It seems like Kyleigh has been in a hurry to write her story since she was first created. Certainly every situation has been “unstoppable” and an opportunity to recognize and claim the “blessing” (yes, this word is not the easiest to use and I choose it for intention more than my current sentiment). This blog will use these words to paint Kyleigh’s story and the role we get to play in it.
Sunday May 3, 2015 started like any other morning for the last 53 days of hospital bedrest.
5-5:30 am: Vitals check (blood pressure, temperature, fetal heart tones). All normal.
6:45-7:00 am: Started to feel crampy and achy, drank water, used the restroom
7:00-7:30 am: First Doctor rounds. He peeks his head in with the usual “How are you feeling?”. I say “Actually, not great”. Dr immediately shows concern since this is the first time I have ever replied with anything other than “good”. I explain how I’m feeling. He sends the nurse in to check vitals again and put me on the “non-stress test fetal heart monitor aka NST”
7:30 am: I begin to shake uncontrollably with chills. Nurse checks vitals. Temp is normal, blood pressure and fetal heart tones are accelerated. IV is inserted to be ready if meds are needed.
9:00 am: Temperature is now 103. All signs point to infection. Infection is the number one reason to immediately deliver in light of pprom (preterm premature rupture of membranes, aka water breaking prior to 37 weeks). She must be born today. I look at my husband knowing we hadn’t decided on her first name and had narrowed it down to 3 options. He says to me, looks like her name will be Kyleigh (which was my favorite of the 3 anyway). I look around A703, my room/apartment/office for the last 53 days. I’m not ready. She was supposed to wait til 34 weeks, 16 more days. I wanted to pack my room myself. I wanted to be a 10 weeker “someone who is admitted to hospital bedrest at 24 weeks (viability) and makes it to 34 weeks (dr recommended delivery for pprom). I wanted her to turn so I could have a vaginal birth. What I wanted didn’t matter, she had to be delivered as soon as possible to minimize the infection effects. I glanced at my “power wall” (the wall in my room that featured cards I received, my daughter’s drawings, 3×5 cards of affirmations and scriptures) and was drawn to John 14:27. Jesus said “Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” I decided this would carry me through the day and began repeating it in my mind to memorize it.
10:30 am: Getting prepped in a new room in Labor & Delivery. My “antepartum” (A7 floor) nurses were gracious enough to watch our 3 year old so my husband could be with me. About 30 mins later, he brought her into my room for a few minutes and then took her back.
11:00 am: C-section prep time. Not having a c-section before I had no idea what to expect and I was still cramping badly. First step was receiving the epidural, which I’d never had before either as I delivered my daughter naturally. Let’s just say it was not as seamless as described by the dr. I kept repeating John 14:27 in my mind. Finally, the epidural was finished and they laid me down to start the process. Then they brought my husband into the room. Delivery was not painful and apparently some of the “cramping” had been contractions.
12:04 pm: One lady said “she definitely wanted to keep her bottom down” and then the famous words “here she is”. There was a tiny cry-out lasting only a second. My husband stood up to see her and then she was whisked away. The team put me back together and my husband left to go see our Kyleigh.
1:00 pm: I’m in the recovery room receiving antibiotics and pain meds. My husband returns and tells me that Kyleigh is receiving oxygen and looks bigger than he would’ve imagined being she weighed 3 lbs 14 oz and was 15 1/2 in long. He leaves to get our 3 yr old.
1:30 pm: The neonatologist and a crew of nurses arrive in the recovery area with my Kyleigh in the isolette. Finally, I can see her and hear first-hand how she’s doing. The dr tells me she’s very sick and needs a lot of help to breathe. He allows me to reach in the cover and touch her tiny foot. Then they whisk her away to the NICU. Less than 4 mins, that’s all I had to see her and snap a quick pic with my phone.
2:30 pm: I’m moved to my post-partum room on the “mother/baby floor”. Vitals checked and my fever is gone. Delivery is believed to cure/remove infection and so far it has. My husband, daughter, dad and sister arrive. A few minutes later, my mom and step-dad arrive. We are all hopeful and anxious.
4:30 pm: My family minus my step-dad, who stayed back with me, left to see Kyleigh in the NICU. They see her briefly and my 3 yr old was allowed to reach in the isolette and touch her sister’s hand. My husband told me later Kyleigh squeezed her sister’s hand. They then have to leave as a PICC line needs to be inserted to administer meds.
