Thursday, October 25, 2007
I thought they were sweet and wanted to share them with you.
Wednesday, October 24, 2007
“What shall we then say to these things? If God be for us, who can be against us?
He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?
Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?
Nay, in all these things we are more than conquerors through him that loved us.
For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”
Romans 8 (selected verses of 31-39)
Jonah had a really rough night last night. His blood pressure and oxygen fluctuated throughout most of the night. The night nurse also noticed a dark spot on his abdomen and when they flushed it out they removed quite a bit of bile. She was worried that he might be septic when I called this morning or in other words that he may be developing an infection. Mid-morning the doctor determined that instead of continuing antibiotics they would stop treatment and start blood work to try and determine what the real issue is. Both boys have been on antibiotics basically since birth and his real worry is having drug resistance issues with the boys, it also makes it much more difficult to really determine what issues are going on as it becomes confusing to determine a problem when they are taking so much medications.
The morning nurse who measured Jonah's head today measured 3/4's centimeter of growth, this of course worried Shane and I but it seems a bit off compared to previous days. It isn't an exact science, this measure of growth, as each nurse estimates the largest area to measure and Shane just felt that it seemed unrealistic to have such a difference in a day. Even the nurses have expressed that this is very subjective. "Dr. Doom" determined he needed to meet with us at 6:00 and spent the afternoon calling around to two of the best children's hospitals in Los Angeles asking about suggestions for next steps, etc. with Jonah. When we did meet, he said the basic consensus was that Jonah is just too small to tolerate surgery at this time. Our course of action will be to continue to monitor his head growth and pray that time will grant us the opportunity to allow him to mature and stabilize. We have no idea of time, the doctor even suggested that the pressure just may stabilize on its own and that whatever damage was down due to bleeding has already happened, at this point we are more worried about managing what has already happened. I have been worrying that every day that the bleed is not addressed his risk for disabilities continues to grow but the actuality is that the damage has been done in the past two weeks.
Another issue the boys face that we spoke with the doctor about tonight is that of perforations occurring in the gut over the next several weeks/months. This is a serious issue that the doctor elaborated in great detail and basically at one point said we would need to discuss what we would do should a serious perforation occur as the survival rate of surgery would only be 50% (and that would depend on the seriousness of the perforation, he said the worst scenarios only provide a few hours of time and a transfer would not even be an option). After surgery, there would be a 90% likelihood of some type of severe disability. He said if he were making the choice he would choose to make the child comfortable and it would be a question of not how to "live" but how to "die" as surgery would be very painful, etc.
I think at this point I literally did not know how even to respond. I cannot even say how many times I have heard this same doctor talk to me about death, dying, and not taking heroic measures to resuscitate. The first time I think I was in so much shock that it took me until I got home to even register what I had been told. This time I was at least able to withstand the initial shock and process my thoughts.
Afterward Shane and I thoroughly discussed that we would never live with ourselves if we chose to not at least take all measures to save our child. I know that having a child with a disability is not a choice for some but I could not allow myself to let my child to die simply because of the high probability of some type of serious disability. I even asked the doctor what he meant by severe disability, did he mean vegetative state? No, he meant the inability to use limbs, blindness, deafness, severe retardation. Ok, I understand. But these children love, they laugh, they interact, they have lives too! How could I say that because of these odds that I don't want my child? It just does not seem to be an option for either Shane or I. Besides, how can I not give God the chance to perform miracles? How can I not trust that he will provide the path that is best by turning things over into his hands? Both Shane and I agree that we would pursue all measures to preserve the life of our child, the only time we would feel differently would be if the chances of survival were less then 5% or if our baby would live in a vegetative state. We are prepared to deal with disabilities as being a very real part of our lives when we bring the boys home, this is just something you have to accept when they are born so premature.
So right now our prayers are directed toward strengthening their bowels and lungs. We cannot tolerate any perforation whatsoever or we will indeed have serious issues on our hands. If our boys are to live then they cannot be faced with this challenge, it is just not an option for their little bodies right now.
If it isn't one issue it really is another. I at least am getting used to the roller coaster ride, or perhaps it is that God is strengthening me--? I am sure it is the latter but sometimes it feels more like shock. I was telling my cousin and close friend that I have had so many out of body experiences lately. You know, the kind where you see yourself standing over your body and thinking, "This isn't really my life...I am not really going through this." I know this is all a part of the "shock" phase of dealing with things and that I just need to hold strong and that I will make it through and make sense of why this trial and challenge at this time in our lives.
Shane gave both boys blessings tonight and blessed them with increased health and strong bowels should it be God's will. For some reason the phrase "in the name of Jesus Christ" kept ringing through my head on the ride home. It comforted me to know that when the brethren of our church offer priesthood blessings it is always done in the name of Christ, the Master of healing and the Master of miracles. All things are possible with the Saviour and that is why I included the verses from Romans. It has always been a favorite scripture of mine and I am reminded of its relevance in this situation. I am so grateful for the gospel, for the perspective it gives me during trials in my life. I am grateful for the faith and hope and the power of love. We love our boys with such tremendous emotion that we could only ever try to preserve their lives and love them in the aftermath no matter their disabilities.
