Isaac is going strong on his CPAP. He has to work a lot harder than he did on the ventilator, so he's burning a lot more calories. He lost 70 grams on Sunday and was down to 2 lbs 14 oz. They are also giving him a diuretic to help with the fluid in his lungs which makes him pee a LOT and may have contributed to his weight loss. Tonight he was back up to 3 lbs 1 oz. though so hopefully he'll at least be able to maintain his weight.

He is still being fed 3.5 oz, every three hours. After tomorrow, they will begin increasing the amount. He has been digesting the milk he's getting very well though which is a good sign that he will do well with more.

I brought Jonah with me to the hospital this morning which I don't normally do--Jonah did such a good job. He loves to get ice from the ice machine and sit in a chair at Isaac's bedside and eat his ice. He'll say hi to baby Isaac and look at the babies--sometimes he'll color or read a book or flirt with the nurses. Today the nurse brought a TV over so we watched a show, colored, and played with Jonah's sticker book right there next to Isaac. It was actually pretty fun. It was so nice to be with both my boys at the same time and not be brokenhearted at leaving one of them behind.

The plan was to keep Jonah happy while I looked in on Isaac and maybe hold him a little inside the isolette ("hugging" him with my hand, or holding his hand, etc. ) But----Isaac was super duper sensitive today. I'm not sure if it's because he's more tired from breathing or hates the CPAP or what--but I couldn't even open his isolette without him freaking out and desating.

So--Isaac stayed hidden in his little bed and Jonah and I basically played at the hospital for a couple hours. It was a little frustrating that I could hardly look at Isaac without him desating, but it was nice to be there nonetheless.

I'm starting to look ahead a little bit to when Isaac comes home. It's impossible to know when that will be, but since most babies go home by their due date, we have a good chance of bringing him home in April. That would mean we are roughly half way there. Crazy. I can't believe we have been doing this for 8 weeks. I can't believe we have 8 or more to go. I have to say that it's easier in many ways on this side of 8 weeks now that Isaac is starting to grow and become more stable. It's inconvenient and stressful to be sure to go to the NICU every day--but it's infinitely easier when I'm not terrified of getting some terrible news, and he's finally making some visible progress.

We'll just keep plugging along. We're happy--we're astonishingly exhausted--punched in the gut and never quite recovered type of exhausted--but we're happy. We have two wonderful little boys. Isaac is doing well. We have wonderful friends and family who are taking excellent care of us, and a God who is showing us daily the miracle of His love. Life is good. It's a crazy, sleep deprived, overwhelming blur--but it's good. :)

Our first family picture. Unfortunately, none of us know how to open our eyes. :)

Isaac is still on the CPAP--thank goodness. Despite how excited I am about that, it is so incredibly and unexpectedly annoying. He constantly looks so uncomfortable and is always trying (and often succeeding) to pull it out. He's got these prongs jammed up his nose--not pleasant I'm sure.




Trying to get set up to hold Isaac. I had to hold the oxygen up to his face until we could get the CPAP set up.

Finally--a picture without tubes all over his face.

Whenever I see pictures of myself, I think, "Man, I look tired." Go figure.

"If it takes my whole life--I won't break I won't bend.
It'll all be worth it--worth it in the end.
I can only tell you what I know,
That I need you in my life.
When the stars have all gone out
you'll still be burning so bright."
---Sarah McLachlan

Isaac is doing pretty well. Unfortunately, it's a really big deal to take him out of his isolette while he's on CPAP. It's so much more difficult and inconvenient (for the nurses and Isaac) to do skin to skin care. I'm totally bummed out because I love it so much. Today was the first time he was stable enough on the CPAP for me to hold him and it really stressed him out instead of helping. So sad. He started freaking out and we had to put him back in. It made me so sad to know that holding him made it worse instead of better.

