A Preemie Story - Isabella

This is the story of Isabella, another one of Cohen's preemie friends. While they've never met in person, Isabella's mom Rachel and I have spent time emailing. Rachel has been a big support to me through this journey. Every once in awhile you find someone who just gets it, and Rachel is one of those people to me. Thanks for sharing your story! p.s. Today is Rachel's birthday!! Happy Birthday, Rachel, glad we can share Isabella's story for your special day.

The other day I watched Isabella push herself on her Strider for the first time. It seemed like she may be getting the hang of the balance bike. Despite my beaming smile, a small tear made its way out of the corner of my eye and rolled down my cheek. “Really”, I thought to myself. “Do I have to cry about everything?” Sometimes I am so thankful that I get emotional about nearly every new thing she does. It reminds me how much I appreciate her, and how incredibly lucky we have been. Things did not start out easy for us, and Isabella’s future was pretty gray, sometimes even black with fear and doubt. 

Isabella began her life with the odds stacked against her. Even her conception was a miracle in itself. Unbeknownst to me, my uterus was filled with fibroids, benign growths that really cause no harm, but can make it nearly impossible to get pregnant. The fibroids were discovered at our first appointment when they did an ultrasound to confirm the pregnancy. I was assured they would not cause any problems and that everything was looking perfect for a long healthy pregnancy.

While I was incredibly nauseous the first few months, the baby and I were both doing well. Due to the fibroids, I was monitored more frequently, and at our 16 week appointment we were thrilled to find out we were having a little girl. Again, everything was looking perfect, the baby was growing well and all of our screening tests had come back fine. It wasn’t until our 20 week appointment that things took a turn for the worse. While the baby was again doing great, it was discovered that I had a shortened cervix. To be honest I had no idea what implications that would have for my pregnancy. My OB explained in detail what all this meant and then confidently told us her plan. I am so thankful for her and her frank presentation of the facts. Despite my fear, I truly felt safe in her care.

Part of her plan was to recheck things in a few days. Because the cervix can be dynamic and is always changing, maybe a recheck would show improvement. Foolishly, I went to the follow-up appointment alone. Instead of improvement, things were significantly worse. At 20w5d pregnant I had no measurable cervix, I was 1-2cm dilated and 80% effaced. Lying alone on the ultrasound table, tears sprung from my eyes and my body began to shake with a consuming fear like nothing I had felt before. Trying to wrap my head around this information was almost impossible and I immediately began bargaining with God, begging Him to let me keep this child. 

My husband arrived after a while and brought me to the hospital. I was to be wheeled out to the car, and then wheeled into the hospital – no walking. After getting settled into our room we met with the high risk OB who let me know I would be staying in the hospital for the remainder of the pregnancy. Even writing this and remembering the events of that day, it all seems so surreal. How could this be happening to me? I was healthy, I was a hiker, my body was capable of incredible things and yet I was failing at the one thing it was meant to do. I was a mess of emotions. It truly was a crazy time. Looking back I realize too how lucky I was that this was my first pregnancy, that my ignorance was truly a gift in that I had no other child to care for at home, and I had no idea what I was missing out on. Of course now, two and a half years later, I’m still grieving my “lost” pregnancy.

The 19 days I spent in the hospital were incredibly scary, but filled with laughter and hope. I was on magnesium for most of the time and the last 8 days I spent on labor and delivery because they thought I could deliver at any moment. What a place to be, wondering if we would even make it far enough along for the doctors to attempt to save Isabella’s life. I can say for certain that I would not have survived had it not been for the amazing, nearly around the clock support I received from friends and family. When I think of those days now, I realize how beautiful it was. We were surrounded by love when we needed it the most. We were so lucky.

Sadly, my willful attempts to make it to 24 weeks failed. At 23w3d I was completely dilated, there was nothing more that could be done to keep me pregnant. At 10:06pm on May 2, 2010, Isabella came into this world with a tiny “mew”. The NICU team worked at intubating her while I was getting put back together. My husband was back and forth between the two of us, but ultimately left me to follow Isabella and the team up to the NICU. Interestingly, I never doubted that she wouldn’t live long enough to make it to the NICU. It’s only now that I realize how lucky we were that she survived the birth and was able to be stabilized.