Love, Shane and Michelle
Tuesday, October 23, 2007
"The smallest children are nearest to God, as the smallest planets are nearest the sun." Jean Paul Richter
Both boys had ok days today. Jonah's blood pressure and oxygen fluctuated quite a bit today as he was "shunting" off and on, meaning his open PDA valve in his heart is preventing adequate blood from getting to his lungs. A couple of times they had the respiratory therapist watching him carefully trying to adjust his settings. It is a hard thing to see as a mother but as one nurse explained it tonight this is very typical of premies, especially ones as small as Jonah. She said, "Don't let it upset you to see this happening..."
Noah did ok today. They repositioned him around noon when we went in to the NICU and he did ok but later that afternoon his heart rate shot up because one of the nurses was giving him some medication and he didn't tolerate being touched very well. At one point they had his oxygen down to 58% but once his heart rate changed so drastically they set his oxygen back up to 75%. It would be wonderful if they could get him back down to 58%, anything below that 60 mark and they can start decreasing the other settings of his ventilator which decreases his risk for the air bubbles that can damage his lungs.
All in all, they both had fairly good days. Jonah's head did increase again by 1/4 a centimeter, every day I keep hoping we'll see that it has reversed itself and I have to keep hoping. Even if it doesn't work out in the end at least I can say I prayed for a miracle every step of the way.
We had another tender moment with little Noah again tonight, toward the end of our nightly stay he opened his eyes and interacted with us. We were able to reach in to his incubator and touch him and he opened his eyes and did very well with us caressing him. His nurse even commented how well he did with our attention. He has the sweetest expressions, those tiny little eyes and nose...he looks up at us so fervently. He loves and knows his Mom and Dad.
Poor Jonah, tonight the nurse had to change his diaper, position him on his side and check his vitals and he absolutely did not like it at all. She gave him a bit of sedation because she said she had noticed he was not tolerating the noises of the NICU well. Sometimes they are able to keep lights low as well as the noise level and obviously other times it is very busy. Neither of the boys tolerate it very well but Jonah especially has a hard time with a lot of noise and light.
So tomorrow is another day, we pray it will be a good one. Every bit of progress the babies make is a huge step of success in the right direction. Thank you for your prayers, we are cautiously optimistic that Noah's lungs will make it through this yet and we still hope for the best for our little Jonah.
Love, Shane and Michelle
“To the world each one of us may be just one small person, but to one small person we may be the world.” Author UnknownThis video is so sweet, I've been excited to upload it all day (see below). The nurse let us have some personal time with Noah this morning. I was able to get this clip of daddy Shane kissing his son. Noah enjoyed our visit so much that the nurse had to reduce his oxygen and blood pressure a couple of times because his vitals improved so dramatically. They really feel our love for them, it is an incredibly powerful thing to see.
Monday, October 22, 2007
I can hardly believe we are starting our third week with baby Noah and Jonah. Thank goodness when I called early this morning Noah had tolerated being placed on his right side to collapse his lung for most of the night. They were able to reposition him so as to aerate both lungs and see if the collapsing yesterday did any good. A 4:00 x-ray this afternoon showed some improvement, not total improvement, but some. So the doctor ordered that they see how Noah would do tonight being repositioned on his left side. When we went in around 8:30 his oxygen was fluctuating so it will be interesting to see how he does throughout the night. We are praying that his lungs will improve, that he will gain some strength and need less oxygen. I would hate to see him get as bad as he was yesterday although the likelihood is very high. They also were able to lower his Dopamine levels a bit, we'll take whatever improvement he makes, even if it is a little at a time.
Little Jonah is doing the same, which aside from his bleed is good. His vitals are strong and other than requiring a bit more oxygen he had a great day. Bad news was his head circumference went up by a 1/4 of a centimeter. We do not want growth at all, as this is one of the ways in which they are able to determine if the hydrocephalus is worsening. I will never cease to pray that this issue will resolve itself without requiring surgery. I know realistically the odds and I know we still will most likely transfer to UCLA but I determined today that this is no reason to stop praying for a small miracle.
Today I told myself that I have to keep having incredible faith, strength and an unshakable belief that my boys will make it through their challenges against all odds. Sometimes I think that maybe God is giving me the opportunity to prove him, to really show that if I trust him and have faith Noah and Jonah will be the miracles that they really are.
Another thought that came to my mind tonight, both my boys are fighters. Both are fighting the odds to stay alive and every day is a blessing. I think sometimes we look at Noah and at first glance he is the more healthier looking of the two and he has an amazing amount of strength. But tonight as I sat and watched Jonah wrap his entire hand around my small finger, I realized that he is just as strong in his own way. Every time he would stretch and grab hold of my finger the thought would come to my mind that he has the type of strength that I don't even understand. Think of it, here he is, with a massive heart valve, still open, that should be causing complete havoc for his blood pressure and underdeveloped lungs as well as an incredible amount of pressure in his head and yet he is remaining stable and strong; that indeed takes a type of strength from this sweet child that I know I do not fully understand. It also came to my mind that Jonah will be a very compassionate leader some day. I don't fully understand what that may mean, but it came to be that he will have an ability to have great compassion with others.
I appreciate these moments of clarity because sometimes in the middle of all that is happening I unfortunately give in to despair. It is such a strength to me to realize that my boys have fighting spirits and that God would not give them more then their little bodies could truly handle, just as he does with us. I am sure the poem Footprints applies most with these little children in that during their painful, difficult moments God carries them close to him and whispers comfort and solace (I included the full poem below).
