Today is a very special day for me.  It is the day that was the entire inspiration behind this newfangled blog design. Click here and here for a little background on how this idea.  Miracle Baby Monday begins today with Erika, Mike and Claire.  Claire and my boys were born mere weeks apart and spent roughly the same amount of time in the NICU at Mercy Hospital in Des Moines.  The difference:  Claire was born weighing less than a pound and a half.  One of the most amazing aspects of her NICU stay is despite being so very tiny, she was only on a ventilator for a few short hours after her birth and she went home weighing less than 4 pounds.  What a strong little girl!

The rather ironic part of this story is how Erika and I met.  We did not meet in the NICU, nor anywhere near the hospital.  We actually met online, in a parents of preemies chatroom.  Some of you preemie parents might find this odd, but the NICU at our hospital was brand spanking new and had only private rooms.  So there really was little opportunity to interact with other parents and really have someone to share in the journey with.  Erika is a teacher in Des Moines, IA and has graciously agreed to share her story of hope, inspiration and courage.

Claire

“I had no idea anything was wrong with my pregnancy for the first few months.  I went to my 20 week ultrasound in June and found out I was pregnant with a healthy baby girl. I was soooooo excited!  I have always wanted to have a daughter. During week 23, I suddenly became VERY swollen, especially in my legs and feet.  In fact, none of my shoes would fit anymore and I had to go out and get some new sandals!  I called my doctor, and they assured me that swelling was normal, especially since it was the summer.  I felt perfectly healthy otherwise, so the doctors weren’t concerned.

On Monday of week 24, I went to my regular doctor for an unrelated issue, and found out my blood pressure had sky-rocketed. This was at 5pm, when my OB office was already closed, so they strongly suggested that I call my OB in the morning to go get checked out there.  I went to see my OB about 11 am the next day and my blood pressure was still high.  He told me to go to the hospital to get checked out further, and informed me that they may want to keep me overnight for observation

I wasn’t worried at all when I was initially checked into the hospital, until they told me that they were worried I might have pre-eclampsia.  I was admitted overnight, and by that evening a doctor came in to tell me that they were keeping me at the hospital on bed-rest until the baby came.  I was just shocked!  They told me that with pre-eclampsia they wouldn’t let me go beyond 36 weeks, but that was still 12 weeks away. I realized that even though it was the middle of summer, I might not be leaving the hospital until Fall.

Bed-rest was very hard.  The bright spot in each day, though, was that I got to see my little girl on ultrasound.  In addition to pre-eclampsia, the doctors also found out that Claire (the name we had decided on for our little girl) was dealing with low amniotic fluid and intrauterine growth restriction (IUGR).  She was measuring at only about 1 lb when I was first checked at 24 weeks, which was smaller than she should have been at that time.  They also discovered that the blood flow in her cord was restricted – absent end diastolic flow.

During the weeks I was on bed-rest, they monitored Claire’s heart rate multiple times per day. She would often have spells where her heart beat dropped drastically, and would take awhile to come back to a normal beat.

On the morning that she was going to be born (unbeknownst to me) I had an ultrasound that started out fine until they found reverse end diastolic flow.  So instead of her blood flow just being restricted, it was now flowing from her to the placenta and then bouncing back.  So I was put on the heart-rate monitor immediately back in bed, and her heart rate kept dropping over and over again. A couple hours later they came back and told me that I shouldn’t eat anything, as I may have to have a c-section later that night. I was scared, to say the least.  At that point I was only at 27 weeks and 3 days.  My goal was to get past 28 weeks, as that is when the expected outcomes for babies born at that gestation get a lot more hopeful. I knew she was only a little over a pound, and I had seen babies up in the NICU at that weight, hooked up to many machines and looking extremely fragile.

