"The mere sense of living is joy enough."--Emily Dickinson

"The sun does not shine for a few trees and flowers, but for the wide world's joy."
---Henry Ward Beecher

So sweet.

So incredibly disturbing.
Hello world. Meet my husband Jaska.
(My favorite is the look on Isaac's face---"umm...help?")

Jaska's sister Sari visiting from Houston. We loved having her visit (Thanks Sari! We miss you already!)




What a whirlwind of a week. The steroids have been working really well for Isaac which is so fantastic. It's almost freaky how well they have worked. After some strong negotiations on both sides :) we agreed on a plan for weaning Isaac off the CPAP. As of 4 pm today, Isaac is on the cannula full-time. Another miracle. What an amazing thing. All this time and then in a matter of days, he is ready. Seriously, I have a newfound appreciation for steroids. :) It is amazing what a simple yet complicated thing breathing is. So necessary, yet how often do I think about breathing? I don't think I will ever take it for granted again. There are so very many things I will not take for granted again.

Isaac is really ready to take food by mouth. Since he is off the CPAP, we are going to try to start breastfeeding tomorrow (woo hoo!). It will be slow-going and probably very stop and start as he gets used to it, but just the fact that we are even at this point is mind boggling to me. Even a week ago I thought it would be so far away and here we are.

When Isaac will come home is still up in the air, since they really want him off the cannula before they send him home. He's also been having trouble with his billirubin levels (which is why he's always orange in the pictures--our cute little oompa loompa) which may be indicative of some liver trouble if the levels don't go down. Other than that, things are looking really up for Isaac. At this point, he just needs to keep doing what he is doing and get over these last couple of speed bumps.

He is still "only" 4 lbs 6 oz. His weight is going up again though, so hopefully he won't lose any more.

Isaac is really a little sweetheart. At the beginning, he would get so mad and overwhelmed, but since he's been over the infection, he is so much more mellow and even-tempered. He still gets mad (really mad) if you're doing something he doesn't like, but otherwise, he's pretty chill. My favorite is when they have him all wrapped up like a burrito and all you can see is his little head sticking out. He'll just be looking around, trying to decide if anything is interesting enough to keep him awake. He looks like those glowworm dolls from the 80's--it doesn't help that he's orange. :)

Totally random info--I was looking around on itunes for lullaby music to bring to the hospital and found---you will not believe it--lullaby versions of U2 songs! I actually squealed I was so excited ( I am not a squealer). For those of you who do not know about my undying love for the band U2, this discovery completes me. :)

Today was weird. I've kind of gotten used to my NICU routine in the last 12 weeks. The same 3-4 nurses usually care for Isaac and know me by now and know my routine. I've become friendly with them and the staff and comfortable with how the NICU works.

Today, there was nobody that I knew in Isaac's wing of the NICU. I think they were rotating some nurses around, because every one of them was one I hadn't seen before. I was surprised at how much it freaked me out. I guess in a traumatic experience such as having a preemie in the NICU--any sense of normalcy and constancy is very calming and comforting. I didn't realize how much it helped until it was gone. I totally felt "off" all day. It actually made being at the hospital a lot harder, because it made the coldness of the equipment and the realities of the tests and procedures being done to Isaac so much more acute. Strange.

I've appreciated so much the nurses who care for Isaac--they truly care about him and do such a great job. I appreciate them even more after today.

Isaac has been struggling with edema (generalized swelling from fluid retention) for a while, but it's been particularly bad lately. There's been talk of steroids for a while, but serious discussion finally began yesterday. Steroids are anti-inflammatory drugs, so the purpose of using them is to get the fluid out of his lungs so he can finally breathe properly. The only reason they are giving him the steroids is to get him off the CPAP. There are side effects involved, including growth suppression, but the potential benefits outweigh the risks at this point.