I wish we had direction for Jonah! I cannot express the frustration. Is he transferring to UCLA? If so, when? I am dreading the idea of splitting up our family but we must do what is best for Jonah. I hope we will know in the next week or two.
Well, it is late and I must get to bed, I just didn't want to end the day without something to share with all of you. Thank you for reading our blog and keeping up on our boys.
Love, Shane and Michelle
Footprints (by the way, this is Shane's favorite poem)
One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene, he noticed two sets of footprints in the sand: one belonging to him, and the other to the Lord. When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times in his life. This really bothered him and he questioned the Lord about it. "Lord, You said that once I decided to follow you, You'd walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me." The Lord replied, "My son, My precious child, I love you and I would never leave you. During your times of trial and suffering, when you see only one set of footprints, it was then that I Carried You."
Sunday, October 21, 2007
"When I dare to be powerful - to use my strength in service of my vision, then it becomes less and less important whether I am afraid." Audre Lorde
Earlier today I forgot to mention a few positive things that have happened! Plus my Mom mentioned when I felt it was appropriate I should share some of the things that Shane says when he gives the boys priesthood blessings.
First, Jonah opened his eyes last night! We got to be the first to see it so that was really sweet. The nurse said early this morning that he had been peeking at them every time they reached in to do a procedure.
Second, Shane gave Noah a heart felt father's blessing last night. He blessed his lungs to improve and blessed him that he would someday serve an honorable full time mission. That is our prayer right now to Heavenly Father, please preserve both boys and all their abilities so that we can raise them righteously to serve full time missions and accomplish everything that the Lord has in store for them.
I am so grateful for the priesthood, already Shane has had the opportunity to bless his boys several times and I am sure that this will continue during the upcoming months. I also pray over my boys, almost every time that I cradle their tiny heads in my hands. I know God hears a Mother's prayer.
Also, the nurses told Shane earlier this evening that Noah's x-ray is showing that what they are doing for his right lung is working. They are actually in the process of collapsing his right lung so it can heal from the emphysema that is developing. We pray that he will tolerate this positioning well and that the increase in oxygen to compensate will not affect his left lung.
I wanted to share these thoughts with you as they have come to me in just the past couple of hours. We are off to the NICU again to visit our boys.
Love, Shane and Michelle
“Tears are the safety valve of the heart when too much pressure is laid on it.” Albert Smith
Mid-day and already I feel like a thousand have passed. I keep thinking that I have developed a thick skin and then something new happens and I feel like I've shattered to a thousand pieces all over again. Thank goodness I have God, my husband and family/friends to help me pick it all up and start all over.
Sweet Noah is in such a critical state right now with his lungs. I guess we didn't realize how serious it was until Dr. Doom (as I have fondly dubbed him, because every time we see him he has this poor way of communicating the worst of news) began talking about how really sick Noah is.
I guess they have started to see a type of emphysema in his lungs. They are very worried about this because it can cause serious complications. The situation is this, he needs high levels of oxygen for support and this is causing very negative side affects. I guess the hope (well that is my word, this particular doctor doesn't allude to any type of hope whenever explaining the situation with our babies) is that Noah will not worsen to the point of needing total lung support, if so he could suffer from bursting air bubbles which could cause immediate respiratory arrest and possible lung failure. To prevent this from happening, should he worsen, they would have to reduce his oxygen to very low levels to save his lungs but as a result damage other vital organs (including the brain, etc.)
Of our two babies little Noah is now the "very critical" of the two.
The update on Jonah is that basically he is too unstable at this time to transfer (I feel like this changes every day!) I guess the ventilator that he requires for oxygen does not transfer and he is not able to be switched to a more conventional one that would. A small bit of good news is that his head, while increasing in size, is not at the absolute maximum in growth that would require immediate transfer. Yes, it is still growing more then it should but not enough that the doctors have to risk all things and immediately send him to UCLA. So the course of action seems to be to monitor Jonah for the time being with a transfer pending on what happens over the next few days. Thank the heavens above that his other vitals, including lungs, are strong. Even his blood pressure remains good.
I think that the nurses felt our sadness today and offered to allow us, for the FIRST time, to kiss our sweet babies. I even got to lay my head next to both and whisper to them. It was perhaps one of the most emotional moments in the NICU for me. How I have longed to hold my boys! I sleep with one of their baby blankets gifted to us by my aunt and a toy given to us by one of Shane's aunts. I still wake up at night crying sometimes because I just want to hold my boys. I hope none of you will ever go through this horrible aching of not being able to hold your children. I wouldn't wish this on even my worst of enemies.
Both Shane and I got to kiss our boys and whisper to them. I was so grateful for the moment but it also worsened the pains in my heart because I was even more aware of how much I want to hold them close to me and cannot. It's also hard because we are having to share very private moments with an entire staff of nurses, sometime I wish we could just be in our own little area...away from everyone else.
So today is not a good day for me, but I know I'll rearrange things into perspective once given time. Sometimes that is all you need, a few hours to just collect yourself and pray for support and cry to a loved one.
Please continue to pray for our beautiful boys, I promise you that what you each have done in way of thoughts and prayers has preserved our sons over the past two weeks. We need you, we desperately need you to remember our boys. I know your prayers are making the difference. Even if you have never prayed or perhaps it has been a long time for you and prayer, if you could start today and say a simple prayer for Jonah and Noah. I know that it will help my sons and we need you to call down the angels of heaven to watch over them, to comfort them and strengthen them so they will come home to us soon and live full lives and be able to do all those things that little boys should be able to do.
