The Real Miracle

"I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness, and the willingness to remain vulnerable."
-Anne Morrow Lindbergh

Let me preface by saying that this is Jaska. On behalf of the March of Dimes and all those (including Jenn, Jonah, Isaac and myself) who benefit from the work they do, let me say THANK YOU to all those who donated. There are so many worthy causes out there, I am very grateful to those who sacrificed to a cause that has become so dear and personal to us.

As Isaac's time in the NICU feels to be coming to a close (knock on wood), I've been thinking about this "Miracle of Hope." Isaac's progress hasn't been the miracle. I knew from the moment we thought we were going to lose him that he would turn out okay. I knew it with unprecedented (for me) calmness and surety.

For me, the real miracle is the literal meaning of the title of our blog. The miracle of hope- not for Isaac, but for us. Isaac didn't need our hope. We needed our hope. I really don't know how anyone could get through this type of experience without faith or hope- in something, in anything. I don't think I would have gotten through this trauma without having experienced God's calm, direct, clear and strong assurance from the very beginning. To me, that is the real miracle. He could have been silent; he could have helped Isaac progress the same way without cluing me in. The real miracle is that God gives us what we need to make it through the shit we just don't think we can slog through on our own. He gives us hope.

I have often thought "Why me?" I am so very humbled by Isaac's life being spared, but my joy is tempered by the sorrow others have faced. Isaac has walked through the valley of the shadow of death and has survived- even thrived. Nearly concurrently, a friend and his wife lost their baby; the fathers of three separate friends have been diagnosed with cancer; another friend recently lost her husband to cancer; a friend I had hoped to make lost his battle with cancer; and my best friend's mom died in a terrible accident. Maybe "why me?" as regarding outcome is the wrong question; maybe, if hope itself is the miracle, then "why me" disappears, and we are all left with equal access to God's hope, however unfairly distributed outcomes may appear.

I don't know. It is difficult for me to understand why some people's suffering is "but for a moment" while others' is permanent. I can only hope that all those who suffer are equally blessed with whatever it is they need to bear their burdens. People have often said to me during this experience that they admire our strength in bearing our burden. But I don't feel strong. I never had any strength of myself, but what was loaned me.

March of Dimes Walk America 2007

Thank You! Thank You! Thank You for your donations! You have helped us raise $1500 so far for the March of Dimes. We are so touched by your generosity, thoughts and prayers.

We had such a good experience walking as a family. I didn't expect it to be an emotional experience for me, but it was. I kept getting choked up as I watched the hundreds and hundreds of people walk and cheer and celebrate. People who care about this cause as much as we do. What an amazing thing.

I have been amazed throughout the last four months how many people have a story. Just about everyone we meet knows a preemie or someone who's had a preemie. I had no idea it was so prevalent and so serious. Prematurity is the number one killer of babies. Number one. In the last twenty years, the rate of premature birth has increased almost 31 percent. Something is wrong. Donating to the March of Dimes helps discover what is causing this and literally saves lives.

I've come across the debate several times as to whether as a society we should be saving babies born as early as Isaac. I have my own complicated feelings on that matter, but I think spending so much time debating the shoulds is missing the point. We should be debating the whys and prevent it in the first place. Please believe me when I tell you, that spending four months in the NICU is a special kind of hell and one that no parent or child should experience.

Thank you again for supporting us in this cause. There are so many things worth fighting for--obviously this one is closest to our hearts right now, so thank you.

If you missed out on the walk--catch us again next year! God Bless.

Sunday afternoon nap with Daddy

The last couple of weeks have been a special brand of torture. Despite the fact that the NICU has come to feel somewhat normal, there is really nothing normal about it. In fact it reels against every natural feeling and tendency you have as a parent. There is something so fundamentally wrong about leaving your baby in the hospital for someone else to care for, in a plastic box, isolated from the world.

I am just getting so antsy! He's getting so close and I feel like they are dragging out this last part for no reason. He is totally ready to come home. I can handle him going across the street to the breathing center if they would actually do it already! Pulmonary finally came today (they said they were supposed to come last Thursday--turns out the NP didn't even call them until Friday. AARRGHHH!!) and decided that he would be over there by Friday. Friday? Friday? That's crazy! There really isn't anything stopping him from going right now. I am pushing hard for Wednesday. The only thing standing in our way is a tour of the other facilities which I am doing first thing tomorrow morning.

