Thursday, February 21, 2008

Boys in Madera (blog will be slower)

Friends and family,

The reason you have not seen a recent update on the Blog is because both boys are now down in Madera at Children’s Hospital of Central California. I am without Internet at the Ronald McDonald house and only when I find time to run down to the library do I get a chance to send out an email to everyone (Shane will update the blog with this email).

Within 24 hours of Jonah being transferred last Friday the hospital here was able to open a bed for Noah and so Saturday night I followed Noah down to Madera. Our family was reunited later that night.

This week has been nothing short of miraculous. This past Saturday night when Noah arrived I was extremely stressed at the idea of him still being on the ventilator as this hospital is not as practiced or comfortable at letting parents hold their children if they are intubated. I knew that Noah was going to struggle as he was used to getting attention and being held in Los Angeles. I asked my family to fast and pray specifically for Noah this past Sunday that his lungs might be strong and that he would quickly make it off the ventilator and not require a trach.

Monday morning the doctor here decided to give Noah a try off the ventilator and to our great surprise he is breathing wonderfully. His blood gas tests have been incredibly balanced and healthy; the most recent was close to that of a normal term baby. We are so blessed to have this great miracle in our lives. I was terrified of the thought that he would come home to us with a trach and home ventilator and I was also terrified I would spend several more weeks not being able to hold him because he was intubated. I have never prayed with such fervency over this past week that Noah would make it off the ventilator. As of today he continues to breath with the help of the high humidity nasal cannulas but he is not needing the ventilator. He has now fed twice from a bottle and both times took half an ounce with almost perfection coordination, which is amazing. The occupational therapist feels that he will be a good feeder and these past few days he has amazed us in so many ways.

Yesterday, the nurse decided to position him on his belly and right away he lifted his head up and started staring at everyone around him. You should have seen the entire room! They were giggling with delight as Noah lifted his head and watched everyone. I was feeding Jonah from a bottle at the time so the nurses and a respiratory therapist took photos. It is amazing how strong Noah is. I have a strong feeling that he will catch up in no time developmentally and I look forward to the day that he comes home to us. I do not know if Noah just woke up and said, ok…I have had enough of this and I am ready to be a real baby and start breathing on my own or if it was God’s intervention. I am sure it was both and every day I have thanked the good Lord for hearing our prayers and sparing Noah of any long-term ventilation.

This has been the best week ever since the boys were born. For the first time I feel the excitement of realizing we are in the home stretch. For the first time I feel the anticipation that we are perhaps weeks away from being able to go home! What a wonderful feeling it is!

Jonah continues to do well. He is bottle-feeding four times a day and is up to taking an ounce with every try. He is a strong little man and I often think of the saying from Shakespeare’s play A Midsummer Night’s Dream (actually the original quote was in reference to a woman) “though he be but little, he is fierce!” Jonah has proven to so many people what a great fighter he really is. They said in Los Angeles that he would struggle bottle-feeding that very likely because of his neurological situation he would have coordination difficulties but he has proved them wrong! Even today the eye doctor, after looking at the boys’ eyes, said that Jonah’s seem unaffected by his neurological issues. Every day we are amazed that he is growing as well as he is.

Noah is so interactive with his toys and his big, beautiful eyes (which look so like daddy!) follow your every move. He is a beautiful, bright and curious child. Jonah also is so alert and we have had many comments from nurses and others regarding how alert he is and how much he enjoys attention and being held. Jonah prefers to be held closely and talked to and you should see how he watches you when you talk to him.

I am grateful to the Lord for his great miracles in our lives. I thank him every day for all he has done to preserve my sons. We are so blessed and sometimes I know in my weaker moments I have been angry and upset that we were ever asked to journey through this experience but each time I am gently reminded that God does love me and that he is with me. I think often of the hymn How Great thou Art and the words, “O Lord my God, When I in awesome wonder, Consider all the worlds Thy Hands have made; I see the stars, I hear the rolling thunder, Thy power throughout the universe displayed.”

I believe in miracles and I feel so blessed that I can stand and say that God does not forget us even in our hour of need, that he is mindful of us and embraces our misery with his great compassion and love. My heart is so full of joy and thanksgiving as I know with a great assurance that God does not abandon us.

