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.