The next few days are really difficult to describe. So much pain both physically and emotionally. I was on the postpartum floor, listening to the loud healthy cries of newborns everywhere. And even worse, I was encouraged to walk as much as possible. That meant pacing the halls, limping my broken body past the newborn nursery, staring in at those babies resting peacefully and painlessly. It broke my heart into a million pieces. I would stagger past the window, tears exploding from eyes, desperate for someone to tell me it was all going to be ok. Anyone who has been on this journey knows there are no guarantees and the only mantra you can depend on is “no news is good news”.

Isabella’s 107 day NICU stay was so very uneventful in the grand scheme of things. Yes, she struggled with her blood pressure, she needed multiple blood transfusions, she was fed and not fed many times, and was tpn dependent for a while. She was on the oscillating ventilator for a little over 2 weeks, then switched to the conventional, and eventually, after several trial runs, graduated to the c-pap for good. It took her more than a month to hit the 2 pound mark. She had more x-rays than I can remember, and more heel sticks than I care to know about. She endured more pain than any child should have in a lifetime. But she survived, and we are so very grateful.

Sometimes I wonder why, or even worse, what if. That’s a very dangerous path for me to travel down. So I try to just see what is, just for this day. Today I am blessed to share my life with a beautiful, strong, stubborn little girl. I love my sweet little Bella-boo more than she’ll ever know!

{Isabella around 10 days old}

                                          
{And here's the little lady today. Isn't she cute?}

I love reading other preemie stories, and hopefully you do too. I think it's so amazing to hear the challenges these little ones have overcome. I love to hear the different perspectives and wisdom of the parents as well. If you want to share your preemie story with us, please email us at keepingupwiththekimmels@gmail.com.  

A Preemie Story - Eli

 This is the story of preemie Eli. This family is very special to us as we actually shared a NICU room with them, well technically Cohen had a private suite and Eli was a little jealous, but the same overall room. Eli's mom and I became good friends as we walked the common road of having preemies and all of the up and down emotions that go with it. We met after Cohen was moved from his first NICU room into his second NICU room and I am so, so thankful that we got to meet the Soptich family. Eli's mom, Ciera, was a true source of hope and strength for me as we have walked this journey. Their family is truly amazing and I hope our boys are good friends for a long, long time to come!

  This is a long one, but a very special part of our lives that has to be shared :) Even when Eli is 18, we will be sharing his story!

At 23 weeks into my pregnancy with Eli, I started to have high blood pressure. I had also experienced this with Rylin but it didn’t begin until 34 weeks. We made it safely to 37 weeks. She was only 4 pounds 9 ounces but healthy as could be and I had a complete normal pregnancy with Kendall.

At 27 weeks my high blood pressure was still around 140/90 on the medicine. Dr. Garde   quadrupled my amount of Labetalol and told me to take it easy and spend as much time as possible laying on my left side. Baby boy was a little small but doing fine.  

At 29 weeks Dr. Garde added one more dose of medicine and put me on complete bed rest. I believe my BP was averaging around 160/100 or so. My amniotic fluid was now a little low and baby was measuring a little too small. Luckily, we have a ton of family around to help, and they all jumped right in and took over and a lot of friends started bringing meals. 

On May 3, (day 5 of bed rest) my friend Kara came to keep me company. Funny thing is that my blood pressure was consistently staying around 120/80! I noticed after she left that evening that baby boy hadn’t been moving a ton. I decided it was probably just because I had too much time to sit and pay attention since I was laying down holding still all day. I remember talking to a few people on the phone and mentioning that he hadn’t moved a lot, but also acknowledging that my “mothers intuition” would kick in if there was a real problem. So I tried to relax. 

*blessing/miracle: this is also the same day we (after 2 months) FINALLY got approved to put the kids and my pregnancy on a state health care plan. 

On May 4th, I spent the whole day waiting for baby to move, and he did. He rolled a few times, and nudged me a few times. Nothing as strong as usual, no sharp jabs or kicks to the pelvic bone or ribs. As the evening went on I began to get more worried. My sister in law Amanda made us dinner and hung out for a while. I think my niece (then 6 months) knew something was wrong because she was pretty upset the whole evening which is unusual for her. I tried to sleep, but failed because I was getting really nervous. I had been continuously pushing on stomach all day trying to get a response from him, only feeling those little nudges. 