I feel much better about giving him steroids at this stage of the game. One because it just feels like the right time, and two because he's off the Ganciclovir and on full breast milk. They will do a 5 day course and see how he does with it. The hope is that this time next week he will be off the CPAP and on a nasal cannula. Isaac can go home on a nasal cannula, he can't go home on CPAP. We'll be saying lots of prayers and keeping our fingers crossed. Even if he doesn't respond to the steroids, I am so incredibly proud of him. What a trooper he has been.


Just FYI---On Sunday April 29th, our family will be participating in The March of Dimes WalkAmerica. Here is a blurb from their website, walkamerica.org :

"Premature birth is the #1 cause of newborn death. It has reached epidemic proportions in the U.S., endangering the lives of more than half a million babies. And it's growing at an alarming rate. That's why we need you to participate in WalkAmerica.

Walk for a special child in your life - a healthy baby, a premature baby or sick one. Walk for all babies."

We would love you to join with us in supporting this cause. You are welcome to walk with our team, create your own team, or help us reach our goal of raising $500 for the March of Dimes. Our team page is http://www.walkamerica.org/miracleofhope.

Additionally, I just want to thank all of you for your unceasing support and love. Your emails, cards, service and prayers mean so much to us. We are truly humbled by your love and generosity. I will eventually be able to thank you all individually, but until then, please know that I read your comments, your emails and your cards and appreciate them very much. You are doing a lot to help us through this. We are very blessed to have such great people in our lives.

"That which causes us trials shall yield us triumph: and that which makes our hearts ache shall fill us with gladness. The only true happiness is to learn, to advance, and to improve: Which could not happen unless we had commence with error, ignorance, and imperfection. We must pass through the darkness, to reach the light." ---Albert Pike




Jaska's sister, Sari is visiting from Houston for a week. She happens to be a pediatrician which is pretty convenient. :) Isaac is now stable enough to be held by others, so Sari got to hold him today (sorry Mom!).

As of tonight Isaac will be on full breast milk. Halle-freekin-lula! :) I'm so glad that is going well. It makes such a big difference for him to be getting the proper nutrition.

He does have a urinary tract infection, so they put him on a 3-5 day course of antibiotics to clear it up. They had a consult about his blood work and agreed that it was low due to leftovers from the Ganciclovir. Yesterday he had his 15th blood transfusion (holy cow!) and his levels look much better today. They may go down again, but they don't think there is anything new causing it.

He's still 4 lbs 4 oz. He hasn't been gaining because he has so much fluid in his body. Yesterday he was so incredibly swollen everywhere. It was so sad--he looked so uncomfortable. They gave him a strong diuretic and today he looks much better.

Because he needed another transfusion and antibiotics, they had to put in an IV. He hasn't had one since his PICC-line came out. It took a half hour to find a good vein and get the IV in. Isaac was so mad. He sucked on his pacifier (covered in sugar water) like crazy. He didn't freak out as bad as he has in the past though and took it more in stride. As I sat there watching, I couldn't help but think of how incredibly strong he is. How much he's grown. He has been through more in his short 79 days, than I will probably go through in my entire life.

He has endured 8 weeks on the ventilator, and 3 1/2 on the CPAP (so far), surgery on his PDA valve, a crazy serious CMV infection/pneumonia, 15 blood transfusions, 2 PICC-lines, multiple ultrasounds, incessant poking and inspecting, not to mention his daily suctioning. Every day (it used to multiple times a day), they stick a tube up his nose and down his throat and suck out all the extra stuff in there so he can breathe. Gross? Totally. But also necessary and judging by his reaction, very uncomfortable.

When Isaac was first born I wondered if my laid back self would turn into a paranoid neurotic--looking at how fragile he was I couldn't imagine letting him go do something as normal (and as terrifying) as playing on a playground. Now? He's not out of the clear yet, and may end up with all kinds of issues that we need to adjust for, but my feeling is that we will just stand back and watch Isaac go go go. There is nothing for me to protect him from. He has shown over and over that there is nothing he can't handle.