I was joking with my sister the other day about how pretty soon I'll just snap and grab Isaac and run out of there. I'll be on the national news as the crazy woman who went running out of the hospital with her baby. You just wait. If that happens, will someone please refer the police to this blog to back me up!

Isaac pre-surgery. I can't figure out if he's saying "I love you" or "hang ten" Both are very appropriate. :)

Getting whisked away to surgery (I got to go with him to the OR and then had to wait outside)


Post surgery. Every time I see him without anything on his face, I am taken aback with how much he looks like Jaska---and the Godfather.

Post surgery drug induced snooze

Happy Birthday Isaac! Today is Isaac's due date. I have mixed feelings about this--but mostly I am ecstatic that he's here and doing so well.

It's too weird for me to wrap my brain around the fact that if things had been different, we would just be getting ready to bring a baby home--not really knowing who he is yet. We would just be meeting our little guy, instead of totally madly in love with him like we already are. His name would certainly not have been Isaac. I'm sure he would have been a lot bigger than the 5 lbs 13 oz that he is (Jonah was 8 lbs 15 oz).

Regardless, I really believe that despite all of this, Isaac is Isaac and is the same little guy he would have been born full term. If he can be such a little sweetheart after all he has been through, then regular life shouldn't change that. Lucky us for being able to get to know him so much earlier than most. He rocks.

Isaac is recovering from his eye surgery just fine. The surgeon said that everything went perfectly. Now we are just waiting for the redness (his eyes are crazy red) and swelling to go down--poor guy. He's had a great disposition the last couple of days so I hope that means he's not in any pain.

As I was sitting in post-op waiting for him to come back I was thinking of all the parents who have to do this all the time--parents of kids with leukemia, cerebral palsy, muscular dystrophy, cancer, genetic disorders, you name it. I admire so much the children and parents who live like this day after day after day. I do not know how many times I could handle watching my baby go in and out of surgery--particularly if it was a matter of life or death. How, how, how can such a thing be done? I was a near emotional wreck--and it was only eye surgery.

Pulmonary didn't come today--hopefully tomorrow. I'm hoping they send him over to the children's hospital this weekend.

One of the risks to preemies is something called ROP or Retinopathy of Prematurity. For babies born as young as Isaac, they do routine eye exams to check for it. Basically, it is when the blood vessels that bring blood to the retina begin to develop abnormally. (If you are interested in more info about ROP go to http://www.charles-retina.com/rop-faq.htm)

Isaac had mild ROP which at his exam two weeks ago had become more moderate. The hope was that it wouldn't get any worse so that he would not need treatment (i.e. laser surgery). At his exam yesterday, his ROP had progressed to a stage 3 out of 5 and it was determined that he needs the laser surgery. Stage 3 is when it starts to get serious. It means the blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina.

The laser surgery basically causes scar tissue on the eyes that will prevent the abnormal vessels from spreading. Unfortunately it will also damage vision as well, but not very much if all goes well. Luckily, ROP usually starts at the peripheral of the eye which was the case with Isaac. If all goes well, he should recover just fine and have some mild to moderate damage to his peripheral vision only.

His surgery is scheduled for 9am tomorrow. There are risks involved--the whole taking a laser to a tiny baby's eye part being the most obvious risk. But the majority of babies do just fine and have no further complications beyond perhaps needing glasses. I can't help but be nervous though--I mean these are his eyes for goodness sakes! Plus, my stomach just wrenches at the thought of anyone doing anything even resembling surgery or a "procedure" to my little guy. I get agitated sometimes when they take his temperature!

On a slightly frustrated note, I gave Isaac a bottle for the first time on Sunday (just 15 mls with his meds in it). I'm going to have to give him bottles at home because he'll still need at least 4 bottles a day and Jaska obviously works. Plus, he needs his meds and putting them in his milk is really the only way to give them to him. Well--he totally freaked out and hasn't nursed well since. He's totally mad at me the little bugger. Before he started screaming his protest, he gave me this look that just screamed, "What in the world are you doing?" I'm really scared that this will be the end of nursing him. I'm working with the lactation consultants and dieticians though to see if we can make breastfeeding work regardless. Erghhh. On the bright side-he's eating well orally and that is huge. No feeding tube necessary which is normally a huge struggle for preemies.

