"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow." Orison Marden


Just some pics from today's skin to skin. He was trying so hard to see Jaska while he took the picture.

Today was another stable day. I am very grateful for these. Isaac was up and down on the vent again, but I just called (10:30 pm) and the nurse said that he's been stable for the last few hours--so much so that they are going to try a lower setting on his ventilator.

They started feeding him again today--he's still not pooping, but the x-rays of his belly look pretty good, so they are going for it. He's only getting tiny amounts right now as they try to prime his stomach to handle more.

Tiny progress, but I'll take it. Any progress makes me cheer.

"What we actually learn, from any given set of circumstances, determines whether we become increasingly powerless or more powerful." Blaine Lee

Isaac has been doing okay the last couple of days. His condition hasn't worsened, but it hasn't improved either. He just seems kind of stuck. At the beginning of this, as long as he had a stable day I was happy there wasn't some kind of catastrophe. Now--I realize that a stable day may not be enough any more. He has got to start showing some progress. I appreciate so much when there's an uneventful couple of days--it gives me an emotional breather, but it's very frustrating at the same time because I feel like he's stagnating.

I've been able to hold Isaac a couple more times and I'm happy to report that it's been truly wonderful, and might I say rather addicting. :) Today, he was all over the place with the ventilator--we were all baffled as to why. (The vent provides a certain amount of oxygen for him, and measures how much oxygen saturation is in his blood. When the saturation is too high, they lower the amount of oxygen they give him, too low and they increase it. Isaac would drop suddenly by 20-25% and then jump right back up again--it was weird) At first the nurse didn't want me to hold him, but he's done so well with the skin to skin holding, that she agreed--hoping it would calm him down.

It totally did. Isaac went from dropping in his saturation 10-15 times an hour to not at all during the 45 minutes I held him. Yeah, that's right baby. He knows who his Mama is. :) The nurses were so happy. He was super alert today while I held him and he looked right at me. Usually his eyes are rolling all over the place--but today he just looked at me for a little while. I don't know if he can even see me--but it was a wonderful moment and I really felt like we bonded. Being able to look into his eyes was really powerful.

"Who so loves believes the impossible." Elizabeth Barrett Browning

We had a "family meeting" today with Dr. Matson. He went over Isaac's condition in more detail and answered all our questions about CMV and other issues.

The biggest issue of course is the CMV. They got more test results back today. The spinal fluid, and the mucus in his lungs came back positive for CMV. It seems that it is affecting just about everything in his body.

Dr. Matson, while very kind, made it very clear that Isaac has very little chance of coming through this unscathed. He wanted to make sure we understood just how likely it is that Isaac will have serious neurological damage.

So now we wait---some more. Since all but the most serious damage doesn't show up for up to two years, we won't have any real indication that Isaac is out of the woods for quite some time. It is possible that the Ganciclovir will help turn his infection around, but even then , there is not going to be any real indication that it is has worked (or not) for quite some time either.

Isaac is at a real crossroads right now. If the treatment helps and/or if his body is able to adequately fight the infection, he will hopefully improve and be able to move forward. Otherwise, he will continue to deteriorate and his lungs will no longer be able to be supported by the ventilator. I didn't realize his lung situation was so serious until our meeting today.

Despite my hope and faith that Isaac will be okay, and despite the fact that I am okay with the possibility of Isaac having a disability, my world came crashing in today. I have been pretty strong all week, pretty positive, but today--even before our meeting, I just couldn't do it. It was just too much. After our discussion with the doctor, I just couldn't take any more. For the first time, I wanted to get out of there so bad--to just go do something else--anything else--something normal that would let me forget for a minute about the reality and magnitude of this.

I had been asking today about holding Isaac and doing some skin to skin care and right when I was about to flee is when they decided that I could do it. At first I didn't think I could handle it--I just couldn't deal with any more today emotionally--I desperately wanted to "check out". But, I also didn't want to pass up a chance to hold my boy. So of course I stayed.

I was able to sit with him cuddled into my shoulder for about an hour. It was really nice to be able to hold him. I would love to be able to say that it was this incredible moment that healed my heart and made me feel so much better after such a draining day--but sadly it didn't. I think it actually made me more sad in a way. I loved being able to hold him and I'm so glad I stayed, but I was just too empty today to enjoy it in the way I know I normally would. That really frustrated me.

I'm trying to stay emotionally strong through this by accepting and validating my feelings as they come--letting myself feel it fully for a little bit, and then moving on. So when I feel sad, I'll acknowledge it, bawl for a little while, and then keep going. When I'm angry, I'll rage for an hour and then get over it, etc. It's helped a lot and kept me from bottling things up. Tonight it was really hard to accept the fact that I was just empty and so so sad. I wanted so much to not be--I just couldn't help it.

Fortunately, it will pass and I will have many opportunities to hold Isaac when I am not feeling this way.

Jaska and I have felt from the beginning that there is no benefit in adopting a "Why Me?" attitude about this experience. We are willing to accept God's will for us--even when it is bone-crushingly hard. If it's what God wants for us--it's what we want. I think the biggest reason why I had such a hard time today is that as Dr. Matson was piling all this information on us, I realized with a force that while I can accept this for me, I do not want to accept this for Isaac. I do not want this for him. I'm trying to reconcile that with whether or not it's what God wants for him. It's very hard. Usually when I look at Isaac, I can't help but notice his strength. Today, I couldn't help but notice his fragility. I want to want this for him if it is for his good--if it is God's will--but today I just couldn't.

Dad's Turn II

My titles aren't nearly as cool as Jenn's.

Yesterday morning we decided that I would go see Isaac in the morning while Jenn played with Jonah. Jenn usually is the first to go while I get Jonah ready for the day. When I arrived at the hospital, I was surprised to find the nurses asking me if I wanted to hold my son! Notwithstanding all his infections and lung problems, he was stable enough to come out of his isolette to be on my chest where my body heat and a blanket would be sufficient to keep him warm.