I don't know if Isaac will end up with any disabilities. The statistics (and his doctors) say almost certainly he will, but my heart tells me that he will not stop surprising us with what he can do. If he does end up with any disabilities, I want him to be empowered. I want him to focus on what he can do, instead of what he can't. I don't want him to feel sorry for himself, and in order to achieve that, I can't feel sorry for him. I don't want to say--"Hey Jonah, Isaac can't reach the cereal will you get it for him?" Instead, I want Isaac to find his own way to get his own cereal and never be treated as if he can't. It's one thing to help sometimes, it's another thing to always do it for him.

However and whoever Isaac turns out to be I want him to be happy and proud of who he is and what he can do. What he has already accomplished. I want that for all my kids.

"Blessed is this life--and I'm gonna celebrate being alive." --Brett Dennen

They had to put Isaac back on the CPAP to be held instead of the cannula. His blood gas was coming back with too much CO2 which means trouble, so they decided the cannula was no good for now. Totally helpful for Isaac, but also a total bummer. He loved being off of it so much. He hates the CPAP. Can't say I blame him, it's super annoying. It's sad to have him all hooked up again after being able to hold him without the CPAP. It's certainly better than no holding though so I will take what I can get.

They are definitely concerned that he is still on the CPAP and on just about the highest setting. Discussion is beginning about where to go from here. There is of course the hope that Isaac will wean himself soon, but there is also the possibility that he won't and then what? They are discussing a round of steroids for him which should help clear up the fluid and inflammation in his lungs due to his lung disease.

Isaac's medical team is soon to include a pulmonologist (lung doctor) who will advise on where to go from here and Isaac's potential long term care.

The liver ultrasound came back totally normal (whew!). But, he had a full CBC (blood work) yesterday and again today that did not look good, so they are currently trying to figure out why. He acts fine, needs very little oxygen (28-32%), but there could be something going on. They don't think he has an infection, but they can't rule it out either. We should know more in a couple days. If he did have an infection, it would most likely be something mild like a Urinary Tract Infection, but at this point just the word 'infection' turns my blood cold.

He's been tolerating the quarter breast milk fine for the most part. There was some irritation, so they waited an extra day to increase the amount. Today he was fine, so as of tonight they will be giving him half breast milk at every feeding. Yay! They decreased the total amount to 33 mls while he still has so much fluid in his lungs hoping it will help.

He is 4 lbs 5 oz. and totally loves his big boy crib. They snuggle him up nice and tight with blankets and he loves it. He hardly makes a peep. As Jonah says, "Baby Isaac is cozy." Jonah is into 'cozy' things lately. His jammies, the bathroom rug, blankets. It's funny.

Jaska and I are getting tired. It's tough to keep up this pace. As time goes on it's getting harder and harder to keep my chin up. We're still staying positive and just trying to get through each day. We really need a jump start. Each day of this last week it feels like we're dragging just a little bit more than before. I will never EVER complain again about being tired.

We're hanging in there though. It helps so much to go and see and hold Isaac every day. It helps when Jonah is so awesome. It helps when we have the support and prayers of so many. It helps when I can take a moment during the day and just be grateful for what I have--a wonderful, beautiful family, a growing little miracle, wonderful friends, and a God who is watching over me and my family every day.

I am really trying to stay positive--I have been given so much. But days like today are just hard and the only thing I can really do is just go to bed early and try again tomorrow.

"I see the road is rough. You know I'm not giving up." ---U2

34 weeks (gestation) old today. Isaac is now considered "old". The nurses keep saying, "Now that Isaac is so old..." I have to agree. He seems ancient.