On a more upbeat note, plans for sending Isaac home are in the works (Be still my soul, sweet hallelujiah :). He had a stress test from pulmonary today which he "failed" so they will in fact be sending him home on O2 (no surprise there). Now it's just a matter of going through the process of getting him home. Apparently, Isaac has to go across the street to the breathing center at the children's hospital for at least 5 days for monitoring. We have to be educated on how to use the O2 and equipment and they need to make sure he'll be fine on the home equipment before he can come home.

We've been asking everyone for a ballpark date, but they're squirmy about it. Best case scenario, the end of next week or next weekend. Even if it's longer, it shouldn't be much more than that.

Just a reminder to anyone that is interested in walking with us in the March of Dimes Preemie Walk--it's this Sunday April 29th at 10 am at the Hartford Civic Center. Registration begins at 9 am. We would love some company if you'd like to join us. Kids are totally welcome. If you'd like to come, just let us know so we can look for you.

(To our local friends, we realize that this is obviously right during church--so please don't feel bad if you'd like to come, but can't. We love y'all and can't wait to stop being hermits! Yay! Let's party!)

We are almost to our goal of raising $500 for the March of Dimes. If you would still like to donate, you can click the link to the right. Thank you all so much for your love and support. We'll make sure Isaac gives you all a big high five when he comes home.

I am trying to keep up with our pictures and video despite the obvious lack of time. I'm currently uploading all our video from the last 4 months into the computer. I love to make DVD's of our home videos, edit them, put them to music, all kinds of goodies.

Right now I'm watching our video of Christmas. It's totally freaking me out. It's so incredibly bizarre to me that there we are, enjoying our gifts, eating our cereal, making stupid comments, completely oblivious to what is about to happen to us. There we are, completely unaware that in two hours our lives will be turned completely upside down.

I wish I could go back and give myself a hug and say, "Get ready honey--you are in for a bumpy ride." So so so bizarre.

Isaac is the champion. I think I will edit some footage of him coming home and set it to the Chariots of Fire theme song--or maybe some Queen--"We are the Champions" :) He should go on a baby motivational speaking tour--he's a total professional now.

I will never take anything that Isaac can do for granted. Everything will be a miracle to me. What a gift that is. Of course, as parents, we already think everything our kids do is genius.

Isaac is 5 lbs 9 oz. He's taking all of his food by mouth and they removed his feeding tube. Tomorrow is a big day for him. Pulmonology is coming to do a consultation regarding his breathing status. They are going to give him a stress test to see if he is ready to come off of the O2 completely. Basically, all they do is take him off the O2 and make him mad to see is he desats. Based on his behavior as of late, my guess is that he will desat. (He desats when he's on the O2 when he's mad)

Pulmonology will give their recommendations as to what to do next. They may want to try to wean him in the NICU before sending him home, wean him across the street at the Children's Hospital as part of their breathing program, or just send him home on O2 and do the weaning there. We'll see. It will be nice to have a plan. We're totally pushing to have him sent home on the O2. I can handle maybe another week if they want to try to wean him at the hospital, but I'm not sure I can last much longer--especially if the only reason he's still in the hospital is because he needs O2. It's totally manageable at home.

If they do send him home on O2, Jaska and I have to go through all this training to make sure that we know what to do. I'm not sure how long that will take or how extensive it is. There's a really good chance he can come home this weekend though, depending on what pulmonology says.

I am getting so antsy I am ready to jump out of my skin!

Isaac is huge! He decided to finally start gaining some weight. In two days he put on 5-6 oz. When I first saw him yesterday, he actually looked bigger--I could see a difference.

He's taken all of his food orally for over 48 hours. Yay! He's gained weight for the last 3 days in a row(he's now 5 lbs 5.5 oz). Yay! This weekend they are going to switch him to the regular cannula. Yay!

If he keeps doing what he's doing, Isaac will be given the green light to go home at his evaluation next Friday. That doesn't mean he'll be coming home immediately, but it should be very soon thereafter.

They really don't want to send him home on O2--apparently it's complicated to manage--so they want to see if he really needs it before he comes home. Once he's on the cannula, they will do trials off the O2 to see how he does under stress. If he doesn't desat under stress, then he really shouldn't need the O2.

Crazy!

I'm totally fine with him coming home on the O2--whatever gets him home, I totally don't care if it's cumbersome.

Isaac is still doing awesome with nursing. Because it is so crucial for him to get the necessary calories to grow, I'll only be able to nurse him 2-3 times a day when he's home. The rest of the time, we'll need to give him bottles of fortified breast milk. The idea is that we'll gradually zone out the bottles, but there's no guarantee that we'll ever be able to do that. Breast milk is only 20 calories an ounce and he's having trouble growing with fortified 30 calories an ounce. We'll see I guess.

