Kailey's story, Her first 2 months due to Preeclampsia

Posted On Saturday, January 15, 2011  by Kristina

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 new 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 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. I went to doctor, 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.  Was told if I started to see black spots or not feeling good to call back.

Hours later I was in pain with a horrible headache. It didn't get better now matter what I did. By 4am 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 told me to come in and would go on the monitor to be checked, and would probably be home in a few hours. So, no bags packed called my mom to see if she could be with me so then husband could go to work I left for the hospital.

I got checked in, put on the monitor and things have changed since the 12 hours prior to seeing my doctor! My pressure was def a lot higher. After only being their briefly i was told they were going to keep me over night, 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 no to July and we hope to get you to June” I had developed Preeclampsia. My blood pressure was HIGH and I had protein in the urine. I was a HUGE too from all the edema! I was unrecognizable!

The next 4 days were a blurr… 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 steroid(betamethasome) 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 came in to talk and explain if we had our baby early what their role is. 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 4 days? Because day 4, May 27, 2003 I got very sick during an ultrasound and that baby wasn’t doing good. The doctor came in and said it was time to deliver to save me and hopefully give my baby a fighting chance at survival.

5/27/03 I don’t know my days n times… All I know if what I have been told. I remember going from a dark, quiet room to a BRIGHT white room… AKA Operation Room.. I know my doctor was there… I know I heard a voice keep 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 remember them telling us congratulations it is a girl since we waited to find out the sex at delivery! I was told the doctors told us not to expect much at delivery 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, peed, 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!

SO I guess I was pretty sick… I didn’t know anything about preeclampsia… I never even heard of it! I don’t blame my doctor because it happened so fast to me and he always kept a close eye on me! HE stayed with me in the hospital when I was so sick. He was ready when he needed to be!

Kailey was born and measured at 27 weeks gestation. That is 13 weeks born 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#?oz and I remember thinking this baby is soo tiny!! Imagine mine now at 2 pounds! Now get this, the baby born before Kailey… 11 pounds!! So here in the NICU was an 11 pounder and here comes a 2 pounder!!

Since she was so early there were some issues. She had Prematurity of the lungs, she was put on a ventilator to help her breath so she wouldn’t burn calories trying to breath and lose weight. She was given surfactant to help her lungs since she had respiratory distress. She was anemic, jaundice, ROP, had apnea spells, 3 blood transfusions, heart murmur, acid reflux, daily blood test and ultrasounds. Was treated for numeroud infections and was always being watch to make sure she didn’t develop infection

5/30/03 (evening time) 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 meds. I thought she looked like a Barbie doll, just slightly bigger….She gained weight! She was 2#2oz! 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 has gone 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 of Kailey will be. They were very honest on up front with us that she could be mentally retarded, cerebral palsy, blind or can cause death. “We don’t know how tonight is going to go, would you like to hold your baby?” “But it can only be for 5 minutes.” She need to be in the incubator to keep her body temperature and her body is so fragile. I held my baby for those whole 5 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 5 minutes were up and I needed to get back to my room to rest. Know what the other thing I remember about this day? A few minutes later the tornado sirens were going off for a funnel was spotted not to far. Talk about a crappy night of news, but it didn’t take away that fact I just 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 a 1cc? 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.

6/3/03… Kailey is a week old… no more ventilator after 3.5 days and on room O2! Head scan done, bleed is shrinking in size. All I get to do is sit and watch my baby. 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 health better.

6/7/03 1½ weeks old and I get to hold my Kailey for maybe about 25 minutes!! Feedings are up to 6cc. Kailey weighs 2#4oz! I got to feed her. (I hold a tube up that goes down her feeding tube)

6/10/03 2 weeks old and I start to do Kangaroo Care. I get to hold my baby for a whole hour as long as her stats and temp stay in normal range!! She 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 blood transfusion. I give blood to see if we are matches. Then we find out it cost more to use our blood!! (not right!!)

6/12/03 Blood transfusion number 1. Done and did good. That afternoon Kailey shows her feisty and determined preemie side and rips out her wires when she was mad! Keep up that attitude and be a fighter Kailey! 6/14 was transfusion number 2 and back on oxygen for 24 hours.

6/16/03 Kailey if off her IVs but hookups are there just incase! They are removed the next day! She is now weighing in at 2#110z and since her IVs are removed we can dress her!! Do you know how big Preemie clothes are on her?!?! They are not ment for 0-5 pounds! She swam in them at 2 pounds, but was so exciting!

6/19/03 Retina doctor came in to day to look at your eyes since you were on oxygen. He will see you a few times. Mommy learned to not be in the room when they examined your eyes!! I never saw anything so cruel looking! NICU Dr said you were strong and a fighter!