He is up to 38 mls of milk every 3 hours and is tolerating it well. Today they are going to start giving him a quarter breast milk each time. Hopefully he will tolerate it and they can keep increasing the amount. The only issue with the breast milk is that he needs more calories than what it provides. Breast milk is about 20 calories an oz. and the formula they are giving him is 24 cal/oz. They want to bump him up to the 26 cal/oz formula, but will wait to see how he tolerates the breast milk. He is 4 lbs. 1 oz and hasn't gained very much this week. He's just burning too many calories. If and when he is on full breast milk, they will have to add fortifiers to it to increase the calories so he'll chunk up even more.

He had an ultrasound of his liver this morning. No results yet. It is still enlarged from the CMV and being on the IV nutrition for so long. It's smaller than it was, but they want to make sure everything is still okay.

There's not much else going on--except him being moved to a big boy crib! :) YAY! I am super happy to see him out of the isolette to be sure. I have just always had an issue with hospital cribs. They look like little jail cells to me--maybe it's because they are made out of steel? I'll just have to make it look and feel super cozy for Isaac. It's so nice to be able to see his little face without plastic between us.

We're able to bring in our own clothes and blankets for him as well which is so fun. I've never really been a 'kootchy kootchy' cutsie baby type of person. I love babies and baby stuff is the cutest--I have just never gone ga ga over baby clothes or anything. With Isaac, I'm definitely drifting more to the 'kootchy kootchy' end of things. He's so sweet and precious and so are those tiny little preemie clothes. How can I help it?

The nurses have been great about letting us take over the space a little bit, so it doesn't feel like we are intruding so much. We're all trying to make a cozy little home for Isaac for as long as he is in the NICU. Despite how badly we want him to come home, I know I will miss this place when he does. It's where he spent the first months of his life--where we fell in love with him, got to know him, prayed for him, cried for him.

I was surprised at being a bit sad as they rolled away the isolette. It was his first little home.

I am very happy to be moving forward though. It's very exciting and Isaac is becoming so much more responsive. They said we could bring in a mobile for his crib. Just the fact that he's ready for a mobile when just weeks ago touching him was too much, is incredible.

(FYI--a few people have told me that they wanted to post comments, but couldn't unless they had a blog. Apparently I just had to adjust the blog settings. So if you would like to leave a comment, you should be able to now. :) God Bless.

(I needed a little perspective today.)

"Stop Worrying. God is in control." --bumper sticker I saw today.

Isaac turned 10 weeks old yesterday. I've been needing a little perspective and have been looking at some of his earliest pictures. It's very painful to look at them, but it also fills me with such hope and humility at the miracle he is and how far he has come. He just does not look (or act) like the same baby that they brought in 10 weeks ago. It is so amazing to me.


My baby's in big boy clothes! I almost started crying today just because he looked so dang cute! I know it sounds crazy, but the first thing I thought was that he looks like a real baby. I know he's a real baby of course, but it's hard to see past all the equipment sometimes and imagine what he will look like without all that stuff attached. It sure did my heart good to see this. I just wanted to smoosh kisses all over his little face.




We did manage to get a couple pictures of his bath the other day. This was after we dunked him and swaddled him up to wash his hair.


Progress is progress and I'll take it any way it comes. Isaac is moving forward, just very slowly. He's been slowing down a bit during the last week, but is still going in the right direction. Isaac seems to have his own idea about what needs to happen when. It's funny--sometimes he'll have a nurse who doesn't know him very well and she will start saying how he needs to be pushed and the doctors need to do this and that--and those of us who do know him just smile and say, "Sorry, we've learned our lesson. You can't pull that with Isaac." Every time we try to push him, he ends up doing worse. So--we wait for him to tell us when he's ready.

He had to go back up to 7 on the CPAP. Apparently he had a nurse who thought he needed to be pushed and by morning he was back up to 7. "Oh Isaac."

He lost a little bit of weight and still hasn't broken the 4 lb mark. Erghh. He's digesting his food fine, he just has so much air in his belly from the CPAP that the food can't always get through.

