So, I guess I will start at the beginning. From the very beginning of my pregnancy I had a feeling something wasn't quite right. We waited to tell even family about our pregnancy until around 10 weeks because I was fearing a miscarriage. At around 12-15 weeks I started to feel more secure that nothing bad was happening. We had our anatomy scan at 20 weeks and were told baby looked healthy. The little stinker wouldn't show us if it was a boy or girl. So, with news that baby was healthy we focused on finding out the gender. We opted to pay for a 3D ultrasound so we wouldn't have to wait until 30 weeks to find out
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| It's a girl! |
At my 24 week prenatal checkup we were told that they saw on my ultrasound that my umbilical cord had a single umbilical artery. Most cords have one vein and two arteries, mine just had one of each. I was told that I would have to have a level 2 ultrasound at my next appointment just as a precaution because sometimes a SUA can be linked to birth defects, but that in the majority of cases the child was completely healthy.
At 28 weeks we had the level 2 u/s and were so relieved to hear that they didn't find any other reasons to suspect that we had anything but a completely healthy little girl. We couldn't have been happier with the news and I felt like I could begin to relax a little bit again.
By my 30 week appointment I really felt that something was off. My stomach was as big as it was when I delivered Tesley. I knew that it was common to be bigger the second time around but this seemed excessive. I brought it up to my doctor who confirmed that I was measuring as if I were full term. He sent me for another ultrasound that day to make sure baby wasn't measuring too big. During my ultrasound the technician was very quiet. Nick and I were beginning to worry. After about an hour of getting scanned the tech told us that our girl was measuring right on size and then let us go. We thought at the time "wow, that is great news!" and left without anymore worries.
Below is a comparison of my bellies during both pregnancies:
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| 40 weeks pregnant with Tesley |
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| 27 weeks with Kenley |
About 30 minutes after we left the ultrasound appointment I got a call from my doctor telling me that he was referring me to a perinatologist which, is an ob/gyn that specializes in high risk pregnancies. He told me that they would be calling me soon to set an appointment. Cue panic. Nick and I just parked the car and
We made it to our next appointment as fast as we could drive. Our ultrasound was about 1.5 hours long and at the end they couldn't tell what was wrong, besides that I had polyhydramnios, or excess amniotic fluid. We knew that there was a reason for so much fluid, and our baby wasn't perfectly healthy. But that was all we knew. I'll be honest, from here things kind of get blurry. From this day on was a flurry of appointments (3+ a week), trying to keep some semblance of a normal life for Tesley and trying to hold ourselves together during this time of unknown.
Finally, a few weeks before Kenley was born we were given our first solid answer. She had duodenal atresia which is basically where the first part of the small intestine hasn't formed completely and surgery is needed for repair. This condition causes polyhydramnios. We were told that after Kenley's repair surgery she wouldn't have any problems living a completely normal life. She would have to stay in the NICU for a while to recover but then we could go on with our lives. We were scared, no one wants to put their newborn through surgery, but we knew that it could be a lot worse.
We were then sent down to Arkansas Children's Hospital to meet with the surgeon who was doing her repair, tour the NICU and meet with the Doctor who would be delivering Kenley. Everything went great until we met with the doctor that was to do the delivery. They gave me an ultrasound so they could have a look for themselves. That was when my new doctor told me matter-of-factly that our baby had down syndrome as well as two clubbed feet. They told us that they wanted us to come back the next Wednesday when I was 37 weeks and then we would wait in a hotel until I went into labor. The ride home that night was rough. We cried, a lot. What should have been a four hour drive home came in at about 7 hours. We stopped multiple times just to talk, cry and snuggle with Tesley.
The next morning we had an appointment with our local perinatologist to discuss what we had learned in Little Rock. The team there told us that in the many hours of ultrasounds that they had performed on me that they never saw any clubbed feet and that while there was a chance that our baby had down syndrome, they had never saw any reason to believe that. They recommended at that time that I have an amniocentesis which could rule out down syndrome and a number of other chromosomal disorders. Another positive was that he could drain much of the excess amniotic fluid out of my rapidly growing tummy. I agreed and I had the amnio that afternoon. They told me to expect preliminary results the next Monday July 30th.
Monday comes, by this point Nick and I had come to terms with the fact that we may have a child with down syndrome. We knew that she would still be our little girl and that we would love her more than anything. We felt at peace and were prepared to get a confirmation that she was. Finally, that afternoon the nurse calls me to tell me that Kenley was negative for down syndrome and all the other abnormalities that they tested for. We were so relieved. Now we could go back to thinking that the duodenal atresia was the extent of her birth defects. Well, with a possible side of clubbed feet.
