Tuesday, November 30, 2010

You know you're a NICU mom when. . .

It is the end of November already? Really? That's just crazy. I didn't get in as many posts as I wanted to, but it was the first time I have been able to find the words to write out Noah's story and that was very good for me.

I decided to forgo the preeclampsia post for the sake of moms and grandmas, but let's just say apparently I'm a drama queen. Severe preeclampsia occurs in less than 1% of pregnancies and almost always with contributing factors like preexisting high blood pressure or carrying multiples or something. Not me. I think it kind of drives my doctor crazy, because every time we go she asks, "are you sure no one in your family has had this before?"

This leads to my soapbox for pregnant women, which is to go to all your prenatal appointments, and if something feels wrong, GO TO THE DOCTOR. Even if someone else tells you it happened to them and was fine or this book says to do that and you'll be good to go. It is your body and if you think something feels off, then it probably is. If I hadn't of gone in when I did things could have turned out quite differently for me and Noah. (Even though I was no good at being pregnant, my doctor said I am a perfect patient. At least I got that part right.) Okay, soapbox speech over.

I have been working on the following list for a while, and it seems like a good way to end Prematurity Awareness Month. (It probably only makes sense if you've been through it, but I think I'm pretty clever. :) So here it goes.

You know you're a NICU mom when. . .
1. You have to answer the question "how old is your baby?" with two ages.
2. You honestly forget that you can go out in public with your baby.
3. You involuntarily cringe every time someone touches your baby.
4. You have the strong desire to wipe down anyone that comes near your baby with hand sanitizer.
5. When you hear the word "baby" the first picture that comes to your mind includes tubes, wires, and an isolette.
6. The guest service people at the hospital stop asking "how can we help you?" and instead ask "when are you leaving?"
7. You know your way around the hospital so well you direct people in the elevator.
8. "Kangaroo" is a verb and "feed" is a noun in your vocabulary.
9. You know what CPAP, NG, OG, PICC, UAC, UVC, CBC, and TPN mean and can use them in a sentence.
10. Diaper changes are now a breeze because they do not involve wires, alarms, or isolette hand holes.
11. Deep down you think that if it's not how the NICU does it, than it must be wrong. (I think this is why I cannot bring myself to use anything other than Pampers diapers and Ivory soap.)
12. NICU nurses=heroes
13. When you get new pictures of your baby, they go in the mail to grandparents, great-grandparents, and the NICU.
14. You randomly cry at the sight of your baby.
15. Being able to hold your baby whenever you want is one of life's biggest thrills.
16. You can put together and use a breast pump in the dark. (This is not an exaggeration; I did this while we lived at RMH.)
17. Your schedule was built around pumping for months.
18. You wait for a timer to go off when you wash your hands.
19. Your box of baby mementos includes a blood pressure cuff that fits around your finger, a pre-preemie size diaper, and a CPAP helmet.
20. Your baby has a longer medical history than you do.
21. You can think of more things to add to this list.

The official Prematurity Awareness Month is over, but remember:
Prematurity can happen to anyone.
Miracles happen.
We need to fight, because babies shouldn't have to.

Sunday, November 28, 2010

Thanksgiving pictures

We had a wonderful Thanksgiving and have soooooooooooo much to be thankful for! Like. . .




a pretty table with delicious food

especially the sweet potatoes!

our Noah

Wednesday, November 17, 2010

Our Story, Part 2--Fight for Preemies 2010

As promised, Part 2 of our story. It is so hard to put those three months into words. I picked some of the most important things to me and hope it gives a good snapshot of what it was like.

For Noah. Our miracle, our fighter, our joy. Who fills a part of me I didn't even know was empty. Who gives me motivation and inspiration every day. Who reminds me what is really important and to embrace the ordinary. I love you.