On May 5th, I fell asleep around 1 am. I woke up an hour or 2 later to check for movement again, after basically pushing him around in my stomach I felt him do a little roll. I dozed off. Woke again at about 5 am. Got up for a while and then laid in the recliner. This woke Rylin up and she seemed nervous too. I still had not felt a strong movement from baby. I was beginning to get really worried. I texted my doc and told her what was going on. She told us to come in right away to labor and delivery to see what was up. My intuition had kicked in, although I hoped I was over reacting. Grandma Soptich came to sit with the girls until Uncle J could come after work at 7am. Once we got to the hospital -30min drive- I was hooked up to the monitors and baby’s heart rate was pretty good (moment of relief), but he still wasn’t moving a lot. My doctor had the nurses start IV fluids. As we look back, this is when Dustin says he knew something was up, I was started on IV fluids and hadn’t even seen the Doctor yet. My BP was super high at this point. After a while of waiting, the ultrasound tech came in to check for a few things. The first thing they looked for were the black pockets (amniotic fluid) around the baby so they can measure them. The tech was looking everywhere and couldn’t find a black pocket big enough to measure. That is when I knew there was a problem, a big problem. I looked at Dustin and I lost it, before the tech could say anything I knew we had a huge problem. No fluid around our sweet boy. In Dustin’s terms “he was saran wrapped in there” and he really was. After not seeing what they wanted on the ultrasound, Dr Garde came in and said “you earned yourself a helicopter ride to Seattle”. There was no fluid and my BP was super high. She told us that she wasn’t sure how long I would stay pregnant down there. That our baby would probably be delivered in -max- 2 days. Enough time to allow for steroid shots for his lungs. Dustin left to go home to get some things. While he was gone, the helicopter decided it was too windy to fly and I had to go by ambulance. At that point, I had had one steroid shot and they had started magnesium in my IV. After begging Dr. Garde to come with me, I soon was on my way to Seattle, alone, with Dustin hopefully not too far behind. 

*blessing/miracle: the ability to text our OB at 5 am, making it possible to avoid the debacle of trying to contact whoever was on call which would have cost us a few more hours. Do you know how much we LOVE Dr. Garde?

It was a long 2 hour ambulance ride. It felt like we were going 30mph. I texted a few friends to let them know what was going on. I received texts from family saying they had already prayed for us. I still get choked up when I remember the feeling of comfort knowing that I had parents, grandparents, brothers and sisters, nieces and nephews, aunts and uncles, cousins and friends dropping everything they were doing to get on their knees to pray for us as soon as they heard the news. It is an indescribable feeling. When we were about 20 minutes from the hospital I, of course, was looking out the back of the ambulance and had noticed we passed a dumped over milk truck, and the traffic was beginning to pile up behind it. I knew Dustin and his dad would get stuck behind it. We barely missed the backup as it was. 

*blessing/miracle: not getting trapped in the traffic. 

When we arrived at UWMC, it took maybe 10ish minutes until I was in my room. A few minutes after this, two nurses were helping get baby on the monitor. My heart rate was in the 80s. One nurse got worried and said that the baby’s was in the 80s as well. Exactly the same as mine. The other nurse said that it was my heart rate and we hadn’t found the baby’s yet. In comes doctor #1 and we found baby on the ultrasound, his heart rate peaked at 130 then dropped again. This was when the nurse put oxygen on me and I knew it was bad and getting worse. Then came a few more people. The anesthesiologist and his entourage came and started asking me a ton of questions. More people came in. Most importantly, the chief resident Dr.Josh came to the head of the bed. He was the first person to make eye contact with me out of the 20ish people who were in there. He explained that baby wasn’t doing well and asked if anyone was coming to be with me. I told him yes but they were stuck in traffic. I also told him that it didn’t matter, I knew the only solution was to get baby out, so lets get it done. I knew he agreed. I had been in this situation before, not as severe, with the same solution. He decided to get me in the OR to monitor me and the baby to see if there was time to wait. After getting to the OR there was a lot of commotion. I was introduced to someone from the NICU and a few more doctors that would be there to help the baby. That is when I realized the journey we were about to make. Dr. Josh and the first doctor kept glancing between each other and the monitors, it didn’t look good. So he made the executive decision to deliver the baby, right away. As I was laying on a cold table, half naked, shaking uncontrollably, with everyone else running around and looking at the monitors, I watched and listened to the conversation between the anesthesiologist and the doctors, trying to hear, trying not to rip the oxygen mask off my face because I couldn’t breath. Epidural? No, it would take too long. Spinal? No, blood pressure too high. I prayed in my mind they would just knock me out all the way and get it over with. I wasn’t sure I wanted to be awake when they got baby boy out of me, I wasn’t sure I could handle seeing him with out my husband by my side. Dr. Josh must have read my mind because he said there wasn’t enough time. Before I knew it, I was being prepped for my cesarean section and counting backward from 10. I was so tired and I remember thinking “don’t close your eyes, because they will think you are passed out when you really aren’t and then start to cut!”. 