The next day, Tuesday July 31st, we were feeling good about things. Everything was going to be alright. We could do this! We went for one of my twice weekly non stress tests at my ob/gyn. These were, we thought, just an annoying technicality to make the doctors feel better. During these tests I was supposed to record every time baby kicked in a 30 minute time period while they put on monitors to record her heart beat. This was going to be the last NST before we left the next day to go to Little Rock to wait on labor. On this particular day, though, I was having a hard time feeling Kenley kick, and the monitors were having a hard time picking up her heartbeat. This didn't alarm me because it was a normal occurrence. You see, since I had so much excess fluid, I very rarely felt her kicking because she wasn't cramped in there like most babies, she was relaxing in a nice big pool and able to stretch out more freely. Same with the heartbeat, they often had problems finding her heartbeat because she was just floating around in there and as soon as they would find it she would float away. So, when my doctor told me that he was sending me straight to the perinatologist as a precaution we weren't too concerned. Thank goodness one of my dear friends, Angie wasn't so confident and urged me to take one last pregnancy picture before we walked into the office.
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| My last pregnancy photo, just hours before I delivered. Look at that huge belly! |
We got to the perinatologist and we had a quick ultrasound and then he sent me across the street to Willow Creek Hospital so I could have another non stress test. At this point I was still thinking that this was no big deal and that we would be going home soon. They put me on the monitors for about an hour, in which time the results were much of the same from the test earlier in the day. My doctor decided to give me another ultrasound to get a better look at what was going on. About 5 minutes into my ultrasound my doctor starts talking about calling for a helicopter to come pick me up and take me to Little Rock where I would be delivering that day. This is when I start to panic. "A helicopter ride?!", "I am going to have a baby today?!" "Nick can't come with me??", "Oh no, oh no, oh no!!".
About 5 minutes later, I am still panicking when I hear my doctor say to his nurse, very calmly, "cancel the helicopter and call Angel One (the helicopter for transporting babies to ACH) we are having this baby right now. Then he walks out the room and the nurse calls out to him, "You mean STAT?" and I didn't hear his reply. (Nick later told me that he yelled "I MEAN RIGHT NOW!")
Then, it was utter chaos. A flood of doctors and nurses huddle around me and start wheeling me to the OR and ripping off my clothes along the way. I am hysterical at this point. Nick is running to try to keep up. There is a nurse right by my head who's main job seems to be to keep me calm. "Stay calm, look me in the eyes, don't listen to anything anyone else is saying.", "Everything is going to be ok, just keep looking at me." This is when I see Nick stop following us. I scream to the nurse "Can my husband come? PLEASE! I NEED HIM!" and she tells me "no, honey, I am sorry." I felt like my heart was ripped out of my chest. I couldn't do this without my best friend. I needed him. Just thinking back still brings tears to my eyes.
I was wheeled in the operating room. There were at least a dozen doctors and nurses around. Everybody was screaming, which terrified me even more. I knew this wasn't good. The nurse told me that I would start to feel the drugs kicking in any second. And then there was nothing. See, I thought I was going to be awake for the c-section, nobody told me that they were going to put me out. The next thing I know, I am waking up in another room, completely alone and not knowing what happened to my baby. I frantically called for a nurse and she told me that my baby was alive but that was all she knew.
This next part will be from Nick's point of view: Let's go back for a second to when the doctor first said that he wanted to call off the helicopter and that we would be having the baby right now. I was standing right outside the room waiting for my mom, my step dad Bobby and Tesley. They were coming to bring Tesley to say goodbye to Ashley before she left on the helicopter (or so we thought). As soon as mom, Bobby and Tesley walked through the door I overheard the doctor inside the room say that this was happening now. Mom and Bobby heard the exchange between the doctor and the nurse and were wondering if they had heard that right. I was trying to tell them the new plan when a flood of nurses come running to Ashley's bedside and start frantically wheeling her away. At that point I leave my parents and Tesley behind and start chasing after Ashley and the nurses. They wheeled her into a set of double doors, I was about to follow them when a nurse stopped me and said I wasn't allowed any further. She had me sign a few papers and had another nurse escort myself, mom, Bobby and Tesley into a private consultation room so we could compose ourselves. In that room, my mom and I were hysterical with fear of the unknown, but trying to keep ourselves as calm as possible so we wouldn't scare Tesley.
The nurses let us stay in the private room for just a few minutes and then they had me come stand by the nurses station so I could wait for news. A total of 7 minutes after I watched Ashley be wheeled into those double doors a nurse came out to tell me that Kenley was born but that was all that she could she could say. 6 minutes after that a doctor and a couple of nurses come out the doors wheeling a tiny baby in a bassinet. They asked if I was dad and then the let me and Tesley come take a look at little Kenley. When we saw her, the sight was heartbreaking. They had my baby and had a bag that they were using to manually pump air into her lungs. The doctor asked if I wanted to come with them up to the NICU and of course I said yes and passed Tesley off to my mom.
Riding up to the NICU the nurses and doctor were throwing around all kinds of medical jargon that I of course couldn't understand. I was just standing there in awe of my baby trying to process all of what was happening. That was when I noticed that every time the doctor would pump the bag, Kenley's stomach would rise and fall instead of her chest, like it should.
We got into the NICU and the nurses were doing all of their checks when the doctor pulled me aside to tell me what he knew so far. As he was talking to me, the nurse noticed that when she put Kenley on her stomach that she was able to breathe without the assistance of the bag. That was when they knew that there was something wrong, internally. They sent me out to the waiting room while they took her to go get x-rays done.