The news came about 6pm that evening – they were taking me to the c-section wing to deliver.  I cried a lot because I was extremely scared.  Being born at 27 weeks, there was a good chance that many things could be wrong with Claire. At 9:13 that evening, Claire was born.  I didn’t even get to see her immediately, as they whisked her off to check how she was doing and get her hooked up to things.  My husband, Mike told me that he heard her give a little cry right after she was born, but I hadn’t heard it.  Later I would find out that she scored a 5 and then an 8 on the Apgar test. She was born at 560 grams (a little less than 1 lb 4 oz) and measured 11 ¾ in. long.

She was taken up to the NICU pretty quickly, and Mike went with her.  I was taken to recovery for a couple hours.  Mike came back to see me after awhile and we started calling our family members and close friends to let them know about our new daughter.  When the nurses finally wheeled me up to see Claire in the NICU, I was laying flat on my back and could hardly see Claire at all. The nurses tried to help me reach over to touch her, but I couldn’t reach, and I was so frustrated.

The next day when I had recovered enough from the surgery to go see Claire, I couldn’t believe the tiny, fragile little girl laying in the isolette was really mine! I loved her immediately, and surprisingly, most of my fears went away.  I don’t know what it was, but looking at her, I was absolutely sure she was going to make it.  Amazingly, when I first saw her that day, she was breathing unassisted!  She had been hooked up to a ventilator for about 10 hours during the night, but she was doing so well that for 2 days she wasn’t hooked up to any kind of oxygen.  When Claire was 3 days old, she was hooked up to Vapotherm to help deliver oxygen, since she had been having many “spells” (episodes of apnea and bradycardia). These spells are common in preemies, as their lungs and brain just aren’t developed enough, and the little babies will sometimes just forget to breathe, which drops their heart rate.

Claire also had a feeding tube down her nose (after 2 days) , and a PICC line in her leg for a little while. She also had to be under the billirubin lights for five days to help bring down her jaundice.  She was so cute during this time, as she wore a little mask over her eyes, and with the lights it looked like she was sunbathing.

Oh, it just so happened that for a couple days after she was born, the NICU was out of the smallest size diapers (meant for micro-preemies like Claire), so they had to use the regular size preemie diapers which were HUGE on Claire!  Right away Mike and I got to help take care of Claire every 4 hours.  We learned how to take her temperature, change her pulse-ox, change her diaper, and swab her mouth.  I finally felt like I was doing something to help take care of her.  Most of the time at first I felt pretty helpless, otherwise.  I just sat in her room most of the day watching her, napping, pumping, and just waiting until the next 4 hour mark so that I could do something with her.

When Claire was 3 days old, I was finally discharged from the hospital and got to go home.  It was such an empty feeling, leaving my new daughter behind at the hospital.  Even though I couldn’t do much to take care of her, just being there in her room with her made me feel more connected.  Mike would drop me off at the hospital in the morning, and come back to see Claire after work for awhile.  Then we’d go home, but often I would drive back in the late evening to see her because I missed her so much already.

Mike and I didn’t get to hold Claire until she was 4 days old.  Starting that day, she was allowed to be held for 1 hour/day doing kangaroo care.  It was wonderful.  I couldn’t believe how tiny she seemed the first time they laid her down on my chest – she weighed hardly anything! Mostly she just slept while laying on me, but sometimes she was wide awake and alert, and then I would sing to her or just talk to her.

Pumping: that was another thing that made me feel like I was needed.  It was hard, and for awhile I was pumping every two hours during the day to try and get my supply up.  Even though I really hated doing it, I knew that that was the most important thing I could do for Claire at that time.  That’s what would keep me going when it got really tough, and sometimes very painful.

Five weeks old was also a milestone for Claire: she finally was starting to fit in some preemie clothes!  They were giant on her, but so cute

Probably the biggest worry we had with Claire was how slowly she gained weight!  It took her 5 weeks to reach 2 lbs, and almost another month to reach 3 lbs.  We actually took her home at 3 lbs 15 oz!  Luckily the NICU gave us a special car seat to take Claire home in, as she was too small to fit in the regular car seat we had!