The next thing I remember was was hearing my name. I was dreaming. In my dream I remember seeing Ry and her best girl cousin, Brin, walking away from me holding hands. It was sweet. Then I remembered everything and: Ouch! My stomach! The rest is a blur.

When Dustin and his dad got to the hospital, they went to the registration desk. After asking where they could find me, they were told I was just getting out of surgery. You can imagine the surprise he felt, only last hearing from me when I was in the ambulance and I told him about the traffic from the dumped over milk truck. He just found out that not only was his wife in surgery, but his son was already in the NICU (Neonatal Intensive Care Unit). They made their way to see Eli for the first time and were amazed at what they saw. He was 996 grams (2 pounds, 3 ounces) and about 14 inches long. Dustin said there were tubes everywhere, and he was definitely concerned. The best part of this story is about Eli's nurse. To give you a little background info, my husband works hard for a living. By that I mean, his hands are stained with dirt and rough with calluses. His pants look like he has been rolling in the mud, even after they have been washed multiple times. That being said, after scrubbing up at the sink by the entrance to the NICU, he was clean but maybe, just maybe, Eli's very first nurse (Heidi) thought Dustin was too dirty and reminded him to wash up nice and good before even thinking about "touching your baby". After surveying the situation, a son and his father seeing their miniature posterity for the first time, they made their way back to my room and were told I would be back shortly. From what I hear, I was a mess when I returned to the room. I had been on large doses of magnesium, and now a ton of painkillers, add that on top of recovering from the anesthesia from surgery...I was a hot mess! I had to stay on the mag for another 24 hours which would make it hard to go see our baby. 

After a good nights rest in the hospital room (yeah right!) I felt up to making a trip to the NICU. I tried to get out of bed as soon as the magnesium was stopped, but almost passed out. The nurses decided they could wheel the bed down to see Eli. Although it is a huge blur in my brain, I will never forget the trip. We started down the hallway through a few sets of heavy closed doors and turned around what seemed like 50 corners. We made our way through the doors to the NICU and Dustin signed me in. We stopped at the big metal sink so Dustin could scrub up and make sure he was extra clean. I still have no idea how that hospital bed fit down the hallway to Eli's room. I didn't know much about where he was staying, I'm not gonna lie, it was far from fancy and not what I had expected. The bed crashed through the doorway to room 3. There was barely room to fit the head of the bed next to Eli's incubator. I don't really remember my first glimpse of him. He looked like a real baby surprising me with all his hair. He didn't move much and neither did I. I just stared at him, not believing he was ours. I was groggy and pretty out of it so we went back to my room, the bed banging empty incubators and oxygen cans along the way. I don't think I saw him again until either late that night or the next day. I do remember I needed to take a shower. I needed to get up and was beginning to grasp the motivation to do so. Later that night I decided it was time to get up and walk. After gaining my balance and putting on my fancy hospital socks, I did laps around the maternity ward. I think my nurse wanted me to stop but I kept saying I needed to do one more and I needed to take a shower!

Throughout the weekend We made multiple visits to see Elijah. Saturday morning, May 7th, we went to our first morning "rounds". Rounds are a meeting in which the Neonatologist, the Nurse Practitioners, the Residents, the Attendees, and Eli's nurse for the day, all meet to come up with a game plan for each baby in the NICU for the day. Problems with the baby, how to help, what tests to do, and so on. The news for Eli wasn't the best. He had started to turn a dusky grayish blue, he was swelling up and retaining fluid, his heart was enlarged, they needed to check for a brain bleed, and his kidneys and intestines weren't working. Maneesh (the Neonatologist) was so great at explaining this all to us and we left rounds hopeful, but worried. Eli was sick, and they were running tests to find out why. Maneesh told us that so far all the tests they had done came back showing nothing. There was no reason for Eli to be so sick. He hypothesized that Eli had taken such a huge hit on his health right before he was born and that was what he was trying to recover from. In the meanwhile, they kept doing tests incase they missed anything.

