We lost our dear sweet baby Jonah early Wednesday morning and the pain is almost unbearable. Many people are curious as to what happened with Jonah so I will tell his story here.
Jonah was born perfect, 8 lbs. 14 oz. and 21 inches long at 39 weeks via scheduled c-section. He breastfed right away and my milk came in like it was supposed to. We named him Jonah Edmund, Edmund after my grandfather on my Dad's side who had passed away. He was Grandpa's first namesake out of his many grand and great grandchildren.
Jonah completed our family. We were ready to throw in the towel on this baby making journey and call it a win. We had 2 gorgeous, dramatic, and spirited girls, and 2 wonderful, snuggly, adorable boys. Who could ask for more? Although we hadn't made any official plans to prevent a future pregnancy we both felt our hands were full and our pocketbooks were empty. We planned to use NFP to avoid more pregnancies. We had found out from cord blood testing that Jonah had
Marfan Syndrome and would therefore have some medical concerns. We were at peace with this since I have the disorder as well as my 2.5 year old twins. We were prepared to help Jonah thrive despite the challenges Marfan has to offer.
Jonah thrived. He gained well on my breastmilk, and was cooing at his 2 month appointment. He was so gorgeous. Absolutely spectacular. Then something began to change.
By Jonah's 4 month appointment he was no longer cooing. He hadn't begun to babble as he was supposed to and his neck was still floppy. Jonah was not making eye contact or smiling or giggling like you would expect from a baby his age. These were not necessarily typical behaviors of a baby with Marfan Syndrome. Our other son had been robust and cheerful. Jonah appeared to be much younger than he actually was. He was extremely sensitive to light and rarely opened his eyes.
We discovered Jonah had congenital glaucoma. The doctors were confused as this is not usually a condition that presents in children with Marfan Syndrome unless they have had their lenses removed, which Jonah had not. Jonah had glaucoma surgery in both eyes and his demeanor improved dramatically. I will always remember when we were out at a pizza parlor and Jonah had his eyes open and was looking around for the first time.
We had stabilized the glaucoma. but we began to notice other concerns with Jonah's development. Between his 4 month checkup and his 6 month checkup, Jonah had lost over a pound. He was being described as having both hypertonia and hypotonia, and his developmental delays had become more obvious. Jonah's developmental pediatrician was very concerned about his weight and a g-tube was suggested. I was hesitant at first.
We tried Jonah on 3 different bottle types. His Occupational and Physical therapists tried and so did his Daddy to get him to take a bottle, but he refused. Jonah would not even close his mouth around the bottle nipple. We tried a supplemental nursing system (SNS) and Jonah would not tolerate it. He would push the tube out of his mouth and if the tube stayed long enough for the flow of formula to start he would pull off. I tried syringe feeding Jonah but he struggled and choked. Jonah loved to nurse. He had wet and poopy diapers and seemed to be nursing well but just would not gain weight.
After having several labs done which appeared normal, and consulting with a few lactation consultants, one of whom is likely the best in the state, my husband and I came to the difficult conclusion to have Jonah receive a g-tube. The date was set, 10/17, my husband's birthday. Our hope was that if we got Jonah's nutritional state under control then his development might have a higher likelihood of progressing more normally.
Jonah made it through the surgery fine. I was not allowed to nurse him directly after as I had been with his previous procedures under anesthesia but I did pump 5 ounces for him to save for his g-tube feeding later, and when I was able to I nursed him what I had left.
We spent the night in a lavish hospital room. A lot of the night is a blur. Jonah was very sleepy, which we assumed was because of the anesthesia. Jonah was started on 50ml feeds and the goal was to increase him to 105 ml feeds before he would be released.
The first 50 ml feed went wonderfully. I was holding my sweet baby on my lap and as the fortified breastmilk entered his tummy he became serene. If I remember correctly Jonah received his second feed while my brother and his girlfriend were visiting us in the hospital room. I was holding Jonah and we were laughing and joking and looking at silly websites. Things were going well.
3 hours later it was time for Jonah's 105 ml feed. Things dramatically took a turn for the worse. Jonah was visibly uncomfortable with so much liquid. He fussed and was trying to pull away from the tube while the nurse pumped 105 ml of formula into his belly in less than five minutes. I was crying and asking her to stop. Jonah threw up half of this feeding all over me. 3 hours later a second feeding went the same way. I begged for them to take his feedings back down to the 50 ml so I could nurse him and he would be more comfortable. Finally they agreed to take him down to 75 ml feeds every 3 hours but I was supposed to gradually increase him to 140 ml per feeding once I got home.
While in the hospital, Jonah vomited several times. He ran a fever and grunted while he breathed. I was extremely sleep deprived and not on my a-game. I will never forgive myself for not better advocating for him. I wish more than anything we had stayed one more night in the hospital, but my husband brought the other 3 kids up to stay in the room while we got Jonah ready for discharge and my husband ran some errands. When he came back we happily loaded our kids into the car and headed for home.
At 6:30 it was time for Jonah's first feed at home. I had pumped because he had been refusing to nurse since we started the larger feeds. I had plenty of breastmilk for him so I fortified it with the formula as I had been instructed and fed him through his tube. Jonah seemed terribly full and was now grunting with each exhalation.
After 3 hours I was supposed to feed him again. I checked Jonah and he was extremely bloated. His belly felt like a hard basketball and he was still grunting. I assumed he was very full so I skipped that feeding.
12:30 came along and Jonah's belly had not changed. My 2.5 year old daughter was up with stomach cramps and diarrhea so I helped her through it and finally she started to feel well enough to go to bed. It was around 1:30.
At this time I realized I had not fed Jonah in over 7 hours. This is a baby who nursed every 2 hours at the least. He was still grunting and bloated. He had vomited small amounts of dark brown mucus and there was some dampness around his tube button. I was very concerned and first called the nurses on the floor where we had stayed the night before.
The nurse I spoke to said that his symptoms could be normal but that his breathing was possibly concerning. She advised me to call either the doctor on call at the hospital or Jonah's pediatrician. I decided to call the pediatrician.
I didn't speak with Jonah's pediatrician but the one who was on call from the practice. She was extremely kind and helpful. She told me that a lot of what was going on was normal. She said he should be seen but she said that it could wait until the morning.
Around 2:30 after talking to some of my friends about Jonah's issues I went to bed. In my mind I had decided to hell with the g-tube. I was going to nurse my baby the next day and maybe give him an ounce or two at most through the tube each feeding to supplement. He just seemed miserably full and the whole point of the g-tube was to help him grow and develop not to force feed him. I tried to bring Jonah to bed to nurse him but he refused.
My husband woke me up at 7:30 before he left for work. I woke up horrified that Jonah had not been up through the night at all. I knew what I would find when I went to his bed. Jonah was cold and lifeless. The procedure we had depended on to help our baby live and thrive had somehow killed him.
I called 911 and my husband carried Jonah down to perform cpr, but there was nothing to be done. My beautiful, perfect, angel Jonah was gone. The paramedics came and confirmed what we already knew. I held my sweet boy and sang to him and prayed and screamed and cried and stroked and kissed him until it was time for the coroner to take him away.
This was the worst day of my life. If only it had been just a nightmare, but it was true. The day he died was the worst, the day we buried him the hardest, and the day after his funeral the saddest. Now we are beginning the process of learning to live without our wonderful Jonah. I will never be the same. This is pain.
