a second emergency room to get the NG tube placed correctly. After watching Jude pull out his tube multiple times, in the hospital and at home, I was finally able to master taping the tube down so he could not pull it out! During the week at home, Jude had an appointment for his Family Plan. It was decided that Jude would benefit from more therapy and ankle/foot braces. I was able to get Jude in physical, occupational, and speech therapy once a week. He will be fitted for his braces in a week and that will help with his growth and stability.
The day before his surgery Jude had a hearing test and appointment with his ENT. After the hearing test, we learned what I had suspected...Jude did not pass any of the tests/assessments. The ENT also found fluid in his ears which could affect his hearing. The ENT decided to put ear tubes in during his scheduled surgery and the audiologist would follow with a sedated hearing test to get a more accurate hearing result.
The morning of Jude's surgery, he woke us up at 7:30 with his giggles and babbling from the crib. I laid him in his favorite spot, between daddy and mommy. He hugged, kissed, and giggled with us until it was time to get ready and go. The drive down was long and quiet. Finally, we arrived and we waited for an eternity. When they took Jude to surgery, my stomach turned and my eyes filled up with tears. I hated the thought of not being with him. Throughout the surgery, I received updates and spoke with his doctors. Dr. Siefarth came and told me the G-tube and Nissen were successful. Next, Dr. Anne informed me she was only able to put in one ear tube because the other was too small. Lastly, the sedated hearing test did show he has a low partial hearing loss. After five never ending hours of surgery, I saw my baby in the ICU. He was medicated and swollen. I knew the next few days would be long and painful for Jude. I spent the entire next day rocking Jude in my arms. In the middle of his crying, he lost his IV and it took 5 times before they were able to get an IV in again. At the end of the day, I was feeling extremely guilty for putting him through these surgeries. Everyone reassured me that it had to be done and it would get better. Over the next few days, he slowly started to improve. He began receiving slow feeds through his G-tube and needed less of the pain medicine. After five days in the hospital, we were discharged to go home with 9 doctor appointments, a sleep study, and scheduling appointments at the feeding clinic!
The past month has been overwhelming, scary, and frustrating. Jude has a very busy and tiring schedule ahead of him. Some days it is a battle not to be angry or sad that Jude has so many challenges and I do not have the answer to fix it all for him. As his mother, I am sure that I will search for that answer endlessly. Fortunately, Jude has been blessed with therapist, doctors, nurses, family, and friends that do not stop encouraging, supporting, helping, and loving him. Even though he has been given so many challenges this past month he still is so happy and improving! I know I will have hard days watching him overcome his challenges but I will always find my strength in his courage and that unbeatable SMILE!