There's only about 6 weeks or so left until his due date and it's looking like he'll be in the NICU longer than that. His lungs are improving, but it's going to take a while for them to heal enough that he can do it all on his own. Everything else that he needs to do to be able to come home (drink from a bottle, no apnea) can't happen until his respiratory situation is resolved.

He's a wonderful little sweetie and I'll take him any way he comes. I said at the beginning that I don't care what problems arise, I just want him around to have them. I still feel that way wholeheartedly. It's worth every second of this and more to have him be alive and able to be a part of our family. There are certainly very hard days, but there has never been a moment when we've questioned whether it's worth it.

There is no doubt this is the hardest thing both Jaska and I have experienced. I can't speak for Isaac on this one, but it's also been the greatest thing we have ever experienced. I can't help but feel singled out, but I know that I'm not. Miracles like this happen every single day. So many people have told me their stories when they hear of Isaac. Stories of hope and love and miracles. I love hearing them. It reminds me that we are not alone. Every day I just want to shout, "Look what God can do! Look what He is doing." For me. For my boy. God truly is love.

"The deeper the sorrow carves into your being the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter's oven?" --Kahil Gibran


I totally thought that today was going to be the day that Isaac would break the 4 lb mark, but he's been holding steady at just under. They weighed him tonight and he's at 3 lbs 15.9 oz. The last couple of days he has been super active though, so I can't say I'm surprised. He hates his CPAP so much and expends the majority of his energy trying to rip it out of his nose. It's actually quite entertaining.

When he got to 2 lbs we were ecstatic--3 lbs, he looked huge. Now 4 lbs is just obscene! It's crazy how your frame of reference can change everything. There was a baby that was in the bed next to Isaac for a few days last week who was 9.5 lbs. She was full term, but needed to be under observation due to labor complications. She seriously looked like a sumo wrestler compared to Isaac. It was freaky.

They knocked his CPAP pressure down to 6 tonight. He desats when he pulls it out, but when it's in he's fine. Hopefully this change will stick. At this rate it will take another 6 weeks to get off the CPAP. Hmmmm.

Yesterday was one of those crazy days where I realized very late in the day that I hadn't actually sat down at all. I was in some serious need of r&r. I went go hold Isaac in the evening which I don't normally do and it was soooo nice. The place was deserted. It was dark and quiet. I plugged in my ipod and listened to some very nice soothing modern folk. Amos Lee, Brett Dennen, Deb Talan/The Weepies, Jack Johnson. Ahhhhhhh. There is nothing better than just the right music at just the right time to put you in just the right mood. The only thing that would have made it more relaxing was if I was actually in my own house. Ah well, it gives me something to look forward to.

Isaac is making progress still--it's small, but steady. He is definitely not stagnating any more (halle-freekin-Lula!). He's getting old enough now (33 weeks gestation) that he can soon be transferred to an open bed instead of a covered isolette. I am very excited for this change to come. As grateful as I am that he's had the isolette to keep him warm and well, isolated, I am growing tired of looking at my baby through plastic.

Today I got to give him his first real bath. He loved it. He freaked out a little at first, and the expression on his face was one of, "What in the world?" It only took a minute or two though before he totally relaxed. (Sorry no pics/video--we realized at the end that the camera wasn't recording--D'oh!) It's always nice to be able to do anything to care for him. I can almost forget for a minute where we are.

On a completely unrelated note: This afternoon Jaska was relaxing in the living room and flipping channels from one Bond or Steven Segal movie to another. I wasn't paying attention until I realize that for a while I'd been hearing the most bizarre dialogue. I walk into the living room and he's totally engrossed in (I'm totally serious) Those Magnificent Men in Their Flying Machines circa 1965. His comment after I expressed my incredulity? "This is pretty tight."

He seriously watched almost the whole thing. I'm just a little bit weirded out.

