I thought this video was sweet of little Jonah getting weighed last night. He still hasn't made it to 4 pounds and just today they ran blood work which showed he has developed a case of pneumonia but they caught it early and are treating him with antibiotics. We hope he'll recover soon and start gaining weight again.

Merry Christmas!

I thought you would enjoy these two videos of the boys. They were taken Christmas day.

Photos of Noah

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.

Photos of Jonah

Below are more recent photos of Jonah. He was recently taken off the ventilator which is a great move toward stronger lungs as well as one of the steps toward going home. He weighs over 4 pounds now.

“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

Friends and family,

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

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

"One isn't necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can't be kind, true, merciful, generous, or honest." Maya Angelou

I liked this quote as I sometimes feel that I am still developing that potential I have for courage throughout this mostly difficult journey. Some days I truly feel exhausted and that I cannot possibly emotionally carry one more burden and then some days I find the strength to smile and remember the great goodness that makes up the God that I know and love.

I wish I could say that these past few days have been easier then my last email. If anything, they have been some of the most difficult but I am grateful for those moments when with great clarity my heart is reminded that God is working small miracles with my sons and that I must not forget that these things are happening to preserve my sons and give them one more day to carry on and fight to grow out of their extreme prematurity and all the complications that have come with it.

Just when we thought perhaps both boys were finally turning a corner with their infections (Jonah had a real battle and they were changing his antibiotics, consulting with the infectious disease doctor and running all types of tests because it took him so long to respond to his medications), Noah started to show some serious signs of respiratory stress. Bless our sweet son Noah. Tests from yesterday showed that Noah has since developed the same bacteria infection that Jonah has been suffering from these past couple of weeks. The bad news is that the infection has settled in to Noah's lungs and he was maxed out on his oxygen yesterday, in fact at one point he desaturated so far that they were manually bagging him for nearly 8 minutes to try and stabilize his breathing. Shortly after that they had to return him to the oscillator, the breathing machine that he was on shortly after birth. It is a high frequency breathing machine and a more advanced ventilation system for only the chronically ill babies with serious CLD (Chronic Lung Disease).

I was at wit's end yesterday. Last week we had problems with nurses who were unprofessional, not following the proper protocol for the isolation room that both Noah and Jonah are in due to their infections (long sleeve gowns and gloves must be worn at all times and between babies everything must be changed and hands must be sanitized). Last Wednesday the particular pair of nurses we were having problems with forgot to give Jonah one of his antibiotics and it wasn't discovered until Thanksgiving day by another nurse. I was so upset, as was Shane, that we filed a complaint detailing everything that had happened.

When I found out yesterday that Noah was now ill with the same infection that Jonah had I was furious. I am so grateful there are patient representatives and good social workers who work closely with families to assure that the best possible medical care is given for all patients. I was able to collaborate with both and today a representative from the Center for Disease Control visited the hospital and came in to talk to me and said she would be making some changes and speaking with the nursing staff.

Up until now our motto has been that we want the nursing staff on our side and we will only draw attention to those details truly deserving attention. I always run my frustrations by Shane as he has a more logical ability at deciding if the situation really merits follow up with a supervisor. It is so easy to be picky about so many things when your child is going through long term care in a hospital that we try to be careful to only pursue those things deserving of attention.

I was grateful that there were people willing to listen and take my concerns seriously as I really had a hard day yesterday and I was completely heart broken to learn that Noah was suffering from a second infection when he had just only started to recover from the staff infection. The hardest part was watching them put him back on the high frequency oscillator. He fought the machine for several hours and finally they had to put him on an IV drip for sedation and pain relief so as to calm him enough to relax and allow the machine to breathe for him. The oscillator is a very unnatural way to breathe and it is hard for babies to not fight it, especially considering it has been 3 weeks since he has been on one and he has since adjusted to the regular ventilator.

I think the hardest part about all of this was we were so close to starting him on a short round of steroids so as to try and extubate him to see if he would tolerate the CPAP and if he did well then I could be holding him. I have been longing for this moment for the past two months and since I get such limited opportunities to even touch my sons at all it was very difficult to have Noah be set so far back in his progress.

Jonah, thank goodness, is having a good week. He is not completely clear of the infection and still showing some signs but he is doing better and is much more stable. Today they were a bit worried about the reservoir in his head. The fontanel is starting to bulge, meaning the fluid is not draining fast enough underneath his scalp and today they decided to perform a tap and removed a shocking 15 cc's (half an ounce) of spinal fluid. The course of action right now appears to wait and see if he can start to absorb the fluid on his own but if he continues to require taps to remove fluid they will eventually go back into surgery and replace the reservoir with the shunt which would be permanent in nature and require follow up surgeries and evaluations for life. I had hoped the reservoir would work but because his bleeding was so severe I knew it wasn't likely that it would ultimately replace the shunt, although it is still possible.

Today I am in somewhat better spirits. It really is a day to day experience and I just keep trying to forge ahead, some days with a better ability for courage then others but the important part is that I keep trying.

Thank you all for your well wishes, we are so lucky in friends and family. We are so lucky in our belief in God and for the gospel. I still struggle a lot accepting and understanding that this is my life now and that my sons came to us so early but I know with time I will have a better understanding of God's plan for our family.

Keep us in your prayers as we are praying fervently for better days ahead.

