Look at Noah watching Daddy! So cute. Noah is so aware of us, even the nurses make comments about how he lights up when we are with him. We pray he will come home to us soon.

Adorable photos of Jonah! Someone in our ward made this cute welcome home sign. The second photo is of Jonah sleeping away in his car seat (a miracle)! I HAD to include the bunny photo, I was going to save it until Easter but I could not resist! Talk about adorable. Grandma Hanna bought the boys outfits and cute hats to wear. Also, the bottom photo is Grandma Hanna snuggling with Jonah the morning before discharge.

"Raising kids is part joy and part guerilla warfare."
-Ed Asner-

I laughed so hard when I found this quote! Phew. What a first night at home. Jonah's days and nights are so mixed up right now. He was up all night. We would rock him and he would fall asleep and as soon as we put him down he would wake again and start crying until picked up. This continued until about three in the morning and finally after we had tried everything I told Shane to put his boppy in between us in bed and prop him in it to sleep and sure enough that was enough to satisfy him. We also have a special doughnut pillow that Noah was using in the NICU. We may try that tonight if Jonah refuses his bassinet or crib again. I know I am probably cracking by not sticking to putting him in his crib but it is hard when he has been through so much and he logically just wants to make sure Mom and Dad are there and that he isn't going to be poked, prodded or asked to bleed again for some doctor or nurse.

We tried switching him to the powdered formula today and he wasn't really liking it much. I'm not sure if the bottle was part of it too as I switched him over to the Ventair Playtex bottle. The occupational therapist said just to get the standard slow flow nipples but it seems like he might be working too hard to eat and so I think we might have to try another nipple with this next feeding.

Shane is out running errands today and since Jonah didn't sleep much last night we organized the house and did laundry. Today I am just trying to get a few more things done. It's pretty sad that Shane's only days off were yesterday and today but he has to save up for when Noah comes home too.

Keep Noah in your prayers. We are worried about him. He is struggling respiratory wise and having a hard time coming down to a low level of oxygen so we can take him home. They are trying some new inhalers today as well as increasing his liters and doing a few different things to see if he can't come down on his oxygen needs a bit. The pulmonologist saw him today and suggested that Prednisone may also be a good idea, a short dosage over three days to perhaps strengthen the lungs. At first we were very much opposed to the use of steroids but we have since spoken with the doctor and he has said that this type of steroid does not come with the same risks as the Dexamethasone which Noah took a few times several months ago (also in short, low doses).

At this point all we can do is pray for the best and that with these changes we will see things improve.

It is frustrating, however, as I feel that sometimes they push him too much. Especially considering how early he was, how poor his lungs are and that he has been off the ventilator for only a month.

All we can do in the end is pray for the best and realize he had his best chance at being weaned off the ventilator in Fresno. They are doing everything they can to assure that Noah doesn't regress to the point of needing a trachea.

Thank you all for your continued prayers. Please keep praying for both boys. We have a long road yet but at least one baby is home with us now.

Love, Shane and Michelle

Aren't Noah and Jonah looking more alike? The top photo is Noah snuggling with one of his primary nurses here at CHCC. Chantel is wonderful and we truly love her. Thank goodness there are sincere, loving individuals in the nursing profession. The below photo is of Jonah playing with his butterfly toy. He enjoys all the sounds it makes and pretty lights it displays.

Family and friends,

Jonah is set to go home Monday! I can hardly believe the day is finally here. After all we went through the hospital ended up approving Linda staying behind with Noah. Shane and I will alternate weekends to go down and spend time with Noah. I am so thrilled to have at least one of the boys home and hope that Noah will follow in the next few weeks.

We have really had an up and down day. They moved the boys down to a family care floor so the Ronald McDonald house asked us to leave because they don't consider it ICU (although it is, the rooms are live in though for one parent). Linda and I were up last night scrambling to do laundry, clean, pack and get ready to check out first thing this morning.