Thank you again for all your strength, love and courage.
Love, Shane and Michelle
Saturday, October 20, 2007
“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” Albert EinsteinThe roller coaster ride continues! Today Doctor Kurana started faxing paperwork over to UCLA. We should know by Monday/Tuesday when they will want the transfer to happen or if they want Jonah to stay in Bakersfield for a few more weeks. Thank goodness Jonah had a great night last night and a good day today. His spinal tap went ok, they were able to withdraw a few cc's of blood but not nearly as much as the doctor had been hoping for. Good news is his lungs are strong (amazingly, his massive PDA valve should actually be causing a great deal of problems for his lungs) and he continues to require low Dopamine levels for his blood pressure. Small miracles, small miracles. I keep reminding myself that any progress is good progress. My Dad today was saying that every bit of progress is a miracle and it really is, right? Especially for babies this small, any positive progress, every day that they do better is a small miracle.
The doctor did say today that UCLA generally likes to first try a "reservoir" before actually inserting a shunt. The plus side to this option (if Jonah is a candidate) is that it would be temporary (it functions the same as a shunt would) and if Jonah were blessed enough to recover from the bleeding on his own in the next few weeks he would not be faced with the life long management of a shunt. Obviously the down side would be putting Jonah through two separate surgeries should the reservoir not work. I know these are all things we will further discuss with the neurosurgeon once we get down to UCLA.
Noah has really been struggling with his lungs and oxygen. I feel badly as I often overlook Noah because of my overwhelming concern for Jonah, I forget that he is at just a high risk of having long term affects from being so premature. The doctor was saying the situation of Jonah and Noah is a perfect example of how imperfect the science of caring for micropremies really is...after all Noah had medication for his PDA valve which should in return help him a great deal with his lungs and Jonah still has a massive valve that he has not been treated for. Noah is struggling with his lung development and Jonah is stable. So they both have their separate issues.
We are going to give Noah another blessing tonight in hopes that his lungs will become more stable. He received another blood transfusion today which helped out a little but he is still requiring over 60% oxygen. The doctor said they are really hoping his lungs do not continue to have such severe problems as the higher the oxygen the more likely the damage to the lungs.
Now for good news with Noah and Jonah, they both gained weight! Jonah gained two ounces and Noah gained closer to 3 or 4. So I was at least right with Noah! I can tell that he has grown. Also, Jonah's head measurement did NOT get bigger today! Yes! We again are very cautiously optimistic but we are hoping that this means the bleeding has at least stopped progressing.
Noah was transferred to an enclosed bed (Giraffe bed) just like Jonah's and that is a great thing as these beds are much more affective at aiding with weight gain and overall stabilization of the babies. It was a hassle though, the nurse today said it took four of them to transfer Noah to his new bed. He said Noah handled it fairly well and that the nurses were more anxious then he was! Sounds typical of my Noah. It is interesting to see their personalities already developing.
We called the Ronald McDonald house last night and they said our social worker would need to submit the request for a stay in LA. We are keeping our fingers crossed that they will have a room available for us. My Dad is already planning to come down and then my cousin, if we transfer next week Shane will be able to stay with me for the first week before returning to start work. That gives me at least three weeks of support which is so amazing.
We will continue to keep you posted. As soon as we know about a transfer we will post more information. I get the feeling I'll be in LA for at least a month, hopefully I will be home by Thanksgiving.
Love, Shane and Michelle
Friday, October 19, 2007
This morning they had Noah all laid out on his back and I couldn't resist a photo. Noah has actually grown a bit in the last week. He is a bit swollen right now because of some edema he has been experiencing but they are monitoring him closely. A couple of nurses have agreed with me that Noah is growing and has gotten bigger in size in just the past week.
“Dum spiro, spero (Latin), "While I breath, I hope"
Both the boys did a bit better today. Noah has been struggling with his oxygen but after a surfactant treatment for his lungs he stabilized and had a much better day. Jonah, thank goodness, also had a great day. His lungs are actually in much better condition then Noah's.
Incredibly, this morning the nurse working with Jonah said his head measurement was actually slightly smaller! I was so thrilled but it is such a small step for such a critical situation. Doctor Kurana plans to perform a spinal tap tomorrow morning to try and relieve some of the fluid from the brain. He feels that Jonah is too unstable to transfer at this time. He wants to try and buy Jonah time to mature and stabilize before any transfer for a shunt surgery.
Of course we're cautiously hopeful, maybe the reduction in his head size could finally be a turn toward a slow recovery? It feels too premature yet to be too hopeful but there is that tiny ray of hope that maybe, just maybe Jonah will recover on his own.
We certainly have prayed with such fervency that if it is God's will that Jonah would be spared the surgery.
I did ask the doctor if Jonah is beyond the point of return, if this shunt surgery is absolutely going to happen. He basically said that at this point the chances of him recovering on his own are so minimal but yes there is that small chance he could.
He also said the spinal tap could possibly not recover any fluid because generally at this stage the fluid is too thick.
Jonah had another ultrasound today so we should know the results tomorrow. It would be amazing if we could see that the fluid had somehow not worsened.
