Saturday, October 29, 2011


I don't know why anyone would want to read this, I really don't. I don't know why anyone would read this blog, period. Sometimes I feel guilty for putting this sadness I'm experiencing out in the world. I've been on the other side, being a friend, family member, or internet acquaintance who has had a baby die. Reading about their experiences would give me a sick feeling in my stomach, a lump in my throat and a crushing anxiety that something like that might happen to me someday. Now it has, and I guess blogging through my worst nightmare is giving me proof that I am surviving it. Right now our family is surviving. Hopefully one day, I hope to be thriving again. It will take a long time and the grace of God to get us there. So, to those of you who read this and prayerfully consider our family, thank you and God Bless You.

So...funerals. As a child and even a teenager and young adult I didn't understand the point of funerals. I felt that we, as attendees were probably intruding on what should be an intimate time of grief. Funeral homes were depressing and the services always seemed so sad to me. I couldn't understand the point of doing something so painful as planning a funeral service when one is already grieving. I never knew what to say or even how to feel. If you are a Christian, there's the paradoxical view that although we are sad the person is no longer with us, we believe they have moved on to a heaven that is joyful, eternal, and filled with the love of Christ. We are supposed to be reminded that as Christians we will enter into that Kingdom one day and be reunited with that loved one we held so dear. So essentially the tears and sadness are our selfish desire to keep that person here with us.

That's a lot easier to deal with when the person who has passed away is 90 and has lived a full life. That person may be in failing health or on hospice or he may pass peacefully in his sleep. I remember two sets of great aunts and uncles and their deaths. It was very sad when the first spouse died, then the remaining spouse passed away shortly after and there was almost a tangible sense of relief. We believed them to be together once again, the heartache erased and their physical burdens taken away. We had such fond memories of them, and hoped they were in a better place.

But Jonah was a baby. He was 7 months old. He had just begun to live. I attended to his every need. I never left him with another caregiver. I was never frustrated with him or wanted time away from him. I have few memories of him and since he had developmental delays, I don't even have a picture of his smile. I try to cement that sweet smile with the tiny dimple into my memory but I know it will fade. The feeling of holding him, of his soft skin, his warm downy head and his soft spot, his cheek against my cheek, nuzzling his neck, nursing him and caring for him; I know these memories will become less clear as time goes on. I have beautiful pictures and one video of terrible quality to remind me that he was real, that my baby was here. For 7 months I loved him from the depths of my heart and soul. I would have done anything to help him be healthy. I would have done anything to keep him here.

And back to funerals...while as a younger person I didn't understand the value of funerals, I do now. The people who came to Jonah's visitation with love and sadness pouring out of their hearts for us allowed us to feel that tiny bits of our grief were being taken from our shoulders. Maybe we arrived with 1000 lb. sandbags of grief. Even though our loved ones could only take the few grains of sand they could carry, the burden was lifted slightly. The love was tangible. The support invaluable.

As Catholics we celebrate a Mass of Resurrection. The idea is that we are remembering the promise of baptism, the promise of Christ's gift of eternal life. My heart was breaking as we revisited the baptism of Jonah only 3 short months ago. When we promised to raise him in the faith, we had a lot longer journey in mind. Grief is strong and there is little I remember of that Mass, but I know it was beautiful.

With my crisis of faith in full swing, I hold on to the memory of Jonah's baptism and funeral, and hope for his future in Heaven. I try to visualize the potential glory and beauty he is already beholding. I try to see him in the arms of my mother, who passed away three years ago. I try to imagine him frolicking with our baby we lost to miscarriage, and with the babies my friends have lost to this world. It's a difficult concept for me, a pragmatic thinker with tendencies toward cynicism and skepticism.

I pray that in this life God will reveal to me some of the beauty of his plan and give me comfort in the future reunion in Heaven with my sweet Jonah Bear. I miss you Jonah. 3/11/11-10/19/11

Thursday, October 27, 2011

Better is one day in your courts....

Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked. Psalm 84:10

My friend came to visit me today. 3 years ago she lost her precious 8 month old daughter. She is Evangelical and I am Catholic,  so we have some differences in what I call the "spiritual details", but we talked a lot about death, and missing our kids, and being selfish, and heaven. Lots about Heaven.

It is hard to believe in a merciful and loving God when something like this happens. I am not going to sit here at my screen and pretend to anyone who is reading this that losing your child does not inspire a crisis of faith. It does, at least for me.

I have empty arms and full breasts. I have a Jonah shaped hole in my heart. I have other kids that need me when all I want to do is crawl into my bed and stay there.

If there is one thing I have learned from my 30 years on this Earth, however, it is that you have to keep going. I have to be sad, to grieve, and to cry. I love this baby and I absolutely ache to hold him and kiss him and nurse him again. 

But the reality is, that isn't going to happen. Not in my lifetime. If there was something I could do to bring him back, I would have done it already.

So what now? My friend and I talked so much about Heaven today because it gives us hope. We pictured our children laughing together and excitedly waiting for the day they might see us again. Since they are having so much fun in Heaven with Jesus and all the Saints and Angels it will be like a short time for them until we are reunited.

This is what I am trying to picture, my baby safe in the arms of the Blessed Mother, surrounded by the peace and light and love of God. Why should I want to take him from such a wonderful place?

The reality is that this hurts. I am a human, and selfish or not I miss my baby. But I am choosing to put my faith in Heaven and in the beauty and love of God which I got such a sweet glimpse of through my perfect baby boy. I am choosing to breathe, to put one foot in front of the other, and to say thank you. Thank you for my beautiful children, for my friends, my family, my husband's job, our comfortable house, plentiful food.

And for the love of God. The love I know exists because of my longing for Jonah. I am an imperfect human being and yet my love for my child is so incredibly strong. If I can love like that, how much stronger is the love of God that inspired all other Love into being?

Jonah, I'll love you forever.
I'll like you for always.
As long as I'm living
My baby you'll be.

Tuesday, October 25, 2011

Unwelcome Guest

Grief is now an uninvited guest that is overstaying its welcome in our house. I am schlepping through life in a haze. I want to draw near to my other children and to my husband  and to God but the hurt is dizzying. A constant dialogue is happening in my head. Remember the old Looney Toons schtick where there would be a devil on one shoulder and an angel on the other, trying to influence the character? Mine goes like this...

Angel says, "You did nothing wrong. You would have done anything for your baby. You loved him the best you could and it was his time."

Devil says, "You should have known, Ashley. Why did you let him have this surgery? Why didn't you ask for another night in the hospital? Why did you go to bed when you knew your child was in trouble? You should have taken him to the ER. You should have known despite what the doctor advised.Why didn't you wake up as he died?"

Angel says, "His death was painless or it would have woken you. He was ushered into heaven by the angels and saints and his loved ones before him. He is in the full glory of God and he lives on in spirit."

Devil says, "He suffered and you were not there for him. Now he is gone."

Angel says, "Live on in honor of Jonah. Live a life of love and grace in his memory. Live generously and live in the hope that you will see him again in Heaven. You were chosen to love this sweet little boy for 7 months and then it was time to let him go."

Devil says, "You are a terrible person and an unfit mother. You don't even deserve to live."

Angel says, "Look at all these friends supporting you. God has sent them. You are loved and cherished. Your little boy was loved and cherished. Your friends and family will help you through."

Devil says, "No one is going to care anymore after a few weeks and they will tire of your constant sadness. You, on the other hand will grieve forever."

For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.

Holy God, Holy Mighty One, Holy Immortal One, have mercy on us, and on the whole world.


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.