It’s Prematurity Awareness Day!!

Standard

I have blogged about Emma’s journey before, so I don’t really want to retell the whole story. We will never know just why Emma was born prematurely. The nurse at her birth thought it might have been an infection, but where that came from she didn’t know. My doctor said that is the blanket answer. Often it’s contributed to an infection, but the cause is really unknown. I do know this, God allowed it. For whatever reason, God chose us to go down this path.

Little Emma a day or two after she was born.

Little Emma a day or two after she was born. The pink cloth on the right side of the picture was her scent cloth. We slept with it and put it in her bed so she could get accustomed to us.

Any baby born before 37 weeks is considered premature. According to the March of Dimes, 1 out of 9 births is a premature birth. Micro preemies are babies born before week 32 (some stats say week 30). Chances of survival for a baby born at Emma’s gestation is 55%-70%. Just 10-15 years ago the chances of survival were much, much lower. Of babies born this early, only 30%-40% will develop normally without any major health issues or concerns. These babies are born purple. Their skin is transparent so you see the blood vessels underneath. Emma has a very high pain tolerance. I’m convinced it is because of all the poking and prodding she endured those first 89 days of life. I assumed all preemies were visited by their parents. Sadly, I learned that some preemies are already in state custody and NICU nurses are the only contact some of them have.

Eyes wide open

Eyes wide open

love those baby feet and teeny toes

love those baby feet and teeny toes

It is a scary thing to have a baby at 26 weeks and not know how things are going to go.  I remember one of the nurses warning us we would have a couple of good days and then a bad day. She was right. The first couple of days looked promising and then “Wham!” here came our bad day. That pattern continued for weeks. I’ll never forget the day the Nurse Practitioner, Gina, came in with the worse case scenarios. Possibilities included vision loss, hearing loss, developmental delays, neurological disorders, cerebral palsy, and the list went on. If I had no God in which to put my trust, that conversation would have been very bleak. I realized after that she was just doing her job. Unfortunately, they have to do that. But I appreciated the way she talked to us and explained things and let us ask questions. Gina became a sweet friend during our NICU stay. This is great considering how we first met. The day after I was released I went to Emma’s room. When I asked if I could just go on in she said yes and asked if I was Emma’s grandma. (If I had a dollar for every time I was asked that!!)  I remember one day she came in, sat down, and we just talked. Some of it was about Emma, some about our journey through infertility, part of the conversation was about her and her health journey, but always about how God is good. She always made time for us even after we graduated from the NICU.

Believe it or not, Emma was was almost 5 months old in this picture. She still probably only weighed around 8 lbs.

Believe it or not, Emma was was almost 5 months old in this picture. She still probably only weighed around 8 lbs. Photo by Krystal Inman Photography

I love our NICU nurses. They are fabulous. It still amazes me how these people can work 12 hour shifts on what I would consider a high stress level job. I never heard anyone complain. I never heard any of them gripe about another nurse. They answered our questions and were patient. We were there a lot so we had a lot of questions. They were very professional, but they were so personable. We had 24 access to our nurses. We could live in her room if we wanted. We could call any hour of the day or night and check on Emma. They always answered and were always happy to tell us how our baby was doing. Though we did have excellent doctors, Dr. Siddiqui being one of my favorites, it was the nurses who watched over Emma every day. They got to know her. Once she was able to cry, they learned she only cried when she was dirty. One of her nurses made Emma her first hair bow. They made a nameplate for her bed. They called her by name.

One of Emma's first bows. Thanks, Nurse Tiffany!

One of Emma’s first bows. Thanks, Nurse Tiffany!

Emma in her glass bed, just like Sleeping Beauty.

Emma in her glass bed, just like Sleeping Beauty.

Those nurses are my heroes. If I started to list them by name, I know I’d forget someone. But every single nurse that took care of our precious baby has a hand in the beauty she is today. Many of these nurses still keep in touch with us, and I always want Emma to know how these angels were used by God to accomplish a purpose.

Emma being silly playing in the dog's crate.

Emma being silly playing in the dog’s crate.

Our vivacious Emma will be 3 in January. It is often hard to believe that she went through all she went through. We have had the privilege of having awesome speech and physical therapists working with her to help her along.  We are almost caught up on every level, and I’m praying by the time we start kindergarten, she’ll be right on grade level. We have purchased a preemie baby doll to give Emma a point of reference when she gets older. (www.weebundles.com)  I want her to see just how tiny she was and what a miracle she has been.

This doll was made to be the exact length and weight as Emma when she was born.

This doll was made to be the exact length and weight as Emma when she was born.

If you know of a family that has a preemie, go visit them, even if you don’t get to see their precious blessing. The parents need a short break, a diversion. Take them a meal (we found out the hard way we weren’t supposed to eat in our room. Oops!) or get them a gift card to a restaurant close by. Take them a Starbucks card. We had one right across the street. Send them a fuel card. They will spend lots of time traveling to the hospital, even if they live in the same town. Above all, pray for them. Pray for the baby, the parents, the siblings if there are any, and especially the doctors and nurses. No matter what the medical community will tell them, God is sovereign. I am so thankful that through it all, God is in control, and especially grateful that God saw fit to bring Emma through.