My head is just spinning. I can't believe we are finally getting to this point. I am so ready to move on to the next chapter in all of this. It's crazy to me to think that if things had gone as planned, we wouldn't even have a baby yet.

We feel like we've run a marathon before the race has even begun.

I'm essentially completely independent now at the hospital. I do everything for Isaac when I'm there. The nurses totally give me my space to care for him which is nice. They don't come running over if he desats, or if he's crying--they let me handle it which I really appreciate. If I close my eyes (and ears sometimes--the NICU is loud) I can almost pretend that I am just caring for Isaac at home. Almost. :)

My friends threw me a baby shower last night and it was wonderful (Thanks again ladies). It was so nice to be able to celebrate a little bit (and get such cute little clothes for Isaac).

Even though I'd rather him not be on the O2 when he comes home, it's going to feel really strange if he doesn't need any medical intervention at all. Almost as if this whole experience never happened. I'm sure there will be an adjusting period, but we are beside ourselves excited to get him home.

We love him so much and are so excited to be a complete family. I can't wait to love Isaac the way I've wanted to all this time.

Isaac is such a champ! He continues to do well and amazes all the medical staff (and us). Most refer to him as the "miracle baby". One of the lactation consultants was just telling me that it is very rare to have a baby do so well with oral feeding after being on the vent for so long. They usually end up with severe oral aversions and need to be tube fed for a long time. Isaac is doing really well with breastfeeding, but still gets pretty tired out with all the oral feeds he is getting. He can't handle it at every feeding yet.

He has been having a hard time gaining weight. We're not sure what the cause is, but that is the major concern right now. He can't go home until he is gaining weight steadily. It could be the steroids (which end today), or it could be that he's expending so much energy to eat and/or breathe. He just passed the 5 lb mark today. YAY! It may not last (he's been up and down and up and down) but it's still exciting. He is getting there.

They dropped him down to 1 on his oxygen on Friday night and he's done beautifully. Next stop is the true nasal cannula (instead of the Fisher Paykel kind) which is a lot more convenient. He can go home on the nasal cannula, not the Fisher Paykel system.

I talked with the head doctor at the NICU yesterday about Isaac's progress. He is thrilled with how well he is doing (as is everyone). He did mention though that this is often the most frustrating time for parents because it often takes a while for the babies to get over this last hump to be considered completely well. It echoed exactly how I've been feeling this last week.

I've hit another wall. I have just been so beat. Isaac is doing so well, and I am so incredibly grateful for that. Unfortunately for me though, gratitude doesn't always take away the fatigue or the emotional and physical exhaustion that come from going back and forth to the hospital 7 days a week for almost 4 months. I'm running out of energy.

We still have no real idea of when Isaac will be able to come home. He's still on the right track, but we're not sure how long it will take him to get to the end of it. That is the most frustrating part. It would be easier to do one last big push to the finish if I actually knew when that finish would be.

But...as Jaska reminded me this morning, if Isaac has lasting disabilities there will be no finish. I know that and I've accepted that possibility. I know things aren't going to be easy once Isaac comes home, not by a long shot. But---it will be easier in some ways (and harder in others). I'm looking forward to having my boys and my family together. That will be easier. Having a newborn and a toddler is not going to be easy, but if I can manage Jonah and Isaac together at the hospital, I'm sure home will be no problem.

I brought Jonah with me to the hospital this morning so I could feed Isaac. As I was getting Jonah situated so I could take Isaac out to feed him, I thought to myself, "It's probably not going to be harder than this to manage two kids (I hope! I hope!). If I can manage in the hospital, I'm sure I can manage at the mall or the park or wherever." I really hope that's true. It gives me hope that the level of frantic may drop just a little in our lives.

Meanwhile, we are slowly but surely getting our house ready for Isaac and trying to hang in there. (I'm really beginning to hate that phrase--that along with "wait and see")

Isaac is still doing well. He's hitting a few bumps as he tries to gain weight and master oral feeding. He's currently having some digestion issues that's making it hard for him to gain weight. His tummy hurts all the time and he gets super mad--which means he screams--which expends a lot of energy that should be going to growing.

He's on track though and at this point just needs to figure it all out. The plan is to go down to 1 on his cannula tomorrow (Friday). I am really hoping he breezes right off the cannula--it would be so nice to not have to wait many more weeks for him to get over these last couple of humps.

