Saturday, March 29, 2008

Jonah's first pair of 501's! Still a little big but so cute. We wish brother was here to get some cute photos too.
Shane is down in Fresno with Noah this weekend. He continues to do well on the steroids. Today was his last dose so we will see what his lungs are really doing come Monday. His doctor said if he has a great week after the steroids and appears stable they will send him home next Friday. While that sounds amazing I am cautiously optimistic. Noah has historically had too many set backs for me to be thrilled about this yet. I am praying fervently for it though. Things will be very complicated once Shane's mom leaves in the next week and a half and we no longer have someone down in Fresno to be with Noah every day. My father and mother will come down the 7th of April to help in Bakersfield. I guess if Noah stays down in Fresno I will be splitting my weeks between Fresno and Bakersfield. We also are still looking at transferring Noah back to Bakersfield should he remain fairly stable but not be ready to go home end of next week.

So we will see.

I forgot to mention in my earlier posts that Jonah has gained weight (thank goodness). He gained a couple of ounces in the past week so that is great. He didn't do too well with feeds today and then suddenly at 8:00 he took two ounces with no fussing in hardly no time and woke up at 10:00 starving and wanting two more ounces. I would so love if this would become the trend and not the exception!

So that is where we stand as of tonight. Still trying to get Jonah into a good feeding schedule. He is doing better at sleeping between feeds at night so that is good. We continue to pray that this round of steroids will have a lasting affect on Noah's lungs and that he will come home to us soon. This would be a miracle and answer to our prayers.

Till next time,

Shane and Michelle

Friday, March 28, 2008

Well, I guess I made that posting a bit too soon. Jonah is doing a bit better with the newer formula but still not taking every feeding without fussing. We went back to the pediatrician again today. Yesterday we went in because I was getting so worried about his fussiness and fighting with bottle feeding plus he was refusing more and more to eat. So yesterday we spent a couple of hours at the pediatrician running all kinds of blood work to check for infection as well as checking for dehydration. Everything came out fine except our doctor does want Jonah eating more. Yeah, good luck. Good news is there is an occupational therapist who has agreed to volunteer some of her time and come work with Jonah to see if he can't get into a better pattern of eating. That hopefully will help.

I was so excited about his 11:oo PM feeding last night that I thought we had finally took a turn in the road but then his 1:00 AM feeding was terrible. He cried the entire time and barely took over an ounce. He has done better though with this thicker formula that has the rice cereal and we are increasing the powder to make the formula 24 calories. We also started a second medication for acid reflux today in hopes that it will hope Jonah with his feedings.

Noah has had a great week on steroids (of course). He is down to the low flow (the system he will go home on) and eating almost all his bottles. The real challenge will come once the steroids stop. We will see if his lungs are capable of managing on their own. If he has a good, stable week next week we may transfer him closer to home as the hospital where he was born could finish off his feeding, etc.

These boys are sure keeping us on our toes! If it isn't one thing it is another. I am sorry I don't always get to return your phone calls, etc. Life is really hectic and crazy and I have to be somewhat of a hermit to protect my boys. I was living in fear Thursday morning that Jonah was getting sick and I was thinking of all the things I could have done better. I'm afraid you constantly live with guilt as a preemie parent.

I am glad he doesn't have any infections though, at least I can rest assured that he is well in that department.

Well, I better run. Keep praying for our babies. We love each of you.

Shane and Michelle
I am so excited that I had to post tonight. We tried a different formula with Jonah and he liked it so much he ate 3 ounces! I keep praying this isn't a one time deal as that would be so anti-climatic but hopefully we have found a solution! The pediatrician today gave us an Enfamil brand formula that already has the rice cereal in the powder and we thickened it to 24 calories and Jonah loved it. He hardly complained (other then when I pulled the bottle away).

Well, it is late and another feeding is coming up (another reason I figured I would just stay up because his next feeding is soon) so I will go.

Quick update on Noah. He is responding well to the steroids. He is on low settings and they are talking about trying him on low flow oxygen tomorrow (the system he would come home on). His bottle feeding is still fairly good. He is eating much more, not every feeding but he is better.