December 16, 2009

It was a very exciting day in my recovery because I finally got to say goodbye to the ever-present IV pole and get my staples out. I was doing so well that they discharged me a day earlier than planned. Those walls were really starting to close in and I was ready to be out. We decided to go home for a night and pack things to bring before we moved into the Ronald McDonald House, knowing that we would probably be there for around 3 months. Leaving the hospital with no car seat and no baby sucks. That's all there is to it. As we went up to the NICU to say goodbye to Noah (see how wrong that sounds), they said that they were going to take him off the ventilator. Our car was parked in the hospital entry and we were worried about getting in trouble so we were just going to go. The NNP said, "This is a really big deal. You stay; I'll call security and make sure nothing happens to your car." Sometimes NICU parents need someone else to think for them. And so we got to see Noah's little face all uncovered with nothing on it, something that would be a rare sight for the next months. We got to those ridiculously long eyelashes. And that "little old man" face that preemies have because their skin is so wrinkly.
Not more than a few hours being home we got A call. The kind of call every NICU parent dreads. I am so glad I have Corey, because I literally couldn't speak or function when it happened. They said that Noah's lungs had hemorrhaged--he had lost a lot of blood, had to be resuscitated, put back on the ventilator, and would need a blood transfusion as soon as possible.

December 18, 2009
Noah had been doing very well, so they took him off the vent again. And the same thing happened. And we got a phone call at 1:00 AM and wondered how many more times that would happen, or if we would lose our son.
(They never did 100% figure out what was happening. Many tests showed that his lungs were fine, so it must have been something with his throat. They gave him 10 more days on the vent and the third time it came out he was fine. It was a rough couple of weeks.)

December 24, 2009
I love Christmas. I love the music and the decorations and the traditions. I love what it means. I love thinking about Mary and Joseph and baby Jesus and the wisdom of God's rescue plan and the part a family and a baby play. This is not how I imagined spending the first Christmas with our son. My family drove through a storm to be with us on Christmas Eve. A family came to the Ronald McDonald house and cooked a Christmas dinner. It was not the same. But there was lefse. And sausage in the stuffing. And little things like that made it better.
AND we got the most wonderful Christmas surprise ever. And now I love Christmas even more.
--First a little round of NICU definitions. In the NICU, "kangaroo" is not a fuzzy Australian animal; it is a verb, and is one of the most wonderful words a parent can hear. A preemie's skin is very sensitive and they are not able to hold their own body temperature yet. So of course just scooping them up whenever you want is completely out of the question. But they learned that skin-to-skin contact literally helps them grow stronger and faster. ("The power of a mother's" touch is so much more than just a cliche.) And so the practice of letting parents hold preemies skin-to-skin on their chests was started, and named "kangaroo care."--
That evening when the NNP made her rounds to check on Noah she asked "Have you gotten to kangaroo yet?" I said that no, we hadn't. She said, "I think we could give it a try now. Do you want to go for it today?" My response was, "Is that a trick question?" She explained that most babies don't make it for too long the first time and they would have to put him back if his stats started to drop. I said I understood. Then we had to wait for an RT (respiratory therapist) to become available to help move him. He was still on the ventilator and had so many tubes and wires attached to him to it took two highly trained professionals to hand me my baby for the first time. It was 11 days after he had been born when I held my baby for the first time. He was barely two pounds and just a little bit more than a foot long when I held my baby for the first time. It was Christmas Eve when I got to hold my baby for the first time.
Being handed a two pound baby on life support seems like it would be a pretty scary thing. But I wasn't. I felt like I knew just how to reach around all the wires and cradle that teeny tiny body in my hand. And then he snuggled into me and he fit perfectly. He looked up at me and nothing could have been more beautiful. Now, Noah has been an "active" little guy since they day he was born and always wriggled around into crazy positions in his isolette. But as soon as he got to snuggle with Mommy, he was calm. And he did so well that I got to hold him for a whole hour. I love holding my son.

December 26, 2009
I got to watch my husband hold our baby for the first time. Awesome. Except for the part where Noah welcomed him to fatherhood by throwing up all over him. The nurses just laughed and cleaned it up and said that it wouldn't be the last time.

December 27, 2009
We realized that we really missed going to church and should find one to attend while we were there. And so we made a brilliant plan--got out the phone book and picked a church close to the RMH. We wandered into Knollbrook Covenant Church late and sat in the back. We liked the service and both felt very refreshed and reminded why God designed the Church the way we did. We need each other. We intended to slip out the back and try a different church the next week. God had other plans. We sat behind a couple that had had twins in the NICU twenty some years ago. They offered for us to stay at their house the whole time we were there and we had lunch with them almost every week for the next 3 months. Most of the members of the church came and introduced themselves to us. When they found out what brought us there, we were offered any help we would need. One couple said "we are taking you out to lunch right now." We left feeling overwhelmed and thinking that this is what the Church is supposed to be like. We never did go to a different one. The next week our names were in the bulletin to pray for and the pastor prayed for us from the pulpit. I don't remember exactly what he said, but Corey and I both sat with tears streaming down out faces. Those were some of the most healing tears I have ever cried and I physically felt better afterward. I could go on and on about the blessings we received through that congregation. We hold the memories of Knollbrook near and dear to our hearts and are so thankful for how they took us in and cared for us.