Love, Shane and Michelle

Pictures of Baby Noah

Below are more recent photos of Noah, one shows Noah grabbing on to Grandpa Langston's finger. When he is feeling well, Noah loves to grab on to fingers and loves his Daddy's touch. Just this last Friday when he wasn't feeling well and they could not calm him Shane reached in and laid his hands on his back and began to talk to Noah and he instantly calmed down. It was the sweetest thing I have seen, I think we have a Daddy's boy on hand! Can you see that he has beautiful "saucer" eyes (as I like to call them)? He has Shane's eyes and Mommy's head full of dark hair!

Pictures of Baby Jonah

I thought you would enjoy some updated photos as both boys have doubled their birth weight. Below are fairly recent photos of Jonah. One is of Shane helping the nurses change his bedding and for the first time really holding his son in his hands. I also included one of Shane reading to Jonah, he enjoys reading and singing Christmas carols to his sons. I also included one of me changing Jonah's diaper.

Email from Michelle 11/20/2007

Family and friends,

It has been a rough week or so since I last wrote you and updated our blog. The beginning of last week was actually a wonderful break in the normal challenges that our boys face, as I recounted in my November 11^th posting. It is terrible but when they have good days I’m conditioned to thinking, “is this a lull before the storm?” Indeed last Wednesday both boys started clinically showings signs of becoming ill. Jonah was really listless last Thursday and his color started to change, Noah’s color also started changing but he became really agitated and it didn’t take long for blood work to show that both were developing infections. Noah has staff and Jonah a nasty bacteria infection. We spent 48 hours on pins and needles waiting to hear back if either were what they call MRSA, Methicillin-resistant Staphylococcus aureus, a bacterium responsible for difficult-to-treat infections in humans. Many of you are probably familiar with MRSA as there have been several outbreaks of this “super bug” in hospitals across the nation, especially with those requiring long term care in hospitals.

Thank goodness both turned out to be regular infections but both are very serious. There actually are about 4-5 babies with the MRSA staff and we thought for sure Noah would develop the same but he has been spared of this, however they are nervous because his infection is in his blood stream and they worry about meningitis with premature babies when infections develop in the blood. Noah was reintubated as he no longer was able to tolerate the CPAP, he just did not have the energy to breathe on his own. That was such a disappointment as he had worked so hard and we had gone through with consent on the steroids hoping it would be a permanent transfer to the CPAP and that we wouldn’t have to discuss steroids again. I keep praying after he recovers he will slowly wean himself down to being back on the CPAP without a second round of steroids.

Jonah’s bacteria infection is severe and he still has not started reacting well to antibiotics. Yesterday we had the infectious disease group in to see our baby to exam him and make changes in his medications. They are also worried that he has developed meningitis because of his reservoir and because he has not started to recover from being on antibiotics for almost a week. Preliminary blood work didn’t show anything terribly abnormal but they did find a decrease in his glucose from a spinal fluid sample taken from the reservoir in his head and this has them worried. So now we are waiting over the next few days to see if the culture grows any bacteria. If so then they will prolong his antibiotic treatment in hopes to help him recover from the meningitis.

I fear terribly that he has developed meningitis. I know how bad this is as we were told early on that infections in the brain can have severe outcomes and with his prognosis already being so poor in way of normalcy it is hard for me not to give up all hope that he could have minor disabilities from this horrible experience of being so premature.

I do try and keep reminding myself that God is the ultimate physician and all things are possible in his hands but sometimes it is just so easy to give in to the negative, especially when the physicians here can be so negative in their predictions.

Yesterday, one of the on call doctors (thank goodness he isn’t the primary care physician for the boys) was very rude to me and in front of a visitor, a sister who came from my Bakersfield church ward to see the boys. His comment to me was that the boys middle names should be changed to “disaster” because they always had one issue or another and seemed to dislike being stable. I told him the comment was unkind but his response was he merely meant to say they aren’t remaining stable, etc. Thank goodness they have patient advocates here and I filed a complaint as well as with the charge nurse who delivered a written statement to the director of the unit. I have had similar negative and unprofessional comments made by this same doctor and I’ve let them go in the past but yesterday was so shockingly unkind that I took the time to make a point that neither my sons nor I will be dealt with in such a calloused manner.

Thank goodness all that I reported the incident too agreed and apologized profusely.

It really is amazing to see how many great and caring doctors there are here and then you run into a few bad apples that just really sour the experience. Like I said, thank goodness he is not the boys’ regular physician and after yesterday I am sure if we see him again in the future he will be much more professional in manner.

I am grateful my dad has been with me throughout this month; it helps to have company as you aren’t left with much time to think over the reality of the situation. My mom flew in yesterday and my baby sister will also be driving into Fresno from Los Angeles for Thanksgiving on Thursday. Thank goodness for family.

Continue praying for both boys. They seem to go from one challenge to another and unfortunately that is the journey of premature children. I am amazed every day though at how much they can do for both boys. They both are miracles, the fact that they were able to survive at such an early gestation is nothing short of a miracle. They only had a 50% survival rate and every day we have with them is nothing less than the hand of God keeping them here.

Thank you for your continued prayers and concern and please keep praying, fasting and thinking of them often. They need your support as well as Shane and I.

We will continue to keep you posted as time provides.

Happy Thanksgiving and God bless each of you,

Shane and Michelle