6/23/03 The last 2 days temperature was up and down and test were run for signs of infection. Weight is 2#10oz, for 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 1 month Birthday! AND we reached 3 pound today! KAiley is doing pretty good… drops a little weight tomorrow then back up the next days.

7/1/03 5 weeks old today, 3#5oz and I got to give you a bath for first time today. IT was sponge bath in the incubator. (She also pooped all over one of our favorite NUCI nurses.. lol) Physical and occupational therapy working with Kailey.

7/3/03 took first bottle today with the nurse. As a preemie, they have to learn how to suck, swallow and breathe at the same time… Things we take for granted until you are in the NICU! I was upset I wasn’t the one who gave her her first feeding, but they had to carefully watch her! I got my turn the next day!

7/4/03 First Holiday The 4^th of July. I’m getting better myself now. I am still limited on my activities and still living at my parents. 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 5 weeks I have left the hospital empty handed. The worse is when you happen to walk out when another family is bringing their baby home because they are healthy. Why did I have a preemie? Why did I have to have preeclampsia and risk 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 of why? I remember July4th very well to this day! So many emotions because I felt guilty of 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 this day! I called up 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! Like the call was yesterday! She was the tiniest one, but the loudest one in the NICU that night! She got me laughing through my guilt tears! I knew 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 my baby shower they had been planning! Kailey was so loved and blessed by so many!

7/11/03 Kailey gets her big girl bed today! She is 3#15oz. She is maintaining her body temperature and doing good with feedings! The next day Kailey reached 4 pounds!! There is talk of her if she conitues to do this well we can soon take her home… She wasn’t due until end of August and that is when they said we would prob take her home the soonest… It was only mid July! But before you can take a preemie home, you have to take a CPR class which is offered through the NICU. We also got trained on the at home apnea/heart monitor you would be sent home on (just until she was year old).

7/15/03 4#4oz… you need to be 41.2 pounds to go home.. we are so close!! There is more and more talk to go home in the next few days! 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 is ther is something I miss and I hurt her, what if she stops breathing? She had some apnea spells and we learned what alarm was what and how to stimulate her, but the nurses and doctors were right there! So many emotions! Then we got the news!! We will 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! We stayed in the nesting room for 2 nights to “practice” that way the NICU staff was there if there was any problems.

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! I was back at my home too. My mom came and stayed when the husband was away at work. I have a GREAT family! My friends and family (as long as they were healthy!!) were able to come and visit! We kept that strict hand washing in place to see Kailey!

7/22/03 First doctor visit, 4#110z and 17 inches long! 8 weeks old today! Things are looking good! She has a herniated belly button from her pic-line ( we call it her lifeline!) should eventually go away (she has an “outtie” these days!)

After leaving the NICU her first few months were full of dr. appointments. Specialist for her heart, eyes, and then we found out she had some hernias and would need surgery. The was another scary moment as parent… although a minor surgery for all she went through, she was still being put under anesthesia! She did great and only spend one night up at Children’s Memorial!

In October she started RSV shot during the winter months to help keep her healthy and we keep her home whenever possible. RSV can be deadly to preemies because of their lung development. It was not worth the risk! If anyone was sick, cold, flu anything they were not allowed around Kailey! That included us as parents! Kailey’s first year went GREAT! She was sick only once that ended us up in the ER. She went to development clinic each month to check in and keep her on track for development. She had some delays, mostly in large n fine motor. She didn’t walk until she was 2. She had physical therapy through the hospital until the age of 3. At the age of 5 she was diagnosed with CP but a mild form! Nothing major like first was told when finding the brain bleeds!. When she was 6 she had 3 EEGS and an MRI of her brain to see if she was having seizures. It came back she is at higher risk for them. She does have some damage that can be seen from 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!! She struggles with math in school… but is a great reader. She received OT in school and goes to physical therapy once a week for her legs. She complains of them hurting and being tight. I just think its because we love her PT so much! We have been with Kelly for 2 years now! Kailey will be turning 8 on 5/27/03. Where has the time gone?

I survived Preeclampsia and so did Kailey. This is not my only survival story, but this is some of Kailey’s story and her story is because I had Preeclampsia. My mother and grandmother did not have Preeclampsia. I still wonder why I did today. I had it 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 to say I feel robbed of many memories and all things parents take for granted. I wasn’t the first for many of Kailey’s things (feedings, holding. Baths…) and it’s hard, but I do know how blessed I am!

PS... Until I get Addison’s story written… Addison is my 2^nd miracle born at 33 weeks (3#15oz) when I developed Preeclampsia and HELLP. Another birth story with no memory because I was so sick! I am blessed I got further along and Addison was born healthy, I once again had to fight for mine.