Isaac is speeding along and finally making some significant progress. I find myself being torn between being very excited and very cautious. I certainly want to enjoy the progress, but I am admittedly afraid of whether it will last. It seems so foreign to me that he's doing well. I almost don't know how to handle it. Strange.

The NICU has certain criteria that must be met before they will allow a baby to go home. One of those is Isaac must be at least 4 lbs and gaining weight steadily. He's 3 lbs 12 oz and should hit 4 lbs in a couple of days if his weight gain continues as it has been. Crazy.

The other criteria are a ways off for us--but the fact that he's even accomplishing one is huge. In order to come home 1) He must be off the vent and CPAP and breathing on his own (sometimes they'll send babies home with an oxygen cannula, but we'll see). 2) Able to get food from a bottle or breast. 3) No apnea (stopping breathing) episodes for 7 days.

His PICC line (PICC is a long, thin, catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed into the vein until the tip sits in a large vein just above the heart. It is used to administer fluids and medication) has been removed since he no longer needs his food through IV and he's no longer getting so many meds. Besides his leads (little stick on sensors that monitor heart and respiratory rates and oxygen saturation levels) he's virtually tube free. He just has his CPAP. It's so much easier to get him in and out of his isolette.

I realized today that I have a growing resentment towards his isolette. On the one hand it is keeping him alive. On the other, it is keeping him from having a normal interaction with the world and keeping him from us. Having to look at my baby through a sheet of plastic has become more and more frustrating for me--especially as he gets bigger and more responsive.

During the first 6-8 weeks, Isaac was too immature and sick to really benefit much from our presence. It was beneficial, but also super overwhelming for him. Often, even speaking to him or just touching his little hand would overwhelm him and we would have to stop. That was difficult in its own way, but at least when we left we knew it was also beneficial because he needed peace and quiet so badly.

Now, he's more able to tolerate stimulation and does benefit from our interaction with him--especially the skin to skin holding. Today when I put him back after holding him, he got so super angry. It was amusing, but it also broke my heart. He knows who I am now--he knows the difference between when I am there and when I am not. He loves when I hold him, hold his little hand, give him his pacifier, etc. I know he doesn't need me there around the clock, but the 4-5 hours it ends up being each day is so glaringly inadequate--for him and for me.

I can't help thinking of those stories of babies in orphanages in Romania who die or are completely catatonic because no one has ever held them or shown them love. Obviously, that is not the case here but I'm becoming paranoid as to whether or not he will suffer from spending the first 4 months of his life in a plastic box. Ohhh--it's driving me crazy. I have to stop thinking about this or I will lose my mind. There is nothing I can do about it. ARGHHHHHH.

"Love makes everything that is heavy light." ---Thomas P. Kempis

Isaac loves his pacifier. When he wants it, he goes nuts if he can't have it. Apparently it is very soothing for preemies, so we try to give it to him as often as possible. Yesterday, I was trying to devise a way to keep it in his mouth without my holding it. I kept trying to get Isaac to hold on to the pacifier with no luck. Finally, his little hand wrapped around the giraffe and presto! Success! It was so sweet. He just clung to the giraffe and sucked on his pacifier for a long time. What a little sweetheart.

Isaac is 3 lbs 8.6 oz. and growing. As of midnight tonight he will be on full feeds (32 mls) for his size. As he keeps growing, they will increase the amount. He's still doing great with the Progestimil--no word yet on when (or if) they will try going back to breast milk.

Tomorrow is the last day of Isaac's Ganciclovir treatment (whew!). He held in there for six weeks. he needed several transfusions, but they were able to keep him on the treatment. The final word is that they will not be trying to continue the Ganciclovir. The infectious disease specialist did not think it was necessary and there just isn't enough data regarding babies staying on the drug long term to warrant the risk. I'm really looking forward to him getting off the drug, but I am also nervous about what it will do to his health. If the Ganciclovir really has been suppressing the CMV, going off of it might bring back some of Isaac's earlier problems. He is so much bigger and stronger than he was though, and has a much better chance at fighting any problems that may arise.

