Thankful

This has been quite a year for our family. With the trials, has come an outpouring of blessings. Of course we all think about our blessings throughout the year, but there is that something special about Thanksgiving that makes it more poignant. I'll refrain from my long list of things and instead mention the one that has been most on my mind.

Of course, first and foremost is God's love. How could we have survived without it--the truth is we wouldn't have. Included in that is of course our wonderful little Isaac who is a daily manifestation of that incredible love. Truly one of the greatest blessings of my life.


Also, I am incredibly grateful for the CCMC NICU. What an amazing, caring and capable group of people. From that very first terrified visit, we knew we were in the best of hands and never worried about the competence of those caring for Isaac. It was palpable at times how much they wanted Isaac to get better and come home. We will remember them and their kindness forever.

Thank You

(I finally sat down and wrote this letter I've been procrastinating.)

Dear Newington/Wethersfield Women's Club,

At the beginning of this year, my family was shaken to the core when my son Isaac was born severely premature at 23 weeks. My water broke on Christmas day, and I spent an agonizing week on hospital bedrest, trying to make it just long enough so the NICU could try and save his life. He was born on New Year's Day and immediately whisked away to the NICU.

As you can imagine, it was a heart and soul wrenching experience for us. My husband and I struggled to make sense of what was happening and tried to adjust as quickly as we could to such a scary and foreign environment. His prognosis was pretty dismal, but we knew we had to have hope for him and for our family.

Those first few days were the scariest of my life. As I was facing the reality that my son may not make it, one of the nurses brought me this beautiful tiny blue blanket that your group had made. Such a small thing, but I cannot express to you the comfort it brought me. Our son was 1 lb. 9 oz. and only 12 inches at birth, and your blanket was just the right size for him. I remember thinking that if we lost him, we would have something soft and beautiful to wrap him in for his burial.

Amidst all the medical equipment, lights, and noises of the NICU, it was such a comfort to have something so soft and cuddly. He was too fragile for us to be able to put the blanket in his isolette, so I found myself holding on to it when I would visit. I can't say how much comfort it brought to Isaac, but it brought immeasurable comfort to me.

It has become one of our cherished items from our son's time in the NICU and something that will remain in our family to help tell the story of Isaac's birth. Thank you so very much for undertaking such a project. It meant the world to me and I just wanted you to know that your efforts were greatly appreciated.

I am happy to be able to tell you that Isaac overcame every hurdle thrown at him and after five months in the NICU, came home with us this summer. He is a remarkable miracle and is doing beautifully. I am so looking forward to showing him this tiny blanket and telling him the story of how he came to us.

Sincerely,

A NICU mom


This month is National Prematurity Awareness Month. I have all kinds of posts swimming in my head, although I will probably only get to or actually post a couple of them.

To kick it off here's some quick facts for you.

In an average week in Connecticut:

810 babies are born
55 babies are born to teen mothers (ages 15-19)
59 babies are born to mothers who receive inadequate prenatal care
81 babies are born preterm
63 babies are born low birthweight
4 babies die before their first birthday

Click here to visit the March of Dimes website.

Isaac had an appointment with Neurology last week. It was a follow-up, checking on his progress in the time he's been home to see if there are any warning signs that would indicate mental delay or damage. Because of his severe prematurity and CMV, there is basically a long list of things he's seriously at risk for. Cerebral Palsy, mental delays, seizures, deafness, blindness, and the list goes on (and on).

Isaac passed the evaluation with flying colors. :) The doctor was quite surprised that he is doing so well. She was very happy about it, but also amazed. She was asking about Isaac's name, and she said, "I hope Toivo means something like miracle in Finnish because that's what you've got here--a miracle baby." I responded, "Yes, we certainly do," and gave Isaac a little squeeze.

As I told her that his name means hope, I couldn't help but think about all that that word means to me now. Our fledgling hope at the beginning that Isaac would be fine turned into a stronger beam of hope and then faith as time went on. Now? Somewhere during that process, hope turned to belief and belief to knowledge. There are no more doubts in my mind as to Isaac's future. I know that he will be fine--both Jaska and I have known that for some time now. Every doctor who says the same only confirms what we already feel.

There are still some things for him to overcome--he's sick right now with a basic cold that has taken a downturn and essentially ravaged his little body. He's back on steroids and we're trying to kick it with a strict regiment of tlc, meds and many fun adventures with the nasal bulb syringe. (You should see how much he hates that--it's almost funny how mad he gets at us. I'm sure his "roid rage" doesn't help it much.)