Hopefully it will get better as he's more stable on the CPAP. We'll see. Everything else is about the same however. He's still a little over 3 lbs. His head is growing rather nicely too which the Dr said is a really good sign of proper brain growth. They are still giving him 3mls of milk every 3 hours for the next few days--then they will try to bump him up to 20 mls. He's still got inflammation in his lungs from the CMV, but the CMV seems to have run it's course for the most part. We won't know for a long time if there was any lasting damage.

Isaac continues to be a little freshy--giving the nurses and us a run for our money. He seems to have inherited his Mama's tendency for strong opinions. :) Uh Oh.

"What we anticipate seldom occurs. What we least expect generally happens." Benjamin Disraeli


Surprise! When I arrived at the hospital this morning, Isaac's nurse said they were going to put him on CPAP within the hour. I was dumbfounded. Just yesterday the doctor was saying he had stagnated a bit in his progress on the vent. Apparently from the time I finished holding him until this morning he had been doing so well with his breathing, they decided to go for it.

He had been doing awesome on the vent, then we got sick and I couldn't hold him for a week. He stagnated. I come back and hold him for one day and he's doing awesome again. Hmmm...maybe there is something to this skin to skin care.

CPAP stands for continuous positive airway pressure. On the CPAP, Isaac is breathing on his own, but the CPAP provides the pressure to keep his lungs open. The ventilator provided the breaths and the pressure. Since he's been doing so well breathing, they decided he didn't need that help any more.

YAY! I could not be happier. Yesterday I was so discouraged. Jonah has been having a really tough time and it's been running me down. I got to a really low point last night and for the first time thought that I really can't do this any more. I said a prayer and "leveled" a little bit with God. Usually when things get tough, I ask for strength to rise to the challenge and for His will to happen. This time, for the first time, I simply asked for what I needed. I told him that I just needed it to not be so hard for a little bit--that I needed either some major progress soon or some serious strength to tackle the coming days.

What do you know--I walk in this morning and they're putting him on CPAP! What a tender gift from a loving Heavenly Father. He seldom answers my prayers the way I want Him to, but wow is it nice when He does. I just felt like He was saying, "Here--here is something I can do for you to make it easier." Just like I would do for Jonah or for Isaac. I can't take away their struggles, but sometimes I can make it a little easier. I feel very loved.

I thought that switching to the CPAP would mean we could see more of Isaac's face. As you can see from the pictures that isn't so. :) Ah well. I was able to see him without any tubes for a little bit, but couldn't manuever in to take any pictures. Maybe we'll be able to see his face when we take him home. :)

There is a chance that they will have to put him back on the vent if he doesn't do well with his breathing. It's only been 9 hours, but so far so good. He really seems ready and I think he'll do great. Even if he needs to go back on the vent to take a break from breathing, it's a huge step for him to breathe so long on his own. I am so proud of him.

He broke the 3 lb mark, but lost a little bit. He's at 3 lbs 1 ounce today. What a chub!

(I love his contemplative looks)

"Trying to understand is like straining through muddy water. Be still and allow the mud to settle." Lao Tzu


I finally reappeared at the hospital today. When I peeked in at my boy, I was floored! He is positively chubby! At just shy of 3 lbs, he's actually starting to get some chub on his wee bones. He should hit the 3 lb. mark at his weigh in tonight. Shocking. I was starting to think he was going to stay so tiny. It freaks me out a little that he's actually getting bigger. I almost don't know what to do with him.

I couldn't hold in the tears as I looked at him this morning. I really hate crying in public, but I couldn't help it. I've missed him so much.

I'm the type of person who is really cool in a crisis--I can totally keep my head and just do what needs to be done. Afterwards however, once I know everything is okay, is when I totally fall apart. I was kind of in crisis mode this last week--trying to just get through it and do what needed to be done to get well again. Now that I am healthy and able to return to the hospital, I feel like sobbing all the time--with relief yes, and joy, but also with the sheer weight of everything. It doesn't hit me until after the fact most of the time how difficult things are.

I'm trying to brace myself for the emotional storm that I'm sure is coming once Isaac finally comes home.