I sat with my son on my chest, one hand cupping his bottom and the other cupping his back. My hands overlapped, he is so small. We sat together for about an hour.

I didn't get teary or overwhelmed by any emotions. It was just...nice. It's funny- holding your child in your lap is not some earth-moving unique moment, but when it's the first time since birth, and that has already been 23 days ago, you begin to realize what you've been missing. I've felt that I have aged quite a bit through this experience- maybe it has something to do with carrying burdens, but I was surprised at how much holding my son did to lighten my heart, and it was a feeling that I carried with me the rest of the day. Although it wasn't earth shattering, I think I really needed that "tender mercy." It's interesting- it seems to me that when I think strength is needed most, what I get from the Lord is tenderness.

Jenn, by the way, was extremely jealous when I got home and showed her the pictures the NICU staff had printed for me.

"Never, never, never give up." Winston Churchill

The tests they ran on Isaac take a while to come back. We still won't have the results for most of them for another week or so. They did get a preliminary result back from his lumbar puncture (spinal tap) though, which revealed an infection. They can't determine until the test is completed whether or not it is CMV, but given all the other evidence, the doctors are thinking it's pretty likely.

The results of his spinal tap show an infection in the central nervous system. This is what the doctors feared most and are quite concerned about it. Dr. Matson, one of the neonatologists explained it this way--50-75% of babies born as young as Isaac have neurological damage. 50-75% of babies with congenital symptomatic CMV have neurological damage. Not great odds to say the least. Add to that an infection in his nervous system and you're crushing what little chance is left to escape neurological damage. They are very concerned.

Dr. Matson and Dr. Krause sat down with me yesterday and told me about the test results and recommended we begin treatment using the drug Ganciclovir. We talked about it at length and went over all the details of the pros and cons of using or not using this drug for Isaac.

I was focusing hard on everything they told me--but I couldn't help but think to myself how crazy it was I was having such a conversation at all. I was stuck between feeling in every part of my body how real it all was, and at the same time, how surreal. Jaska was home with Jonah which made it even stranger for me to be having such a conversation alone.

I've realized through this process just how much of medicine can truly be an art instead of just science. Some decisions, like this one are incredibly tough--even for the experts. Both Dr. Krause and Dr. Matson admitted that sometimes in medicine there is a gray area, where they are not really sure what the best decision is and that this is one of those times. I know that it isn't possible to always know for sure what is best, but it hit me while they were telling me this, that God knows. It isn't necessary to guess, and hope that we choose what will be the best for Isaac. We can ask God and trust that He will guide us. Not all would agree with us on this :) but it's happened too many times in our lives to leave any room for us to doubt.

So Jaska and I said a prayer--him at home and me at the hospital. We felt okay with going ahead with the treatment and so they started him on it last night. As soon as the decision was made, I felt a weight lifted and stopped worrying about it. My heart felt light and I again felt that Isaac is going to be just fine. Oh how grateful I am for the comfort God provides to His children. Without it, I think I would have lost my mind by now.

The biggest risk with the Ganciclovir is that it can lower the white blood cell count and make Isaac so much more succeptable to other infection. They are going to keep a close eye on his count though and if it starts to drop, they will take him off the drug. If his count stays up, he will need to be on the drug for 42 days.

I wish this enduring to the end stuff didn't have so much enduring involved. They say patience is a virtue; I think it stinks.

"Obstacles will look large or small to you according to whether you are large or small." Orison Swett Marden

Brace yourselves folks for the latest. Be warned--it's a lot of info.

Yesterday and today we had a bit of a bombshell dropped on us. Isaac tested positive for Cytomegalovirus Infection or CMV. Most of the population actually has CMV--it's similar to mono or a cold--and is quite mild for most people. For those with compromised immune systems it is a very big deal. Particularly for very small preemies.

The Director of Pediatric Infectious Diseases, Dr. Krause, came and talked with us today and explained everything about CMV.

First--how he got it. By far the most likely (and they are running more tests to try to confirm this) is that I passed it to him in utero. 1%-4% of pregnant women will get CMV for the first time while pregnant. 30% of those will then pass it along to their unborn babies. Women who have already had it have antibodies and do not pass it on. One sign of CMV is preterm labor--which would obviously explain the early delivery. There are a couple of other possibilities they are exploring, but the evidence is pointing to a prenatal exposure.

Next--how serious is it. For the 10%-15% of infected babies who are symptomatic (Isaac is--some of his other troubles are connected), we've been told the following: Hearing Loss is the most common abnormality seen in congenital CMV infection, occuring in 30%-65% of symptomatic infants. Vision impairment is also possible. Both of these often don't show up until childhood. 90% of infants who have symptomatic CMV show abnormalities on follow-up exams, ranging from hearing impairment, to mental retardation and cerebral palsy. Some babies who get congenital CMV never have any disabilities, some have multiple problems, and some die as a result of what the infection does to their bodies. There is really no way to confirm at this point where Isaac is headed. There are indicators that if present, often are connected to later, more serious disability. They are currently running those tests and won't have the results for a few more days at least.

Finally--Treatment. Well, the bad news is there aren't many options. One to be exact. There is one somewhat experimental drug called Ganciclovir that has been used in only one study involving infants. The drug significantly helped prevent hearing loss, but that's about it. The bad news is that it has not been tested very much on babies and it has some devastating side effects--mainly a dramatically increased risk for future infections.

They are currently running many tests on Isaac to determine how severe and widespread his CMV is, in order to determine whether or not the benefits of treatment would outweigh the risks. Right now, they think not. (We agree). Dr. Krause is consulting with some of the best docs around during the next 24 hours, including an expert in CMV, to determine the best course of action for Isaac.

Sooooooooooooo........the good news just keeps on coming. We're reeling obviously. It's been a lot to take in. We're experiencing a range of emotions. Of course we want Isaac to be as healthy as possible--but coming from the perspective of being so close to losing him completely (and we are not out of the woods with that yet--especially now) him having a disability--even a serious one--seems a much better option than not having him around.