Despite these small things (and they are small), he is, and is going to be great. I saw him roll over for the first time yesterday. He's been doing it in his crib a lot (we know because he starts yelling because he can't get back the other way :) but it was the first time I actually saw him do it. I couldn't help it, I started crying.

It's one thing to believe that he will do all these things. It's another to actually watch him do it. It was too much for this mama's heart. One of the many extraordinary gifts that has come from Isaac's life and journey is the fact that I will never take anything in his life for granted.


I'm not sure what he's chewing on, but it sure looks tasty! :)

Life Goes On

A very important thing happened this week. Most would not see it as such. There is no reason why anyone else should have noticed it. But this very small thing is a very great gift to our family.

With the ending of this week, Isaac has now been home with us longer than the time he spent in the NICU. Five months in, five months out. It is hard for me to imagine, but here we actually are. Lennon and Mcartney were right--Life goes on.

I remember that during some of our darkest days, the medical staff would tell me that there would come a day when our time there would feel so distant, almost as if it happened to somebody else. That Isaac's time in the NICU would be just a small part of his life--that we would have so many other things to think about and celebrate. I appreciated their support and wisdom so much. I knew they were right, but it was just so hard to believe.


I know there are many happy times ahead of us. I feel like we are finally embarking down that road to recovery. Slowly but surely, my memories of Isaac are filling with his bright smile and infectious growls instead of isolettes, machines and surgery dates. I am finally able to look at his earliest pictures without breaking into sobs.

I don't want to replace my memories of our time in the hospital. They are just as much a part of us as he is a part of us. That experience shaped me and honed me and taught me the greatest lesson of love that I will ever learn in my life. But I don't want that time to forever be a shadow and pain for us either. I don't want it to always be something I have to "get over". I want to embrace it for what it was and is and weave it into the story of our lives and do it with joy. I want to do it with acceptance for the miracle it was and is and the profound struggle that it continues to be.

In order to be able to do that, there is a natural path to grief and healing that we are still walking on and it is definitely going to take some time. I need to be able to feel what I feel about this experience and acknowledge it--even if it scares me--and then move on. That is the part that most don't see.


I was in a joyous state of shock when we first brought Isaac home. I would love to say that in the last five months everything has been restored in the happiest of endings. In some ways that is positively true. Isaac is an amazingly special little man and having him home with us is more than I can put into words. I guess I was secretly hoping that once Isaac came home though, that God would give me a pat on the back and say, "Yup. Job well done Jenn. Welcome to the end of that pesky enduring to the end stuff and put up your feet. Here's some cocoa."

Apparently my Heavenly Father and I have VERY different ideas regarding endurance and what I can handle :) Upon Isaac coming home, I was finally able to let go in a sense, and as a result I essentially fell to pieces. It's been a really tough summer, exacerbated by Isaac's continuing reflux and health issues. There's some reconciliation that has had to happen with the hope and ideal we had in our hearts, and the reality of caring for a baby with medical issues when you are still emotionally and physically ravaged.

I don't blame them at all, but people only want to hear about the happy ending--how beautifully Isaac is doing, how wonderful it is to have him home. I love sharing that joy because it is my joy as well. But despite this incredible miracle, we are still left with this other piece--the human piece and God doesn't take that part away. Just like our time in the hospital, He is allowing us to feel everything and experience everything.

He just isn't making us do it alone.

That is the real miracle for me and the truest life lesson I will ever learn. That even though I have been brought to my knees more times than I can count, that even if Isaac hadn't made it, it is okay. God has been right here with me, pouring out His love and confidence in me and showing me the way to not just survive, but thrive during the darkest days I have ever known. He does not take it away, but instead shows us the way to overcome it and in so doing overcome ourselves.

I have a living breathing reminder every single day of God's insurmountable love for us--for me. For my beautifully strong and remarkable child who wanted to live. I am reminded constantly of the power of Jesus Christ to take on all that we cannot bear. That through Him and because of Him, we can do all things. That my friends is the real miracle.

Life goes on, and ours is too. And it will be filled to the fullest extent our hearts can hold. I believe fully that the greater the pain, the greater capacity for joy. We are so profoundly blessed.

Developmental Evaluation

Isaac had his first developmental follow-up appointment today at the Neonatal Clinic. There was a few people at the appointment--a nurse, a developmental nurse, a physical therapist and the neonatologist. Basically they played with Isaac for 20-30 minutes and evaluated his development.

