I would like to introduce you to one of my heroes…..my son, Jude! He was born on December 29, 2011. He was born at 36weeks and 5 days. He had to come a little early because I had low amniotic fluid. We were expecting him to go to the NICU because he was early but he surprised everyone when he came out pink, crying and as far as anyone could tell…healthy.
Jude was a sweet baby who loved to smile and steal the attention of others with his contagious smile. He was a sweet tempered baby. He had red hair and green eyes, a beautiful baby boy. At about 6.5 months of age, he began vomiting after feeds, not all feeds but some. I always noticed he breathed faster than my other babies and the babies we were around, but didn’t think much of it until he began vomiting. My mommy gut was telling me something was going on, but I had no idea what it could be. He did get RSV at 4 weeks old and had to do breathing treatments for a while, and honestly after that is when I noticed his breathing was fast and it just never slowed to normal. Looking back, I think the RSV really worked against his PVS (pulmonary vein stenosis)…..which we did not know he had. The RSV probably damaged his lungs a bit and made his heart and lungs work harder. Like I said, at 6.5 months old he started to vomit after feeds. He would get a little clammy and fussy, then vomit. I brought this to my pediatrician’s attention and I am pretty sure they thought I was exaggerating when I said vomit, because you know after 2 kids I don’t know the difference between vomit and spit up :-). We were also fighting ear infections with Jude, he had them often and we were nearing the time to go see an ENT about tubes. Summer of 2012 was crazy. We were selling our house and buying another. Trying to keep a house clean for showings with 3 littles is not an easy task. September of 2012 we moved into our new house and got settled in. The busy life was no problem for Jude, he just went with the flow and never complained. Looking back, I wish I would not have been so busy, maybe I would have picked up on more symptoms. Hind sight is 20/20 right? I firmly believe Jude’s life played out just the way God planned, eventhough the mommy in me wishes I could have done more.
We started taking Jude in to the pedi for weight checks because he was not gaining weight. He quit gaining weight around 7 months old. From 7-11 months old he did not gain weight….another red flag!! His vomiting progressed, from after feeds to any time he got upset. Diaper changes were not his favorite and he started to protest diaper changes. We had to be quick or he would get upset, get clammy, have color changes around his lips, and then vomit. As soon as he would vomit, it’s like he was relieved and instantly felt better. I went to our pedi again, explaining what was going on and I told them I believe it was all due to his breathing. At the time, I didn’t know how it was all connected but as his mom that saw him everyday, I knew his breathing was somehow directly related to his vomiting. The pedi did not agree and thought we were dealing with a pulmonary (lung) and gastrointestinal (tummy) issue. He ended up getting yet another ear infection so our pedi sent us to the ENT and on November 16th he had tubes placed. After the tubes surgery, Jude was having a hard time getting his oxygen saturations up. The surgery center staff took a chest x Ray and concluded that he had broncholitis….fancy word or inflammation of the bronchiole tubes in the lungs. This is usually caused by a respiratory infection. So they assumed that Jude was sick and we didn’t know he was before the surgery. After 6 hours in recovery from tubes, we were sent home to follow up with our pedi. I called the pedi and pretty much demanded a consult appointment with a pulmomologist. The pedi thought we should also get a GI consult. Well as many of you know, specialty appointments never happen quickly.
Thirteen days after the ear tubes surgery was the beginning of the end. November 29, 2012…. The morning of Jude’s 11 month birthday, I was putting him in his high chair for breakfast and I accidentally pinched his finger on the tray of the high chair. He took a deep breathe in to cry, got stiff, turned blue and quit breathing! I of course called 911, and by the time they got there, he had come to and vomited. When they took him, he was not himself….he was very lethargic and zoned out. Once we finally got him to the right hospital…Cook Children’s Hospital…we got the diagnosis that explained all his symptoms over the last several months…….Pulmonary Hypertension. PH is high blood pressure in the lungs, that can lead to heart failure. It has many causes, and no one, at the time, was sure why Jude had PH.
He was diagnosed by doing an echo on his heart and it showed that the right side of his heart was failing….it was severely enlarged. (Side note: vomiting is a symptom of right heart failure). The pressures in all his veins and lungs were more than double what they should have been. He was admitted to the ICU that night and put on nitric oxide. The doctors and nurses were perplexed as to how this was missed for so long. PH is most commonly misdiagnosed for asthma. Our pedi did say that Jude was prob going to be an asthma kiddo. The nitric oxide was not working. The episode Jude had at home kept happening at the hospital and we still did not have any answers as to why he had PH. When I say episode, it was technically a PH crisis. One night he had a pretty bad episode and the docs had to bag him and intubate. We made the decision to put him on ECMO (Extracorporeal Membrane Oxygenation), which is a machine that takes over the work of the lungs and heart, so they have time to rest. In Jude’s case we were buying him time to figure out why he had PH and hoping that by resting the lungs and heart they could recooperate a little. While he was on ECMO, Jude underwent a heart catherization to figure out what was going on in his heart and lungs and causing his pulmonary hypertension. The heart cath told us that his pulmonary veins were small, narrowed and underdeveloped. This is when we found out he had PVS (Pulmonary Vein Stenosis). This was causing his PH. The cardiac surgeon told us that Jude was not a canidate for surgery on his veins because they were too small, underdeveloped and the disease went deep into the lungs.
Our next step was to see if Jude was a canadite for lung transplant. He had to come off ECMO to even be considered for lung transplant. While on ECMO Jude started to have right side body twitching. He was hooked up to EEG and had a brain ultrasound. The neurologist did not like what he saw on the left side of Judes brain and wanted to do an MRI for a more definative picture. We decided to take him off ECMO, and go ahead with planning to donate his organs when the time came. He came off ECMO and I held him, because we were not sure how he would do or how long he would last off of it. Jude suprised everyone and did pretty well. The next day we had the MRI because if he did have brain damage then he would NOT be a canidate for lung transplant. During the MRI, he crashed and they brought him back. The MRI did show significant brain damage on the left side of his brain. So this brings us to a crossroads with Jude’s life. We had to come to terms with the fact that we are going to lose our baby boy. We had Life Gift contacted again for organ donation. While we waited for them to arrive, we had all the family come through and say their goodbyes. Daniel and I laid with Jude and cried. I wrestled with God because I was so angry that He was taking him from me. I know that Jude was God’s first and He graciously trusted me to be Jude’s mommy, but I wanted a miracle!!
Once Life Gift was in the OR and ready to take Jude once he passed, we went down to a room outside the OR and unhooked Jude from everything. We were told he would probably pass within minutes. God and Jude had other plans……he hung on for 100 minutes. This was the most heart wrenching, emotional 100 minutes of my life. No one anticipated this, not even the doctors. After 90 minutes he was no longer able to donate organs. We put him back in the bed and I laid beside him as they rolled us back to an ICU room to say our final goodbyes. Walking away from his hospital room and leaving him just laying there, haunts me. I know it was only his body and his soul was already in the arms of Jesus but my heart was so broken, it could not comprehend all that was happening. Jude went to Heaven Dec. 6th, 2012 at 6:00pm.
I share all this because my hope is that someone may resonate with our story. Stories are meant to be shared, and our story may help another family. I thank you for taking the time to read about our little mans life. He will forever be remembered and his life has directly effected his little sisters life. I will share about Jaylie in an upcoming post. The loss of a child is a pain like no other. I know God can understand because he gave his only son up to save me. He knew the ultimate plan and that good would come out of His sacrifice but He still wept. God understands my pain but unlike Him, I can not see the big picture but I trust in Him and believe good has and will continue to come from Jude’s death.