We've never been afraid of having a child with a disability. We realize that we don't really know what that would entail--but we aren't scared of or opposed to going down that road. Every child is a gift--no matter how they come and deserve a chance at life. We would love Isaac no matter what and he is already an integral part of our family. We just want him to stick around to be whoever it is he's going to be--whether perfectly healthy or very disabled--we just love him.

It's been a little weird for us how the medical staff has approached the idea of disability. We realize that they deal with a lot of parents and not all of them are thrilled with the idea of having a child with a disability. But we're kind of like, "Hearing loss? Vision Impairment? Are you kidding? What do we care if he won't be able to hear, he'll be alive for goodness sake!"

I am dreading "the talk" with the doctors that we're worried is coming about the issue of life support given the risks of a serious disability. We don't in any way want to trivialize the seriousness or impact of any disability--they are significant--but I will take a severely disabled Isaac over no Isaac without the slightest hesitation. No discussion needed thank you. We've already had that discussion when he was born so early (the MD gave us all these awful statistics and essentially asked us if we wanted them to try to save his life regardless of the dismal possibilities--not a fun conversation).

So, we'll see where this road takes us. I was a total wreck last night over it---I was so ANGRY. I'm not sure at what exactly--just so ANGRY in general. I said a prayer and received renewed strength to tackle this. Today I was calm and driven to find out everything I could about CMV and talk to whoever would talk to me about it. Having information and knowing what is going on helps me to feel like I have a little bit of control. It's also keeping me from totally falling apart. I can't think too much about the unknowns--I'm just focusing on what we know, test results as they come, and what comes next.

It's so amazing how quickly your life can change.

"The strongest oak tree of the forest is not the one that is protected from the storm and hidden from the sun. It's the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun. "
Napoleon Hill

Isaac was more stable today. Again, the up and down. It's been just about every other day all week. A bad day and then a stable day. He's still struggling with his infection and they are becoming more concerned with his belly (the x-rays don't look good and he still hasn't really pooped). They've been treating his pneumonia, but his bloodwork is still showing an infection so they suspect there is infection somewhere else as well. They just don't know where.

We went to church this morning. It was a little weird to do something so normal. It was really difficult to sit there in church and see everyone with their kids. I didn't expect that. I felt such a sense off loss at not having Isaac with us. Usually after you have a baby, you rejoin society at some point and everyone oohs and ahhs over your sweet little baby. It was so bizarre to come to church and know that I have a sweet little baby, but no one can see him and we can't be with him. Sometimes I feel like I'm pretending. Like Isaac doesn't even exist--It's so surreal at times.

Before all this, I often wondered how it would feel to have two children--baffled at the idea that I could possibly love another child as much as Jonah. It's amazing how immediately your heart makes room for another person. How amazing that my heart could stretch so big for a person so very small. We feel empty and incomplete without him. We're happiest when we bring Jonah to the hospital so we can feel like a whole family.

Today was particluarly tough. I wanted so badly to be able to bring Isaac home--mostly to hold him. To validate that he is in fact ours and that I am indeed a mother of two little boys. I think one of the nurses sensed my turmoil and asked me if I wanted a "pick me up" while I was sitting there essentially mesmorized with Isaac's every move. I'm sure I looked like a crazy person with my face up against his isolette. (Or like a mom with a baby in the NICU :)

She said that they were planning on taking him out of his isolette to weigh him, and since I was there, did I want to hold him? I'm sorry did you say hold him? I almost leapt out of my skin.

It was only for a moment, and he still had his breathing tube attached, but tonight I was able to hold my son for the first time. I held my son. I don't think I have ever needed anything so badly in my life as I needed to hold Isaac today and be his Mama--if even for a brief ten seconds. Very little will ever come close to matching those precious ten seconds for me. Oh the sweet, slow vibrant moments of life. I happened to forget my camera (D'oh!) but there is no conceivable way I will ever forget that moment.

"The LORD is good to all: and his tender mercies are over all his works." Psalms 145:9

I have experienced many tender mercies from the Lord in my life--but none so sweet and so needed as this. I needed, and He provided. I know He won't take away this trial, but He can make it bearable. Today He did.

"If you're going through hell, keep going." Winston Churchill

Wow. What a tough week. Isaac has really been fighting his pneumonia this week, but it's really taken a serious toll on his already weakened lungs. He's been up and down and up and down all week. That of course means that we've been up and down as well.

Thursday was the worst day. We spent most of the day with him--not that we could do much, but we just felt like we needed to be with him.

We're getting pretty comfortable with the NICU lingo and with their routines and procedures in caring for Isaac. We know that for the most part everything they do for him is necessary.

Even though intellectually, I know they need to keep moving him, poking him, sticking him with IV's, giving him meds, etc. sometimes it just makes me crazy. Thursday was one of those days. He was clearly so distressed and wanted to be left alone, but they kept having to adjust things and draw blood to check how he was doing.

I just wanted so badly to lay over his isolette and scream at everyone to leave him the hell alone! I know they need to do those things, but the Mama Bear in me just wants to protect him from all of it. We could tell how distressed he was. It was really tough to just have to sit and watch. It's hard to be away from him, but sometimes it's even harder to be there and have to watch the struggle knowing there isn't a single thing we can do about it.

I've thought several times during this whole ordeal, that as people, we are all at one time or another very well aquainted with sorrow, with pain, grief. It is part of the human experience and I am not so special or unique that I should be immune from it. It is so hard when you're going through it, but I really believe it does no good to wonder, "Why Me?" Why any of us? It helps me to remember that everyone has struggles, we all have "our time" of sorrow. There have definitely been days though when it just feels like too much. Some days when I just don't know how I will get through the day and maintain any semblance of sanity.

During one of "those" days this week while driving in to the hospital, I happened to glance over and see the "beds" of two homeless persons in an enclave outside the Salvation Army. Bunches of blankets and lots of empty coffee cups laying around. It was a poignant reminder that things could always always be worse.