Then today Noah started struggling with the new settings they put him on oxygen wise and tonight they were talking about sending him back to the NICU! I almost had a nervous break down because it has been a huge stress on us to be asked to leave the Ronald McDonald house and now deal with finding a hotel for two nights and hoping to get Linda situated to stay behind in the room with Noah come Monday and now they are saying he may need to head back up to the NICU.

Good grief. I was pretty upset because they seemed to be pushing Noah a bit much this week and he just wasn't tolerating all the changes. Most of the changes they were pushing because they wanted him on lower settings so they could send the boys down to the family care floor but he just wasn't ready. I told the doctor yesterday I was worried about how much they were pushing Noah.

So we will see, they are giving Noah another day's trial and hopefully he will have a more stable day tomorrow.

Jonah is so funny. He had his "car seat challenge" today. They require all babies that will be discharged to sit in their car seat for the duration of time it takes to get home to make sure the baby won't have any spells, etc. Jonah cried the ENTIRE two hours!!! He was so upset at being stuck in a car seat when Mom was standing right there and could not pick him up. Good grief, it is a good thing he is overall stable otherwise they may not have passed him!

Well, we will keep you updated. Thank you all for your love and prayers.

Shane and Michelle

Family and friends,

Just a quick update. It is looking like Jonah will head home next week. He is back on room air without any oxygen assistance and eating all of his bottles. They are just waiting to finish antibiotics and make sure his surgical site is completely healed as well as sign off on his neurological team before he goes home. I have been told to plan on next week some time. Pray for our sweet Noah that he won't be in the hospital much longer.

The hospital here has not been helpful in allowing Shane's mother to stay behind so she can be with Noah when we return to Bakersfield with Jonah so we are looking at maybe transferring Noah back to Mercy Southwest Hospital where he was originally born back in October. It is a nice hospital that is a five minute drive from our home. I have been disappointed that Children's here is refusing to allow Grandma Hanna to stay behind and care for Noah during the week until Shane or I would visit for weekends but it doesn't seem they are willing to make an exception even with us living over an hour and a half away.

Hopefully there will be bed space available in Bakersfield as this would be the only other issue that could make transferring Noah back difficult.

Noah is stable enough to be closer to home. He is still on high flow humidity (oxygen) but he is on the lower liter side and is gradually coming down on his oxygen requirements. In the next couple of weeks we hope he'll be ready for the low flow oxygen. He struggles with finishing all of his bottles because he gets so exhausted but we are thinking of switching him to 27 calorie so he would have less volume to tackle with his bottle feedings. Plus with his chronic lung issues they want to limit his volume intake. Bless his heart he is on around 7 medications right now, including 3 diuretics.

Thank goodness Linda (Shane's mom) will be with us through March and then my Dad plans to come down for two months. The extra help is desperately needed and we are so blessed to have such a support system.

Thank you everyone for your prayers. I am so excited to finally have at least one of the boys coming home after over five months of being in the hospital.

We will keep you posted.

Shane and Michelle

Update from 6 march

“I do believe that when we face challenges in life that are far beyond our own power, it's an opportunity to build on our faith, inner strength, and courage. I've learned that how we face challenges plays a big role in the outcome of them.”

-Sasha Azevedo-

Friends and family,

I enjoyed the sentiment behind this quote and wanted to share it with you. I find that many frequently ask, “How can you really do this? What trials you have been through, I am not sure that I could do the same.”

I think the quote above best explains how I feel about what we have experienced over the past five months. I don’t really think anyone is ever ready for such an overwhelming challenge to face the terror of severe health difficulties but it is an opportunity to rise to the challenge and increase your faith, your inner strength and to build your inner courage. These are all things I find us constantly doing. Yes, some days I feel I have more in way of courage and my reservoir is plenty but there are days when life feels dark and progress seems little.

