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.


  1. Amazing. I love hearing your stories. Well done, Mama.

    PS--Isn't it amazing how wonderful it is to see your baby wearing clothes? And giving them a real bath? And seeing them in a real (although metal) crib? It's the little things, I tell ya. I'm so glad we can appreciate the ordinary because of our preemie experiences. It makes life so beautiful.

  2. Thanks for sharing Ellie. I loved hearing you share this at Camp Oak Hills with the kids, but to read all of your thoughts and everything was such a blessing. I've had my clinical rotation through the NICU now, and just from reading your story I think I can better relate to the parents that came through there. Thank you. God's using your testimony in others' lives. Give Noah a kiss for me. =)

  3. Thank you for your long, heartfelt post for Prematurity Awareness Day. By telling your story, you help others who are there now, and you also help us to get the word out about prematurity. You are right that no baby's body and no parent's heart should have to go through this. On behalf of the March of Dimes, thank you again for helping us in this journey.