Physical therapy time!

Physical therapy time!

Giving us last minute instructions before we graduate.

Giving us last minute instructions before we graduate.

Even the nurse manager kept tabs on little Emma.

Even the nurse manager kept tabs on little Emma.

We loved the entire medical staff.

We loved the entire medical staff.

One of the fabulous nurses at St. John Tulsa

One of the fabulous nurses at St. John Tulsa

Advertisements

Surprise! 2011 was a banner year.

Standard

So far my husband and I have experienced infertility, adoption, and a miscarriage. When we lost our first baby in June 2011, we had no idea what God would do next.

In August of 2011, we found out we were expecting again. I told my husband, “Go figure. 15 years and nothing. Then I get pregnant twice in less than six months.” 🙂 We went to the doctor and sure enough, I was pregnant. Our due date this time was April 28th. I was still 39, but by the time this baby would get here I would be 40 years old. 40 years old having my first baby. God sure has a sense of humor. I think the medical community calls this a geriatric pregnancy. Some call it crazy.

This pregnancy went really well. I got past week 11 and that took a load off of my mind. Then I got past the first trimester and I started to breathe a little easier. They say your chances of miscarriage really decrease if you get past week 13. Right before Christmas we found out we were having a girl. More pink, more froo froo, and more hair bows! I was starting to look pregnant and not just like I had too many burgers the night before.

In the middle of January, I got really sick. I had a bad case of the flu (we think) and was sick from Sunday evening until Wednesday. Thursday I felt well enough to paint Lydia’s bedroom, although I was having some sore muscle pain on my side. I called my best friend who suggested it might be from throwing up for 2 days. She also suggested if it got worse, to call my doctor. About 2pm I decided I needed a nap. When I woke up around 4, I was still having this weird pain. It wasn’t very strong, just annoying. And it wasn’t constant. It would happen about every 8-10 minutes and last about 10 seconds. Yes, I timed it. My doctor’s office closes at noon on Thursdays, so I called my sweet friend again and she suggested going to the ER if it continued to get worse. I told my husband about 6:00 pm that we should probably go to the ER and get this checked out. The worst thing they could say was that it was gas or something and send me home. He was not very excited about sitting in the ER for hours to find out it was gas, but he humored me.

There is an advantage to being pregnant. When we got to the ER and they saw I was pregnant, they took me straight back to labor and delivery. No waiting room for me. Nope. Pregnant women about to enter their third trimester are special. 🙂 I didn’t even have to walk, they wheeled me back there in a wheelchair. They hooked me up to some machines and told us I was in labor. Ummmmm. Excuse me? I am only 26 weeks along. I can’t be in labor. Besides, don’t you watch TV and movies? Women in active labor are screaming and writhing in pain. I was not in labor. The nurses hooked me up to something like magnesium to slow down the labor and monitored me for a little while. Once they felt I was stable, they transported me to Tulsa. Bartlesville is not equipped for babies born earlier than 34 weeks, so I got to ride in the not-so-comfortable-and-not-so-fast ambulance 40 minutes south to Tulsa.

At one point on our ride I asked the ambulance attendant guy when this magnesium stuff was supposed to kick in.  He looked puzzled. “The contractions aren’t lessening?” “Nope.” Instead of lessening, the pain was getting stronger. He nervously answered, “We’ll be there in about 10 minutes.” During this time, my husband was following along behind us in the car. Unknown to me, he had already started calling people and asking them to pray for whatever was going to happen that evening. I was in the ambulance praying God would intervene so that by the time I got to Tulsa I could say, oops, false alarm. But, regardless, I had this unexplainable peace that everything was going to be okay. I had no idea what condition this baby would be in, or if she would even survive, but I knew God was in control. Again, nothing happens to us that God does not allow.

I arrived at St. John in Tulsa at 9:00 pm. and was wheeled (this time on a stretcher) straight to labor and delivery. They checked all my vitals and told us we would have a baby sometime that evening. Ummmm. No, I was only 26 weeks along and we hadn’t agreed on her name!! Right after 9:30 the doctor I was sent to see said I had a couple of hours yet, so she went into a c-section. I would ask for an epidural, but the nurse would say she was waiting on my labs to come back. It wasn’t a problem, she said, I had plenty of time. Just before 10:00pm I told my husband something wasn’t right. The room at this point was empty so he went into the hallway for help. The nurse came in to check things out and then went back for reinforcements. In less than 1 minute my room was full of nurses and doctors. Our tiny little bundle was born at 10:01 pm weighing 1lb and 14 oz. and was 13 1/2 inches long. (and I never got my epidural. Do you hear the Wonder Woman music playing? HA!) She was small, skinny, purple, and looked like an alien, but she was one of the most beautiful things I had seen.

