Mom to Kylee Nicole
Born June 18th, 2004 at 33 weeks 4 days
Died February 1st, 2005
KYLEE’S STORY: NO LONGER IN MOMMY’S ARMS BUT FOREVER IN HER HEART
Her story actually began before Friday January 23, 2004 but, that is when I discovered thanks to two little pink lines that I was expecting my first baby, I was 21-years-old… Of course like a good deal of mommies I pictured a Sweet, Beautiful, Baby Girl and visions of cute pink dresses and frilly outfits. My pregnancy was perfect; my only problem was awesome “morning” sickness. I couldn’t wait to find out what I was having (although I suspected my baby was a girl), my suspicions were confirmed on April 7th, her father was happy and excited but also a little sad because just 3 months earlier he was suddenly prevented from seeing his then 23-month-old son by the mother.
My pregnancy with Kylee was still going great, at the U/S where they told me the sex; they also told me she was a strong healthy baby, about 1 pound, 4 ounces already. At about 28 weeks I started having really bad nausea and swelling, and blurred vision, not to mention heartburn like nothing I’ve ever felt! I promptly reported these symptoms to the midwife and also told her I was 100% sure I had Pre-eclampsia as I had all the classic symptoms, she immediately dismissed my complaints telling me and I quote ” It is too rare, you do NOT have Preeclampsia, cut down your salt intake, and stay off your feet more”, (interesting thing to say to someone who can’t keep anything in their digestive system.) My midwife ignored my complaints and oh yes let’s not forget the requisite blood pressure readings over the next few weeks; Newsflash nurse 140/90 is not healthy for someone who’s normal BP is around 95/65! after a several weeks of this runaround and not being able to walk because of the pain and swelling and not being able to feel my feet On June 15th at just over 33 weeks my Mom called the midwife (you had to have Their permission to go to the hospital otherwise you violated the practice rules) and told her “kiss my a**, my daughter is in very bad shape, she is very sick, she is going to the hospital right now” and proceeded to carry me to the car, as I said before I literally could not walk.
At the hospital I was rushed into the triage area in the ER where they took my BP (130/95), and promptly sent me to the maternity ward, where I was started on Mag and hooked up to fetal monitors and it was such a relief to hear the beautiful sound of her heartbeat. All the while they’re taking blood and urine, and finally after a couple of hours the doctor comes back and tells me I have mild Preeclampsia to which I replied I know, (to say the least he was pissed when he found out all that I had previously told the midwives), at this point my BP was a little higher 140/100, but I was still stable so just as a prophylaxis around midnight I was given Betamethasone to help speed up her lung development, Just In Case, well that was a very smart decision because just a few hours later my BP and urine protein shot up, after a very unreassuring urine count the doctor comes in and informs me that I am to be sent to MetroHealth Medical Center in Cleveland via LifeFlight STAT, I admit the thought of getting on a helicopter scared the s*** out of me so I asked the doctor if my mom could take me or if I could go by ambulance and his reply was “that is not possible” I asked why not, he said “because you could die on the way”, not exactly tactful but, hey, I appreciated his brutal honesty! (I was later told that my body was starting to shut down on me, my urine output for 3 days was 50cc and it was mainly blood), so they load me on to the LifeFlight and we reached the hospital (a 45 Minute Drive, in less than 15 minutes, My Mom actually arrived as we were landing.
They managed to stabilize me just after my arrival at Metro. I should mention that by appearance I looked so bad that the 2 nurses that took over transporting me to my High Risk room actually looked at one another as they were talking and said “is she still alive?” My weak reply to that was “yes”. Upon arriving at the ward induction procedures were immediately initiated, (Foley bulb, Pitocin) because they figured I would be in better shape if I could deliver vaginally. Well I dilated to 4 centimeters within hours and I was stuck at 4 for most of my 36 hour labor!! My BP started going up again, and by this time my eyes were swollen shut, my universe was spinning, I couldn’t close my mouth because my tongue was swollen and at some point I passed out after my BP hit 220/190, the last thing I remember before passing out was making my mom cry, because I begged her “let me see my Baby Girl and then let me die” at 12:02am on June 18, 2004 Kylee Nicole was born via LTCS (Low Transverse Cesarean Section) after an Epidural that had to be replaced several times and still didn’t work and several shots of Ketamine, A.K.A. Special K) at 33 weeks, 4 days, weighing 3 pounds, 10.6 ounces and 17″ 3/4 long.