(They base the evaluation on his adjusted age of five months. Until he is 2-3 years old, they look to see if he is on par to where he would have been if he was born on time. )


They determined that he is a bit behind in his development. Not in everything, but definitely in his muscle tone and motor movement. They said he was where they would expect a 3 1/2 month old to be. He has had so many strikes against him with being born so early and then being so sick in the NICU with his CMV that his body just wasn't doing anything beyond fighting being small and sick for so long. I know he will catch up from that, but it may take a while longer than I hoped.

I think the hurdle in his development since he's been home is his reflux. We give him as much "floor time" as we can to strengthen his muscle tone, but whenever he's not upright, his reflux really acts up and then he won't eat all day. I know he hasn't been getting as much time as he needs to strengthen his muscles. It's so frustrating.

The good news is I think we finally found a good stride with his eating. Fortifying the breast milk just wasn't working. The formula really exacerbated his reflux. We finally got him on a super gentle formula, similar to the Progestimil he was in the NICU, but while it didn't worsen his reflux, he simply refused to eat it. He would take only about half of what he should be getting--basically enough until he wasn't hungry anymore. I tried for a week to make it work and our stubborn little guy won out this time. :) So--he's back on just breast milk and in the three weeks he's been on it, he's gained a whole pound. A POUND people! After two months at 11 pounds, he finally made it to 12 pounds. I couldn't be happier! On just the breast milk, his reflux is back under control and he is eating like a champ. It was a struggle to get him to eat over 80 mls, every three hours. Now he's taking 120-150 mls!


So now instead of focusing all my time and attention on getting him to eat, I can focus it on getting him strong.

Other than that, he is doing so fantastic. He's back to his goofy self. He's still a bit of an attention whore who will yell at us until we pay attention to him--then he'll flirt and laugh and talk like he's been storing it up for days (even though it's just been an hour or so).

He's sleeping well and on a pretty good schedule right now. He'll sleep from about 7pm to 7am with a sneak feeding at 11pm (we feed him without waking him up). He takes a two hour morning nap and a three hour afternoon nap.

One other good thing that came up in his evaluation is his head size. Apparently his noggin is huge. :) Which is a good thing. He's still at risk for some pretty serious neurological damage as a result of his prematurity and CMV. Having a big head, means he has a big brain. When the brain is healthy, any nourishment the body gets, goes to the brain first. It's a great sign for his mental development.

We love our little man so much. He's really put us through the ringer since coming home--but it's still so worth it. We are so happy he is home with us and that we get to raise such a special little man.

I HATE Reflux

There are days when I am completely blown over by how hard motherhood is. Days when I use nap/rest time to just cry at how overwhelmed I feel. In the midst of those days (today being one) I am still my children's biggest fan--but so at a loss as to how to hang on. I love my kids to the moon, so I can't stand it when I can't give them what they need. For Isaac--some peace and comfort. For Jonah--more quality Mama time that isn't interrupted by a screaming Isaac.

This hasn't been an angry day/week (but you can bet your buns I have had those), but instead a sad one. Isaac is really struggling right now, and as a result we are all struggling. Forget Mama, in our house the saying goes, "If Isaac ain't happy, ain't nobody happy."

It's just been never ending the last few weeks. His reflux is totally out of control. He refuses to eat and hasn't gained a stitch in a month. He just grumps and screams all day because he is miserable. I seem to be the only one who can get him to eat anything, and lately that is not much--even with all my cajoling tricks.

I'll spare you all the horrid details--it's not pretty. At first I was able to maintain my sense of humor. What's a little puke after all? The puke doesn't really bother me, and he actually doesn't do that often anymore. It's the screaming all day and refusing to eat that has brought me to my knees.

Many have offered to take Isaac for a while and I really want to accept that offer. But, I know that it wouldn't be at all relaxing for me. I would be distracted by wondering how much he was screaming and as a result how many ounces he lost and how long it would take to gain it back. He's eating every 1-2 hours right now, and the schedule he was on is now shot to hell. I wouldn't even know what to tell anyone who tried to watch him--"Um, well he WILL scream. Aannnddd...it could be for any reason at all--good luck figuring it out! And, he may puke on you." I don't think so.

Poor sweet boy. Poor sweet both my boys. Jonah has been such an angel through this, but he still needs his Mama. He's been very patient and I am heartbroken that after all of this--after the NICU, Isaac's early no sleeping months, moving--that Jonah STILL has to wait way to much and way too long for time with his Mom.