I feel so up and down about the whole situation, I so want to be hopeful that perhaps, just perhaps there is room enough for a small miracle to happen and our little Jonah won't require surgery.
I did also ask about Noah's bleed and the doctor used the word "inconsequential" so hopefully this Sunday when he has his repeat ultrasound we will not find out that it has worsened.
I again want to thank each of you for your concern and prayers. We've had a few of you contact us about places to stay at should we end up in LA for a few weeks. One former coworker and friend of Shane's took the time to email us and let us know that there is a Ronald McDonald house in LA.
Thank you all for looking out for us. We love and appreciate each of you.
Love, Shane and Michelle
Thursday, October 18, 2007
This photo is kind of dark but hopefully you can make out Shane cradling little Jonah. I also finally got recent videos to upload for both Jonah and Noah. You will see little Noah peeking at us with his blue eyes and wearing Dad's wedding band, I've been wanting to get this video up since Sunday! I hope you'll enjoy them both as much as we did and still do.
"Never tell me the odds!" Han Solo, Star Wars
Seem like a funny quote? Not really. Just last night I was telling Shane how exhausting it was to hear all the terrible odds and statistics that the doctors hand out when it comes to Jonah. You know words like cerebral palsy, autism, permanently disabled. Sometimes you wish that those doctors didn't have to be SO clinical! Couldn't they at least tell you to pray for the best? I guess that is just how life is anymore, everyone wants to be careful and not refer to any type of God and the possibility of miracles but it still seems so sad to me. So after this conversation Shane said, "Oh yes, it's just like Han Solo telling C-3PO to stop declaring their likely death every time they faced a challenge in Star Wars." I got a good laugh out of that. In fact, I'm at the point where I won't google, research or do anything yet because I don't want percentages, statistics, case studies, ANYTHING to wrap itself around my brain and take away any type of hope that I am still clinging to. Thanks, this time I want to totally trust in God instead of researching the internet for information and that is a miracle as everyone knows I am a chronic planner, etc. Even going through invitro, I wanted to know all the ins and outs of the procedures, the statistics and likelihood of getting pregnant, etc. Not this time, I have to leave it in God's hands. Like my dad said, He is the ultimate physician anyways.
Today was frustrating! Although I seem to be getting better with terrible news (I am not sure if that is a good or bad thing).
It is a matter of days before they decide where to transfer Jonah for his shunt surgery. The doctor today recommended UCLA because when they life flight they send a doctor and full team and she said she would be more comfortable with those arrangements. She also mentioned it could be as early as this weekend. I personally asked for Fresno as they have the Ronald McDonald house and accommodations for us staying for several weeks would be much easier. One nurse I spoke with this week didn't believe that UCLA made arrangements for parents, they only offer discounted hotel stays. But I talked to another nurse today and she seemed to think that UCLA offered some type of arrangements for parents with loved ones undergoing extensive care, etc. I guess we'll find out here soon. I wish we had a better idea of how long Jonah will be treated, the doctor's can only give estimates and even then it all depends on how he does in surgery, his post-op recovery, etc. They also said most likely he will also undergo the PDA surgery for the extra heart valve (so they won't need to worry about another transfer). That is good to know, I can't imagine going through transfers several times...it is a huge stress on our family, especially leaving Noah behind.
Shane is planning to stay the first week with me if Jonah is transferred this weekend or next week. I want him there for the surgery as I do much better when he is with me. He seems to hold it together and ask all the right questions (it's that linear thinking that comes with being an engineer!) I am getting stronger at putting off emotions, at least until I am home and away from the hospital. I still get a bit choked, like today when the doctor was saying that sometimes after these surgeries if babies aren't doing well parents will ask that no heroic measures be taken for the child, I remember getting choked up and looking at her and said: "The only thing that would cause us to say that would be if he was completely brain dead and would be comatose the rest of his life. If he has cerebral palsy we will still love him." It still appalls me that doctors even ask this question, why would I ever just give up on loving my child even if he was permanently disabled? Who really has the heart to do such a thing? In my darkest moments I remind myself that technology has come a long way, that even people with severe Cerebral Palsy can still lead fairly decent quality lives. Who am I to say, "Just because you medically see my child as disabled I should give up on him?" No way, I would never live with myself. Jonah has too many people, aside from his Mom, who love him without measure. No matter what, he will lead a life full of a lot of love and that IS a life worth living! No matter the circumstances that come with it.
We are going to talk to my mother-in-law tonight and ask her to come stay in our home here in Bakersfield. She is a great advocate and will give good care to our little Noah in our absence. She worked hard for 2 of her 3 boys when they were infants and sick with different ailments, in fact Shane had a nasty stomach tumor and she kept pushing the nurses and doctors until someone got the right type of test done and discovered that he needed surgery, etc. So she knows what it takes to advocate for sick ones!
I think after the first week my father will travel down to stay with me in LA, I sure wish this would only be a two week experience but it could easily turn into a month. Thank goodness I have had friends and my close cousin offer to come stay with me for support. Shane starts up work again November 1st. I sure will miss him, he has been an incredible support through this entire experience. When I was bed ridden he did everything for me and then some, when babies came early he stood by me and refused to be anything less than strong for me. I would not have made it through without his companionship.