Isaac is still doing awesome. I can't even think about what this week would have been like if he wasn't. He's still struggling with the vent and digestion, but is making progress with both. He is down to 20 breaths per minute on the vent, although his pressure settings are the same. He's digesting the formula they are giving him as well--just really slowly.

He had a blood transfusion today. He's had several, but today was the first time I saw how much blood was being put in. I was really surprised at how much it was. I don't know the amount, but it was a really big syringe.

I was getting nervous that he was going to forget me. Once I held him though, I knew he remembered his Mama. Ahhhhh...one of the best parts of my day.

It's amazing what I manage to take for granted. I'm sure if Isaac was born full term I would start to complain at some point about having to hold him all the time. Not so here--no way. Every minute I get to look at him or hold him is a blessed gift.

"Regardless of how much patience we have, we would prefer never to use any of it."
James T. Obrien

Another steady couple of days for Isaac. He's been doing so well with the vent changes, so they kept going. He's down to 24 breaths per minute from 35 a week ago. His pressure is still at 6. Yesterday is when they went down to 24 from 26, and he's been desating a lot since then so they're not sure if he'll continue to tolerate it. If not, they'll have to bump him back up a little. Hopefully it won't be too much of a setback.

They started feeding him again a couple of days ago. One cc (about a tsp) of breast milk every 4 hours--isn't that crazy? Such a small amount. They'll do that for 5 days and then increase it if he's doing well with it. He wasn't digesting it yesterday so they switched him to a pre-digested formula called Pregestimil. He's been digesting that just fine. When they told me that the formula would be easier for him to digest I was baffled. I had no idea that breast milk could potentially be difficult for a preemie to digest. Who knew? It's not permanent however--I'm still pumping (yay). Once his system is a little more mature, they'll try the breast milk again.

It's been three and a half weeks since Isaac has been on the Ganciclovir. More than half way there. Crazy. This last week his white blood count has been going back up, but is still within the normal range. The lowest it was was 4900 and now it's 7900. If it starts to spike again it could mean he has another infection.

This past Monday marked the 6 weeks since Isaac has been in the NICU. 6 weeks! I don't really think about how much time is passing--I usually just focus on one day or week at a time. But once I realized it was 6 weeks I thought--Wow, time's really moving. Then I realized we're not even to the half way point. The third way point is more like it. Then I got depressed. Back to taking it one day at a time. :)

We're no longer quite the walking dead in our house--I've been well enough to at least get out of bed today for more than an hour. We're still sick, but at least I'm daring to look at the light that seems to be appearing at the end of the tunnel. Jonah's pink eye seems to be getting a lot better. I have it in both eyes--but beyond being itchy and not being able to open my eyes in the morning--it's not that bad. I'm hoping it'll clear up by the time the weekend is over. We'll see. Since it's so contagious, I can't go anywhere near Isaac until it's totally gone.

I've been up and down all week emotionally. Last night I about freaked out. I had been feeling better all day and dared to start hoping that I would actually get better someday, when my throat started hurting again. I about lost it I was so mad. I thought--not again. not again, NOT AGAIN! I don't think I've ever come so close to a breakdown. I've joked about it a lot--but I really almost had one and realized that there is a really big difference between thinking you're at the end of your rope (or joking about it) and then actually arriving at the end of your rope. I don't think I'll ever joke about that again.

My throat felt fine again this morning though--so it appears as if I actually am getting better. I have never been so sick in my life. I would prefer never to be again. I found a website a couple of weeks ago where a man after becoming pretty sick from a cold/flu virus had spent hundreds of hours gathering info about the cold/flu virus, ways to treat and prevent it. It was extremely helpful, but I thought he was nuts for being so obsessed about it. Now I completely understand. I am willing to do whatever it takes never to be sick like this again.

"Genius is eternal patience."----Michelangelo

There's nothing that does a Mama's heart more good than news that her baby boy is doing well. Jaska was just at the hospital and talked to the nurse, nurse practitioner and Doctor Hagadorn.