If he tolerates this wean down to 1, then in theory they will try taking him off in a week. We'll see.

He isn't quite up to full oral feeds yet. He's working on it, but he still gets so tired and is still learning how to coordinate breathing with sucking and swallowing. He's almost there.

He's up to 4 lbs 13 oz. He's been gaining weight, just very slowly. He'll go up one day and down for two days, then way up, and then way down. It's been frustrating. After all that he has been through, it seems like these last few humps should be so easy, but they are not. He's got to pull it all together and show that he can do everything he needs to do on his own. He's just not quite there yet. His due date is two weeks away and it looks like he's not going to make it home by then. I'm a little bummed, but certainly not surprised.

Jonah loves to hold baby Isaac and give him kisses.

The following is written by Erma Bombeck and adapted from Motherhood The Second Oldest Profession.

The Special Mother

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint, Matthew.
“Forest, Majorie, daughter. Patron saint, Ceceila.
“Rutledge, Carrie, twins. Patron saint... give her Gerard. He’s used to profanity.

Finally, He passes a name to an angel and smiles, “Give her a premature baby.”
The angel is curious. “Why this one, God? She’s so happy.”

“Exactly, “ smiles God. “Could I give a premature baby a mother who does not know laughter? That would be cruel.”

“But does she have patience?” asks the angel.
“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.

“I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn’t realize it yet, but she is to be envied.

“She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy’ for the first time, she will be witness to a miracle and know it.

“I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, the pen poised in mid-air.

God smiles. “A mirror will suffice.”

-Adapted from
Erma Bombeck
Motherhood The Second Oldest Profession

I totally bawled today when I read this. It hit too close to home--(except the saint part at the end--I am anything but).

I have felt so unbelievably inadequate for this task. I believe motherhood can bring out the best version of ourselves, but unfortunately it brings out the worst as well (a side with which I m more acquainted than I would like). I know that this experience is meant to bring out that best side of me (whether or not it has or will is still being determined).

If during this experience I can maintain my sense of humor, if I can stay patient with Jonah (and Jaska, and myself), if I can totally submit to God's will for me and my family, if I can be consistantly grateful for all that I have, if my compassion for other's sorrow increases, if I can feel joy despite my pain...then I can do anything.

I'm surprised at how empowering this experience has been. I feel such a sense of ability. I feel like after this there is nothing I cannot do. I feel the same for our whole family, especially Isaac. (Poor Isaac is going to get little pity from me if he ever tries to tell me he can't do something. Please.)

I have felt God's hand guiding me so often during the last four months. I know there is something/someone he wants me to be and I am trying very hard to accomplish it. Most days I fall flat on my face--but I'm sure He's used to that. :)

The oft quoted C.S. Lewis says it better than I:

"Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on: you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of — throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were going to be made into a decent little cottage: but He is building a palace." --C.S. Lewis, Mere Christianity

I certainly don't feel like a palace, but I will never again be the same person I was. There are moments or experiences in life that can and do forever shape us. When my water broke on Christmas Day, I really felt like I approached a crossroads. In my mind there were only two options available. Sink. Or Swim. I/we chose to "swim" and haven't stopped since. There is no doubt that this has been quite difficult--but I have not been left alone for a single minute--our family has not been left alone for a single minute. I feel God's hand in this always. I feel his teaching and guiding me always.

An experience such as this breaks you to be sure--at least it broke me. But I have had to make the choice whether to stay broken or allow myself to be rebuilt. It is agonizing, but with God's help, I am finally beginning to believe that maybe I can become this person He thinks I can be. The jury is still out. :)

Posted in the NICU close to Isaac's bed, is a large white board that lists each of the babies in his wing. Next to the names is listed basic info about each baby--such as which nurse is caring for him, or his feeding schedule (9-12-3-6). In addition to this, each baby has either "NICU" next to their name, or "SCN." I've always been a wee bit jealous of the parents of babies classified as "SCN" (special care nursery) because it means they are what is called a "feeder and grower." It basically means they are fine and just need to get bigger and stronger before going home. I've thought to myself a few times that once Isaac is classified as "SCN" I'll know he's on his way home.

I glance at the white board every day on my way in to see Isaac. Until a couple of weeks ago, Isaac had a star next to his name meaning that he was the focus (of the wing) and needed some special care and attention. It was so weird when he was no longer differentiated from the other babies--great, but weird.