I know this will pass. I've been on the phone today seeing if we can get some things switched around to make Isaac more comfortable. Every day isn't so overwhelming, but I am reaching the end of my ability to cope.

(Sigh) I know that this is what it means to be a parent. It is these types of experiences that weld us so tightly to our children. These types of experiences, that when we look back we can say, "Yes, I have been through fire and hell for you. But I would do it again. And again. And again. Because you are just too darned cute and wonderful I can't seem to help myself. But boy watch out, because there's some serious payback coming your way when you get some muscles and I need some yard work done."

August 14, 2007

Oh Happy Day! Isaac had his pulmonary appointment today. The doctor gave the go ahead to take him off oxygen entirely. No more oxygen. Hopefully ever. Whoo Hoo! I got kind of emotional--I couldn't help it. I just can't believe we are finally here. Sometimes it gets hard to imagine life without all this extra stuff.

We're going on vacation in a couple of weeks and be still my heart we'll be doing it without oxygen, without a monitor, without leads, without masks. Wow.

Isaac's reflux is still acting up. He's still 11 lbs. Erghhh. Just grow dude. We'll get there. He can't stay 11 lbs. forever.

July 27, 2007

I decided to prop Isaac up in front of a mirror to see what he would do. The dude seriously couldn't get enough of himself--it was hilarious! All these photos are of Isaac in the mirror.

Isaac is the rock star champion baby of the world--and me--blissfully, lucky me--gets to nibble on these sweet cheeks every day. In a word--yum.

July 18, 2007

Isaac has finally broken the 10 lb. barrier (10 lbs 2 oz today)! My wager is that 9 1/2 of those lbs are in his cheeks. :) His growth has continued to be sporadic since coming home. It was that way all through the NICU and PICU, so I guess I shouldn't be surprised. It's just so frustrating to have him go so up and down. He'll go literally 2 weeks without gaining anything at all--and then pack on the ounces for a week. Right now he's going through a refusing to eat stage which is SOOOOO fun. It really stresses me out.

Later in life when he complains to me that he's the size of a hobbit--I'll just have to say, "Well dude--you should have eaten more!! And besides, hobbits are cute."

July 11, 2007

Drumroll please..... Isaac had his Pulmonary visit this past Friday and was given the green light to be taken off O2 during the day. Yahoooooooo! What this means really is that whenever he is awake, he can be tether-free (he still needs it to sleep). He is actually a pretty good napper and still sleeps much of the day, but it does give me a 1-2 hour block of time a couple times a day to go run errands or go play without the blasted O2 tank. Ahhhhh...

I didn't realize how cumbersome it really was until now. I feel so light and free. :) We made an excursion to Trader Joe's yesterday without the O2 and while we were walking around the store, I was thinking--"Hmm...something feels different..what is it? Oh! I know--everyone isn't STARING at us!"

Wherever we have gone for the last 2 months, we get stared at. I totally understand why--people are naturally drawn to little babies, and one with O2 draws more attention. However, I prefer to be invisible most of the time--especially when I'm dragging my two crazy kids around and usually looking less than my best.

It was so-oh-oh nice to be able to just go to the store. So fabulous. Plus Isaac looked so totally handsome without his tube and was positively flirting he was so happy to be without it.

He is hovering at just under 10 lbs and is still doing great. He's happier more often than not and is a great sleeper as long as he's in his bed :). Right now--I'll take it--at least he's sleeping. He loves Jonah and gets so excited when we talk to him and he wiggles and talks right back. He's even venturing out to give smiles to perfect strangers! Who is this kid? :)

We still have some bumps in the road--despite how awesome he is doing, he definitely has some special needs and requires more care and attention than a full-term baby would. We do our best to take it in stride though--it's easier when we focus on how well he's done since coming home. He clearly loves being with us.

All This Just To Breathe

Doesn't this thing look like R2-D2? I occurred to me that I haven't posted any pictures of Isaac's machines, etc. So for those who are interested, this is his "stuff".

Above is his large O2 tank--it lasts 1-2 weeks and has a 50 ft cord that we drag all over the house with Isaac. The other end of the cord is of course in his nose.



All of Isaac's meds that he gets twice a day. He hates them with a passion (some taste positively vile) but gets them mixed in with his milk twice a day anyway in a nasty orange brew of yuch. Mmm..Mmm..Good.