December 30, 2009
We had planned that I would get to kangaroo with Noah that evening. Then the RT got called to something else. Then it was time to switch nurses. Then I started feeling sick so we decided just to go back to the RMH. I cried for a long time that night. It is just not right that someone else told me when I could and couldn't hold my own baby. This is not how it is supposed to be.

January 13, 2010
As I was sitting next to Noah's isolette and staring at him for another hour celebrating his one month birthday, it hit me: he is perfect. Even with the wires and tubes and where we are, he is perfect. I had always wondered how parents can say that about their kids, because let's just face it, nobody, babies included, is perfect. But when it is your own baby, you understand. When I look at him, that is what I think. Not perfect as in nothing is ever wrong, but perfect in that he fits into our family and completes it. He fills a part of me I didn't even know was empty. Perfect.

January 31, 2010
Noah and I started on the journey of learning how to breastfeed. Thinking about this little baby who still has tubes in his nose to breath, being fed through another tube, and weighing just over 3 1/2 pounds being able to breastfeed is kind of strange, but just another amazing way that God designed us. Noah knew just what to do; I was the one who needed more help. That was the first time that I had gotten to hold him in a position other that kangaroo style. It was the first time that I was doing something the nurses couldn't. It was good. Thankfully Noah was a good eater right from the start, and while it had ups and downs, the whole process went pretty smoothly. It made those hours and hours of pumping totally worth it. I confess: I used to think that it was weird when women said they loved breastfeeding their babies, and now I am one of them.

February 5, 2010
Crib Day!! It is a holiday when you are in the NICU. Because it means that you get to hold your baby whenever you want, a truly thrilling thing. And it is the first time you get to see your baby wearing clothes. Not to mention it is a huge step closer to going home. Yipee!

February 8, 2010
Noah got his first bath in a big boy bathtub! He did great. I've heard quite a few parents say that giving their baby the first bath was a very nerve-racking thing. I had one of the most qualified teachers in the country right there with me every step of the way. There are some pluses to the NICU experience.

March 4, 2010
This was my due date. Still in the NICU.

March 8, 2010
We were on the way to going home and had our hopes up and trip planned. But Noah did not meet the feeding amount requirements so they had to put the feeding tube back in. That was really hard. Getting what they considered to be enough food was the last piece before we could leave. At one point that day I was trying to breastfeed him and he just wasn't up for it or hungry or awake enough or whatever. The nurse came into check on us to find me in tears. She asked what was wrong and I said "I just want to bring him home." She said "I know you do, honey."

March 10, 2010
Noah did awesome eating and gained a lot since the previous day, so it was time for the real thing! They like families to do what is called a "room-in", where you stay with the baby in a room on that floor for a night, kind of a trial run. They gave us the go ahead to do it that night. But there were no rooms available. Grrr. Corey said, "Let's just ask if we can take him home. The worst they can do is say no." And so we asked the NNP. She said she didn't know and would ask the head neonatologist. He said, "Of course; they are ready." It feels pretty good to have the head neonatalogist say that about you. Those long days of sitting in a hospital with our baby paid off, and so off we went. Looking back, I think it was a good thing that it happened so fast. I didn't have time to get worked up or nervous or sad. Because as much as you want it, it is also sad to leave. The staff saved our baby's life and became our new family for three months. I still miss them. We took Noah's leads (for the monitor for his heart and breathing) for the first time and packed him into his carseat. And we got to put our baby in our car and take him home. When we were there I got to make the CaringBridge entry that I had been waiting 3 months for: "We are HOME."

November 17, 2010
Here I am participating in the March of Dimes "Fight for Preemies" blog event. (Wow, this ended up being long. Thanks to anyone that stuck it out. :) Noah is doing sooooo well and we are sooooo thankful. For awhile I kind of just put the whole NICU thing behind me and almost tried to act like it didn't happen. But it did. It changed our lives. And instead of denying that, it feels better to share it, to hope our story gives encouragement, to help raise awareness that it can happen to any one and that you do get through it, to give all the glory and thanks to our amazing God.
It is one thing to see those little diapers around during March of Dimes campaigns, it is another to know that they were too big for your baby when he was born and have one framed in his nursery to remind you just how far you have come.
No baby's body and no parent's heart should have to go through what prematurity puts them through. We need to fight--because babies shouldn't have to.