Please continue to pray for the boys as they have much to overcome and what we need most now is health. Should Noah experience a round with pneumonia again he could take several steps backwards and right now we desperately need him healthy so his lungs will continue to grow and so that he will be able to tolerate being off the ventilator. Jonah’s last surgery will be next week and we are so looking forward to this as he needs to get it out of the way so he can finish recovering and come home to us. It will take at least a week for his little body to recover and then we hope that he will pick up where he left off.

My hopes are high that by the end of March both will come home. Pray for this and we will continue to pray also. Thank you all for your love and support. We appreciate all your well wishes and numerous prayers. Our sons are here because of the goodness of our Heavenly Father and because of the hundreds of prayers said in their behalf. Thank you, each of you, for all you do.

With love, Shane and Michelle

Friday, February 15, 2008

Today Jonah was flown to Children's Hospital of Central California. He got a bit stressed on the ride down and at one point forgot to breathe but recovered. Since he arrived I've been told he has been doing fine. Shane is down with Jonah this weekend and I stayed behind in Los Angeles with Noah. I plan to leave Sunday afternoon and hope that Noah will follow Monday. I am praying that they will work quickly to get Noah down to Madera to join his brother as being separated is difficult. Jonah will be having his surgery soon, I assume next week so I want to be down for that.

Today was a bit of a difficult day, between saying goodbye to Jonah for a few days to hearing news from the doctors here in Los Angeles regarding Noah's respiratory status. They are thinking he may need a tracheostomy in order to go home. This will be a lot of management for us as he will come home on a ventilator system that we will have to monitor at all times. It was depressing news but it isn't final. Noah still has another chance maybe two at being extubated to see how he does off the ventilator. We are praying fervently that he will not come home to us with a tracheostomy but in the same breath if this is what he requires to come home than we will have to manage. The doctors also mentioned that some children keep their tracheostomys for as long as two to three years until they have grown strong enough to breath without it. I hope we are not faced with this trial.

Please keep both the boys in your prayers. I hope Jonah comes home to us the end of March and I pray that Noah will follow soon thereafter.

As I will be going down to Fresno soon I won't have internet access like I do here in Los Angeles. I have to go over to the hospital library and they block the blog so Shane will have to update it for me. Hopefully I will be able to work out uploading photos of the boys too.

Thanks again for your support,

Shane and Michelle

Thursday, February 14, 2008

I wish you not a path devoid of clouds
Nor a life on a bed of roses
Not that you might never need regret
Nor that you should never feel pain
No, that is not my wish for you

My wish for you is:
That you might be brave in time of trials
When others place crosses on your shoulders
When mountains must be climbed and chasms must be crossed
When hope can scarce shine through
That every gift God gave you may grow along with you
And let you give the gift of joy to all who care for you

Irish Blessing-

My former boss from back east, Sam Kemp, sent this beautiful Irish blessing to me. I was so touched by the thought that I wanted to share it with you on our blog. We are still here in Los Angeles. It has been a hectic situation trying to get beds for the boys back in Madera. They had one bed earlier this week but we didn't want them transferred separately so we were waiting for a second bed to open and today they gave the only bed they had away. So now we are at square one and waiting for space. It looks like we will have to send them separately after all. Jonah will most likely go first as he needs surgery and then I hope and pray Noah will follow within a week. I absolutely hate having them apart as I have already gone through this once before for two weeks back in October but it looks like at this point it is our only option. Please keep praying for our babies and for their progress. Jonah is doing fairly well and practicing every day bottle feeding a few cc's. It is slow progress but with time he will get it down. Our sweet Noah is still struggling respiratory wise and I fear that Jonah will beat Noah home and Noah will still remain hospitalized for a couple of months after Jonah comes home to us. I hope and pray Noah will not require a tracheostomy and home ventilator but if they are not able to wean him from the ventilator his only hope for coming home will be to have one.

Thanks for all your love and support. See the adorable photos and videos of the boys below.