Isaac's inhaler and "spacer". On the right side is the inhaler that is connected to a chamber with a mask on the other end. He hates this as well, but I can't blame him--who wants a mask over their face 4 times a day with a nasty med getting sprayed in their face?




Isaac's apnea monitor. A cord connects the monitor to two sticky leads on his chest that monitor his heart rate and breathing while he sleeps. It goes a long way for peace of mind that he won't stop breathing--not so far in the interrupted sleep for the rest of us department.







Isaac's Nebulizer. This is a plugged in version of his inhaler, that distributes the same meds through a mask for about 15 minutes. It's supposed to be more effective than the spacer, but Isaac is just too squirmy. We haven't used this much yet.

(I forgot to take a picture of his portable O2--but there's that as well--it lasts 12 hours when full. We take that one out and about. )

June 13, 2007

Isaac is a "thrasher", so often we have to bundle him up so he doesn't freak himself out (or wake himself up) with all his enthusiasm. We usually bundle him up like this to sleep. It works wonders.








I was able to get a fleeting smile--He was smiling a lot, but would of course stop when I put the camera in his face.

Sleeping Buddy

Since Isaac is a "newborn", we have the slew of sleeping baby pictures for you.

I am the champion! (He's slept like this from the day he was born. Do all babies do this because I think it's hilarious)





















We'll do whatever is necessary to keep him upright (so his reflux doesn't act up)

May 29, 2007

So our sweetie little Isaac curently has some serious "roid rage". We had that cold scare last week so the MD put him on a five day course of steroids to help him breathe better. I'm embarrased at how long it took me to realize what his deal was (the same thing happened in the hospital). He has been so angry and I haven't been able to figure it out. (In my defense I'm not getting whole lot of sleep). Steroids to help breathe=good. Crazy raging infant=bad. I wish I was getting more sleep and could appreciate the hillarity of it. He basically has anger management issues and tries to be a little tyrant. The tiniest thing will set him off and he'll start raging. If you think about bulked up men (and women) on steroids and all the rage they carry around--that's Isaac right now. As Jaska put it yesterday, "Isaac and I are in a fight."

On another note--I have to say I am loving having an apnea monitor at home. When it goes off it is enough to wake the dead. It's like one of those foghorn things that cops use at parades. It is sooo bloomin' loud! Despite that, the benefits are far outweighing the annoyances. For one, it's peace of mind when he's sleeping. But the total unexpected bonus it that I can put him to sleep on his tummy without a single worry of SIDS. With his crazy reflux that is everything. It helps his reflux a lot and he sleeps pretty much like a rock. I'm going to ask if we can just hang on to the monitor even after he doesn't need the O2 anymore, so we can keep putting him on his belly until his reflux abates. They should send home one of these with every parent bringing home a baby.

On Second Thought...

After giving it some thought, I decided I wasn't ready to say goodbye to this blog. I guess I was thinking that it would be gratuitous to have this blog and our family blog once Isaac came home. In some ways that is true. But there are too many things I find myself wanting to say as I deal with the aftermath of all of this.

We're still dealing with our emotions on this one. A friend pointed out to me that people need to know what happens after a preemie comes home. I guess since Isaac has done so well for the most part, I didn't know how to approach that.

Our family has some baggage. I guess you can't go through something this traumatic and not. There are days when I just sob. Days when my heart is so light, I'm surprised my feet don't just lift up off the ground. Days when it takes every amount of energy and presence of mind I possess--just to get out of bed.

Since blogging seems to be my therapy of choice, there's been so many things I want to say and it just makes sense to say them here. Mostly though, I want to give anyone following our story updates on Isaac. I have come across people who have read this blog or recommended it to others based on a shared experience of having a preemie in their lives. I want them to know the rest of the story.

I will pull in a few posts from our family blog starting in May when Isaac came home and then continue from there as we feel the need to update.

Home at Last

Since Isaac is finally home and a part of our family, we are going to post all of his updates from now on in our family blog. Please visit us anytime at www.joyofjonah.blogspot.com for updates on Isaac and Jonah and other fun stuff.


Thank you again for your prayers, your love and support. It has meant the world to us and has truly sustained us during the last five months.

Okay--update time. Overall Isaac has been doing well since coming home. He was about 7 lbs when he left the hospital, and two weeks later is 8 lbs and change (I know! 8 lbs!). I'm ecstatic about that--especially since he's only getting breast milk. For his height, he's totally obese. It's great. He's got rolls everywhere.