I did want to say one thing, I really do have some good days and bad. Yes, when I write in this, my quasi-online journal, I want to be as positive as possible. After all that keeps things in focus for me and helps me when I read back at things that I may have said. But I do have my bad days, my angry days, my days when I want to say, "Hey God! I had a hard time getting pregnant, wasn't I supposed to at LEAST have healthy children out of this equation?" I am only human and my days vary in emotion. It always comes back to my faith though, thank goodness I have the gospel of Jesus Christ. I wouldn't make it through this without the knowledge that this life has a purpose and God loves all his children, no matter their situation.
We will keep you posted with updates as they come along. I am so glad to hear from so many of you saying your are keeping up with things by visiting the blog. I hope I am lucky to continue writing wherever we are transferred. I know I could ask Shane but he'll be so busy starting a new job at Grimmway Farms that he won't have the time to do much.
Thanks for your love and prayers, as always keep praying.
Love, Shane and Michelle
Wednesday, October 17, 2007
"Hope is always available to us. When we feel defeated, we need only take a deep breath and say, "Yes," and hope will reappear. Monroe Forester
I appreciated this quote today as I've had to take quite a few "breaths" to remind myself to not give up hope and that Heavenly Father is watching over us and our babies.
I'm left with mixed emotions again today. The nurse said that Jonah's head circumference is expanding with his bleeds and that is their current way of documenting the progression of the continuing bleeding. She said it will also be how they authorize a transfer for surgery. Babies at this gestation are so fragile that any specialist is hesitant to act too swiftly in deciding on surgery, transfers, etc. as it can be incredibly risky for the health of the child. So they ask for a lot of documentation proving that the head is expanding much more then it should be with whatever bleeding is ongoing.
I thought today the doctor would discuss surgery options with us but when we made it to the NICU this morning he had already left without any mention of Jonah's worsening bleed. We asked to speak with him and Shane had a chance to talk with him over the phone. His basic response was mixed, yes the bleed is worsening but we will watch it this next week before making decisions but his vitals are progressing normally. If it were not for his bleed Jonah would be right on track.
So we are grateful for his stable stats and that everything appears to be functioning as normally as it would be for this age. In fact, today his oxygen was much better than Noah's. Noah was having a rough day with his oxygen and they had made several changes to his ventilator. Although even with this, every time I look at Noah I see a better picture of health and my baby Jonah looks so vulnerable and weak.
Jonah does have a fighting spirit, I have sensed this more than once. Even today the nurse was changing him and took off his protective goggles to let us see his face and he started stretching his eyes and trying to open them. His right eye is nearly open and as I sat and talked to him he would respond and try to peak at me and I kept thinking, it's just a matter of days before this guy opens his eyes. Perhaps I am overly sensitive but at one point I could have sworn a little tear formed in the corner of his eyes and I got emotional because I've often wondered, how much pain do they really feel? Are they even aware of what a struggle they are going through? They keep them so sedated, partially so they won't fight their machines and partially so they will sleep and heal but I still wonder, how much do they comprehend? In those moments I try to vision God holding my babies close and whispering solace to their little spirits, it is the only thing that keeps me going sometimes.
We are getting ready to head out for one more visit today and then it will be another day, another start tomorrow. I'm trying to learn the importance of "one day at a time" perhaps by the end of this I will finally have it mastered.
Thank you again for your love and support, I don't think we'll ever be able to thank each of you enough for all you have done and continue to do. Just know that we are aware of all you do and thank God every day that so many people love our babies.
Love, Shane and Michelle
Below is a photo I wanted to post with yesterday's entry but I needed my talented sister to lighten it so you can actually see Noah's sweet blue eyes. If I can get the video to upload I will. Noah is wearing Shane's wedding ring, pretty amazing to see the size difference. I've been having a couple of hard days but a sister from our ward here in Bakersfield was talking to me today and said what a little miracle it was that the very day every one was fasting (this past Sunday) Noah opened his eyes. I'm having a hard time distinguishing days anymore because it is the same routine every day, I had forgotten that indeed Sunday was the day that baby Noah had opened his eyes. Thank God for miracles!
Tuesday, October 16, 2007
“I know God will not give me anything I can't handle. I just wish He didn't trust me so much.” Mother Teresa
Today has been a difficult day. Little Jonah's bleeding is continuing to get worse. The realist in me says it is a matter of days before they decide to transfer him out for a shunt surgery. The bit of me that still hopes is pleading with God that some miracle will take place to spare him of the surgery. They also found a small bleed in Noah's brain (Grade 1) which they don't seem worried about as he has passed the first week that is the most volatile for bleeds but I am terrified within days he could be where Jonah is currently at.
Right now we are pleading that at least Noah will be spared the more severe bleed as the Grade 1 does not cause any issues and generally goes away as long as it does not worsen.
Good news is their other stats seem to be doing fairly well. Jonah is still up and down with his oxygen but that is normal for his condition. The white blood cell counts for both have decreased so that is wonderful.
One of our highlights for this trip was getting to see little Noah's eyes open and look up at us. The nurse called us over as she was changing him because he started to open his eyes and Shane and I were able to talk to him and watch as his tiny blue eyes looked up at his, directly at us. Three times the nurse turned down his oxygen because his breathing drastically improved with our interaction. He is so precious and to have that experience amidst all that negativity was honestly my saving grace which kept me from breaking down in complete hopelessness.