Claire spent 75 days in the NICU before she was allowed to come home.  During this time, she had to endure a blood transfusion, 5 eye exams (terrifying for me to watch!), and 2 head ultrasounds to check for brain bleeds.  They never found ROP (retinopathy of prematurity) in her eyes, just pre-maturity, and she never had any brain bleeds.  She didn’t have a PDA in her heart, so luckily she never had to have any surgery.  Basically, we were extremely lucky with Claire.  Despite being born so early (and much smaller than she should have been), the scariest thing we went through with Claire were her spells.  She spent 25 days on vapotherm, and then another 7 days on a nasal cannula, but starting on Sept. 9 (when she was barely over a month old, and still less than two pounds) she was off oxygen completely!

On October 20, we were finally able to take Claire home.  As excited as we were, it was also a little terrifying.  At the hospital, she had been very closely monitored 24/7.  We took Claire home without the aid of any monitors, and I was so scared something would happen to her while I was sleeping and I wouldn’t notice.  For a long time, I put her bassinet right next to my side of the bed, and often would fall asleep with my hand resting on her.

As about 4 months passed after she came home, we started noticing that the back of her head was pretty flat.  We discovered that this happens to many preemies after they come home from the hospital, since their neck and head muscles aren’t strong enough to turn their heads often enough while sleeping.  Claire ended up needing to get a helmet.  She got a cute purple one with butterflies that she had to wear for 23 hours each day.  It fit close to her head in some spots, and looser in other spots so that as her head grew, it would grow in the right directions.  This was very hard…for me!  Claire got used to it right away, but I just felt horrible that she had to wear it.  Luckily she was young enough that she never noticed any stares she got from other people in public.  She wore the helmet for 5 months, and it worked wonderfully.  Her head is still slightly flat in the back, but you can’t tell with all her beautiful, curly blond hair!

Claire excelled at many things (breathing and staying healthy, for instance), but we had such a tough time getting her to gain weight!  Many of the doctors and nurses reassured us that most preemies start putting on a lot of weight once they finally get home from the hospital.  Not Claire! We fed her a high calorie mix of formula up until she was a year old.  She gained about a pound a month, and was 13 lbs 3 oz at 1 year old (and had grown up to 26 ¼ in. tall). By age 2 she weighed 19 lbs 8 oz and was 32 ¼ in tall, and now at age 3 ½ Claire weighs about 26 lbs and is 37 inches tall.

Even though Claire was a “super-star” (as some of the nurses called her in the NICU), there were still things that lingered on with me long after she left the hospital. She started sleeping in her own room when she was about 5 months old, but every single night after that I would go in to check on her before I went to sleep, just to check that she was breathing and that her heart was beating.  It’s only been probably the past 6 months that I’ve started doing this less and less.  Now usually, I just peek in on her, and close the door. Besides the fact that she is a little small for her age, most people would never guess that Claire was a preemie.  She is a perfectly normal, healthy girl.  She is very smart, and loves to learn new things.   She has been in gymnastics for over a year now and loves it. She loves to draw, sing songs, listen to books being read to her, play outside, and she is the most loving daughter – always wanting to give Mommy and Daddy hugs and kisses.

I am thankful every day when I look at her, that nothing is wrong with her.  I am thankful that she is alive, and healthy, and developing normally. Claire is our miracle.”

Claire at age 1

Claire - age 2

Claire - age 3

My dear friends, thank you so much for taking the time to read about Claire, the epitome of the word miracle.  She is just one of many examples of children who defy all expectations set forth by medical science and thrive despite the many obstacles thrown into their paths.

Next Monday, you all will get to meet Conrad, another one of the turkeys’ NICU buddies.  If you or anyone you know would like to share your story here on “Miracle Baby Monday” please email me at twinshappenblog@gmail.com.  God Bless!