They were all gushing (according to Jaska) over how well Isaac is doing. All of his "numbers" are perfect--his red and white blood cells, his blood gas, his x-rays, his coloring, his activity level. Everything looks really good. They are thinking about feeding him again as early as tonight, but it depends on whether or not he poops today.

They had to install a new Picc Line today because his other one (which has been in for about a month) was leaking. That went well also. They said he bounced right back after the procedure.

I call the NICU a lot when I can't go in and get updates, but it's never the same as being there (which is why I'm there every day). I'm so glad Jaska was able to go and talk with the medical staff. To say I'm happy and releaved that Isaac continues to do so well is just about the understatement of my life--but it's still true. :)

Jonah and I are still sick. I was thinking of dropping him off at a friends today since he was so much better so I could go to the doctor and perhaps (be still my heart) get some rest. But poor Jonah came staggering into our room this morning with one eye totally fused shut and swollen with pink eye. Lovely. Happy Valentines Day to us.

I called the local Urgent Care center, and they said they could only see me. Once they took one look at Jonah however (who had to come with me) they changed their minds. :) A couple of bigger pathetics has never been seen. They were really great about seeing both me and Jonah and saved me a trip to his pediatrition during the nasty blizzard/ice storm we had today. I was so grateful I almost started crying.

My strep test was negative, so I get to brave out the rest of this flu (yay) and try not to get pink eye. Jonah's eyes already look better after one shot of the eye drops so I hope that means they'll clear up soon.

Today was not my favorite day ever--but hearing such good news about Isaac just made it a LOT better.

"If for a while the harder you try, the harder it gets, take heart. So it has been with the best people who ever lived."---Jeffrey R. Holland


Isaac continues to make very slow, but very definite progress. He is down on his vent settings a little bit more. Everything else is about the same. He's slowly gaining weight. He had his first sponge bath today. It almost made me cry when his nurse told me because I wasn't able to be there. The reason? Fate has reared it's ugly head and we are once again, sick. Jonah threw up in church on Sunday, which was awesome. I'm sure everyone around us felt very uplifted as they watched us mop up Jonah's puke off the pew. Excellent.

Jonah was pretty sick for about 24 hours and then bounced back pretty quickly (yay!). I on the other hand got hit pretty hard. The last couple of times we've been sick, I've been ill enough that I had to stay home from the hospital, but I felt okay for the most part--just normal cold/flu type stuff. This time I got hit pretty hard. No throwing up thank goodness--but my body totally gave out. I've barely been able to get out of bed. So obviously--I have not been at the hospital the last couple of days.

I went on Sunday and held Isaac for a bit, but haven't been able to return. The worst part besides not being able to go to the hospital is knowing that I'm doing everything I can to prevent getting sick and there's just no stopping it. I was depleted before Isaac was born. I had bronchitis during my first trimester (turns out it was most likely CMV) and never really recovered fully. My immune system has been pretty much non-existent since.

Conventional wisdom for cold/flu is for the most part--good wisdom. But any time someone tells me any of the following however, it just makes me MAD. (I know they mean well, it just makes me feel even worse--like maybe there is something more I could do when I know there's not)

1) Get lots of rest. For any mother in any circumstance, (nevermind when your kid is puking) this is a big hillarious joke. Rest? Are you kidding? I haven't rested since Jonah was born. The getting up at ungodly hours of night to pump is certainly not helping either.

2) Drink lots of fluids. Well, I do in fact. Anyone who knows me knows I carry a water bottle with me everywhere I go. Unfortunately I spend my days at an incredibly dry hospital. No matter how much I drink, I am dehydrated (pumping doesn't help at all).

3) Lower your stress. Umm...yeah--I'll get right on that.

And 4) Stay away from sick people. Umm..I have a toddler. Enough said.