Teeny, tiny baby. The nurse is holding the tube up so she can breathe. They were in the middle of intubating her.

Teeny, tiny baby. The nurse is holding the tube up so she can breathe. They were in the middle of intubating her.

She couldn’t cry because her lungs weren’t fully developed. We quickly decided on a name (I won!) and little Emma LeeAnne was brought over to me. I didn’t get to hold her as the NICU doctor quickly brought her over, let me get a glimpse, then whisked her away to the NICU. A couple of hours later, Brian reminded me I was only 39. I had her before I was 40!

Here she is. All purple, all covered in cords and cables and stickers and all beautiful. She still has a scar from one of her stickers holding a cord in place. It's her tickle button.

Here she is. All purple, all covered in cords and cables and stickers and all beautiful. She still has a scar from one of her stickers holding a cord in place. It’s her tickle button.

The first few weeks were touch and go. Emma would have a couple good days and then take a big step backward. I will never forget the day the nurse practitioner came in and gave us the worst-case scenarios. Pretty scary stuff. But we continued to place Emma in God’s hands, the best place she could be. It was very hard for me. I wanted to fix it. I wanted to do something to make everything better and ensure Emma would survive. But I couldn’t. I firmly believe God places us in situations that require us to rely on Him for our strength. I couldn’t do it on my own, but I knew Someone who could. I don’t like the phrase “God will never give you more than you can handle.”  If we could handle it on our own, we wouldn’t need the Lord. I believe God gives us just enough to make us turn to Him and not rely on our own strength.

We spent 89 days in the NICU at St. John in Tulsa. I have to say we had the absolute best medical staff you could ask for. We absolutely loved our nurses and nurse practitioner. (We loved the doctors, too, but the nurses saw her and took care of her every day.) They took care of our sweet baby like she was their own. The first day I got to hold her was February 14th, almost a month after she was born. The day before our nurse found out I hadn’t held her yet. At this point Emma was intubated and she was so tiny, there was very little room for movement with her equipment. I received a phone call at home the morning of Valentine’s Day and was told Dr. Siddiqui wanted to arrange it so I could kangaroo with her. (Kangarooing is holding your baby skin on skin. It helps them feel the rhythm of momma’s heartbeat and many believe this is the first step to them really starting to grow and develop.) He told the nurses to tell me Happy Valentine’s Day. It was quite the task to get her moved out of her bed and into my arms, but I was told I could hold her as long as she would tolerate it. So we took advantage of it. I know we were there together for at least an hour.

February 14th. The first day I got to hold this precious gift. (Laying her head on your shoulder is still her favorite position.)

February 14th. The first day I got to hold this precious gift. (Laying her head on your shoulder is still her favorite position.)

Those 89 days were an adventure. She had numerous brain scans, pic lines, and lumbar punctures (spinal taps). She developed pneumonia at one point, so she had scans for her lungs for a while. She had countless bradycardia episodes and some tachycardia episodes (those usually happened when she was mad at the nurses.) She developed retinopathy, so she had a pediatric ophthamologist come visit often. She had a grade 3 brain bleed, and up until the week before she was discharged, the neurologist wanted to put in a shunt. But God held Emma in His arms and protected her from any major permanent side effects.

Lydia meeting Emma for the first time. Looking at her baby sister through the open nicu nurses window.

Lydia meeting Emma for the first time. Looking at her baby sister through the open nicu nurses window.

We finally got to take her home April 17th. Lydia didn’t even get to meet her until the day before we brought her home. Emma was born in the middle of RSV season, so no one under the age of 18 was allowed in the NICU. Lydia only got to see her via facetime on our phones. The first day she met her was through the nicu window.

In her car seat ready to go home. Big bow on her head and heart monitor on her body.

In her car seat ready to go home. Big bow on her head and heart monitor on her body.

She was 3 months old and weighed 6 pounds the day we took her home. They never did install a shunt. She went home hooked up to a heart monitor and wore that until June.

 

She is now a very happy, healthy, and funny two year old. She wears glasses due to a weak eye muscle and ankle braces because her ankles turn in slightly when she walks. Both situations we hope and pray are temporary.

Emma playing in the church nursery. The smile on her face says it all.

Emma playing in the church nursery. The smile on her face says it all.

She is still a little behind in her speech, but I have no doubt that she will catch up. To us, she is a miracle.  It has been said that preemies usually are caught up by the time they are two. Our physical therapist told us that they are rewriting the book on micropreemies, that they should be caught up by the age four. We have great physical and speech therapists working with her to ensure that happens.

We may never know why God allowed this to happen. But believe me when I say Emma is worth every second of every minute. I can’t wait to tell her her story when she gets older. We even ordered a doll that is her exact birth weight and length so she can see just how tiny she was. I hope she realizes what an absolute miracle she is. And we are blessed to be her mommy and daddy.

Lydia and Emma coloring Easter Eggs.

Lydia and Emma coloring Easter Eggs.