Tuesday, November 16, 2010

Our Story, Part 1

So tomorrow is the official "Fight for Preemies" blog event and the idea is to get many people to share their stories on one day to raise awareness for the reality of prematurity. As I started writing, I realized that it is going to be really long and so I better post the first part today. I have not written out the details of those first few days until now.
I did everything "right." I am overall a healthy person. I loved being pregnant. I felt great up until December 8. And then I became part of the statistics. Prematurity can happen to anyone and has many different stories. This is ours.

December 8, 2009
While driving home from doing some errands after work, I experienced something that I never had before--I was suddenly in so much pain that I started sweating bullets. My whole chest and abdomen felt like it was being stabbed and the thought "heart attack" crossed my mind. Somehow I managed to make it the rest of the way to my destination. "Luckily" that night it happened to be my parents' house instead of ours, which is much closer to where I was and to the hospital. "Luckily" Corey had planned to meet me there (I don't remember why) and had already eaten dinner. (I put those luckily's in quotes because I believe there was much more than luck at work there.) I explained to him surprisingly calmly how I was feeling and he called a nurse. They said since I was pregnant not to take any chances and go to the ER as soon as possible. So we did. And sat and filled out paperwork. (Okay, seriously, apparently the EMERGENCY part of ER is just for show. Once Corey thought he was having a heart attack and they did the same thing. I was mad. Rant over.) They took us straight up to a "birthing room" which kind of freaked me out because it had not even crossed my mind that this would lead to having a baby. I wasn't even even in the third trimester yet. Monitors were hooked up to keep tabs on baby, who was fine. Me, still in horrible pain. Eventually they said it was probably heart burn and gave me some meds and I felt like an idiot for going to the ER for that. But they don't mess around with pregnant people (thank goodness) and decided to keep me for the night until my regular doctor did rounds the next day. Enter night #1 of not much sleep and Corey sleeping on not comfortable furniture.

December 9, 2009
I felt much better and figured we'd be going home in a few hours, possibly on bed rest. We had visitors throughout the day. We got in trouble for laughing too much because they wanted to keep my blood pressure down as much as possible. At my last prenatal appointment my blood pressure had been a little higher than normal so my doctor said she would be watching it. (My normal blood pressure is really low, so the numbers weren't scary at all and we didn't think too much about it.) And made me do a fun thing to test for preeclampsia where you have to collect all of your pee for 24 hours. (Sorry if that is TMI, but it is important later.) It is to check for protein that isn't supposed to be there. That test came back fine. When she came in on this day she said she wanted to run that test again. Oh goody. She said she expected that I would go home after that on partial bedrest for a couple weeks. My blood pressure kept going up, and maybe that is why the decided to test it before the full 24 hours was up. It had the highest level of protein my doctor had ever seen (and she has seen many, many pregnant women.) I can still hear it clearly in my head: "We have no choice but to call this severe preeclampsia. I don't know what will happen so I am sending you to Fargo as soon as you can get two steroid shots to develop the baby's lungs. No; they can do the second one there; I am sending you as soon as I can get an ambulance." Some dear friends of ours just happened to be coming to visit as the doctor was leaving. They prayed for us and hugged us very tightly as our lives turned upside down. Then I got poked a lot and started on magnesium sulfate, which makes you feel like you are burning up. And sent on the most uncomfortable ride ever in a tin box on wheels, by myself. (plus the annoyingly talkative ambulance guy) I took my cell phone with me and one of my closest friends called while I was on the way. I remember the guy saying, "maybe you shouldn't answer that." But I did. I thought I sounded pretty normal, but she says not so much. Then I was put in the room where I would spend the next week of my life. A nurse got me checked in or whatever and left. I laid there by myself for I don't know how long and cried. It was horrible. Meanwhile Corey had to go pack some things and ask my parents to come with him on the first on many trips to Fargo.