As I have always said the most important lesson you can learn is that you keep going, you keep giving, you keep praying and you keep hoping. You take that opportunity to reach far beyond your own inner strength and lean upon God to strengthen you and help you cross that extra mile and suddenly you find that the courage you never thought you had is suddenly there.

I am sure it will take years to put all of this experience into full perspective and I am sure I will continue to struggle at times with understanding why we were chosen to experience this journey. But at least I will know that God has been with us and that we tried as much as possible to face every day with courage.

I think that Noah decided he was not heading home without his brother because as soon as we started discussing his going home without Jonah he started lagging on his progress. His bottle feeding did not go so well this past weekend and then this past Tuesday he was showing some congestion so they placed him under an oxygen helmet to rest his septum from the cannulas. Of course he wasn’t thrilled about this at all. He cried nearly straight for two days and finally today they decided it wasn’t doing him near the amount of good it should have been doing because he was so upset.

He is so much happier today, it still appears he may have some congestion but overall his blood work is good and he seems to be ok. We are picking up bottle feeding again and hopefully we can start heading toward a good direction.

Jonah was taken off the ventilator Monday. He had horrible swelling for several days after surgery and is only just starting to look like himself again. He has been irritable the past two days and his surgery site is looking very painful, red and swollen so they started antibiotics again because they are worried of an infection. Hopefully with antibiotics it will clear and not require them to reopen him to drain out any infection. He was tolerating a very small amount of food over a half hour but they stopped feeds today because he was not tolerating anything so we know that something is indeed going on with his stomach. He is being watched very carefully.

I was unfortunate enough to get another round of the stomach flu this week and for the fourth time in the past five months I was sick. Thank goodness it was only a 24 hour bug and I feel much better today but I spent yesterday at the doctors and sleeping.

So we are back on track. Hopefully we will bring one boy home the end of March. At first this past weekend they were talking about Noah going home this week but I am certain he was not thrilled with the idea of leaving his brother behind.

These boys are much smarter then we truly know and twins are very connected.

Thank you all for your prayers. These past few weeks of the journey can be the longest as sometimes things like eating consistently can really take a long time and can be so frustrating because you know going home is just around the bend.

We love each of you. Thank you again for your support.

Love, Shane and Michelle

Update from 29 February

Friends and family,

I wanted to quickly update everyone before the weekend. Jonah had his 7th surgery yesterday. It was a three hour surgery to repair his ileostomy and put his intestines back together. He will be in recovery for the next week and is intubated and heavily medicated right now. The surgery went well, there was a lot of scar tissue (as would be expected from him already having two surgeries in the abdomen prior to yesterday) but everything went well from what the surgeon told us.

Noah is still off the ventilator and doing well. Today they decided to see how he will do on the low flow, the oxygen system he will go home on. If he does well and consistently does better with his bottle feeding then he could be going home in the next week or two. He didn't do well yesterday with his bottle feeding but he suffers from colic and was very upset yesterday. We also think he may have been affected by knowing what was going on with his brother. The rumor in this NICU is that twins now exactly what each is going through and it affects how well or poorly each can do. I do believe it can be true because of course these two boys knew each other before this earthly experience and their souls are very much connected.

The difficult part of this news is that one of the boys will be left behind. They are predicting at the hospital here that the boys will, as usually happens with twins, be discharged at different dates. We can only hope that the other will be discharged within a week or two of the other. It is a good thing we have willing family that will come down and stay with the boy left behind in the hospital while I go home with whoever is sent first.

I am so thrilled that we are looking at them going home soon. It will be wonderful to end this experience and take them both home where they belong.

Keep praying for both boys as this experience can change dramatically from hour to hour, day to day.

We thank you for your continued love and support.

Shane and Michelle

Pictures of Noah with Mom (Bath Time)

Video of Noah (No more ventilator)

Pictures of Jonah with Dad

Video of Jonah with Dad

Dad holding both boys

Today was the first time I was able to hold both boys together.

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