The first week was a real challenge. Isaac's reflux was really bad and he wouldn't sleep at all at night. Jaska and I were complete zombies and I was secretly terrified that this is how it would be for the next 6-12 months. Luckily, things began to settle down this week and he actually sleeps in between eating at night.

We had a scare this week and almost had to bring him to the emergency room. He had been coughing constantly for a couple of days and at first we thought it was his reflux acting up. He started running a fever on Wednesday evening and was completely miserable. He wouldn't eat anything and wouldn't sleep. Our first thought was to take him in to the emergency room, but then we remembered that we have this network of specialists, on call nurses, and doctors to go to during just such a time. So we called his Pulmonologist (Lung MD) at about midnight and he talked us through it and prescribed some steroids for Isaac with the plan that if he didn't get any better by morning we would admit him to the hospital.

Thankfully, by morning he was doing noticeably better. His at home nurse came the next morning to check him out. We happened to have an appointment with Pulmonary two days later, so he was able to be evaluated without having to be admitted to the hospital. By then he was doing basically fine. It appears as if he caught a little cold or virus--weird. Very scary, but we got through it.

Other than that--Isaac is basically your typical newborn. Neurologically and developmentally he is one month old. He's right on track for that age developmentally which is awesome. He puts his hands in his mouth, tracks objects, stares at us and anything interesting with profound interest. Normal stuff, but it is so exciting for me because every milestone he meets means only good news for his prognosis.

We are finally settling in to being a family. It's funny how much you forget about newborns until you have another one. Constantly Jaska and I are saying, "Oh yeah--I remember this part." (and not always with fondness :)

Jonah is the best big brother ever. We'll catch him hugging (very gently) and singing to Isaac all the time. He gets embarrassed when we catch him, but it is so very sweet.

The Smell of Puke in the Morning

So--obviously we haven't posted in a while. Mostly because we are crazy exhausted and overwhelmed, but also because I don't really know where to begin. I feel like I should write down all my feelings about Isaac coming home, but since I don't have the emotional energy whenever I have a minute, I just put off writing anything. (Just know that we are beside ourselves happy and content with having our boy home. It's been crazy, but worth every bit.) So--I'll get to that aspect another day and instead deal with our cold hard reality--in a word: Puke.

Puke? Yes, puke. Or if you'd rather, vomit, upchuck, spit-up (HA!) wretching, cookie tossing--whatever you like. Essentially--our lives right now are centered around the fact that Isaac has some awful Reflux. He's on medication and we basically have to keep him upright 24/7 but he still pukes on us regularly. Just so you know it's not baby spit up type throwing up but exorcist shoot across the room type of stuff.

Frankly--it's awesome. It's gross obviously, but we're mostly just amused by it. It's kind of entertaining to watch--not so much so on the cleaning up part. There was one morning this week where the sun was shining, the birds were chirping and I was thinking, "What a lovely morning--I can almost smell the springtime." And then I got a nice whiff of the soaking bucket full of puke clothes.

I wouldn't be so glib about it if it was more serious--it may become so in the future, but right now it's more of an annoyance than anything. If he's puking so much he stops gaining weight, then we'll have a problem.

Welcome Home Baby Isaac

(I've been putting together this video for a while, I just had to put in the pictures and video of our final days in the hospital and Isaac coming home. But wouldn't you know it, the day Isaac comes home, our camera breaks--taking with it all the pics and video I've been meaning to use to finish this video--erghhh. (Irony thinks it's funny--I told it to shut up. ) So--it's not the way I wanted it and as soon as we get our camera back from repair I'll put up the pictures that are stuck on there of him coming home. )

Isaac having a conversation with his animal friends

He loves to sleep on his tummy. He totally zonks out every time

I brought Jonah with me to the hospital and we had a great (but stressful) day. There is a playroom with all kinds of toys for Jonah to play with and so he never wanted to stay in Isaac's room. I finally convinced him that it was a good idea (I needed to pump) and so I set him up with a show and the PCA brought him a Popsicle.

I had a hard time seeing Jonah because I was pumping on the other side of the crib, and after a few minutes I couldn't hear him anymore. I assumed he was really into his show, (Backyardigans) but this is what I found when I was done pumping. (Notice the red Popsicle stain :)

Yay! I found a computer at the hospital. We have a laptop, but the wireless capability broke a long time ago when Jaska dropped it on the bus (not his fault).

