Thursday, January 17, 2013

Nathan's Story - An Extreme Preemie

I can't say enough how important I feel March of Dimes has been in my life and the lives of those I have met over the last 12 years.  I want you to understand more deeply why it is so important.  And if you are new parents to a preemie or extreme preemie I want you to know that you are not alone.  I'll be sharing more stories like this one here over the next several weeks so please come back for more.  If these stories touch your heart, please leave a comment of support for others who may be going through similar things and please make a donation in honor of these babies to help March of Dimes continue their research and support.  This link goes to a secure site that is run by March of Dimes - not by me - and your donation goes directly to them.

This is the story of Nathan and his family as written by his mother, Melanie.  Melanie and I have never met in person as she lives quite far away but I work with her mom.  When Melanie went into labor so terrifyingly early, her mom connected the two of us for support, knowing what my family's experiences had been.  Get ready with your Kleenex - you'll come to love this feisty little boy!

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Our NICU story, 26 weeks 4 days

I found out I was pregnant in September of 2010, and like everyone else thought of the next 9 months of pregnancy, and giving birth to a healthy baby. Everything seemed very surreal, and exciting. I went to every appointment I was supposed to, the pregnancy seemed to be going textbook. I ate healthy, did everything I was supposed to do for a healthy baby. The last appointment I had was at 25 weeks and everything with the pregnancy was once again going great, made another appointment for 29 weeks.


At 26 weeks and 4 days pregnant I went to the doctor, the night before I had spotted a little bit, called the on call service and was told to keep an eye on it, some spotting can be very normal. On the morning he was born my back was hurting a little bit and it came and went so I decided to get it checked out. I got to the doctor’s office at 10:00 on February 16, 2011, when they went to check my cervix I was dilated to 4 cm, and my water was bulging ready to burst at any moment. They did an ultrasound to see if Nathan was in any distress, and he was fine like nothing was going on. At some time I had gone into labor and had no idea it was going on. It was a whirlwind of doctors and nurses deciding what to do.

The doctors decided to send me to the hospital, which was across the street, by ambulance. I was then told he was breech and I had placenta previa (the placenta was over my cervix). He was to be delivered quickly by c section, I told them there was no way I was having a baby that day and I was not going to have a c section, when of course I had no choice. I really think my mind went into shock and random things had to be said to keep me feeling like I had any control. I had to call everyone who needed to know and could spread the news; I got in trouble for calling instead of paying attention. I could not even think about what was happening, I distracted myself by making the phone calls, plus I could not go through it without my husband and parents knowing it was happening.
I got to the hospital at about 11:00 am and I was still thinking I had a little time to prepare maybe some bed rest in the hospital where they would stop the labor. I was very wrong, and everything was spinning, the anesthesiologist was explaining what he was going to do, one nurse was undressing me, and another nurse was trying to find a heartbeat. The nurse who was looking for the heartbeat could not find it, I was already panicking and that news made it even worse, all that was happening was my heart was racing so they couldn’t tell our heartbeats apart. My husband came into the room and told me my dad and best friend were in the waiting room and that helped calm me long enough to slow my heart and find his. Knowing I had my husband, dad, and friend there somehow helped me feel like everything was going to be ok, 3 people who would never let anything bad happen to me or my baby. Even though they had no control over anything it just helped my mind.

When they took me into surgery everything sped up even more, I can’t place everything that happened it was all just happening so fast, I had gone loopy and was saying strange things to still not have to acknowledge what was happening. I got the spinal and it worked really fast, the doctor sat where he was doing the surgery and poked at my stomach and repeated “is that sharp or dull, now? Now?” as soon as it was dull he started. The next thing I remember is hearing the tiniest noise that was the biggest moment of my life. Nathan squawked and I knew he was alive. I don’t know what happened with him from that moment on. I sent my husband with the baby and then I just let go and passed out on the table.

I woke up in the recovery room and immediately asked how my baby was, where he and my husband were, and if everything went ok. They left a student nurse in charge of me, the nurse who left the room when they took Nathan out, she had a hard time. It did not bother me because for one I didn’t even notice her leaving and two it had to be a shock to her to see such a small baby. She was a very nice woman who held my hand the whole time my husband was with Nathan.
When I was released from recovery they wheeled me in to see my child for the first time. When I saw him it was not shock of how he looked, or anything other than joy for seeing my son. He was beautiful to me, perfect in my eyes, the transparency of skin, and ventilator breathing for him did not throw off the beauty of him being my son. It was a short visit to see him and they took me upstairs to my room where I would stay for 3 days. It was hard to hear all the moms with babies around me. At 2 am that night I had my breakdown where everything hit at once. I was hysterical for 2 hours just realizing what had happened and that my child may or may not be there in the morning.

On the third day I got to go home, it was the hardest thing I have ever done to walk out of that hospital with no baby in my arms or stomach. It was nice to be home, but I was beside myself. My husband made me rest a lot to heal from the c-section, which was hard to do. While I was in the hospital some friends had come together to clean my house while I was in the hospital and was not tempted to get up too much. I think I must have called the NICU 5 times every hour to see how Nathan was. The second I got home I wanted to go back; I did not know how to handle anything.