On Sunday, I was discharged from the hospital. After going back and forth in my brain about what to do when we got discharged, I decided it was right for me to be home with my family. I couldn't drive, I didn't have a room at the hospital, and our girls needed me. I needed to go home and organize my brain, our new life, and heal before we could plan how to conquer the next 10 weeks with a sick baby in a hospital 2 hours away from our house. So, on Sunday night, we left our 4 day old 996 gram sick baby in the hospital and drove 100 miles away from him.

On the Thursday when Eli was one week old, I went to rounds with the doctors and nurses. A new Neonatologist was in there with us. Which also brought a new pair of eyes. After doing the usual updates on the status of Eli,  he looked at me and asked if I had held my baby yet. Honestly, I hadn't even thought about it. It seemed so far out of reach because he was so sick, the thought just never really crossed my mind. He was a little shocked when I told him that no, I had not held my baby yet. He looked at the nurses and made a goal for me to hold Eli before we left him again on Sunday. I was a little nervous instantly. I told them all that I didn't need to hold Eli, I didn't want to do anything to make him uncomfortable. The team assured me it would do nothing but good for the baby. So I tried to not get too excited, in case plans changed. So, Friday came. Eli was 8 days old when I held him. It was a night I will never forget. Dustin and I were staying in a room on the eighth floor of the hospital. We were told in preparation for holding him, we had to commit to at least two hours in one spot next to the incubator in a pleather recliner. We got to his bed side around 9:30pm. The best way to hold a new baby, especially one weighing 2 pounds, is called skin on skin, or kangaroo care. Basically the baby wears nothing but a diaper and lays on the bare chest of mom or dad. I (of course because I am mom:)) got first dibs. Eli's night girlfriend, Lacey, was on shift that night and took care of everything. I snuggled into the pleather recliner. Lacey opened the incubator and started to arrange his tubes. The nurses there are so amazing with these little teeny babies. It was so comforting to see her pick him up. She was so comfortable holding him, treating him like he was a full term newborn, with a little more caution for his tubes and breakable body. Before I knew it, he was on my chest. Instantly his respiratory rate calmed and he relaxed. Lacey taped his breathing tube, feeding tube, and IV to my shoulder, and also to the chair in one or two more places, just to make sure they didn't get pulled out. She laid a few warm blankets on him and me and left us. Dustin and I could not stop smiling. I realized that all the fear I had began to melt away. He was our baby. I was sure I would bawl the first time I held him, but I was grinning ear to ear.  I could barely feel his weight on my torso. His head was about the size of a baseball and it fit just below my collarbone. His scrawny little body down to his toes reached a few inches above my belly button. I could feel him breathing. I could see his furry back and face. He looked up at me when I talked.

my eyes are crazy, but it is the only one with him
looking up at me the first time I held him :)

He must have liked his time being held, because the next night I walked in to see a used kit from the respiratory therapists. At first my heart jumped because I thought something was wrong. Then I realized I could see more of his face because he was breathing with just a CPAP, he was no longer intubated! Two days later, the girls got to meet him for the first time. Dustin also held him. When he did, Eli was swaddled. Like a big boy. Our baby, who was just over a week old and gestationally 31 weeks was doing things that seemed so normal for a full term baby. Things that I would have never imagined. This was just the beginning.

 Eli was born on May 5, 2011 at 30 weeks. He weighed just 2 lbs 3 oz and was 14 inches long. Eli had a very rough start and is one incredible little fighter! Despite one bout with pneumonia and a short stay at the hospital, Eli is doing amazingly well today. (Cohen would like to add that although he is a month younger than Eli, he has him beat in the weight department :)

{This is Eli at 3 weeks old and 10 months old}

 

{Eli and his adorable sisters, aren't they all the cutest!?}

 

{And here is Eli today! A wonderful one year old and some months!}

 

{The boys at the March of Dimes on Eli's birthday}

{The boys and moms with some of their best NICU gals}

If you would like to share your preemie story, let us know! You can email us at keepingupwiththekimmels@gmail.com. We love to read and share about other preemie miracles.