Our family's current trial, while seemingly insurmountable to us at times, is truly nothing compared to so many other's. We have so many things to be grateful for. So very many things. There will be a time when this is past. When the brightness and fierceness of this experience will have faded and we will be able to enjoy our complete family without so much acute pain and sorrow. We will be able to move forward and heal.

Knowing that there will be an end to this, a light, even if very far away, does make it a little easier on those tough days. It helps me to be able to focus on what we have instead of what we're missing. Pulling in a little perspective has gotten me through the two toughest days so far (that and a LOT of prayer--okay and a lot of crying and chocolate too).

Dad's turn

Ok, it's dad's turn to give Jenn a break. First, the medical update: his chest x-ray this morning looked better as did his CBC. Both showed that his body is fighting the pneumonia and he is doing better. At the same time, his blood pressure was low so they gave him some dopamine and lowered the ventilator settings. They'll take a closer look at his liver today since it looked a little big on the x-ray the other day- "a simple blood test" (sounds like an alavert commercial) and an ultrasound. Then, they'll try weaning him off the ventilator more aggressively today. They are concerned about BPD- bronchopulmonary dysplasia or something or other, and the long term effect the ventilator will have on his lung development.

More personally, today when I went to look at him, he was struggling to open his eyes, and I just felt that he was having a "why me, God?" moment, and that he really needed to rely on our strength, love, support and prayers. I realize it may sound silly, and it's total conjecture, but I don't really think of him as just being this little baby. I don't know when the spirit enters the body and I don't know how much spiritual awareness babies have (since they outwardly don't seem to have any awareness at all of anything except behavioral responses to stimuli). But, I talk to Isaac and I pray for Isaac as if he is a spirit within his body, yet still retaining his spiritual awareness and thus capable of making decisions and being aware. Two weeks ago I blessed him that he would be able to choose whether to live or die- that he could live if he wanted it enough. I haven't thought much about it in the past two weeks, but today I felt like he was questioning whether it was all worth it. I encouraged him and told him that it was totally worth it. He has a mom and a dad who will love him, play with him and teach him. He has an awesome big brother, and we all want him to come into our family. Afterwards, I felt that he had been strengthened- he calmed down, closed his eyes and peacefully rested for the next hour or so while I "held" his hand (his fingers were grasping my finger, but can't even get halfway around!). I'm so proud of him, how he's fighting for his life, and for giving the nurses hell when they bug him!

He's our little champ who has already taught us so much, and I'm confident that he will finally begin moving forward after having almost two weeks of constant backsliding. Actually, after encouraging him, I told him it's time to stop messing around and to show these nurses what some old-fashioned Finnish sisu will do! Go, Isaac, go!

Speaking of "Isaac", the way we picked the name was thusly: We couldn't decide on a name and "Simon" had fizzled, so two hours before we had to submit the birth certificate information on day 10, we prayed for our son. We said we'd pray for him by name and we'll see what happens. We prayed "Bless our little son Jacob." Nothing. "Bless our little son Simon." Nothing. "Bless our little son Isaac." We both knew instantly that this was our little Isaac. For us, it was not only a name, but a confirmation and lifelong reminder of the goodness of God and of what we already knew- that like Abraham's Isaac, our little Isaac would be spared.

I want to be clear here, however. I've thought often of the strange position I find myself in- I KNEW from the day Jenn's water broke that God would spare my son. There's absolutely no human reason why God should spare my son yet take another (which has happened during our time in the NICU). God's goodness, nor my belief in it, does not depend on human outcomes or human perceptions of outcomes. That first day of utter shock and having your guts ripped out ended in complete and utter submission to God- or perhaps more accurately, the realization and acceptance of my complete and utter dependance on God. For a brief moment in my life, I accepted that God's love for me requires Him to provide me what is in my best interests spiritually and eternally regardless of my attitude towards it. Instead of wanting to change what God was going to do anyway, I embraced His will and all that it would mean- unknowns and all. Only after that was it revealed to me that our son would be spared. Isaac is truly a gift in every sense, but the goodness of God was revealed not through the sparing of Isaac, but through the circumstances by which he came to us.

"It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks."
Helen Keller

Today was relatively stable. Yesterday was rough. They discovered an infection in Isaac's lungs--pneumonia--that is potentially pretty serious. They caught it right away which is really great and immediately started antibiotics. They just have to watch and see what happens. They're concerned that the infection will make it into his bloodstream--but so far his bloodwork is clean. More waiting.

We knew it would be like this (up and down and up and down), but I'm surprised at how difficult it is when we go into the hospital and they have bad news. It's like a punch in the gut. I know it's not going to be a smooth ride, but it's amazing how comfortable I get when he has a couple of good days. Intellectually I know it most likely won't last, but emotionally it's really easy to believe that he will remain stable forever.

I went and visited him by myself tonight. I held onto his little hand for a while and watched him sleep. It was a nice bonding moment for me--it's amazing how healing it can be to simply touch your child. I don't get to do it nearly enough, so I cherish it so much.

"Strength does not come from physical capacity. It comes from an indomitable will."
Mahatma Gandhi

Another boring day for the most part. Isaac is having digestion issues. He's not digesting the milk they're giving him properly. They're going to give him an enema to "get things moving". Poor guy. So much in his short little life. Hopefully it will help.

He's still up and down on the ventilator. It's going to take him a while I think to be ready to come off the stronger breathing support. Overall though, he continues to do well. His issues are all pretty standard and the doctors and nurses are used to dealing with them.

The haze that has surrounded this experience is beginning to lift and Jaska and I are starting to regain our wits (or at least trying to:). We are trying to come up with a game plan for long term. This journey is going to last months and possibly beyond and we need to get our feet under us to tackle what is coming. Our friends and family have gone far and beyond in our behalf (thank you so much all of you--your help has meant everything to us these first few weeks as we've tried to process this. We could not have done this without your help.) but we can't rely on them forever. At least not to the extent we have been.

