Email from December 13th

Beautiful, Beautiful, beautiful, Beautiful Boy,

Before you go to sleep, Say a little prayer,
Every day in every way, It's getting better and better,

Beautiful, Beautiful, beautiful, Beautiful Boy...

It has been so long since my last post on our blog and so many things have happened that I am not even sure where to begin. The road has continued to be challenging but we have to celebrate the small victories and the precious moments that remind us of how lucky we are to have these sweet babies in our lives.

I had to include some of the lyrics to the above John Lennon song because they came to my mind when I got to hold Jonah for the first time this past Sunday. It wasn’t something that I had asked for because Jonah is still intubated but his oxygen settings are so low that the nurse suggested it was due time that I hold my son. What a blessing she was, I thank God he sent her to me because just that day I was feeling so sad that my boys were two months old and I was as of yet to hold either of them.

I held Jonah for three hours, during which he did so well and surprised the nurses as well as myself. I thought he would tolerate it for awhile but that little man snuggled right up to my chest and lay there as content as can be. Over and over in my mind I kept singing the words and hearing the melody of Lennon’s Beautiful Boy, Darling Boy as Jonah lay there and for the first time I really felt what the bond between mother and child felt like.

It is one thing for a new mother to first hold her child and it is another to hold your son for the first time, nearly two months after birth and after several situations occurring that leave you wondering how long you may have your son in your life.

It was bittersweet.

I didn’t want it to end because the nurses went through a lot of hoops to let me hold him with him still being on the ventilator. Sure enough, the next day they determined he definitely needed the VP Shunt as they had been continuously removing spinal fluid from his reservoir, so they had to put a stop to any more kangaroo sessions as he needed to rest for surgery.

This morning Jonah had the shunt placed to help with the hydrocephalus and he came back with eyes wide open (obviously from the anesthesia) but breathing well. I could hardly believe it. Even the respiratory therapist was amazed at how much he was breathing on his own. I can tell you with my Jonah that often when I am having a bad day and I come in to see his sweet eyes, he will look at met as if to say, “Mom…I am not ready to give up yet and I need you…” That has saved me several a moment to see him look up at me when he hears my voice.

They started Noah on a second round of steroids last week. I was terrified at the thought but because he has had such a turn for the worse with his oxygen, they had to do what they could to get him off the high frequency ventilator. After five days he was doing so well they extubated him and put him on what they call a bubble CPAP system. Basically, the baby does most of the breathing with a bit of encouragement from tubing that sits in their nose and provides small bubbles of air for pressure. At first he did wonderfully and our doctor ordered another three days of steroids, not at the full dose but half a dose. He continued to do well until yesterday. I had a feeling Tuesday night that something was not right as his heart rate was dipping frequently and he would forget to breathe. It seems that yesterday morning it got to the point that he would forget to breathe and they would have to intervene and hand bag him to stabilize. I received a call yesterday morning that they had gone ahead and reintubated him. He is showing signs of yet another infection and they started him immediately on antibiotics, it looks like a small infection started up again in his lungs.

Yesterday was a very tough, tough day. I had really hoped this round with the steroids would be the trick. When they called to say they had placed him back on the ventilator I just wanted to honestly give up hope. I am not a fan of the steroids, I know all about the risks associated with their use and the two times that Noah has been on steroids have increased my worries about possible disabilities in Noah’s future. I have dealt with the reality that Jonah will have some level of disability but I have always hoped that Noah would have as much of a normal life as possible. I still hope and pray for that every day, even though his oxygen related issues have been extensive and difficult.

Today Noah is doing ok on the regular ventilator and I did speak with the doctor about my frustrations regarding the steroids. He mentioned that the next time they tried extubating him they would try without steroids so I am glad he is using some discretion.

I was telling my social worker this morning that the key to surviving this experience is to pick up the pieces and just keeping going, you have to be allowed your moments of insanity because you just wouldn’t survive without them. The way to survive is to pick yourself up and keep going and that is what I am learning to do. I let myself cry, I let myself be angry and I even let myself feel heartbroken. But what I have to do, what I must do for myself and for my sons is keep going and try as hard as I can to focus on the positive things, the small acts of kindness that others show me, the acts of compassion by nurses and staff and the small steps of progress that my sons make. In fact, just today a counselor here at the hospital, stopped by my room and dropped me off a Christmas gift just to say she cared. She knew I had been having a difficult day and I just so appreciated her kindness.

I do believe that the scripture in Alma chapter 37 that reads, “by small and simple things are great things brought to pass” has taken on a new level of meaning for me during this experience. I do not think I have ever had to learn to truly value each tiny step of progress and really focus on the small miracles that happen in life until now.

Thank you to each of you for your support and love. Sometimes when I just feel like I cannot possibly take another day in this hospital atmosphere one of you will call to just say you are here and that you love the boys and us. How lucky we are to have such friendship and love in our lives.

Keep praying for Noah and Jonah; your prayers continue to be the force of change that keeps them progressing one step at a time.

Love, Shane and Michelle