Sunday, October 23, 2011

Jonah's story

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.


  1. I am heartbroken for you. You and all of your family will be in my prayers, that you may find peace and stay strong in faith despite this terrible loss.

  2. You are in the prayers of this complete stranger and her family. May God bless you and give you the grace to weather this tragic loss.

  3. Oh, Ashley, I wish I could hold you. I am so very very sorry. So sorry. You are in my prayers.

  4. I am so very sorry for your loss, Ashley. You and your family are in our prayers in a special way tonight. May Our Lord give you the healing and peace that can only come from Him.

  5. I'm so, so sorry, Ashley. You've been often in my prayers and on my mind. I just wish I could give you a big hug.

  6. I too am a mother of a Jonah. You must forgive yourself- everything you did is what I would have done too. Once you have forgiven yourself, then try and forgive those in charge. We'll never understand the why's and the should've's are useless. You will see him again, it's just hard to wait that long.
    Prayers for all of you, but especially you.

  7. I'm so so so sorry for you loss. You are in our prayers and I hope you can find solace in the fact that your precious Jonah is in our Father's arms right now. He'll be watching and waiting for you and yours....God Bless sweet mama....

  8. Praying for you and your family. I'm so sorry for you. I can't hug you but I can pray.

  9. I am so sorry for your loss of your baby boy. I wish I lived closer to give you a hand. I don't know you, and my heart is aching for what you are going through. May our loving God give you grace and comfort that your baby is with Jesus and all the heavenly angels. {internet hugs}

  10. I am so, so sorry. Praying for you and your family.

  11. Praying for you and your family.

  12. so very, very sorry. prayers for you, Edmund and your family...

  13. I agree with Marnie: I know it's easier said than done, but please try not to blame yourself. You didn't do anything wrong. There's no way you could have predicted this horrible tragic outcome, or the way things might have played out under different circumstances. I know if it were me I would be analyzing everything and second-guessing everything, and I just pray that somehow you find peace and get some answers and some closure. Jonah is so lucky to have you for a mother. I just wish your time with him in this life didn't have to be so brief.

  14. I am so very, very sorry. You and your family are in my prayers .... Lord, have mercy. I'm so sorry.

  15. Praying for you, your family and for God's peace through all of this.


  16. We will be praying for you and your family.

  17. Many prayers. May Mama Mary hold you all close to her bosom and help you carry your grief and may God's grace surround you.

  18. Saying a prayer for you and your family.

  19. May the Lord hold you in His hand during this time and Mother Mary wrap her mantle around you. I cannot imagine the difficulty of this loss. Prayers going up.

  20. Praying for you...although my son did not die, we have lived through so much of what you speak. So much....I don't know you, but I love you and will pray for you. Our son also has a rare disorder, Sotos syndrome. We will ask sweet Jonah to pray for us all and for you his sweet momma and his daddy and siblings.
    If you really need a song that will help you mourn and scream and cry, listen to Steven Curtis Chapman...Beauty Will Rise, or better, God is in Control. Those are my songs for every hospitalization and sleepless night that I have lived since our boy was born.
    I will pray for you dear sister in Christ.

  21. I will pray for you. My mother is with me right now. After I caught my breath I shared with her Jonah's story and your grief. When she caught hers she shared again the story of my brothers. One was still birth and one died when he was four. She will know how to pray.

  22. I am so sorry for your horrific loss and will be praying for you and your family..... Thank you for sharing Jonah's story.

  23. Oh my dear Ashley, God's love is far more powerful than the evil that destroys. You will no longer hold Jonah in your loving arms, but God will. And Jonah will now be the link between you and our all powerful and merciful God. A title of a book says it all - "The Appalling Strangeness of the Mercy of God!" Why do we suffer except to follow Jesus on the way of the cross and find resurrection. God bless you and your family! I keep you in my prayers!!

  24. You have a very clear & descriptive way of writing ~ and my stomach is in knots having read Jonah's story. If it were God's will for you to have "done" anything more for Jonah, you would have ~He would have made it happen.

    I keep telling myself these same words. I touched base a bit on the NMF site. Though my story is different, we moms do seem to share this burden of "what else should I have done?"... "what did I miss?" .... "if I hadn't been so tired, would I have picked up on ____?"

    I do find a sense of peace in that Montie passed away at home because he was such a homebody. He'd just gotten home the previous evening from back surgery & he passed away the next morning around 6:15. I, too, have thought, "If only we'd stayed another night at the hospital"... but then maybe he would've died in the sterile environment he was always eager from which to go home??

    Oh my now I feel like I'm rambling :) You know, even though I've been through losing a child, it's still hard to know what to say to another mommy... hold tight God's promises & know that we will all be reunited in Heaven <3
    Have been praying for all of you... Denise

  25. I came to your blog via Faith and Family. I am so sorry about the passing of your sweet son, Jonah. I have also lost a son. Our Henry was born still, full term, for unknown reasons. I know the raw and deep ache in your heart. I am so sorry. May Jonah be your family's most powerful intercessor. Prayers for you this day.

  26. Ashley, I saw your prayer request at Pray More Novenas and was so touched and saddened that I followed your link here. I'm so terribly sorry for your loss, and you and your family will be in our prayers.