Today when I walked in and glanced at the board I stopped short. Next to his name was the much anticipated "SCN". I couldn't help it--I got all teary. Isaac finally graduated. Next stop is home.

Isaac is just doing awesome. He's a total professional now. He's got this baby thing all figured out. :) Technically he's not supposed to be on complete oral feeds yet, but he freaks out at every feeding until the nurse gives him a bottle. Pretty funny. They all love it though because they love to feed him. He sucks down a bottle in 10 minutes flat. Hmm--I think he's ready.

Today, he finally took his whole feeding while breastfeeding. He's come close, but this is he first time he took the entire amount (40 mls). Sweet Hallelujiah. :)

We finally set up his crib today. It's such a simple thing, and yet so much more symbolic to me than it would have been. I was positively giddy.

Isaac tolerated the wean down to 2 on the cannula just fine--it didn't even phase him. Next week they'll go down to 1 and see how he does.

I feel like doing the dance that Jonah does when he's really happy about something. He'll hop back and forth from one foot to the other while twirling in a circle and say, "YAY! YAY!"

I've been smiling all day.

Jaska's parents came to visit this last week. It was so nice to see them, and also so nice to have the additional help. It's amazing what a difference even one extra pair of hands makes. I find that after someone visits, I am suddenly wondering why I can't keep my house clean. :) (I have a bunch of fun pictures of Jonah visiting with Jaska's and my parents that I will post soon on Jonah's blog)



In the above pictures, the developmental specialist propped Isaac up to help his head from getting too flat (since he spends so much more time laying down than full-term babies) and put a heating pad on him to keep him cozy.

Part of Isaac's care is developmental. They actually call it "developmental care." It's a fairly new field, but one that addresses the very important human element in Isaac's care. The research findings behind it are causing many NICU's to implement this type of care. The idea behind it is to provide preemies the appropriate amount of stimulation, while protecting them (as much as possible) from things that overstimulate them--it's pretty easy to get overstimulated in a NICU. Preemie's nervous systems are so immature, they can't block out noise and stimuli like full-term babies can. I really appreciate this side of his care--they pay attention to his cues and stop when he gets stressed (they taught me that preemies actually have different "signs" for different moods--when Isaac is stressed, he will actually put his hand up in front of him like he's saying "stop"). I've always believed that babies really are communicating, but to see it in action like this is fascinating.

They try to make sure that Isaac is comfortable and secure whenever possible. It's so comforting to know that they are concerned about things like whether or not his head will be flattened in addition to all the other things they are worrying about him.

Today Isaac was evaluated by a physical and occupational therapist. He's got a crazy groove in the upper pallet of his mouth from the vent tube. It's very pronounced and they suggested some various massages and pacifiers to help it to resolve.

Feeding is still going pretty well. Isaac has taken his full feeding from a bottle many times, but still has yet to take a full feed while nursing. He's gotten pretty close at 32 mls (out of 35), but we're still working on it. He's been having a tough time gaining weight, so they upped the calories in his milk (they supplement the breast milk with progestimil powder to add much needed calories). Yesterday he was at 4 lbs 9.7 oz.

He's still on the FP cannula at 3 liters O2. Eventually they will wean him down to 2 liters and then off, but for right now they'll keep him at 3. He's been slowly going down on his O2 requirement and is now at about 25-26% (the goal is to get him to room air which is about 20-21% O2).

As for me--I am soooo ready for Isaac to come home. I thought I was ready all this time, but I guess I wasn't. Now that I am truly ready, I can tell the difference. It's getting really hard to wait when I know that it shouldn't be too much longer. They aren't giving us a time frame, but I think there's a good chance Isaac will make it home by the end of April. (Holy Cow!)

I don't want to focus on how hard it is getting to wait, but I am unbelievably tired of caring for Isaac in the NICU. Despite how much we have to be grateful for, for the unbelievable care and competence of the NICU staff, for how beautifully Isaac is doing, I am SO READY for him to come home. (but still very grateful and happy :)

Today was a perfect example of how ready I am for Isaac to come home. Here's a synopsis of my day, which is actually pretty typical. (I don't always have Jonah with me, but I do much of the time).

Woke up. Pumped for 40 minutes while trying to keep Jonah entertained with a show and having him fill our easter eggs with candy for playgroup. Got myself and Jonah ready for the day. Made cookies for playgroup (cut up Pillsbury dough and put on baking sheet :) Called the hospital to see how Isaac's night went and told the nurse when to expect me. Pumped again.