Forgive my being punchy, but I am soooooo done with this. I am eating well, taking vitamins, washing my hands a hundred times a day, etc. It's making me crazy. Something is going to have to give. Unfortunately, everything I am juggling is of equal importance. Nothing can "give" and that's the sad reality . Erghhhhhhh.

Regardless of my being so completely annoyed at being sick again, I am ecstatic that Isaac has been so stable and making little bits of progress. I love going in to see him every day and holding him. His personality is coming out more and more and it's getting easier to see the little boy in there behind all the wires and tubes and plastic.

I know I will look back on this time as so incredibly difficult, but more importantly, so incredibly worth it. It's worth anything I have and will have to go through. I can't promise that Isaac feels the same way, :) but knowing that my being sick is nothing compared to what he's going through makes it easier to not be so grumpy.

He that can have patience can have what he will. ----Benjamin Franklin

By the time he grows up, Isaac is going to be sick to death of his Mama's hugs because I am not gong to stop hugging him from the minute he gets out of his isolette. :) I just wanted to squeeze him today and smoosh kisses all over his face. The poor little guy doesn't know what he's in for when he comes home. :)

He had another really good day. He is very stable on the vent , he has been less jittery and less touchy to stimulation. He pooped on his own for the first time today (the other times have been after an enema) which really excited his nurse. Apparently that is a really good thing. No word yet though on if that means they will try to feed him again soon.

He's lost a little bit of fluid weight, but is still a little over 2 lbs. He has been a lot more alert and inquisitive which has been really fun. And, he just keeps getting cuter. :)

I love my two boys. They are each so amazing in their individual ways. I love Jonah's goodness and sweetness. I love Isaac's fire and strength. I feel so incredibly blessed today to have such amazing kids. My heart has been so full of love for them.

There are times when I just sit and stare at Isaac marvelling at the miracle he is--and not just a miracle because he is so small and has been through so much--but a miracle simply because he exists at all. Suddenly we have this tiny, bold, beautiful little person who wasn't here just a short while ago. And he's packed with such strength and such strong opinions :) Isaac is a miracle, but life is a miracle.

I look at Isaac and I am overwhelmed with love for him. I love him simply because he exists. What a strange thing. In so many relationships our love is tainted by how we are treated or whether or not the other person is difficult to love. As a parent, those things are inconsequential. We love our children simply because they are here. And we love them with a depth we can't explain or even understand. It's the closest thing we have to understanding Heavenly Father's love for us.

I have sat by Isaac's bedside and talked to him many times. I usually say things like, "Hang in there little one. I am here. It's going to be okay." There have been several times when as I have said these things to my boy, I have felt Heavenly Father saying them to me as well. "Hang on little one. I am here. It's going to be okay." When I think about the fact that He loves me so infinitely more than I could ever love my little Isaac, it humbles me to my very core. How could so much love be possible. But I have felt it--I have felt His love in a way I never have before and I do not think I will ever again be the same.

I know there are many who do not believe in God. Everyone arrives at their belief system in their own way through their own experiences. That is as it should be. The only experience I can share is my own. My beliefs are my own--and they have come through many experiences, many feelings, and many hours of pondering.

My belief is this: God lives. He lives in my life and in my heart. His love for us is profound. I have felt it too deeply to ever be able to question it again. That is a miracle.

"If you add a little to a little, and then do it again, soon that little shall be much.-----Hesiod




Isaac was super alert today after I finished holding him (which is rare) so I took full advantage and got some pictures and video. He was totally looking around trying to find me, swatting the tube in his mouth and staring at the lights. It was so fun to see him so alert. He kept looking right at me which he doesn't do very often. It was nice to see more of his personality come out.

He has been doing pretty well the last couple of days. He's pulled a switcheroo on us and his lungs are doing great while his bowels now aren't. Based on his lastest x-rays, his intestines are just not handling digestion very well and so they've stopped his feeding again. They're confident it's from the CMV, and are hoping that as that improves, so will his bowels.

