Thursday, December 27, 2007
Monday, December 24, 2007
The nurses in Fresno made an exception for us and allowed us to hold Noah a couple of times. Noah still weighs more than Jonah. He has several adorable rolls, the nurses love his chunky cheeks. We still pray every day that his lungs will improve enough to get him off the ventilator so he can be one step closer to coming home.
“Out of difficulties grow miracles.” Jean de la Bruyere
The past week almost seems like a blur as both boys are now at Children’s Hospital of Los Angeles. Early last week the decision was made that both boys required laser eye surgery for a condition called Retinopathy of prematurity (ROP). ROP is a disease of the eye that affects prematurely born babies. It is caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment which in serious cases can cause blindness. Unfortunately there are but a handful of laser eye surgeons who work in pediatrics in all of Central Valley and they all are located in Los Angeles. Within the matter of 48 hours the arrangements were made to transfer both boys to Los Angeles and to their third hospital since birth. I was heart broken to leave Fresno and all of the relationships I had made with nurses, etc. but obviously the very best is what was needed for my sons to heal and head home.
It has been an adjustment, staying here in Los Angeles. The hospital has some of the best pediatric surgeons in all of Central Valley but its facilities are older and it is located in a more run down area of Los Angeles. I certainly felt spoiled in Fresno being in such a nice, new hospital and near so many nice communities in Fresno. I know it sounds trite but you form attachments in situations like this and I took great comfort in where we were located.
After the boys arrived, Jonah had his laser procedure immediately. After the first exam the ophthalmologist didn’t think Jonah’s eyes were as severe as the referring ophthalmologist from Fresno had thought but after the laser procedure Thursday night the doctor reported that the condition was more severe then he had anticipated. He now hopes that the procedure from last week will be sufficient and that Jonah will not require actual eye surgery to correct the ROP. It will take two weeks before we know if the laser procedure was able to fully correct the aggressive stages of ROP in Jonah’s eyes. The doctor didn’t feel Noah required immediate surgery but wanted to continue to monitor his eyes. This past Friday he thought Noah would require surgery today but as of this morning we had yet another small miracle. After examining Noah, the doctor was surprised to find that his eyes had actually improved over the weekend. Ever since the boys arrived here the doctors have been trying to lower his chronic CO2 levels, as the laser surgeon believed that this was a definite contributor to his eye condition. It was unfortunate that this past Friday night they had to put Noah back on the high frequency oscillator but with the high frequency ventilator and additional medications to lower his CO2 it looks like the results have definitely helped his eyes.
As of today Noah will not require laser eye surgery. He will continue to be monitored over the next several weeks. I began telling myself last Thursday that this experience would only be a couple of weeks and that I could make it through but unfortunately I found out Friday that the doctor here plans to keep both boys here in Los Angeles for the next 6 weeks. Hopefully at that time they will be ready to go home, if not they will head back to a less intensive NICU in Bakersfield.
Jonah has grown so much and continues to show us his little personality. He loves to be held and coos at us while he hold him in our arms. He is feisty and knows what he wants and he lets us know! He is already competing for all of Mom and Dad’s attention. Jonah now just needs to catch up to Noah in weight! Noah is adorable and all the nurses love his adorable cheeks and baby rolls. We keep praying for him that he will overcome his challenges with his lungs.
This experience has felt so long, sometimes I cannot believe it has been nearly three months it feels like an eternity at times. We are so glad the boys are where they are today but it still feels like such a long road home. We keep praying for their progress every day. We still have much to overcome with learning how to feed, etc. Sometimes when Jonah falls asleep he will have apnea spells which scare me to death, I know that both boys will probably go home on oxygen as well as several other medications. Sometimes it scares me all that they still must overcome but I know that we will find the strength to help them through this time of prematurity. The hospital here is talking about sending Jonah home with his ostomy. They are not pushed to repair his ostomy at any time and are willing to send him home to grow and gain even more weight before going in to repair his intestines.
At least both boys will be at home though and we will be in our house. It will be a nice feeling to be at home.
Merry Christmas to each of you, thank you for your support and love. Sometimes it surprises me that God really trusted us so much with these boys and sometimes I don’t feel capable for the responsibility. I know that God strengthens us all in our times of need and even if the strength is not there, as I have said before, the capacity most always is and he provides the rest.
We send wishes for a happier, healthier, blessed 2008. We will continue to send you progress of our two boys.
Love, Shane and Michelle
Thursday, December 20, 2007
Our friend Stephanie visited us in Fresno Tuesday during which she let us know about her "secret santa" (very sneaky Steph!) Thank you EVERYONE for all of your love and support. We wish we had more time for formal thank you's but we hope each of you know that we were overwhelmed by your love and support, all we expect is your prayers and you all have gone above and beyond in this Christmas season to make our holiday much brighter.
We love each of you. Thank you a million times over and we send lots of hugs for your generosity.
Also, the boys were transferred emergency yesterday to Childrens of LA. We found out Tuesday both required laser eye surgery and how convenient that the only surgeons are in Los Angeles. So both boys were sent to their third hospital since birth. It is very frustrating as a parent to be going through this in addition to everything else but at least they are receiving the very best of care. I am getting ready to leave from Bakersfield to LA in about an hour; I came home very briefly today until they could get me into the Ronald McDonald house in Los Angeles.
It looks like Noah will be sent back to Bakersfield in the next couple of weeks. It is likely that Jonah may be split yet again from his brother as his care is more critical and he must be at a hospital with surgeons who are able to monitor his progress. I hate the thought of the boys being split yet again but we have supportive family (thank goodness) who can help us should this happen.
All the best, we'll keep you posted and MERRY CHRISTMAS!
Shane and Michelle Hanna
Monday, December 17, 2007
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