Kristina is a mom to two preemie girls – the first born three months early and the second at 33 weeks. In both cases, Preeclampsia was the culprit. This is the story of her first pregnancy and the birth of her older daughter, Kailey, along with a bit about Kailey’s early life and her life today. If you’d like to share your prematurity story on our blog, email email@example.com.
12/6/02… The stick has a plus sign!! I am pregnant with my first child and cannot wait to spread the news! The first person I wanted to tell was my Grandma Honey… She was dying from a brain tumor. We had just got married in June and of course she bought us a baby girls dress as a hint to get going as I was the only granddaughter! She loved her great grandbabies, but they were out of state. Grandma knew what my news was when I told her… She passed away later that month on the 27th. Then we told the parents together by taking them out to dinner and giving them congrats on being grandparents cards! They were so excited! then all the friends!
5/22/03… My 6 month checkup… I was swollen; I had my preschool class outside for a picnic that day… on my feet all day… that was my excuse! Not thinking that weighing in over 205 (+60 pounds gained in less then 6 months) was a bad thing. My pressure was a little higher then normal and they had me lay down on my left side. It came down. I was sent home since I was feeling fine. I was told if I started to see black spots or was not feeling good to call back.
Hours later I was in pain with a horrible headache. It didn’t get better no matter what I did. By 4 am I couldn’t take it anymore… There was a little voice in my head that said call that doctor and call now! So I called and he was on call at the hospital, and told me to come in so I could go on the monitor to be checked. I would probably be home in a few hours. With no bags packed, I called my mom to see if she could be with me so husband could go to work, and I left for the hospital.
I got checked in, put on the monitor and things had changed since the 12 hours prior to seeing my doctor! My pressure was definitely a lot higher. After only being there briefly I was told they were going to keep me overnight, then only a few hours later I was told I am there until I deliver…. “Ummm, it’s May 23rd, I am not due till August!!!” The doctor’s response was “You are not going to make it till August, most likely not to July and we hope to get you to June.” I had developed Preeclampsia. My blood pressure was HIGH and I had protein in my urine. I was HUGE, too, from all the edema! I was unrecognizable!
The next four days were a blur… Numerous blood workups, ultrasounds, medications…. I do remember that nasty shot they gave to me in my butt… OW!!! But that was the best thing they gave me since it was a steroid (betamethasone) to help my baby’s lungs mature faster! They knew she was going to be early! Many doctors came in to talk with us. The neonatal specialist came in to talk and explain what their role was. I remember I was kept in a dark quiet room to keep me from having seizures. The only visitors I had were my husband and parents. No friends were allowed to visit. No TV, no phone, and not to let the IV beep long when things needed to be changed! Any little sound could harm me and my baby. So why did I say four days? Because on Day 4, May 27, 2003, I got very sick during an ultrasound and the baby wasn’t doing well. The doctor came in and told my family it was time to deliver to save me and hopefully give my baby a fighting chance at survival. I was very ill, and do not remember anything from the last three days.
5/27/03 All I know is what I have been told. I remember going from a dark, quiet room to a BRIGHT white room… the operating room.. I know my doctor was there… I know I heard a voice telling me to keep fighting… Don’t give up, your baby is going to need you… Keep breathing, Kristina! That is all I can tell you about my memory of Kailey’s birth. I don’t even remember them telling us congratulations, it’s a girl, since we waited to find out the sex at delivery. I was told the doctors told us not to expect much from her because the baby was so early.
3:37pm Kailey Marie was brought into this world by emergency c-section. She weighed in at 2 pounds and was 13.5 inches tall. She took her first breath, then was quickly taken to the NICU! She even came out pinkish, I was told. They wheeled her by me, but I don’t remember. I just had that voice telling me to keep breathing, it’s not my time!
I guess I was pretty sick… I didn’t know anything about preeclampsia… I had never even heard of it! I don’t blame my doctor because it happened so fast and he’d always kept a close eye on me! He stayed with me in the hospital when I was so sick those four days, I was told. He was ready when he needed to be!
Kailey was born at 27 weeks gestation. That is 13 weeks too early! Her footprints looked like our thumbprints!! Her fragile legs and arms were as thin as your finger. Just a few months before Kailey was born a friend delivered her baby who was 5 lbs and I remember thinking this baby is so tiny!! Imagine mine now at 2 pounds! Now get this, a baby taken to the NICU before Kailey… 11 pounds!! So here in the NICU was an 11 pounder and here comes my 2 pounder.