His lungs however are looking great. The x-ray today was the best in a long time and they are hopeful it will continue that way. No plans for any real weaning off the vent yet, but things are moving in the right direction for that to happen.

He's bit of a chunker now at 2.3 lbs--He's a bit bloated due to excess fluid, so not all of that weight is due to nutrition, still it's nice to see a little meat on them bones. :)


I've been having such a hard time trying to balance between Isaac and Jonah (and Jaska) the last couple of weeks. Jonah (our two year old) and I have always been close and he just doesn't understand. I know he feels betrayed and his little heart is in such turmoil. He misses his Mama and has a hard time expressing it--so he's all over the place emotionally and behaviorally. I spend some quality time with him in the morning and evening, but it's just not enough. He tells me all the time that he misses me, even when I'm right there. I feel like I'm always failing no matter what I do. I probably am--but what can be done?

My mom has been staying with us for 3 days each week to help out with Jonah and house stuff. It has been (and will continue to be) invaluable. I really thought that it would make it easier on Jonah to have that continuity and to have his Nanni (whom he adores) over to play. I know it's helping, but he gets so mad whenever she comes because he knows it means that I leave. It tears my heart out every day to have him so sad. He has a blast with his Nanni, but it's not the same--he just needs his Mama. My heart is broken no matter what I do. I constantly feel like I'm failing one of my kids (or my husband--although he's so great about trying to reassure me that I'm not).

Everyone tells me that Jonah is resilient and will bounce right back and while I know that he is resilient, I still really worry about what effect this will have on him long term and even short term. Knowing he's resilient doesn't help when he's clinging to my leg bawling when I try to leave to go see Isaac. I worry about what it will do to our relationship. Will he stop trusting in me? We've been such good buddies and I worry that our relationship will be permanently damaged. I love all of my boys so much and it is really killing me trying to find a balance that works at all.

We're holding it together though, and somehow manage to get through each day. All we can really do is try to make that day successful and if it isn't, try again tomorrow.

Isaac is holding steady which is fabulous, he's tolerating being held beautifully (we both take a little nap each afternoon when I hold him), and Jonah and I do still have fun every day. We have so very much to be grateful for.

Everything comes gradually and at it's appointed hour. ---Ovid



Ahhh...finally back at the hospital. I'm glad to be able to go back and also exhausted at the very idea of going back every day.

Isaac is still essentially doing the same. He hasn't been doing as well with feeding as he was, so they had to stop his feeds again to give his belly a rest. Things are just really slow going down there and it seems he's not quite ready yet for such a constant schedule.

A new doctor is on for the next two weeks, Dr. Hagadorn. Both Jaska and I really like him--he is a little more chill in some regards than the other MDs which suits our personalities better. He still is vigilant about Isaac of course, but his approach is a little more in line with what we've been thinking.

I had a talk with him today and his opinion is that all of Isaac's issues are definitely caused by the CMV and that the best thing to do is just wait for the infection to take it's course. He wants to wait for a window of opportunity where Isaac is telling them he is ready for a change and jump on it. It was so nice to hear this because this is what I have been feeling all week. They kept pushing the vent changes and pushing his eating and every time he made it clear he's not ready yet. Sometimes even the smallest change would set him off. I totally see the necessity of him progressing, but it has to be when his body is ready. So we wait. Some more.

Dr. Hagadorn is calling every expert on CMV he can find to ask about the steroids option. He really doesn't want to give Isaac steroids and would rather wait for Isaac to be ready, rather than try to force him to be ready with steroids. Steroids definitely look like a last resort at this point.

I'm really growing tired of stable. Stable is good--it's really good. It's just not good enough anymore. I've been trying to "be still" and just be present in every day and not be concerned with what is or isn't coming-----but it's not working anymore. Time is slowing down and I've started to realize just how far away April is. It probably doesn't help that the twin preemies who have been right next to Isaac for the last 2 weeks are going home soon. I got to listen to the whole conversation about it today while I held Isaac. I looked down at Isaac's little face and thought, "Our time will come sweet one--it's just not yet."