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| Our baby girl, they took off the bag so I could get a picture of her face. |
At that point, I was able to go see Ashley who was now in a recovery room. She was still waking up from the anesthesia and had tons of pain meds so she wasn't very alert yet. I sat with her for a few minutes and then decided that it was time to go back to the NICU waiting room to see if they had any news.
When they finally brought Kenley back and let me back into the NICU, the doctor pulled me aside to tell me that Kenley had multiple birth defects. Her esophagus wasn't connected to her stomach, but her trachea was, which explained why the air was puffing up her stomach. She also had the duodenal atresia that they had expected and many other birth defects to her intestines. He told me that the Angel One helicopter was on it's way but to prepare myself because in his opinion she had little chance of surviving the flight. And that if she did, she would have a very low quality of life.
Not long after that, the Angel One helicopter nurse arrived. The doctor explained to her everything that he knew so far. I was a complete mess from the news I had just received and also the fact that during all this there were nurses crowded all around me to have me sign a bunch of paperwork. To my rescue, the helicopter nurse cut in and grabbed me by the elbow and led me into the nearest empty room. She explained to me that my baby wasn't going to die and that everything would be okay. She had dealt with this before and Kenley was going to be in good hands with her and again when she arrived at Arkansas Children's Hospital.
They started to get Kenley ready to leave when I was told that we were able to stop by Ashley's room to let her see Kenley, first. They wheeled her into Ashley's room briefly, unfortunately the bassinet that Kenley was in was too tall, and Kenley was laying on her stomach so Ashley wasn't able to really get a good look at her and there wasn't any time to remedy the situation.
Then Kenley was wheeled outside, at that point all of our family was already there, and we all stood helplessly in the parking lot as my baby got flown away. It was one of the hardest moments of my life, and emotions were high among everyone who was watching.
After Kenley left, time was of the essence. I went in to see Ashley for a few minutes and then I had to go home and get ready to move my life to Little Rock. Tesley went home with my mom, my wife was stuck in the hospital, my newborn baby was hours away and I was a mess. Luckily, my brother Tony offered to drive me down to Little Rock and be my support while everyone else had to stay behind to get ready.
We arrived at ACH at 3 am. When we were finally admitted into the NICU we were so relieved to see a beautiful, calm, sleeping baby Kenley. She was laying on her stomach and she was breathing on her own.
Tony and I spent some time admiring her and the nurses told us that she was first on the schedule for her surgeries the next morning. After we realized that she was doing okay for now and being well taken care of by the nurses we went to go get something to eat and wait for morning.
Morning came too soon. After the surgeon, Dr. Dassinger, came in to introduce himself to us and inform us that Kenley had VACTERL Association which is a grouping of birth defects that you can read about here: About VACTERL. He then explained the surgeries Kenley would be having, I was more scared than ever. It wasn't fair that my baby was going through all of this and I couldn't take away her pain or protect her in any way. It is really hard when you feel so helpless to help the one thing you should always protect.
At around 8:30 am we made our way to the holding room where Kenley was prepped for surgery. This was the time that Ashley called, very upset and crying. Apparently the same doctor that told me that Kenley wouldn't survive the flight also had talked to Ashley and had also told her that Kenley was unlikely to make it through. At that point everything hit me all at once. My wife was frantic on the phone and I couldn't do anything to console her because I was barely keeping it together while I was about to watch my baby leave for hopefully life saving surgeries. The sweetest nurse I have ever met, Debbie (who eventually turned out to be one of Kenley's primary nurses in the NICU), took the phone away from me and was able to talk to and reassure Ashley.
Kenley was taken back for 7.5 hours of surgery. That was the longest wait of my life. Thankfully, the rest of my family was beginning to show up and Tesley was there with me which made everything a little bit easier. Ashley had also been released and she was making the drive with her mom down to Little Rock. The doctors came and told me that the surgeries were a success and that she was going to be heading back to the NICU where I could wait on her.
When they finally wheeled her back, the sight was hard to take in. She had fresh scars all over her body and was covered in tubes and what I would later come to find out was a colostomy bag. She was sedated, thankfully so she wasn't feeling any pain.
Not long after, Ashley and her mom arrived and got to meet Kenley for the first time.
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| Kenley swollen after surgery |
Our baby girl had made it through. She was going to be alright. They told us that she would be in the NICU for a couple of months, at the least and that she would likely go home with a feeding tube but Miss Kenley likes to be unexpected. She was out of the NICU in 24 days and feeding perfectly by mouth. Since then, she has continued to exceed the doctors expectations.
It's 1:30 am now and it is officially Kenley's first birthday, she has came so far and it is amazing to think of everything that has happened in this short year. She is stronger than many adults that we know and we are so lucky to have her as apart of our family.
She still has some surgeries and other hurdles in her future, but if you know Kenley then you also know that she will come out stronger than before.
We love you baby girl! Happy 1st Birthday!