They tried weaning him down on the CPAP on Sunday, to a pressure of 6 from 7, but he only lasted about 12 hours before they had to put him back up to 7. One of his nurses that I trust the most told me that in order to make it home by his due date he is going to have to tolerate weaning off the CPAP fairly quickly and steadily. If he's a slowpoke about it like he has been with the vent, it's likely he'll have to stay longer than we thought. His lungs just got so ravaged from his CMV pneumonia. I want him so badly to be able to come home, but I also know Isaac well enough by now to know that he'll come off the CPAP when he's good and ready and there's no point in pushing him into it.

I'm just taking it day by day and trying not to think too much beyond a week ahead or I seriously start losing my mind. In the meantime, I get to hold him every day without the CPAP (they let him be on just oxygen while I hold him which is SO much nicer than the CPAP) which is so fun. They take him out and he just settles right down on his Mama and we cuddle (and usually doze) for an hour or more. Mmmmmmm.

(Wow--we look wasted)

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ~Mother Teresa

Please forgive the shameless array of photos below--they decided to take Isaac of the CPAP for one hour each day while we hold him, so of course I had to take lots of pictures while his face was actually visible.

It took him a few minutes to settle down on Jaska. It was his first time out of his isolette without the CPAP or the vent--he was like, "I'm free! I'm free!". He was lifting his head all around and basically trying to jump off. I think he scared himself because he started crying (still no sound coming out--but a definite cry nonetheless). It was pretty hilarious.

Lovin on Dadda

Nap time

As much as I love holding Isaac, I love the time right after just as much when the nurse first puts him back in his isolette. He is usually super alert and inquisitive and will look around for me. Today, since he was on the oxygen cannula instead of the CPAP, he had nothing on his face when they put him back in. I could hardly believe it--- nothing on his face! I realize that I am biased here--but what a cutie pie!




Overall Isaac is still doing really well. He is up to 18-20 mls (30 mls is an ounce) of milk every 3 hours and tolerating it just fine. He weighs 3 lbs 4 oz. and seems to finally be getting over that 3 lb mark that he's been hovering at.

He only has one week left on his 6 week Ganciclovir treatment. There is talk of perhaps extending the time he is on it since his white blood cells have been fine. His platelets have dropped a few times though to a level that warranted a transfusion--the latest being yesterday.
No decisions on that one yet--we need to meet with the neonatologists and the infectious disease doctors again and make a decision about that. I'm still on the fence about it.

There has also been talk during the last couple of weeks of trying a round of steroids. It usually gives a significant boost in getting preemies to make real progress on the vent, but it also has some real side effects as well. The most obvious is immune suppression, which Isaac obviously doesn't need. There have also been some recent studies showing potential effects on the brain for preemies who were given steroids--basically smaller brain size. The preemies studied were given much higher doses and for much longer than would be given to Isaac however. The good news is that Isaac has been doing so well on his own, that they've held off on the steroids.

The other main issue is his feeds--while he's doing really well with the Progestimil formula--it's still formula instead of breast milk. Apparently the CMV really did a number on his digestive system and just won't tolerate the breast milk--at least for now. This week, a couple of different people told me there was a definite likelihood that Isaac won't be able to have breast milk for a long time, if ever. It's pretty likely that he will be on the formula until he leaves the hospital.

So in the meantime--I'm still pumping. It's hard enough to stay motivated to pump without a baby close by, never mind the fact that he hasn't even been taking my milk. Now that the very real possibility is looming that he may never take it, it's even harder to motivate myself. If I weren't me, I would tell myself to give myself a pat on the back for a job well done and be done with it. But--I'm having a hard time doing that. My gut is telling me that I should keep pumping--so I'm still pumping.