Thank goodness God sends small miracles at the times when we just feel like we cannot go on. We love our boys and pray that someday all this suffering will make sense. I hope someday I will have a complete understanding of why they came to us so early.
Love, Shane and Michelle
I wanted to share this video clip of Noah from yesterday. He was stretching his little legs (his favorite thing to do is hang at least one leg outside of his bedding and kick, kick, kick! One of the nurses who worked 5 straight nights with him since birth kept saying to me Thursday, "He is such a strong, strong boy!") As soon as I have a better clip of Jonah moving around I will upload that as well. I also am including photos of both (Noah/left, Jonah/right).
Precious babies! We love you!
Monday, October 15, 2007
“And if there were miracles wrought then, why has God ceased to be a God of miracles and yet be an unchangeable Being? And behold, I say unto you he changeth not; if so he would cease to be God; and he ceaseth not to be God, and is a God of miracles.” Mormon 9:19
Last night and today Jonah had a couple of episodes with his oxygen. Thank goodness both times ended up being related to the position of his tube. Last night Doctor Kurana was called in to fix his tube because his oxygen dropped so drastically. A similar situation happened today around noon, they ended up needing to suction out his lungs. After, they found a few mucus plugs, etc. I guess the longer they are on the ventilators the more likely they are to have plugs develop, etc. as they aren't able to dislodge and cough up anything (obviously).
So they did finally get him settled (thank goodness). He is doing ok, it is still hard for me to see him the way that he is as he is so fragile compared to Noah. His skin has been through a beating too, right now he has a nasty little sore on his body from one of the sensors they removed. Bless my baby boy, at least he keeps fighting.
One good thing the doctor said today was that Jonah's stats are actually incredibly stable considering they haven't treated his heart PDA and with the bleeding in his brain. In fact, his stats are almost fairly close to Noah's so we can be very grateful for this.
One thing that I find bothersome is the nurses pointing out how good Noah is doing in comparison to little Jonah and how he needs to catch up to his brother. We are painfully aware of how good Noah is doing in comparison.
I do have the faith both will come home someday, the road is going to be a long one but I pray every day that they both will come home in due time and that God will grant them both normal, healthy lives. I hope one day we'll look at our boys and hardly even remember the challenges we experienced in their early days of life.
Love, Shane and Michelle
Sunday, October 14, 2007
The below pictures are almost a week old (our lap top exploded the day we came home from the hospital, how convenient) so we had to mess with things for a few days to get to these photos.
I had to post them, they are just too precious to not share. By far my most favorite is that of little Jonah grasping Dad's finger with an awful lot of strength. The other two are of Noah.
Love, Shane and Michelle
Jonah and Noah are one week old today! It is hard to believe as this past week has felt like an eternity.
Both are fairly stable today, they did notice a change in Noah's white blood cell count this morning so they started him on the three antibiotics that Jonah is taking to treat any type of infection that might be developing. Noah's distended tummy is getting a bit better but they are keeping a close eye on his stats and x-rays to make sure no perforations occur in his bowels. If this were to happen then it would mean surgery and a transfer out. Right now we are praying hard to keep the boys together, even though surgery is very possible at one point for one if not both of them.
They were changing both beds this morning so we got to do a bit of touching today as they had the boys out in the open (also because both are feeling well enough). It scared me to death though when they moved Noah's bed over to make room for another incubator because they unhooked his various oxygen tubes and the process was horribly noisy and loud. I couldn't believe that all the moving, touching, rearranging didn't even affect Noah's blood pressure, etc. I know it affected mine!!
Noah seems to be our relaxed baby, he doesn't mind being moved and all the touching when any kind of adjustments are being made. Jonah on the other hand is very sensitive to changes. His nurse did say today though that she has noticed he likes being touched, I just think we've seen him so unhappy because he had such a difficult week. I did get to cradle his head today and he really did respond and seemed to enjoy being touched. He must be feeling better! Jonah's color looks a bit better today which is great. They think the antibiotics are really helping him and he looked much more comfortable today. He was stretching his tiny chest over the past 48 hours and looked really unhappy but this morning he looked much more peaceful and at rest with things so I think the meds are really making a difference.
Tomorrow both have their heart ultrasounds, hopefully the Indocin they had Noah on will have closed his PDA valve. They both will also get head ultrasounds. We are praying fervently that Jonah's bleed will not have worsened any more, maybe we'll even be lucky enough to already see it subsiding. Noah has been fine up until now so we pray, pray that tomorrow's x-ray will not show any changes.
I got some cute video clips of both the boys as well as some sweet photos. I will also upload a few from a week ago as there is the sweetest photo of Jonah grabbing onto Shane's finger....he is such a determined spirit.
I know they will make it through this challenging time. Thank you, everyone, for your prayers. I really think there are people praying throughout the entire nation for us. We just heard today of our old singles ward from McLean, VA sending out an email and that several of our old friends where praying for the boys. We have family throughout the south, east, near Chicago and all over the west coast so the entire nation is covered!
With so much prayer we are bound to see miracles happen, so thank you all for praying for us and believing that God can make the difference.
We know he can.
Love, Shane and Michelle
Friday, October 12, 2007
It has been probably one of the most difficult weeks of our entire lives. Both Shane and I have been through so much over these past few days as our critically ill little boys fight to survive and overcome all the challenges that they face.