Jaska and I have talked about how some trials you just try to survive--you just "get through it" and breathe a sigh of relief when it is over. Other trials need to get through to you. It's not enough to survive--you have to thrive--in spite of it. This is definitely one of the latter.

We'll sit there and look at each other and say, "How? We are not strong enough. We are not courageous or patient enough. How can we possibly do this?" And then we realize that that is irrelevant. We become what we are not because we must. We become those things because there is nothing else to do--because God requires it, because our family requires it, because it isn't enough to just survive--that is not why we have trials--and because deep down inside we know we in fact can do this. We are simply terrified of what it will do to us. We have been and will be broken down in every conceivable way. Every fault and weakness is made bare and we cannot hide from it. It is not comfortable, let me assure you. I feel like a rock in a tumbler. I can only hope that at the end of this road I am smooth and polished. I realize that much of that outcome is entirely up to me.

"Nevertheless, I know in whom I have trusted." 2 Nephi 4:19

We know this is God's will for us--I trust what he has in store for me and my family. That doesn't mean I'm not scared of it though :)

I have heard people say often that God does not put upon us more than we can bear. I thought for a time this meant I would be spared the scariest and most difficult of circumstances because I was sure I could not bear it. Then I heard a simple phrase added to this refrain by Richard G. Scott of the quorum of the twelve apostles. I can't find the exact quote, but he essentially said that God will not put upon us more than we can bear, with His help. I feel God's help. I feel it every day. With that help, I can do anything. "And now, if the Lord has such great power, and has wrought so many miracles among the children of men, how is it that he cannot instruct me?" Nephi 17:51.

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do. "
Eleanor Roosevelt

">Thankfully, yesterday and today have been "boring" days. Isaac seems to be responding well to the PDA surgery. His lungs are doing better and they have downgraded him to a different ventilator. They continue to wean him off the ventilator and he has been doing really well with it for the most part.

They began "feeding" him today. They are called "gut priming feeds" because all they are really for is to stimulate his digestive system into working. They're giving him about a tsp of breast milk for 5 days to see how he will tolerate it.

They moved Isaac to his stomach and I could see the stitched incision from his surgery. It was longer than I thought--an inch and a half or maybe even a little longer. It was weird to watch him sleep so peacefully with this scar on his back. He looked so peaceful curled up in a ball on his tummy, just like a full term newborn (only a LOT smaller :) I almost forgot for a minute while I watched him that he was in the NICU.

Jaska had a nice candid chat with one of Isaac's doctors yesterday, Dr. Wolkoff. He said that they are definitely shifting their focus now for Isaac from survivability to long term health. Even though there are still definite risks possible, they don't seem very concerned as to whether or not he can survive at this point. His odds of survivability and even good health are fairly high, considering. When he was born the doctor told us his odds of survival were only 20%. His odds of having major complications were 80%. Now his odds of survival are upwards of 80%. Not a bad jump :) We do have a very long road ahead still and many hurdles to overcome before we can stop holding our breath, but it was very reassuring to hear the doctor say what our hearts are telling us is true--our little guy is going to make it. :) Go Isaac Go.

"Nothing is so strong as gentleness. Nothing is so gentle as real strength."
Frances de Sales

We (finally) gave our son a name. :) We had Simon picked out, but once we saw him we both just knew he was not a Simon. So we've agonized over it the last week or so until it finally clicked. Of course. His name is Isaac. Isaac Toivo Miettinen.

In every way this child is a gift to us--we felt for sure he would be taken away, and then he was spared, and spared again, and again. The biblical story of Abraham being asked to sacrifice his son Isaac, and then having him spared has become very significant and symbolic to us. We are glad to be able to remember this gift every time we say Isaac's name.

Toivo is a Finnish name meaning "hope".

Isaac had his "procedure" late yesterday afternoon to close the open PDA valve near his heart. He did very well during the surgery and the doctors and nurses were pleased with the outcome. While the surgery needed to be done regardless, there is still no guarantee that it will improve his respiratory situation. It will take him a few days to recover and then it's a continued waiting game to see how he responds and recovers. More wait. To shamlessly quote Princess Pride, "I hate wait." :)

So small, but already full of such opinions :)

"Walk in cheerful uncertainty." Neal Maxwell

The above quote has kind of turned in to our family mantra during the last couple of years. It has become even more so now. It's not an easy thing to do, but being able to be cheerful (at least at times) through trials and the unknown, means letting go and trusting that it will be okay. It doesn't mean that we aren't doing things to try and make it okay, but there is an enormous weight lifted when you don't worry about it anymore.

Our little guy has had a rough couple of days. His PDA valve didn't close and is continuing to cause further problems with his ventilation and oxygen levels. They are anxious to operate and are waiting for word from the surgeon. We are waiting for the call that they are ready to proceed and then we'll be heading back to the hospital.

It's a common enough procedure we've been told, but they still have to cut him open to access the valve. We thought that they would be able to make a small incision and go in with an endoscope, but alas, our little guy is just too small for that.

The surgeon and his team come to the NICU where they have a mini OR and perform the "procedure" there. They keep calling it a procedure--but it's surgery. They make an incision under his arm and find the valve near his heart and clamp it closed. The clamp will stay there for the rest of his life. (I'm sure he'll find some way to use that to impress girls later on :)

The benefits far outweigh the risks, and despite the fact that just about every baby who goes through this does just fine, I am beside myself with anxiety.

It is bad enough that he's hooked up to wires and tubes and machines and we can't really hold him. As it is, I just want to whisk him away and hold him and protect him from all of this--then to tell me that they are going to perform surgery on my baby? Are you kidding? If there was ever a time in my life when the Mom in me totally takes over--it is now. I long to take his place.