Well, we hope things are looking up. We will post more later.

Love, Shane and Michelle

Tuesday, March 25, 2008

First Week Anniversary for Jonah!

Monday, March 24, 2008

"It is important for us to realize that God is a fourth-watch God."
S. Michael Wilcox, When Your Prayers Seem Unanswered

Let me explain the above quote. I finally decided to pick up the book my father gave me a few months ago and read it tonight as I was feeling depressed about the lack of progress made by Noah in the hospital and the overall stress of dealing with Jonah's adjustment to home. My father, wise as fathers can be, gave this book to me and told me I needed to read it.

I have to admit that I haven't been the best at making time for scripture reading throughout this experience and I am sure I would have faired better during some very difficult days if I would have been more diligent. Now it is even harder with only two and a half hours of sleep at a time to find the time to read a few verses but I am trying to resolve myself to change this.

Let me get back to the quote. Basically, one of the points this author makes is that God is a "fourth-watch" God. A New Testament night was divided in to four watches: the first from six in the evening until nine and so on with the final watch being those very last hours of the night before sunrise. The author explains that often times God is a fourth watch God, when in moments of trial we are desperate that he come to us in our hour of need but often he waits until those final moments of darkness before showing us the light.

I am still praying for our fourth watch with our sweet Noah.

They went ahead and started steroids today, Prednisone to be exact, with Noah. We are hoping that a five-day, low dose will strengthen his lungs just enough to get his oxygen requirements down to the point that he can switch over to a low flow system and come home. His doctor really wants Noah at home where he can heal and be in a more stable environment. The sad part is that if the steroids do not work, I know a tracheostomy may become more likely. This just seems so horrific. I cannot imagine our beautiful son with a hole in his throat and hooked up to a home ventilator. The mere idea seems so terrible and so overwhelming.

How we have prayed for Noah. I feel sometimes we have exhausted ourselves in prayer and fasting that he might be spared the more difficult path of home ventilation. But I cannot give up yet. There is still a part of me that knows that surely God does hear us and will not abandon us. Even when I feel that my "fourth-watch" is never coming and I feel that he has left me alone to walk a very long, difficult and dark road there is still a tiny spark of hope in my heart that hopes that God will spare Noah of this challenge.

If not then we will have to adjust our lives and ourselves to doing what his best for him. At least I have the ability to somewhat cope with the idea.

Jonah is doing ok. He is still fussy with his feeds, ever since we switched him over to formula. It is a fight to get two ounces down him every three hours but we are keeping at it. I just can't believe that he was easily eating three ounces or more at the hospital and suddenly at home on formula he is eating less. It is frustrating but we are moving forward and trying our hardest to work with him. I dread to think that he would not improve and they would re-hospitalize him for a ridiculous feeding tube!! I will not give up!

At least right now Jonah allows us to put him in his swing or the bouncy seat instead of always insisting on being held. We are still working on his schedule but hopefully it will come with time.

I am anxious to see if Jonah gains weight this week. We were trying rice cereal but it thickened the formula so much that we couldn't find a proper nipple that helped Jonah. The medium flow didn't allow the formula through and the fast flow practically drowned Jonah. So we are back to 22 calorie Neosure. We may have to up the calories this Friday if he doesn't gain weight and all I can do is hope he doesn't refuse to eat after that change!

So we are waiting for our fourth watch and hoping for the best for these sweet babies. We so want our Noah at home, even with all the medications, nebulizer treatments and oxygen....we want him home! We also accept that may require home ventilation and if it does we will manage the challenge and do our best.

Keep our babies in your prayers. I so wish this journey ended the moment these boys came home but it is only beginning now.

Thank you all for your love and support.

Shane and Michelle

Sunday, March 23, 2008

Happy Easter from the boys! Why do I get the feeling Noah and Jonah will cringe when they're older at the sight of these pictures? Top two are Noah, bottom two are Jonah (cute bunny bottom!)

Whatcha talkin' about? Ha ha! I laughed when I saw how this photo of Jonah turned out!

Tuesday, March 18, 2008

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

Sunday, March 16, 2008

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

Thursday, March 6, 2008

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