December 10, 2009
We met with my doctor there in Fargo, who said "you are not going to be pregnant for more than another week." And there it was. He decided we would schedule the C-section for Monday when he came back on duty and see what happened. He said that if they needed to, they could have the baby out in 20 minutes. An ultrasound showed that baby was even smaller than they thought, only the size of a 24 weeker. The doctor said that meant that whatever was wrong with me had been wrong for a while. We also met with a neonatalogist who gave us some very good advice: "Do not Google 28 week babies. They are the bread and butter of the NICU. It is what we do and we will take care of him." He was right and supported us so much over the next 3 months.

The next few days were filled with ultrasounds, blood draws, and blood pressure checks. The thing is, as awful as it was, I have good memories too. Like Corey sleeping on the floor or chair next to my bed and holding my hand while I fell asleep. And all the nurses telling me how blessed I am to have a husband like that. And Laurie bringing me teddy bears and painting my toenails because I had to stare at them all day and it bugged me that they were ugly. And getting a package from my family with Christmas decorations and cookies in it. And using the "magic phone" to order food whenever I wanted and the lady at the other end telling me to go ahead and get some dessert. (That is when they let me eat. The first whole day the didn't. Or drink. Cutting off food from a pregnant women is cruel. And dangerous.) And setting up our CaringBridge site and having hundreds of hits within a day and Corey reading the guestbook out loud to me because my eyes hurt too much to do it myself. We are so loved.

December 13, 2009
I felt horrible through the whole night, so I think Corey and I knew inside that it wouldn't be too much longer. A nurse woke me up and checked on me literally every hour, and my blood was drawn every 3 hours. At around 6:30 the nurse came in and said, "Your platelets are way down. You are having this baby now." Later I learned my liver was swelling and doing bad, bad things, which explains the pain. They did all kinds of things to prep me, like making me drink the nastiest thing ever to do something to my stomach. The nurse said "Don't smell it, sip it, or think about it; just go for it." And sign a bunch of paperwork. The doctor said they would have to do multiple incisions and any other babies I had would have to be c-section as well. They wouldn't take the risk of doing a spinal block because the state my blood was in, so that meant being totally knocked out. This is a lot of information to take it very quickly but somehow we were quite calm and held it together. I guess because I had to be put under, they wouldn't let Corey be in the delivery room. He walked with us as I was wheeled through those infamous double doors. I remember he kind of just had to stop once we got there and one of the nurses said, "Wait! Did you get your kiss?" So they let him come give me a kiss and then sent him to wait in the waiting room by himself. I went through the doors at 7:30 and remember some things, like them putting up that big sticky sheet across my belly (not a reassuring thing) and explaining a little bit what they would do. Then the anesthesiologist put a mask on and told me to take big breaths. The last thing I remember is saying "I can't." At 7:49 Noah Michael made his entrance into the world weighing 1 lb 14 ounces, 3 months early. He was an amazing little guy and a fighter right from the start. They didn't have to do multiple incisions because he put his little hand up and the doctor could follow it and get him out with only one. And then his little lungs that weren't supposed to have to be breathing air yet let out a cry. One of the nurses opened the door and stuck her head out and said to Corey, "Do you hear that? That is your son." The wonderful NICU team went right to work saving his life. It took 3 tries to get the breathing tube in.
How do you thank an RT that literally breathed for your son as he came into the world 3 months early? Or the nurse that put in an IV that would deliver the nutrition that he could no longer get from Mommy? Or the doctor that chose to devote himself to saving these precious lives? They are all heroes to us.
I woke up to Corey and the nurse chatting next to me in the recovery room. She showed me where my button to deliver morphine was and I pushed it many times. Emergency C-sections hurt. A lot. They wheeled me back to the same old hospital room. My family arrived soon and Corey took them one at a time to see Noah. My dad came back and said, "He looks like a baby. I didn't know what to expect. But he is a tiny little baby." Many long hours later, they said that I could be brought in a wheelchair for a few minutes to see my son. My mom got me a special new robe to wear over the lovely hospital gown that had become my uniform. I vividly remember putting it on and the ride to the NICU and down the hall. But I have to admit, the seeing Noah part is a little fuzzy. Maybe it's partially the drugs, but I think God gives special grace for when we have to go through things like that. I hope the memory comes back stronger some day, at least I think so. It is surreal to see this little person that you are completely in love with that is supposed to be growing safe and warm inside you but is laying in a plastic box hooked up to wires and tubes. I do remember opening up the hand holes and touching his tiny, tiny hand with my swollen one. It was so red and so skinny. His entire hand didn't even wrap around my pointer finger. But it did hold on to it. I know that he knew who I was. I am Noah's mommy.