I actually regained consciousness and was blubbering “Pressure, Oh Pressure” in the OR and the next thing I remember seeing was a long purple leg, I again lost consciousness not only because of the Preeclampsia but also a reaction to the antibiotic they give as a prophylaxis to prevent infection. When I woke up I was informed by her Grammy and her father that we had welcomed a Beautiful Baby Girl into the world. Kylee was 1 1/2 days old when I finally got to see her, before I was able to see her a Geneticist came in and said they thought they had detected a heart murmur at birth then told me later that day that they didn’t hear it anymore. I didn’t know what she looked like, (I imagined her father and myself, boy was I ever right on) but I knew right away I would instinctively know, and I was actually guided to her Isolette by her cry, she cried like a sheep… Thankfully she had been taken off the vent shortly before I got to see her, (sadly at one point I would have to see her on a vent.)
She had previously been called Peanut by everyone, but My Mom and I christened her with our own special name “Bean”. Kylee faced many struggles in the NICU, trying to take her feeds, failure to thrive, weaning down the o2 level, she finally came home on July 16, 2004 weighing 4 pounds, 9 ounces on 1 litre of o2 and full bottle feeds, we took her to all of her pedi check-ups and for 3 1/2 weeks she did great- gaining weight, eating, no problems, a few days later I took her back for a weight check and was told she would have to be transported to Rainbow Babies And Children’s Hospital because they were concerned about Her weight so they allowed me to take her myself… We checked Kylee in August 20th (the day before my 22nd birthday), and within hours based on an upper GI scan and being observed as she was feeding it was determined that she needed an ng feeding tube in order to be properly, consistently nourished because she had such bad reflux (or so they thought, the real answer was a bit more ominous I’m afraid), (around this time My Mom and I begin pleading with them to test her for everything) so the tube was placed and we had our teaching and after a few days we were back home again… She did wonderfully except that after a little over a month the Ng started to irritate the sinuses and the esophageal passages, so back to Rainbow where a G-tube was placed in late September, (this is where all Hell begins to break loose.) (around this time the Social Worker from you-know-where also invades my existence, because her Cardiologist told me I could d/c her Heart monitor but never wrote me a d/c order and therefore the home care nurse reported my mom and I, and I missed a few hours at the hospital because I was trying to go to school to make a better life for my little family and I was also very sick with Strep and told not to come if I was too sick. A night in for observation and back home again! And back to the heart murmur, they indeed did detect it again and diagnosed her with Pulmonic Stenosis (the valve that pumps blood from the heart to the lungs was way too narrow and causing the other valve to put in major overtime), they thought this could be corrected with a heart cath, alas the valve was so narrow they couldn’t even get the balloon in to try and inflate it, so home again with the warning that we would be getting a letter stating when she would need to come in for open heart surgery!
October 14th she has the open heart surgery and comes through it well. One week recoup time and back home… again. 1 1/2 days at home she develops a fever and I take her back to the hospital, they do an x-ray and determine that instead of healing and growing back together, a lot of her sternum just disintegrated. Back to the OR, they open her up again and scrub the bone and make it bleed to create fresh bone…We never saw her outside of the hospital again! Another week in the hospital to recoup and, SURPRISE, off to a new hospital as she is still having failure to thrive issues and they want to keep an eye on her because they believe it is related to her heart problems.
So goes our introduction to the Cleveland Clinic Children’s Hospital, A.K.A. Health Hill. She did quite well there- gaining weight, engaging in OT and PT, even taking some of her feeds by mouth again…late November my Mom and I start to notice what appears to be bile being excreted from her G-tube, we alert the nurse who assures us that it’s not and that there is no problem… Just a few days later I call to check before going to see her and am told that she is presently in the process of being transported back to Rainbow as she has really bad diarrhea and they want to run tests (I ask if they can hold off on the transfer for an hour so I can be there, they agree), they finally test her for everything, EXCEPT Leukemia!