Love, Shane and Michelle

Tuesday, February 12, 2008

Saturday, February 9, 2008

Below are photos of our sweet Noah as well as a video above. He has really filled out and looks like a healthy, chubby baby. We just need to get him off the ventilator and on a less high maintenance breathing system so he can tackle bottle feeding and come home. He is still a few ounces over six pounds.



Adorable photos of Jonah! I love the photos of Shane playing faces with Jonah and I thought you would enjoy the first real bath in a tub that Shane gave Jonah today. We are one surgery away as well as hopefully learning successfully to bottle feed before Jonah is ready to come home. We are still waiting for beds to open up in Madera but we hope early this next week both will be transferred.



Friday, February 8, 2008

I had to share this photo of me holding the boys together. One of the nurses went through quite a bit to get the two together and I'm not sure I'll be so lucky to hold them like this again until we get Noah off the ventilator. It was a sweet experience!

Wednesday, February 6, 2008

Notice what's missing in the photo and video clip below? Yes, the best news in a long time came today for Jonah. He is completely breathing on his own without any oxygen assistance. I had to take some pictures to share. Possibly by the end of the week we will be back down in Madera at Children's of Central California. Jonah will most likely have his last surgery (at least for now) next week.


video
Fear not, I am with thee, O be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen and help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.

I included the above words from the hymn, How Firm a Foundation because I had a sweet experience on Monday. I was having a difficult day and feeling rather saddened when suddenly the above words came to my mind and I found myself humming the tune of this hymn. At first I didn't realize the profound meaning of the words but it hit me very suddenly that God was thinking of me in that moment and letting me know through music that He loved me and would not abandon me. It is good to be reminded of His love for me as some days are very difficult and getting up to face another day can be quite an act of courage.

Below is a sweet video of Noah. He has really struggled the past couple of weeks and it has been hard to find good moments to take photos or video clips so I was happy today when he was calm and happy enough for me to shoot a few seconds of him stretching his little legs and arms out. He is such a sweet, beautiful baby and everyone always says how adorable he is. Jonah is a sweet little thing himself and wins over the hearts of many.

I am happy to report that we will soon transfer back to Madera. The current problem is Children's of Central California has no available beds so until things change we will continue to be here in Los Angeles. However, this does prove frustrating while we wait here without an idea of which day they will go.

I will continue to update you as soon as we have more information to share. Thank you everyone for your love and prayers.

Shane and Michelle

Tuesday, February 5, 2008

Monday, February 4, 2008

I thought everyone would enjoy the below photos. I had to also include the two video clips of Jonah. The one of him sucking on his pacifier is so cute, he also cries a little bit so you can hear his voice for the first time. Tonight they tried him out in a swing and he seemed to enjoy it so that was fun to watch.

Both boys are still here in Los Angeles but within the next week or two they will be transferred back to Children's Hospital of Central California in Madera. We are ready for the move as Jonah really needs his final surgery to put together his intestines and remove the ostomy. He will gain weight better when this happens.

We are grateful to the surgeons here at the LA hospital but we are more fond of the Madera hospital so we are excited to return.

Jonah did nipple a couple of times this past week but it was hard work and both times his heart rate dipped but nonetheless the occupational therapist felt strongly that he has the coordination and ability to bottle feed he will just need time to build the strength.

Noah has really been struggling with coming off his sedation medications. They stopped Morphine for the first time this week and it has been rough going the past few days as he adjusts to not having sedation on board. He is having a hard time learning how to calm himself down. They do give sedation when he gets to the point that he cannot be consoled but they are trying hard to get him off all sedation as obviously it is better for his growth and progress.

I am happy to say that Noah's ventilator settings are lowering and we hope and pray with time that he will be able to successfully come off the ventilator. Jonah is on very minimal oxygen settings and if he continues to improve he may not require oxygen at all when he finally goes home.

My guess is that Jonah will come home the end of March as he still must go through one more surgery and then recover as well as tackle bottle feeding (that can take time!) I hope Noah will come home to us no later then April.

Jonah now weighs nearly 6 pounds and Noah is 6 pounds 4 ounces. Jonah is filling out finally and has cute, chubby baby cheeks. He is catching up to his brother.

Thank you all for your continued support and prayers. We are so grateful for each of you and for all your constant efforts to let us know you are thinking of us.

Love, Shane and Michellee