We found out today that Jonah has developed an infection. They started him on three types of antibiotics to ensure that every possible problem will be treated. We are waiting until next Tuesday to find out exactly what caused the infection. We are praying the medications are affective today and tomorrow as the infection could become very serious. Today, Saturday, the doctor told us that Jonah is the most critical of the two boys and that we now face many decisions with his bleeding on the brain. Only a true miracle can help our baby boy overcome and hopefully be a normal, happy boy without disabilities at this point.
Wednesday is when we first found out about Jonah's increase in bleeding in his brain. The doctor informed us that the bleeding had become significant and reached a Level 4 of 4 and that they expect he will have long term disabilities that could range from Autism, Cerebral Palsy to something mild like ADD or other learning disorder. There is still a small chance that the bleed will resolve and he will be unaffected. Of course we pray fervently every day that God will grant us a normal, healthy boy in the end but the doctors want more that we be prepared for the absolute worst of scenarios.
Our focus now is to hope that the bleed will be absorbed without complications back into the body. If not, another challenge we face is that of Jonah needing a shunt to assist with this if his body is unable to manage it on his own. The shunt will also be life long and there will be constant surgeries throughout his life to maintain, replace the shunt, etc.
We hope to keep both Noah and Jonah together as any serious surgery will require either to be transferred to Fresno, Cedar Sinai or UCLA. We hope we will not deal with this trial in addition to everything else that is ongoing.
Both babies have heart problems, specifically with that of the still open PDA valve. Normally when a child is born the PDA (an extra valve below the heart) shuts on its own but with micro-premies/premies the valve almost always remains open. Noah has been stable enough to receive the standard medication that causes the valve to shut but with Jonah's bleeding they cannot administer the medication as it will worsen his situation. So right now Jonah could face up to at least two surgeries, one possibly to insert a shunt to help with the bleeding and the second to shut the PDA.
We have received an overwhelming amount of phone calls, prayers, asks for service, etc. Right now we are doing ok and our immediate families have been in town to offer support, etc. Shane has taken this month off as he is getting ready to start a new job in November and therefore cashed out his month's worth of vacation at his old job.
Both babies have received priesthood blessings, Jonah was able to be administered to with oil. Noah earlier this week was not very stable so we haven't been able to touch him much but Jonah was doing well enough that my father and Shane were able to anoint his tiny head and provide him with a blessing. My father has reminded me of this over the past couple of days as we have undergone the difficult news of how critical Jonah really is.
Noah has been doing fairly well and yesterday (Friday) the nurse allowed me to help change his tiny diaper. We also gave him the smallest pacifier you ever saw to suck on (he loves sucking on his respirator tube) and he took right to it and curled his little hands around it and seemed to be really comforted by the tiny thing. Jonah on the other hand spit it right out! How funny to see their little individual personalities developing.
Already we can tell that Noah loves being touched while Jonah does not like to be moved, touched or done much to, of course I often wonder if that is due to his not feeling well most of the time. We figure Noah may enjoy cuddling more than Jonah and Jonah just may be our independent spirit.
Both babies are perfect and beautiful. It truly is amazing, even at this age how perfect their little hands and feet are. 5 toes, 5 fingers.....all with tiny little nails. They are truly little blessings straight from above and our love for them is tremendous. In fact that is perhaps the hardest part is to look down at their tiny bodies and not be able to hold them and comfort them through this difficult time.
I will try and keep this blog updated as much as possible as many of you would like to know what's going on.
Thank you again for your love, support and prayers. We believe in miracles and we know with your faith, prayers and support anything is possible. In fact, maybe by coincidence but to me it was a small reminder of God's love, Jonah's name tag that hangs on his incubator has the definition of "miracle" typed above his name. At some very difficult moments I look at that saying and remember that indeed Jonah is being watched over and his birth and survival so far are "extraordinary event(s) manifesting divine intervention in human affairs."
God loves these babies and as I told the nurse today, we have no concept of how much he is with them and how often he whispers comfort to their little spirits.
Love, Shane and Michelle
Tuesday, October 9, 2007
Our lives have been extraordinarily changed over the past week and a half. In the matter of 6 days I went from being put on bed rest at the hospital for pre-term labor to giving birth via C-section Sunday night, October 7th to our precious baby boys. We tried valiantly to keep them from coming early but in the end God entrusted us with the early arrival of our two boys at only 24 weeks. Jonah Coy (pictured with the white and blue blanket) was born at 12:21 AM and weighed 1 pound 7 ounces. Noah Mark (pictured with the yellow gingham quilt and hat) was born at 12:23 AM and weighed 1 pound 9 ounces. They came out fighting, as the doctor who performed my emergency C-section said. In fact, that has been told to us more then once. They are fighting right now and so far slowly winning the battle of being born so early. We have a wonderful NICU staff at Southwest Mercy Hospital dedicated to their constant care. They have accommodated our constant questions and frequent visits and they do much to help soothe our fears as they work hard to help our little boys make it through this difficult time.
We are so grateful for family and friends who have already rallied around our family and prayed, fasted and offered support in other ways. Please pray for us as we believe in miracles and know that our two boys have special missions and that Heavenly Father is most aware of them and will strengthen them through this time until we can finally take them home come January.
We will try and keep you updated with photos and even video as time allows. Right now we are managing my healing body as well as the constant critical care of Jonah and Noah.
Thanks again for all the love and support,
Shane and Michelle