Monday, November 15, 2010

11 months old!

Um really, did another month go by already? Yes, yes it did and it's hard to believe we are coming up on a year. Time for the 11 month (8 month adjusted age) update!
  • He hasn't been officially weighed lately, but definitely feels like he is getting up near 17 pounds. (in other words, he is getting heavy)
  • Has way more hair and it makes him look so grown up!
  • Looks so much like his Daddy!
  • Can sit up for as long as he wants.
  • Is Noah crawling (You've heard of army crawling, bear crawling and commando crawling. Noah has his own version and is getting very good at it.)
  • Is getting very, very close to "real" crawling. He gets up on his hands and knees many times a day.
  • Nothing in my house is safe anymore...
  • His favorite things to get into are shoes and cords. And he like to take books off his bookshelf.
  • Is taking things out of and putting things in containers. (Might not seem like a big deal to you, but when you have a 6 page developmental checklist and are being watched by 4 different places for development, things like that are very exciting.)
  • Has two teeth! (one just came through and you can't really see it yet)
  • Loves finger food.
  • Likes to make sure Mommy is watching when he does something cool.
  • Loves Lucy and grabs handfuls of fur... (Lucy on the other hand, not so thrilled)
  • Does well in new places and is a very friendly guy.
  • I love my 11 month old!

Friday, November 12, 2010

I am a NICU mom.

I read some good advice for parents of preemies that at some point you have to stop thinking of your baby as a "NICU baby." I don't want my son to be treated differently or to change how I would parent him because he was a preemie. They do catch up and many have little to no complications. This is certainly proving true with Noah. His doctor said she expects that he will be almost caught up by 1 year of age. Pretty amazing.

But I don't think I will ever stop being a "NICU mom." Watching your own child fight for his life and not being his primary caregiver for 3 months does something to you. I have the feeling I will spend the rest of my life realizing exactly what.

To be honest, many days our NICU experience seems far, far away. But some days I think about it a lot. And all days are affected by it.

Some of the effects are good and I wouldn't change them even if I could. The whole "embracing the ordinary" idea (besides being quite a clever name for a blog if I do say so myself) is a good thing. Every day is permeated with being thankful for my son. (Not that a parent who didn't have a baby in the NICU isn't thankful, of course. There is just a different kind of thankful that comes with it.) Whenever crying or lack of sleep or messes start to bother me the thought "stop complaining; he is alive" is never too far behind. That may seem kind of morbid, but its true. I never have to look very far for an needed attitude adjustment. (Especially when he was in the NICU, I kind of wanted to yell at people who complained about their kids, or when I saw a parent treat their kid like dirt in public--something like "at least your kid is with you and not laying hooked up to machines in the hospital!" I never actually did, but the thought crossed my mind.)

I experienced the power of prayer, the strength of my marriage, the Body of Christ, the peace that transcends all understanding, the blessed hope of our great God and Savior, and the love that surpasses knowledge in amazing and special ways. Those are things that I treasure and want to stay with me throughout my life.

Obviously some of the effects are not so fun. Even with a preemie who is doing as well as Noah, there are some things that are just different than having a child who was full-term, and memories, worries, and feelings that come with it all. Something I did not really expect was how much I have had to deal with that "lost last trimester." Compared to the other aspects of having a baby 3 months early, it doesn't seem like it would be that big of a deal, but I have been surprised how often it comes to my mind and the emotions it brings. I don't have funny anecdotes about doing things with a huge belly. I didn't wear a good amount of the maternity clothes I got. I don't have a whole series of growing belly pictures. I don't even have a picture of my pregnant self in front of the Christmas tree. (I was honestly planning to do that photo shoot the night I landed in the hospital, how ironic...) I didn't get to feel him hiccup or see my belly move. (Actually I hardly got to feel him move much at all, which makes sense considering he was the size of a 24 weeker.) I didn't get to pack a hospital bag. I didn't get to get the nursery all set up before he was born. I don't have a labor and delivery story other than "a very worried looking nurse came into my room, said you are having this baby now, and half an hour later woke up to spend more time in the same hospital room while my baby was fighting for his life in another." (Not that I was actually too excited to experience labor and delivery, but it just feels kind of wrong that I didn't.)