He's shown what a fighter he is though and we know he can handle it. Adversity truly makes us stronger and he needs some struggles to overcome just like we do. It sure hurts to watch though. I'm not sure which is harder---to watch him struggle and not be able to stop it, or to watch him struggle and know that even if I could stop it--I shouldn't--that it's for his good. I'm beginning to get a taste of how Heavenly Father feels about us and our struggles. Wow. I wouldn't want His job for anything in this world! :)

We'll keep you posted on how the "procedure" goes.

"All human wisdom is summed up in two words: wait and hope."
--Alexandre Dumas

Happy Birthday little one. Today our bb is a week old. An achievement that I'm sure would have gone unnoticed if he was born full term. A week for him marks a significantly lower risk for the major complications of being born this early. The most potentially damaging is an Intraventricular Hemorrhage (IVH) or bleeding in the brain. A severe IVH can lead to advanced mental and physical disabilities. He had an ultrasound of his brain today and passed with flying colors--not the slightest sign of bleeding.

He had what's called a picc-line put into his arm today. It's a catheter that they put in through a vein in his arm and up to the bigger veins near his heart. It enables the medical staff to give him higher concentrations of meds and fluids and avoids the necessity of constantly poking him with needles. They said he was pretty annoyed during the procedure, but settled right down again once it was done.

Tomorrow they are going to see how he does coming off the ventilator. They'll insert what's called a CPAP into his nose (if they can find tubes small enough--he has a very tiny nose) which forces just enough air to keep his lungs open in between breaths so he doesn't have to work quite as hard to breathe. We'll see how it goes. Even if he can only last a few minutes, it will be nice to actually see his face under that huge breathing tube. :)

He's still really stable though. As one of his doctors said today, "A boring day is a really good day." We LOVE boring days.

"Hoping does not mean doing nothing. It is not fatalistic resignation. It means going about our assigned tasks, confident that God will provide the meaning and the conclusion. It is not compelled to work away at keeping up appearances with a bogus spirituality. It is the opposite of desperate and panicky manipulations, of scurrying and worrying. And hoping is not dreaming. It is not spinning an illusion or fantasy to protect us from our boredom or our pain. It means a confident, alert expectation that God will do what he said he will do. It is imagination put in the harness of faith. It is a willingness to let God do it in his way and in his time. It is the opposite of making plans that we demand that God put into effect, telling him both how and when to do it."
-- Eugene Peterson.

Today was another stable day--every one of these is a miracle unto itself. BB continues to do well. He has an open vessel near the heart called a PDA that needs to be closed. It's common with preemies because they were born while still needing it open in the womb. With full term babies, it closes on it's own within a few days. Preemies need some more help. They tried a round of medication that didn't work, so they are trying another round. If the second attempt isn't successful, they may have to close it surgically. Apparently the surgery isn't too risky, but the thought of him being operated on is terrifying.

BB finally opened his eyes (his eyes have been fused shut). He was trying so hard to get them open and look around at the world--even though he can't see anything yet. :)

I got to actually "hold" him today. The nurse was changing his bedding and I was able to lift him up while she changed the blanket beneath him. He fit nicely across my hands. I was surprised at both how delicate he is and how strong he is. I've been able to change his diaper, and help with a few other things, and each time I'm surprised to discover how solid he is. He is fragile to be sure, but it was a relief to discover that I'm not going to break him. :)

Jaska was able to give him a father's blessing. I know it means a lot to Jaska to be able to. We are so grateful for the priesthood and the power of prayer.

Jaska and I were both pretty overwhelmed today. All the medical staff told us it would be a rollercoaster journey for our little man. Nobody told us it would be such a rollercoaster for us as well. He has been pretty steady, we've been on the rollercoaster.

Even though he continues to do well, it's still pretty overwhelming at times. We're doing pretty well--trying to maintain perspective and our senses of humor and all that and for the most part we're doing okay. It gets easier every day as this begins to feel more "normal" (what a contradiction!) But then out of the blue, suddenly one or both of us will just hit a wall. Jaska hit one last night, and I hit one today. It's almost as if our brains are finally beginning to make sense of what is happening and they totally rebel and shut down. Not that I blame them. :)

January 6, 2007

One day old

"Learning to live in the present moment is part of the path of joy."
---Sarah Ban Breathinach

Today was a nice and stable day. Baby boy (bb) did beautifully. He was really steady all day. They've begun weaning him off the ventilator. It's a process that takes a few days, but the fact that he tolerates each adjustment is a good sign. We spoke to a doctor today and his prognosis was good. He was cautiously optimistic. He cautioned us that things could still take a turn for the worse at any time, but that our bb has been really strong and has done remarkably well.

He continues to defy the odds and we are remarkably proud of him. I can't get over what an amazing little miracle he is. We've both fallen madly in love with him and love watching him grow and progress in his little life each day. Considering all that could have gone wrong at this point and hasn't--he is doing so incredibly well. There is still such a long and difficult road ahead, but every day that passes without a major setback, increases his odds for complete health.

Our hearts are so full with love and gratitude for our blessings and to be able to get to know and love this little guy. We are truly overcome. Every moment a miracle.


Finally some pictures of week one:

bb and all his NICU accutraments :) The tube in his mouth is for breathing, the glasses to protect his eyes from all the phototherapy lights, the club on his hand to keep him from moving his IV.

Just chillin' ( I think he has kermit the frog legs)

A peek without his glasses. We're sort of waiting for his eyes to open before we give him a name--we just want to be able to see him before we decide what his name will be.


Big brother Jonah on his first visit. We think he is beginning to understand a little of what is happening. He'll tell us that the baby is at the hospital and that he's sick and the doctors are going to "fix" him and give him medicines.

A "hug" from mama

January 5, 2007

Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.
-- Lin Yutang.


I can't believe it's only been two days since I left the hospital. It feels like a hundred years. We've been trying to pull ourselves together and get some sort of routine down. We go to the the NICU in the morning and leave Jonah with friends, then come home for the afternoon to rest, and give Jonah a nap, and then one or all of us returns in the evening.