One of my laments is that I cannot write more of the day to day happenings of our lives in the hospital. By the time I have time to sit down to write, I only have the time and energy for the biggest most pressing things--like pictures :) (I promise--soon. He is the cutest thing ever and such a big boy now).

I just finished feeding him. He's been having all kinds of issues with feeding lately. He's got some mad reflux which is fun if you're partial to kid vomit all over you (and the screaming is fun too). Yummy. He's also super gassy--which for those with babies, you know how unhappy everyone is when that happens. We (in otherwords--me) are in the process of trying to figure out what is causing it. As long as Isaac is gaining weight, the docs don't seem all that concerned as to whether he is super fussy or screaming or won't eat well. It's very frustrating and just makes me want out of here even more so I can figure it out.

Despite his eating issues, Isaac has been gaining weight the last couple of days. The plan as of now is to give him until Thursday. If he's still gaining weight then he'll be taken off the O2 for a few days. If he does well and still gains weight then he can go home without the O2. Otherwise, he'll go home with it. Either way, it looks like Sunday or Monday is the day. That's of course assuming no other issues pop up. I'm not holding my breath (ha. ha.)

The only things I can imagine would postpone him from going home is if he needs hernia surgery, or if he has some sort of G.I. problem that is causing his discomfort beyond gas.

We'll keep ya'll posted.

Sorry to all who've wanted updates--to say we are exhausted doesn't even begin to cover it.

They moved Isaac over to the Child Breathing Program on Wednesday night. Jaska and I have been trading off staying at the hospital each night since. I'll stay during the day, and then one of us will stay the night.

The new floor of the hospital that he is on is very different from the NICU. For one, Isaac has his own room--nothing fancy, it's just a hospital room, but it's still a room. Also, no one knows Isaac and his quirks and disposition, so Jaska and I really have to take the lead in his care. I have to make sure the nurses do things a certain way, at certain times, etc. I tell them how much he eats, etc. This is really great--but also really exhausting--having to be aware like that all the time, making sure they are doing what is best for Isaac. We are also in "training" to bring him home--so we have to prove that we can care for him on our own--give him his meds, feed him around the clock, handle his O2, etc. Add to that the fact that Isaac has had a really tough time transitioning to his new home and we are so beyond spent.

Having to do the toughest/most exhausting part at the end is just torturous. Our energy levels are already at zero. The last 2-3 weeks have been without a doubt the darkest and most difficult of my life. We are trying desperately to hang on to our sanity and keep our family together. We weren't prepared for all of this--we thought he would be going home from the NICU. It's a necessary step for Isaac, but one we weren't prepared for.

Isaac has had trouble with reflux which has been acting up since his move. He refused to eat for three days--which was my favorite thing ever. Being there while he screamed and screamed for three days, knowing that for every minute he cried was expending valuable energy and basically ensuring an extended stay in the hospital sent me spiraling down into despair. We are trying desperately to get him home, but it just feels like things are stacking up against us. I have tried to remain positive throughout the last four months--for lots of reasons, but I admit it's mostly for my own sanity. This week however, I ran out of energy to fight my despair. I've been a total zombie. Every scrap of energy I have had, has gone to Isaac and Jonah--and to repeatedly trying to pull myself together to keep from losing it.

Today was the first bright day in a couple of weeks. Nothing about Isaac's status changed, but I was finally able to muster enough spiritual energy to see my blessings and be grateful for what I have been given and to just enjoy the time I had with my boys.

The plan for Isaac was originally to send him home at the end of this week. He passed (barely) both of his stress tests that measure how he does without O2. The plan was that if he passed, he would be taken off the O2 for 3 days. If he continued to grow, he could go home.

Because he just barely passed his stress tests and because he has been losing weight--his discharge has been pushed back a bit.

Isaac finally started eating well today, so I'm hoping things in that department are on the up. If he gains over the next day or two the MD will probably take him off the O2 and see how he does. The MD would rather send him home on the O2. We're fine with that, but since he is so close to not needing it, we want to give him a fighting chance to come off of it before he comes home. She seems pretty flexible, so I'm sure we can come up with a good plan for Isaac.

I am aware that Isaac could come home next week, but I've grown a bit cynical. I'm in this, "I'll believe it when I see it" mode. It's just too hard to hope for it and plan for it, only to have it changed again and again. I'm just going to stop thinking about it and try to get through today.

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.