What got me through today was thinking that Isaac will not be a 35 year old man on a ventilator. Or a 14 year old on a ventilator. Or a 3 year old on a ventilator. He will come off the ventilator someday and I just have to believe it and not think about when it will be. Someday we will laugh at how crazy it is that our 6' 17 year old used to be so unbelievably small.

Some days the only thing getting me through this is knowing that it will end.

"I believe that imagination is stronger than knowledge,
That myth is more potent than history.
I believe that dreams are more powerful than facts
That hope always triumphs over experience
That laughter is the only cure for grief
And I believe that love is stronger than death."
Robert Fulghum. Storyteller's Creed.

Not much to report today--thank goodness. Isaac is about the same that he has been for the last week or so. We're still sick with the flu, so we call a few times each day to keep track of how he is doing. It is KILLING me to not be able to go to the hospital. This is day number three, and it looks like I won't be able to go tomorrow either. It's making me crazy to have to stay home--but I know it's what's best not only for Isaac, but our whole family. Jonah has really needed some extra love and attention in addition to being sick so it's been nice to be able to give him some "Mama Time".

Just something fun I came across in one of the preemie books I'm reading. The following people were all born prematurely.

Isaac Newton, Jean-Jacques Rousseau, Voltaire, Johann Wolfgang von Goethe, John Keats, Mark Twain, Winston Churchill, Albert Einstein, Anna Pavlova, Stevie Wonder, Victor Hugo, Sidney Poitier, Pierre-Auguste Renoir, and Charles Darwin. (I'm sure there are many fabulous women who were born prematurely as well, but history is a little biased :)

Apparently Albert Einstein didn't begin speaking until he was three. I love knowing things like that. Even though I know the statistics are valuable and I know the doctors have to take the position they do in order to not give any false hope to parents (although some take it a bit too far), I love being able to say, "Ahah! See! All these babies did just fine! We'll show you!" :) Totally juvenile I know. To quote Walt Disney, "It's kind of fun to do the impossible." (Even though we aren't actually doing anything--it is kind of fun to watch the "impossible" happen right before your eyes.) What a gift.

"Some say knowledge is power, but that is not true. Character is power." Sri Sathya Sai Baba


Our big news for the day? Isaac finally pooped! I'm sure this is fascinating to all of you :) but it's great news for Isaac. It's amazing what things you can get excited over. One of our favorite nurses, Rhonda, gave him another enema this afternoon and said he pooped a weeks worth afterward. Excellent.

We weren't able to be there today. Jaska and Jonah have had the flu and we didn't want to carry any germs into the NICU. It was so hard not to go today. My heart ached all day. It was super fun having a day to play with Jonah, but really tough to not be at the hospital. We couldn't take any chances though of passing anything along to such fragile babies.

The neonatologists do two week rotations at the hospital, so today was Dr. Matson's last day for a while. We talked to him on the phone about Isaac's condition. He is still very concerned about Isaac's lungs. He is not coming down on his vent settings and it could cause some real problems if he doesn't get off the ventilator soon. If things don't improve in that arena, they/we will have to make the very difficult choice as to whether or not to try a round of steroids.

Steroids are often used to help preemie's lungs (they are an anti-inflammitory drug and inflamation from the forced pressure from the vent is one of the biggest issues with preemies lungs). Steroids are often very successful in helping these babies make dramatic progress with the ventilator. Unfortunately, they also supress the immune system. Since that is already a huge issue with Isaac being on the Ganciclovir, it's a really tough choice. Dr. Matson said he'd only consider it if there is no other choice, and a lot of it depends on how Isaac responds (or doesn't) to the Ganciclovir. So they are going to give it a week or so, and see where everything stands. I'm really hoping that things will improve naturally as he gains more weight.