Went to playgroup until about noon and then headed to the hospital. Jonah started begging for a drink (candy induced desperate thirst) and I realized we had left his water bottle at home. Went to grocery store to buy him something to drink b/c it was another 20 minutes till the hospital. Got to the hospital at 1 pm. Managed to get Jonah, my bag, Jonah's bag and my pumping supplies through the garage and up to the NICU all in one piece (that doesn't always happen).

Set Jonah up with a show on our portable DVD player and a treat to keep him occupied for a little while. Held Isaac while standing right next to his crib in case I had to put him down in a hurry to go chase Jonah. Held Isaac like that for about 40 minutes until Jonah got bored with his show. Entertained Jonah for about 30 minutes doing various ridiculous things like being his horsey, chasing him down side hallways of the NICU, (the staff is all used to us being there by now and are so fantastic about me bringing Jonah ) and looking out the windows and counting all the cars in the parking lot.

Gave Isaac a bath with the nurse's help--and Jonah's. It was easier to have Jonah help than to wonder what mischief he was getting into. (Jonah was awesome and terribly cute about it. He kept bringing me things like towels, hats and pacifiers for Isaac.) Screened off our whole section so I could feed Isaac with some modicum of privacy (right). Set Jonah up with a show and a treat. Unhooked Isaac from his wires. Weighed Isaac. Rehooked Isaac. Easter Bunny showed up and brought presents for Jonah and took a picture. Jonah wouldn't stay behind the screen because he wanted to follow the bunny rabbit around. Finally got Jonah settled. Fed Isaac for 15 minutes until Jonah started breaking free from the screened area and touching other babies beds. Weighed Isaac and put him back in his bed. Jonah reached his sitting still threshold. Brought Jonah to a pumping room and pumped for 30 minutes while Jonah climbed all over the bed and counter. Left at about 4 pm.

Crazy. Typical. Exhausting. Not that life with a new baby at home isn't all of those things anyway (this is good practice for me)--but......I am ready for Isaac to come home now. :)

Despite all this, I have been a bit giddy as of late. I am finally starting to feel joy again. The weight is lifting and I can see the end (of this stage) ahead. I am so happy knowing that my family will be together soon.

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up

As you wander through this troubled world
In search of all things beautiful
You can close your eyes when you're miles away
And hear my voice like a serenade

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up

---Dixie Chicks

I love this little boy so much. I am so immensely proud of him. All I have to do is look at him and the tears just start coming. I can't help it. He is such an angel. Jaska and I are constantly dumbfounded as to how we ended up with such great kids. I am completely in love with them.

Since Isaac is on the Fisher-Paykel cannula full-time it is much easier to hold him and cuddle him. Sometimes I can forget for a couple minutes where we are and just be a mom to my little boy. I have been able to start breastfeeding Isaac. For now, it's really only meant to expose him to the experience and not necessarily to be nutritive. But, Isaac is a total champ and knows exactly what he wants and how to get it. We weigh him before and after he eats (I am so getting one of these scales! How awesome is this? This would have saved me so much stress with Jonah) and today he took 26 mls from me which is almost as much as the 35 he gets in his feeding tube. I am so relieved. Breastfeeding Jonah was a nightmare and I've been really stressed worried about how it would be with Isaac. After all this, I didn't think I could handle another stressful eating experience like that.

We still have a very long way to go--Isaac is only strong enough to try breastfeeding once or twice a day for 10-15 minutes. But it is so incredibly healing for both of us, after all of this, to be able to do something so normal and natural. I get emotional every time. I can feel the weight begin to lift a little as we sit there.

He is up to 4 1/2 lbs. Hopefully that number will continue to rise---He needs to chub out a little more. He's been this size for weeks and needs the extra weight/strength to do all the things he's expected to do now-- maintain his temperature, breathe, suck, swallow and grow.

I've always known that I would go to hell and back for my kids--no question. But to actually go to hell and back with them and to be able to say with every ounce of feeling and love in my heart that it is so completely worth every single second is very satisfying. Cliche or not, love truly conquers all.

I cannot express how much this has been worth it. It's not over yet, but this has been the most affirming experience of my life--of the power (and necessity) of love, of motherhood, of faith, and of hope. And if I ever start to forget how amazing this has been (as if I could) I have my own little miracle to remind me every single day. My cup runneth over.