Our baby boy (bb) is still stable, but he's been having some issues. They are most concerned with his lungs and with the chance of a hemmorrage in his brain. An ultrasound of his brain showed no signs of a hemmorrage which is really good. They are going to repeat an exam on Monday to see if that stays the same.

His lungs are so underdeveloped, that all kinds of problems can arise. This morning they did an x-ray and found some black spots in his left lung. They are worried that they will lead to a hole in his lung which is especially dangerous for him because treatment could do more harm since his lungs are so fragile. So they did an evaluation, adjusted his oxygen levels, pulled his breathing tube out of his lungs a little bit and waited to see if it would help. A later x-ray showed improvement which was a relief. We were there for all of it--and it was a bit nerve-wracking to see everyone working on him and consulting over what to do. But--it paid off and he is definitely doing better.

January 3, 2007

"Everything that is done in the world is done by hope."
Martin Luther King Jr.

We've spent some time with our little boy--together and independently. It is a miracle just to look at him. I want so badly just to hold him. As of now, the doctors say he is stable. They have many, many concerns of course--but it's now just a matter of seeing how he does and how he responds to the outside world.

It's nice to just sit by him--there isn't anything else I can do really. I can't touch him, can't hold him or care for him--I can just look at him. Upon coming back to my room last night, I just felt so overwhelmed and sad. I still have faith and confidence that he will be okay--but even with that peace, this is incredibly tough.

While I was on bedrest, I was thinking that once he is born, I'll spend a couple of hours with him in the morning and then the rest of the day with Jonah. I want to give Jonah a sense of normalcy and stability as much as possible, while still seeing the baby. Now that I am facing that option, it seems ridiculous. How can two hours be enough? All day is not enough--but Jonah needs us badly. He is all over the place right now and I can tell he really needs the stability of having us around. I don't know how we are going to do this.

I'm being discharged today and I am quite emotional about it. I want to go home so badly, but I am heartstricken at the idea of leaving our baby in the hospital. I broke down in the NICU and the doctor came over to reassure me.

I want so badly to be able to care for him and instead I am forced to the spectator role. All these nurses and doctors care for my baby all day and I have to go home. It's ripping my guts out.

He continues to be stable for the most part. He has had several setbacks in the last couple days, but none of them very serious. The nurses are constantly adjusting different things, trying to keep him stable. If something is too high or too low, they have to do something to counteract it--more/less medication, a blood transfusion, adjusting his tubes and IV's. The adjusting has been pretty steady, but they always manage to get him to stabilize.

January 2, 2007

Well, I am still here----but so is the baby. Yesterday afternoon I started having contractions. I tried to relax in hope they would go away. They kept on coming though and it didn't take long to realize they weren't going to stop.

Jaska and I were remarkably calm--but I'm sure a part of that was shock. Once we realized there was no stopping it we just kind of looked at each other and said, "Okay--let's do this." We felt so blessed to even have made it through the week. We knew our baby now had a chance and we again turned it over to God. There was simply nothing else to do. We couldn't stop it or change it or decide how healthy or unhealthy our baby would be when he arrived--everything was in God's hands.

Our second little boy arrived at 7:35 pm on New Years Day. Again, another poignant date. He weighed 1 lb. 9 oz. and was born at 23 weeks and 3 days. A team of NICU doctors and nurses were right there in the delivery room and whisked him right away. Considering how small he was, the labor was a difficult one. The lack of fluid combined with his position changing at the last minute made things a lot more painful than expected. I was trying to stay lucid, but it was a losing battle.

We got to go and see him a little while later in the NICU. He is so tiny and fragile. He is perfectly formed, just tiny. He has a lot of bruising from the delivery. He shifted at the last minute and ended up coming out bent in half. His neck, chest and arm are quite bruised. That was the scariest part for me--seeing him banged up like that.

I felt totally numb upon seeing him for the first time. I was trying to feel something, but I think by that point my body and mind just shut down. It was very frustrating. I felt so dead.

This morning my head was much clearer and I was able to feel the joy I was missing last night at having a new little boy.

He doesn't have a name yet, but that's mostly because we wanted to see him first (and because we've given virtually no thought to names). We'll pick a name for him soon.

January 1, 2007

I had a particularly bad night last night. I was so anxious and couldn't calm down. I've been doing a LOT of meditation and breathing excercises to calm me down every time I get anxious or worried, but last night it didn't work. I think I am just getting too exhausted--I can't get any rest here. I leaked a lot more than usual which greatly contributed to my anxiety levels--During the day I can keep things in perspective for the most part. In the middle of the night, I am not so rational.

This morning Jaska gave me a perfectly beautiful blessing. It was one I will cherish for the rest of my life. I am so grateful for the gospel and the power of the priesthood.

I have felt so accutely the Lord's hand in guiding me through this. I feel the necessity of this trial and I feel His hand in this. I do not feel alone--but I feel so completely overwhelmed and at times scared/terrified.

I am overcome with joy that our little guy is still okay--that God has chosen to help us to this point.

December 31, 2006

We're hanging in there. My fluid levels were down this morning to a 6-7, but I've been leaking a lot since then. I'm trying not to freak out about it. I was better able to just put this burden at the Lord's feet today and stop worrying. It was nice to have the load lifted for a while.

Jaska's faith is rock solid. He has total faith that our boy will be okay. I so admire him for that. I'm not as steady. Every time I leak some more, my heart sinks and I start to freak out a bit. He has been such a strength though--I know this is just as hard if not harder on him.

December 29, 2006

I am still here. We are so happy to have made it to today. It's been a rough day though--we're trying to work through it. Today was particularly hard because Jonah has a really bad cold, and so Jaska didn't bring him in at all. Diana and Sara came to visit which was really nice and my friend Suzanne brought in dvd's and books to keep me distracted--so I wasn't lonely per say--but I was lonely for my little family and emotionally drained.

Jaska had a tough day as well. He has been so incredible but it is unbelievably hard to be apart like this. He was able to stay the night most of the week, but decided to send my family home and be with Jonah tonight. We are trying to lean on each other and be a support to one another, but there is only so much we can do with the situation we're in. We miss each other so much.