They've been watching his white count, and while it's still well within normal range, it has been dropping. It was extremely elevated however due to his body building up a response to the CMV. The day or two before giving the Ganciclovir, it was at 44,000. The first CBC after the treatment showed a count of 25,000. The last one was 9,000. Normal range is 4-10,000. So they are not sure if his count is dropping due to his natural response to the infection, or if the Ganciclovir is playing a part. They said they will become concerned and stop the treatment if it drops to 1,000 or 500. So more fabulous waiting.

They performed a test a while ago on my placenta to see whether or not they could determine if the infection that was present was in fact CMV. The results came back and confirmed what we already knew--it was. It's crazy that I happenend to be that 1-4% who gets it for the first time while I'm pregnant. I'm still a bit shaken by that.

Like everyone else, Dr. Matson tried to make it very clear that this is in no way my fault. Intellectually, I can see that. I can look at the data and realize that it's really just bad luck. But emotionally, I can't help but feel responsible. It was my body that was supposed to protect him and help him grow. And because it couldn't do that, he is suffering so much.

I don't feel guilty so much as let down. Let down by my body. I try to take care of myself, I eat well, excercise, etc. Jonah and I walked everywhere during my whole first trimester for goodness sake! But both times I've been pregnant, I've been the sickest I've ever been. This time it was bronchitis and it was really bad. I couldn't get rid of it. It makes me so mad to know that I tried my best to take care of myself and my body still shut down like that.

It does no good, but sometimes I can't help but think--"Where did I get it?" Which trip to Target? Which door did I touch? Which playground did we visit? It's maddening knowing if I had just stayed home that day....but it does no good and I don't let my thoughts stray there often. It's not really my personality to obsess over things, so I'm sure I'll get past this--it's just maddening.

"We'd never know how high we are till we are called to rise; and then, if we are true to plan, our statures touch the sky." Emily Dickinson

Happy Birthday Isaac! Isaac is one month old today. I can't believe it's already been a month, but then again, I feel like I have been going to the NICU for my entire life. It feels like one incredibly long day. He would be 28 weeks tomorrow, so that is where he still is developmentally.

Not much to report on Isaac. He's remaining pretty stable. He's really comfortable on these certain ventilator settings, and every time they try to wean him a little bit he totally freaks out. So he's back up a little to the same settings he's been on for a while. He'll get there.

The good news is our boy is a chunker! He broke the 2 lb. mark tonight. He weighed in at a whopping 2 lbs. 1 oz. He's been tolerating the breast milk just fine which is great. We're hoping that once he starts gaining more weight, his lungs will strengthen and improve and he'll have more strength to fight his CMV. He's still only getting 2 mls every 3 hours--which is like a teaspoon--but we have to start somewhere right? He'll continue to get that for 5 days and then they'll slowly increase it if he continues to do well.

He was super touchy today. If we even lifted the blanket off his isolette for more than a minute (there's a great thick blanket over it to block out noise and light) he would desat (his oxygen saturation levels would plummet). So we left him alone as much as possible. I did get to hold him for two hours though--he was doing so well, we didn't want to put him back in. He started to desat a lot toward the end though, so back he went. We both fell asleep while I was holding him. I couldn't help it (neither could he I imagine). Basically, whenever I am not vertical, I fall asleep. Actually, I fall asleep sometimes standing up as well. I find myself wondering sometimes if it is possible to actually die from sleep deprivation.

I wonder sometimes how much of Isaac's NICU experience will carry over into the rest of his life. I've heard stories of other babies screaming every time they smell rubbing alchohol for months or years afterward--things like that. I also wonder how much of his little personality right now is inherently Isaac and how much is a result of his prematurity. For example; his demanding nature--he is very particular and likes things just so. Is that because he's a 23 weeker and super sensitive or because he's inherently dramatic? (Afterall--he is partly Goguen :) We shall see I guess. Even if it is a result of his prematurity/NICU experience which is my guess, will that then shape his personality for life? Will my boy who would have been mellow, now be high strung b/c of this? I wonder about these things. I'm sure there's no way of knowing for sure. I need more sleep.