5:30 pm: Friends (who are like family) arrive. My husband takes them to see Kyleigh.
6:00-6:30 pm: Everyone leaves the hospital to get something to eat. Last report was Kyleigh was improving and I could see her around 11 pm to give me more time to recover.
6:30 pm: Neo and two other dr’s arrive in my room. She has regressed and they are highly concerned. I call my husband so the Neo can relay everything he’s just told me to him and because I can not talk I’m so upset. Fortunately, my husband and sister got back to the hospital quickly. My hubs went to the NICU and my sister stayed with me. He wasn’t able to see her because the PICC line was being inserted (wasn’t able to be done earlier).
7:00 pm – 10:00 pm: Everyone is eventually allowed to be in Kyleigh’s NICU room.
10:00 pm: The Neo says he doesn’t want me to wait any longer to see her. Obviously, things are not good.
10:30 pm: I arrive in Kyleigh’s room and am wheeled up to her isolette. There are so many tubes, machines, monitors. The Neo begins to explain what’s been done and what is left to do. The biggest concern is her pulse ox/oxygen level and blood pressure. The blood pressure indicates if her vessels are opening enough to allow for flow to the lungs. If these two levels don’t improve, then her lungs will fail her.
12:00 am Mon May 4th: All attempts to improve lung functionality have not been successful. Other levels are now being affected that could lead to brain trauma. I’m literally in shock. Even though I know babies’ lung’s need their amniotic fluid to develop, and her’s had been low for 11 weeks now, I also knew through my closed facebook groups many babies had gone longer than 11 weeks with absolutely no fluid and their lungs were weak and yet they eventually improved. That was the outcome I believed for Kyleigh too. And now, even though her weight was good for her age and she was 31 weeks old (and many other preemies don’t have either of those factors in their favor and make it), we were being told this was the end of the road, that everything had been done. In my heart, I knew it had. Her Neo had stayed by her side since delivery, now hitting the 12 hour mark. He was the best in the hospital, and his knowledge, persistence, and compassion were evident. She also had a 20 yr veteran NICU nurse who was highly intelligent and engaged. My husband and I looked at each other and knew this was it, we had to let her go.
12:30 – 2:00 am: She was moved from the warming bed to my bare chest and arms. I sang to her, talked to her, kissed her, touched every inch of skin I could, rubbed my fingers on her curly strawberry blonde hair. My family/friends talked to her and kissed her. My friends had been taking turns all night staying with my 3 yr old in a NICU sleeping room and coming to the NICU. Around 2 my husband decided he needed to be with our 3 yr old and said his final goodbyes.
2:45 – 5:00 am: I continue to hold her as her heartbeat stops. My sis, dad, and friend are still in the room with me. I decide to let the nurse take her to clean her up and place her in a pink smock dress so we can take pictures of her. We then add a beautiful handmade (by a friend’s mom) set of booties, shawl, and bonnet and take more pics. The nurse then places my Kyleigh Faith back in my arms. Even though I know she’s passed (or taken “flight” as I’m choosing to say now), I have to hold her longer. I’m just not ready to let her go. I’m still not. As I type this, it’s exactly a week since I experienced all of this. As I took a shower today, I cried “I want her back”. I still can’t believe the baby I fought so hard to develop was taken from me so quickly. With the clock reminding me I had been awake for 24 hours, I knew I needed to let go. I allowed the nurse to take her and she continued to talk to her like she was still with us, just as I had done.
5:00 – 6:00 am – One of the postpartum floor nurses had found another room for us where we would be in the corner of the floor, away from babies crying. My friends moved all my stuff from the old room to the new. My husband and daughter were in one of the NICU sleeping rooms. My friends leave and I drift off to sleep.
7:00 am – Nutrition (breakfast arrives) and then the day begins. (Separate post on Day One later)
I want to remember everything about the time Kyleigh was here on Earth. I want to remember how I felt, who was there, and most importantly how the Holy Spirit filled that NICU room. The more I remember, the more she still lives. I don’t expect every post to be this lengthy and I already have a list of topics to share. Thank you for reading and giving meaning to Kyleigh’s journey and the “Unstoppable Blessing” she is.