Since she was so early there were some issues. She had Prematurity of the lungs, and she was put on a ventilator to help her breath so she wouldn’t burn too many calories and lose weight. She was given surfactant to help her lungs since she had respiratory distress. She was anemic, jaundiced, developed ROP, had apnea spells, received three blood transfusions, had a heart murmur, acid reflux, got daily blood tests and ultrasounds. She was treated for numerous infections and was always being watched to make sure she didn’t develop more.
5/30/03 (evening) This is the first memory I have of my new baby girl. I was wheeled down to the NICU. I couldn’t walk yet with my condition and the medication. I thought she looked like a Barbie doll, just slightly bigger….She’d gained weight! She was 2 lbs 2 oz! She gripped my hand. They had so many wires on her. Then the doctors came in to talk. It wasn’t a good talk. It was the talk to let us know that they found 2 bleeds in her brain. All that other stuff she went through is nothing… She had a grade 1 and grade 4, the worst grade. The doctor told us they don’t know what the outcome for her would be. They were very honest and up front with us that she could be mentally disabled, have cerebral palsy, be blind or even die. “We don’t know how tonight is going to go, so would you like to hold your baby? It can only be for five minutes.” She needed to be in the incubator to keep her body temperature. Her body was so fragile.
I held my baby for those whole five minutes… I just kept looking at her perfect tiny little body. What does our future hold? It didn’t matter as long as I was able to keep my baby! “Please God, don’t take my baby! You didn’t take me, I was told to fight for her, please let her stay!” My five minutes were up and I needed to get back to my room to rest. Know what other thing I remember about this day? A few minutes later the tornado sirens were going off for a funnel was spotted not too far away. Talk about a crappy night, but it didn’t take away that fact I got to hold my baby!!!
Here is our story of life in the NICU…
5/31/03 We made it through the night! Kailey’s first feeding… poor thing… do you know how little 1cc is? it’s a drop! But it was mom’s milk!
6/2/03 I’m being released from the hospital. I don’t want to leave my baby. But I don’t get to go home. For the next month I live at my parent’s house where someone can be with me for 24 hours a day. With all the meds I am on, things could go wrong. My pressure can go either way with meds and having had the preeclampsia. I’m still sick.
6/3/03 Kailey is a week old… no more ventilators after 3.5 days, and on room O2! A head scan is done, and the bleed is shrinking in size. All I get to do is sit and watch my baby, and not for very long. I haven’t held her in a few days. I only get a little time to visit since I am on strict restriction to get my own health in order.
6/7/03 She’s 1½ weeks old, and I get to hold my Kailey for maybe about 25 minutes! Feedings are up to 6cc. Kailey weighs 2 lbs 4oz! I even got to feed her. (To clarify: I hold a tube up that goes down her feeding tube.)
6/10/03 At two weeks old, I start to do Kangaroo Care. I’m told I get to hold my baby for a whole hour as long as her stats and temp stay in normal range!! And they did! She got new IVs in her hands yesterday – we joke those are her boxing gloves. There is no change in her head ultrasound.
6/11/03 We are told Kailey needs a blood transfusion. I give blood to see if we are matches, then we find out it cost more to use our blood. It’s just not right…
6/12/03 Today is blood transfusion number one. That afternoon Kailey shows her feisty and determined preemie side and rips out her wires. Keep up that attitude and be a fighter Kailey! Two days later she had transfusion number two and was back on oxygen for 24 hours.
6/16/03 Kailey if off her IVs but the hookups are there just in case! Then they are removed the next day! She weighs in at 2lbs 11oz, and since her IVs are gone we can dress her!! Do you know how big Preemie clothes are on her? They are not meant for 0-5 pounds! She swam in them at 2 pounds, but was so exciting!
6/19/03 The retina doctor came in to day to look at your eyes since you were on oxygen. He will see you a few times before your discharge. Mommy learned to not be in the room when they examined your eyes!! I never saw anything so cruel looking! But the doctor said you were strong and a fighter!
6/23/03 For the last two days her temperature was up and down, and so tests were run for signs of infection. Her weight is 2lbs 10oz, and has been there for the last 3 days. If she develops NES she would have to be transferred to Chicago Hospital. We were very lucky that our home town hospital was literally just approved weeks before Kailey was born to keep little early babies! Kailey was their first!
6/27/03 Happy one month birthday! AND we reached three pounds today! Kailey is doing pretty well… drops a little weight tomorrow then back up in the following days.
7/1/03 Five weeks old today, 3lbs 5oz, and I got to give you a bath for the first time today. It was a sponge bath in the incubator. Physical and occupational therapists are now working with Kailey.
7/3/03 She took her first bottle today with the nurse. As a preemie, she has to learn how to suck, swallow and breathe at the same time… Things parents take for granted until you are in the NICU! I was upset I wasn’t the one who gave her that first feeding, but they had to carefully watch her! I got my turn the next day.