I'm still weirded out by the fact that he can't tolerate breast milk. I can't help but think as he gets better and bigger, his digestive system will figure it out and he'll be able to take all this milk. I certainly hope so.

Emotionally--we're still hanging on. Something I didn't expect is that it's actually becoming more difficult in some ways as Isaac gets better. As he becomes more and more like the chubby inquisitive newborn he was intended to be, it makes the fact that he is not home with us more and more glaring.

It is very traumatizing to have a baby born so early for many reasons. As weird as it sounds, it was hard to think of him as a real baby at first. We knew he was ours and we totally fell in love with him, but he looked so different from what we associate in our minds with a newborn that it was hard to make the connection that he was in fact our newborn baby.

My brain has sort of compartmentalized the experience. I've been going to the hospital to see and hold my baby. He lives in a plastic house with all kinds of tubes and wires, sleeps 24/7 and hardly moved until a couple of weeks ago when he finally started getting better. My brain has sort of kept this part of things separate from the idea that at some point this same Isaac will get better and come home. Thinking about him coming home up until this point has been a bit alarming to me because it seemed so bizarre. All I know of Isaac is in the hospital as this fragile funny little thing. As he becomes more stable, grows and actually becomes more like an infant, I've been able to make that connection of him coming home. Now as he's getting better, it's harder to leave him there each day. I can visualize him home with us just hanging out and becoming integrated into our family.

I am so glad we have made it this far and that he is doing so well. I really do try to be grateful for what we do have--a wonderfully opinionated, sweet strong little man who has blessed our lives so much. We have a hospital close by that is equipped with the technology and staff needed to care for Isaac and they do so with compassion and competence. We have finally reached the point where Isaac is stable, growing and improving every day. We have a sweet natured little toddler who can tolerate 1-2 hours at a time at the hospital. We have wonderful friends and family who have helped so much throughout all of this. We have had our testimonies of God and His son Jesus Christ strengthened beyond what we thought possible. We have so much.

Once again, I have to be patient. I am happy that Isaac is where he is, because it means he is getting the care he needs. It is a necessary step that we can't skip over to get to the end. (However desperately I wish it at times) It's hard to be apart from him and I do wish it were different sometimes. Despite that longing however, I still wouldn't change a thing about this experience even if I could. The journey of life is such an immensely vivid and valuable thing--I don't want to miss a single step.

"Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body." --Elizabeth Stone

Isaac is doing awesome on his CPAP. His pressure is still at 7, but his oxygen requirement has been down to the 30s and 40s. Today when I went in it was at 28%. He hates it--but he's doing well on it. He always tries to pull it out so they had to put this sticky stuff called duoderm on (and I think in) his nose to help hold the prongs in.

"Oh, Isaac" is a common refrain with just about everyone, including us. The nurse will get him all nice and cozy comfy, he'll be doing fine and then she'll walk away and he'll start desating, or he pulled his tubes out--any number of things. The other day he managed to flip to his side all by himself. This little man has been giving us a run for our money that's for sure. Quite a big personality in that little body. All the nurses love him though even though he's so difficult. :)

The other night I was able to hold him skin to skin and he did so well. I gave him his little pacifier to suck on while I held him and he loved it. Whenever I tried to pull it away, he would get so mad. It was so funny--and so much like something a full term baby would do. Once we put him back in his isolette, he was so super alert, looking at everything and staring with fascination at the oxygen bag next to him (above picture).

I gave him back his pacifier, thinking he wouldn't be able to hold it in by himself--and boy did he show me! He was holding on for dear life trying to keep it in. Kathy his nurse and I were dying laughing. What a little funny.

They began increasing his feeds today. he's up to 8 ml every 3 hours and doing pretty well. He's still on the Progestimil and will be for a while. They are going to increase the amount they are giving him every 12 hours. The plan is to get him on full feeds and off the IV fluids in a week. So far so good.

Another good day. Another good week. So much to be happy about.

"Life is wonderful."----Jason Mraz