When Nathan was born he was put on the ventilator, there was no time for me to get the steroid shoot to help his lungs grow. He stayed critical but stable through the whole first day. He was taken off the ventilator at around midnight because he was doing really well, and stayed off it for almost 2 days. On his third day he had to get back on the ventilator because he was not breathing out. His blood gas levels were too high. The fourth day was very exciting when they put one cc of milk into his stomach, it was something I knew most parents of healthy babies would laugh at, but I was so excited he was getting his first little bit of food, it was also the first time I got to hold him. The most amazing thing to get to hold my baby for the first time!
Hit the critical 5 pound milestone!
When he was six days old he got an infection, they could not figure out what the infection was but immediately started antibiotics. It was scary to see him that day, he was no longer pink, but grey, he was not moving around and kicking like he had been, I was terrified. The doctors had told me to prepare for the worst, but hope for the best. That was the first day I had to acknowledge that he may not get to come home with me. They had to put in a pic line, an IV in his head, and an IV in each foot. It was scary to see but whatever it took to make him better was worth it.

The next day he had turned around and started looking better and moving around more, that situation was over for the time being. It opened my eyes to how serious him being born so early was. When he was one week old he had gotten all his color back, and was moving like a champ, it was also when he started gaining some weight back. He was going back and forth from the ventilator to the c pap, he was breathing well enough to not need the ventilator, but the c-pap was not quite enough so they tried the rated c-pap and that was just what he needed.

The first 4 weeks were up and down, more ups than downs it seemed. He hit three pounds on St Patrick’s Day in 2011; he was slowly eating more and more. His breathing was the only obstacle we were having trouble with, going back and forth from high flow, to c-pap pretty regularly. His brain bleed had started to recede slowly so we no longer had to worry about a stint.
Finally home!
In that fourth week we encountered a huge issue with his PDA, he had started to be very symptomatic. All of a sudden his temperature was rising, the nurses had to chase him all over with his oxygen, and his heart rate was up between 220 and 230. He had been breathing fast since birth, but his respiratory rate was up above 100 which was really fast even for him. There was just too much blood going back into the ventricles and not enough going where it needed to go. He was put on heart medication to strengthen it, and lasix to take the extra fluid from his lungs.

After the heart issue was resolved it was not so hard, many little troubles but none that could not be dealt with easily. Nathan was moved into a crib in the seventh week, that step seemed to make a world of difference with my coping skills. It made him seem almost like a normal healthy baby, just look past all the tubes and wires. It was really hard in the last few weeks of his NICU stay; it just seemed to drag on. He was no longer in danger of losing his life, but was not healthy enough to take home. I knew it needed to be done and was very thankful for the NICU and its staff, but it still was hard.
It was an incredible day when Nathan got the ok to nipple, made me feel like I finally got to help nourish my baby, even though he could not actually eat through his mouth yet, it was on step closer. He was a champ at nippling. After two weeks of practice he got to do the real deal! It’s one of the many things parents of healthy full term babies take for granted, to feed their baby. It took two weeks after he started eating by mouth for him to do two full days off everything down. I will never forget the emotion I felt when they told me we could take him home if he continued to eat so well. It was very exciting, yet terrifying to know I was finally going to have my son all day every day.

It was April 23rd 2011 when we got to take him home, the day before Easter. We did the room in the night before to kind of get the hang of it, and I am so glad we got that preparation. He went home on two medications, oxygen, and a monitor. Once we got home he was sleeping and my husband and I were very nervous, go from nurses 24/7 to just us. We had to keep reminding ourselves that they would not have let him go home if he was not ready.
It took about a week for us to get used to everything, but that is something that is normal for every parent, it was amazing to finally have a normal parenting experience. And after that week it seemed like the NICU was all a dream, it did not seem like 65 days of “when do I get my baby” just to have him at home with us made everything so worth it and very surreal, a feeling of no way that happened.
On his one year birthday we most definitely celebrated that he had lived! It was a day of emotions, everything that had happened the day he was born came swarming into my head, and I finally got to think about it and work through it in my head. We keep a picture of him the day he was born right above his certificate from the hospital, it is now a reminder for when he is getting into things and we just want to scream, to remember how we were praying to have a day where we could be frustrated with him.
Its weird now when people I know have babies, all the things that they take for granted, I would have given anything to be up all night with a screaming baby. Every diaper I changed made me happy because it was one small thing I could do for my baby. Feeding your baby, holding it, all the things NICU parents don’t get to do right away that you don’t realize are so precious. I am so grateful for my experience; helps keep me calm when he is elbows deep in my plant, or finding pens or crayons I didn't even know existed in my house. He was well worth everything we went through!

1 comment:

Annmarie Pipa said...

what a story! and what a beautiful testament to life!