December 28, 2006

We're still hopeful. Every day is another day closer to 23 weeks and beyond. I tried not to think about it too much today. Tried to keep myself distracted. It helped for most of the day, but by the end I lost it a little bit. I just suddenly felt the weight of this and how hard it is. I am still hopeful--no despair or anything--I just felt so completely overwhelmed. I cried for a little while, and Jaska and I talked and prayed for a while.

Jaska has been so amazing. He has basically had to take over both of our roles. He's trying to juggle between being with me in the hospital, taking care of Jonah (my mom and Diana have been here all week helping which has been a lifeline--but Jonah still needs us), finishing up a project at work, and taking care of things at home. I know it's taking a toll on him, but he is holding up remarkably well.

They checked my fluids again today and I am up to an 8 from a 2 so that's promising. They are hoping that the leaking stays to a minimum and my fluid keeps going up.

December 27, 2006

We made it to the 48 hour milestone--which is a relief. It is nice to make it over the first hurdle, but it's made the necessity of making it to all the others that much more acute.

God continues to be with us. We have grown so much in such a short length of time. We are so grateful for such an amazing experience. The poignancy of the timing of all this has not escaped us. What an experience it has been to pray for the life of our son, at the very time we celebrate the Savior's birth.

December 26, 2007

We pulled ourselves together today and said many prayers. Every hour that went by was a delay until I went into labor. We need to make it 4 more days in order to get to the 23 week mark so our baby will at least have a chance.

I'm facing the possibility of being in this hospital bed for a really long time. I'm totally okay with that if it means our baby will be okay--but I am at a loss as to how I will do it without losing my mind. Every time I move I'm terrified that more fluid will leak out. If it were possible, I would lay on my back with my feet in the air to try to keep it in there.

We are trying to figure out what in the world to do with Jonah and how he will possibly understand what is going on. Our friends, family and ward have been more than amazing. It has been really moving to see people rally around us. We have felt so much love and support.

A specialist came in and did an ultrasound tonight. My fluid levels around the baby are extremely low. He explained that even if the baby stayed in there, without fluid, his lungs would not develop and he will not survive.

He said that fluid can replenish itself, and it was a waiting game as to whether the amount would increase. Meanwhile, I continue to leak more fluid and have been pretty much frantic. I was trying desperately to relax and calm myself so I didn't stress myself into labor. Jaska gave me a couple of beautiful, calming blessings and I was finally able to relax. I realized that I've been basing whether or not I am stressed on fluid levels and doctors estimations--instead of my faith that God can do all things--despite the odds--despite my leaking--despite the doctors estimations.

I have come to terms with the fact that I may lose my baby. What I have not come to terms with is the fact that he is still alive and moving and that labor will mark the moment of his death. To know that one minute he would be alive and fine and the next he would be dead and that by going into labor, it would be killing my son--is too much for me to handle.

We have felt the calm assurance today of the spirit that things will be okay. We are clinging to any hope we have that all will be well. We are praying for the strength to meet this challenge with grace and with faith. God's presence and guidance are continually with us.

December 25, 2006

I was resting in the early afternoon after a wonderful Christmas morning. I felt a trickle of fluid that felt a little strange. I stood up to go to the bathroom and felt a gush. Immediately my heart sank to the floor. We grabbed the doctor's number, jumped in the car (I don't think Jonah even had shoes on) and were off to the hospital. Our friends the Vargas's live just around the corner, so we dropped Jonah off on the way. Jaska literally threw Jonah into Joelle's arms. It wasn't until later that evening that I realized I hadn't even said goodbye to him.

By the time we arrived at the emergency room there was no doubt that my water had ruptured. We weren't even sure how far along we were. I thought 23-24 weeks, but when the doctor came to examine me, he told us I was in fact only 22 weeks along.

We were reeling, not even sure what it all meant. I knew for sure that breaking your water is NOT good this early--but beyond that we knew nothing. We were first seen by a resident and a nurse and their repeated refrains of "I'm so sorry" told us volumes. They kept telling us that the baby wasn't viable at 22 weeks and that they could do nothing to stop labor.

We were in shock, devastated, sobbing and the most vulnerable we have ever been in our entire lives. We said a prayer together and both strongly felt that we needed to pray for God's will to be done. So we did--and felt that things were truly in God's hands. We faced the immense likelihood that our child would die. We made peace with that likelihood and accepted God's will for us and our family. We felt so strongly the necessity of this--that we needed to turn it over to God. So in many ways, we let go. But we didn't let go of hope.

A specialist came in later and spoke with us. He believed that there was a chance for our baby. Not a great chance, but a chance nonetheless. This is what he told us:

When pregnant women rupture their membranes early, it is usually due to an infection or an incompitent cervix. Most women deliver within 48 hours, some last longer, and some last a LOT longer. Due to the likelihood of infection as the cause, and the increased risk of further infection due to the ruptured membranes, they do not stop labor if it starts. The risk of serious infection to the mother is too great.

He explained that there was a chance that my body would delay going into labor. He also explained that at 22 weeks, the baby wasn't viable and so if he was delivered, they wouldn't resuccitate due to his inability to survive.

A doctor from the NICU came and explained to us that at 22 weeks they could and would do nothing to save our child. At 23 weeks, the baby would be on the very edge of viability and while the risks of death or serious disability are extremely high, they would try to save our child if we wished it. He cautioned us however, that to pursue this course is often futile. At 24-25 weeks and beyond, the chance for survival is high enough that they pursue it regardless.

They set me up in a room on the women's health floor and told me that whether it was that day, or 10 weeks later, I would be there until the baby came.

We want to keep a record of this experience, as well as share our journey with you. We'll be posting updates on our little one's progess along with updates of his and our journey through this amazing experience.

He doesn't have a name yet, but that is only because he is so special to us that we want to make sure his name fits just right. We're giving it a lot of thought and we'll let you know as soon as we choose one.