7/4/03 Our first holiday, the 4th of July. I’m getting better myself now. I am still limited in terms of my activities and still living at my parents’ house. I am not able to drive due to the medications. I still have to rely on people taking me to see my baby at the hospital. For five weeks I have left the hospital empty handed. The worst is when you happen to walk out when another family is bringing their baby home. Why did I have a preemie? Why did I have to have preeclampsia and risk both our lives? What is our future going to be like with Kailey? Will she be normal and be able live a normal life or did that brain bleed damage her?
I had so many questions that I remember July 4th very well to this day! I felt guilty about not being there with my baby 24/7. I didn’t understand how sick I was, all I wanted was to take care of my baby and get her better! After all, isn’t that what a mom is suppose to do? I spent some time up in the NICU till we went home to have a picnic with family and friends. The guilt really got me that day!
I called to check on Kailey as I did daily when I was at home… thank god for the 24 hour parent line! They told me Kailey was being feisty! I remember I talked to with Nurse Judy. She said mine was the tiniest one, but the loudest one in the NICU that night! Judy got me laughing through my guilt tears! I knew then it was ok that I was not there. I had to get myself better to be able to take care of Kailey when she came home.
7/6/03 My baby shower! Since we knew Kailey was fighting, striving and thriving, I agreed it was safe to go ahead with the shower. Kailey was so loved and blessed by so many!
7/11/03 Kailey gets her big girl bed today! She is 3lbs 15oz. and maintaining her body temperature and doing good with feedings! The next day Kailey reached 4 pounds and there is talk of her coming home… She wasn’t due until the end of August and that is when they said we would take her home the soonest… And here it was only mid July!
7/15/03 4lbs 4oz… you need to be 4 ½ pounds to go home and we are so close!So many emotions… I wouldn’t have to wait for someone to take me to the hospital! I would have my baby with me and I am the one who gets to do everything… then… what if something goes wrong… what if there is something I miss and I hurt her, what if she stops breathing? She had some apnea spells and we learned what the alarm was what and how to stimulate her, but the nurses and doctors were right there!
Finally, we got the news!! We would take her home on Friday 7/18/03 at 7 ½ weeks old and still not due for another month! As long as she didn’t lose weight or nothing happened, that is. We stayed in the nesting room for two nights to “practice” being parents on our own.
7/18/03 HOME SWEET HOME!!! But we had a long road ahead of us! So many emotions… Happy, scared, excited, worried… One day at a time! My mom came and stayed when my husband was away at work. I have a GREAT family! My friends and family (as long as they were healthy) were even able to come and visit.
7/22/03 The first doctor visit. She’s 4lbs 11oz and 17 inches long. And eight weeks old today! Things are looking good. She has a herniated belly button from her pic-line ( we call it her lifeline) which should eventually go away.
After leaving the NICU, her first few months were full of doctor appointments. We visited specialists for her heart and eyes, and then we found out she had some hernias that would need surgery. That was another scary moment as parent… although a minor surgery for all she went through, but she was still being put under anesthesia. She did great.
Actually, Kailey’s whole first year went GREAT! She was sick only once that ended us up in the ER. She went to a development clinic each month to check in and keep her on track for development. She had some delays, mostly in large and fine motor skills. She didn’t walk until she was two. She had physical therapy through the hospital until the age of three. At the age of five she was diagnosed with CP but a mild form! Nothing major like we first were told when finding the brain bleeds. When she was six, she had three EEGS and an MRI of her brain to see if she was having seizures. It came back that she is at higher risk for them because of the bleeds.
When we brought Kailey home from the NICU and we were still concerned about the bleeds damages we were told we would know as she hit her milestones. Most of her milestones were late, but she hit them!! Today, she struggles with math in school… but is a great reader. She receives OT in school and goes to physical therapy once a week for her legs.
I survived Preeclampsia and so did Kailey. This is not my only survival story, but this is some of Kailey’s story and it’s all wrapped up together. My mother and grandmother did not have Preeclampsia. I still wonder why I did. Twice. I have met many wonderful people through the Preeclampsia Foundation! Everyone has their story. Some do not have the outcomes we have and many have struggled more! It’s a horrible disease that we hope one day no mother has to suffer with. No family should have to lose a baby or mother to Preeclampsia when this is supposed to be one of the greatest gifts and blessings. I am lucky to have both of us here today. I am not going to lie – I feel robbed of many memories and things parents take for granted. I didn’t get to experience many of Kailey’s firsts and it’s hard, but I do know how blessed I am!