So remember...
if I act kind of strangely when labor and delivery stories are shared,
or if I start every other sentence with "In the NICU..."
or if I get upset when people complain about their kids and treat them like they are an inconvenience,
or if I know way too much about child development,
or if I seem a little germ-aphobic concerning my baby,
or if I randomly start crying at just the sight of my healthy, happy boy
... it's just because
I am a NICU mom.

Saturday, November 6, 2010

Preemies are amazing

We got the official evaluation in the mail the other from the big follow up clinic Noah had a few weeks ago. Since we are being followed so closely by people here, there wasn't anything too new from the clinic, but it's still nice to hear them say that he is doing so well. He is right on track for his development for his adjusted age and starting to catch up to his real age in quite a few areas. Something that we found pretty humorous is that everyone who evaluated his muscle tone in his legs rated it as "high normal" in the report and made comments on it while we were there. If you have ever been around Noah for more than 2 minutes, you know why. :)
He still gets his mystery wheezing once in a while, but not nearly as much as he did. And there has never been anything in his lungs that they can hear, and that was true again this time. That is a good thing. If the lungs are good, that is a lot less to worry about. What it does mean is that he has a narrow airway (laryngotracheomalacia, how's that for a word of the day?) This makes sense considering all the trouble the breathing tube gave us those first few weeks of his life. There might be some extra scar tissue from being intubated and extubated so many times (the breathing tube going in and out). This means that if he gets some sort of upper respiratory infection it has the potential to be pretty bad. So we might be semi-hermits during cold and flu season. And we are trying to get him the ridiculously expensive RSV immunization, but from what I've been told the chances of insurance approving it are slim.

Things like that are a big old reminder that even as awesome as he is doing, he is not a typical/normal/full term (I'm never quite sure what word to use...) kid. There are just some things that we have to go about differently. I am NOT complaining, just putting that out there as the mom of a preemie. (you know, raising awareness...November...)

Here is another big difference. My kid is not even a year old and he already has a longer medical record than me. This is just the section for his "birth history" in the report:
"apnea, breech, cesarean section, gestational drug exposure, intrauterine growth retardation, jaundice, pulmonary injury sequence, respiratory distress syndrome, respiratory failure, small for gestational age, bronchopulmonary dysplasia, pulmonary hemorhage, anemia, GERD, laryngotracheomalacia, torticollis, plagiocephaly"
Wowsers. And add to that countless x-rays (For some reason I hate thinking about that. Probably because I was told to avoid them while pregnant because it could harm the baby and then he ended up having so many.) and blood draws. And having IV's and a PICC line. And receiving months of nebulizer treatments and medications. And going through a CT scan, MRI, MRA, and multiple blood transfusions.

Preemies are amazing.
They are miracles.
They are fighters.
They are heroes.

I love you, Noah.

Monday, November 1, 2010

It's November...

...and that means it is Prematurity Awareness Month!
Obviously this is a cause that is now very near and dear to me. So bring on the prematurity related posts and Facebook status updates, facts, memories, and purple things. (Purple is the official color for prematurity because of the March of Dimes.)
Here are a few starter facts:
  • 1 in 8 babies are born premature in the US (that is approximately 543,000)
  • The rate of premature birth has risen 30% since 1981.
  • Almost 40% of premature births do not have a known cause.
  • The number one known cause is preeclampsia.
I had no idea the numbers were that high until my baby became one of them. I don't really remember what exactly my thoughts were about preematurity before I found myself laying in the hospital knowing I was now part of it. I do remember reading in one of those books that gives you little tidbits about your babies development each day of your pregnancy on the day when it said that if the baby was born it would most likely survive, and thinking something along the lines of "well, that's a relief to know, but I think I will make it to the end" along with that little bit of "what if?" cropping in. I soon learned...
There are two random things that popped into my head concerning "awareness" as a mom of a preemie. One is that yes, preemies catch up and many of them thrive and you would never guess how they started, but the affects on the parents stay. The other is that even when a mom does everything right, that is no guarantee that her baby will not be born premature. I loved being pregnant; I did things "right" within my power; I felt great up until I landed in the hospital. I think that is the main reason prematurity wasn't so much on my radar. When someone says "premature" I think often our minds jump to smoking or drug abuse or some cause like that. But 40% don't have a known cause. And although preeclampsia is the #1 known cause, IT doesn't have a known cause.
So I want to know what are YOUR questions about prematurity? Or thoughts. Or specific questions about Noah's story. Somebody leave me a comment about something! :)