Back to Health Hill just a couple of days later- she’s still gaining everything appears to be fine but…Early December I call before coming up again and she is again being transferred back to Rainbow (I again ask if they can wait for me to get there, again they agree) because she is, in fact excreting bile!!!!) Back to Rainbow for another week, another battery of tests, all appears fine, though the tests reveal that she has a slight pneumonia, she seems to get over it pretty quickly and so we head back to Health Hill… Mid-December everything is good and there is even talk of her coming home in a couple of days. Late December- Kylee is transferred back to Rainbow. More tests, the pneumonia it is discovered is still present, and with a vengeance, She appears fine but it is basically destroying her lungs, so I reluctantly agree to let them medically induce paralysis so that they can put her on a vent so she isn’t trying so hard to breathe, so she can continue to gain and grow…
More tests and they can’t determine what type of pneumonia she has contracted. At this point they’re scratching their heads and on a whim test her for pneumocystitis pneumonia known as PCP (most common in AIDS and other immunocompromised patients.) They ask for permission to test her for HIV/AIDS which they already know they won’t (and didn’t) find, again I agree but, at this point I am highly pissed! Late December- she is doing so much better she is transferred from the PICU to the 4th Floor (Infectious Disease Ward), again talk of her coming home fairly soon. She spent about 2 1/2 weeks there and started to show some signs of developing more immune system issues. Back to the PICU…
Friday January 28th finally they test her for Leukemia, later in the night we find out she has AML (Acute Mylogenous Leukemia), very rare in a child her age. Her belly starts blowing up, they stop her feeds, but It is waaaay too late, they didn’t stop her feeds soon enough, they test and find out that the pneumonia has left her susceptible to other infections, and she has developed a nasty infection (a form of NEC) in her bowels. We go home that night as we were told she is in good shape and her belly starts going down. The next morning Monday the 31st we are expecting to have a meeting to talk about treatment options for the AML, which wasn’t actually even affecting her at the time except in the weight department…
I received a call at nearly 5 in the morning telling me Kylee had gone into Cardiac Arrest and was now stable (I was very angry that they didn’t call me as soon as it happened, and they had no explanation for this, except they thought I needed my rest, WTH?), I come into the hospital and her belly is blown up worse than the day before, I start bawling and tell my mom that she looks terrible and that she’s dying (Please forgive me Baby Girl), we are subsequently taken into our “meeting,” which was basically an ambush, and we are told that she is dying, there is nothing that can be done to which I started screaming at the top of my lungs Not My Beautiful Baby and then I started to jump on the table and tried to go after the PICU attending for some answers, bless my mother, she pulled me back.
We went back to her room and the Resident came in and we asked what happened, bless this person’s heart they told us the truth, the terrible truth being that my Angel was dying because they weren’t paying enough attention to her with the infection and her blood pressure dropped because of it and they weren’t able to get to her in time to get it back up since they weren’t paying attention, so her little body started shutting down.
We spent the last day and night of Kylee’s life making memory projects (and may God truly bless you Katie Battelini, for literally giving me the shirt off your back back so that I could make the T-shirt I wanted to make with her little foot and handprints!)
Kylee died in mine and my mother’s arms after we made the incredibly difficult decision to pull life support on February 1, 2005, 7 1/2 months, 2 hours and twenty-nine minutes after we first welcomed her. We pulled life support at 2:16am and she died at 2:31am still fighting for her Precious Life.
I am no longer angry, I just long for my baby girl so badly, however I lost a lot of the trust I had previously invested in the medical community as a result of everything Kylee endured.
I’ve never done anything as hard or as sad as saying goodbye to My Kylee Bean.
I delivered my first Rainbow Baby, Leonidas Ronald on September 6, 2007 in Lorain, Ohio.
Thanks to an amazing doctor that I met in November 2010, and an extraordinary young woman whom I think of as a sister who graduates from med school in mere months (Angela Weller) I have regained much of the trust I previously lost in the medical community. They have shown me that there are still care providers who are the true epitome of what a care provider should be.
Rainbow Baby number 2, Baileyana Nicole was born June 14, 2011, at MetroHealth Medical Center (this time by choice.)
Shelly can be contacted at KyleeandLeonidasMommy@yahoo.