For a slight moment my heart stopped when we received the call from my OB doctor's office telling us that my bloodwork came back positive for an increased risk for down syndrome. I was breathless as I ran out to call Michael and then to my friend Mel's office because she seem to have such a gift of quiet comfort through listening ears. I cried my heart out that day. Dr. J's office scheduled a special ultrasound for me at the UAMS genetics clinic. For three long weeks I tossed and turned at night and balled my eyes out, wondering how could this pregnancy be different from my first two and why me at such a time in my life. I began to pray like I'd never prayed before for a healthy child.
Hurdle #1
On March 21st, one day after our seven year anniversary, we arrived at the genetics clinic and I remember walking up the incline to the building's front doors and my legs feeling like jelly. I wondered at that point what thoughts would be going through my head when I walked back out of this building and down the incline. We checked in with LaKiesha, who was a gorgeous looking diva with an afro and huge earrings. We waited for over an hour to be seen. Our first visit was with a genetics counselor named Kate. The first question she asked is "what have you been told about this visit?" At that point I balled my eyes out again. I couldn't even talk above a whisper. Kate assured me that it's not a confirmation of downs but just an increased risk and with my genetics and background there was only a 1% chance that my baby had downs. I felt a slight relief. She told me of a number of things that this "special" ultrasound would check for and smiled and shook her head saying "how do you feel now??" "Are you ok?? huh are you ok??" Clearly you could tell that chipper Kate didn't have kids. She explained that once the US was done the tech would leave and the doctor would come in with the results. We waited for another half hour for the US. The tech was very cold, and barely spoke two words to us. I had told myself I wasn't going to look because I didn't want to see any of the "number of things" that Kate had previously mentioned, but I found that I couldn't take my eyes off of the screen that sat so perfectly in front of our faces. I couldn't help but pray for I could feel the weakness of my flesh taking over. After about half hour of staring at this screen, the tech excused herself and said the doctor would be in shortly with the results. After waiting for another half hour, in walks Dr. Maghann along with Kate as well as another counselor, Lori. Once again my heart stopped. Kate didn't tell me that she or anyone else besides the doctor would be seeing me again during this visit. Quietly the doctor sat down and did his own US. And then he spoke. He said "I know you want me to tell you that everything is all honky dory with your baby, but it isn't. We didn't find any signs of down syndrome which is good, but we do see that on her right side she has cleft lip and palate forming." The tears began to roll. How could my baby be forming less than perfect?? He also said, "it's nothing to be worried about. Arkansas Children's does amazing things with cleft lip and palate and it's something that can be easily fixed. However I do want to see you back because we can't see the heart good. I'm sure it's okay and it's probably how she's positioned, but I want to see you back in a three weeks." Chipper Kate did her famous head bobbing, asking me "how do you feel??" "Are you ok, huh, are you ok??" Lori was an RN that was there to shed some light on what to expect once I delivered Jaylan at UAMS. This was the first of me hearing that I would deliver at UAMS. After delivery Jaylan would be transported to ACH to make sure she could feed properly. In the meantime, a meeting would be set up for us and the surgeon that would operate on Jaylan's cleft lip and palate just months after birth.
We checked out of the clinic that day with LaKiesha again. I remember tears were still making their way down my face. Lakiesha began to whisper, "just believe, believe, believe. That's all He wants you to do is believe". I have replayed this moment over and over in my head. It's amazing how God can place the right people in your path as you need them. As I walked out that day, back down the incline, my legs felt worse. This was my first "OVERWHELMING" moment of this journey. My mind wasn't stable enough to handle such news. Even with Michael by my side I felt alone although I knew this happened to thousands of people. That night I journaled and prayed to God that my hope was slowly fading away and I needed His strength to be made perfect in my weakness. I didn't have a shadow of a doubt that He couldn't heal baby Jaylan and make her whole. I prayed that He would lay His hands on her in my womb in JESUS name. I thanked God for His grace and mercy throughout all of my own imperfections in life and I trusted and depended upon His power. I began to vision walking out of the hospital with beautiful Jaylan in my arms made whole. I believed because my soul knew that God would never put more on me than I could bear.
I met with Dr. J that Friday after my visit at UAMS. I love Dr. J. She bounced in the room as if everything was okay never looking up from my chart. She said "How are we doing??" and when I could respond no more than a whisper once again because of the huge lump in my throat and the tears running down my face she jerked her head up and said "what's wrong??" I explained and she apologized because she hadn't had a chance to read the report. She reassured me that cleft lip and palate was more common than I thought and that it was normal for UAMS to want me back for a second and maybe even a third US to look at Jaylan's heart. She was so sweet to me that day. She told me she would call Dr. Maghann herself to find out more details on what was going on and I could call her at anytime if I needed to talk or ask questions.
Hurdle #2
On April 13th, we met with the surgeon and nurse from ACH that would be doing Jaylan's surgery only 2 1/2 months after birth. From the moment we entered the small clinic room, the tears came. Once again I couldn't speak above a whisper. The surgeon and nurse were awesome! I felt comforted by the words they spoke and their presence. They told me what to look forward to for her first year of life and they gave me a couple of specialty bottles that I would use to feed Jaylan with. They explained that Jaylan would have a team of specialists follow her for several years in her life because babies born with cleft lip and palate can have speech problems, hearing issues, and dental issues but would otherwise lead a normal life. They gave me a huge manual to go home with. I've yet to open it. I felt pretty good once we left ACH. We headed over to UAMS for the follow up appointment on Jaylan's heart. Once again I was in prayer mode. How quickly I've learned to be prayed up or your mind can take you places that you've never imagined. This time we saw a different tech at UAMS. She was a doll. She spoke kind words to Jaylan during the couse of the US and explained to us everything that she was looking at. I was thankful to have her and it put me at ease. Once she excused herself a half hour later, Dr. Dajani introduced herself to me. After doing her own US, she explained that Jaylan had a small amount of fluid around her heart and one side looked slightly larger than the other side. I began to panic but no tears came. She felt that there was nothing for me to be worried about and if anything was wrong it was correctable. However she also said, "looks like she has some urine backed up in one of her kidneys" but as she went to show me, the urine was gone so she said "oh looks like she just emptied, I don't think that's anything to be worried about. I'm going to have you see a cardiologist at ACH just to be on the safe side that I'm not missing anything with the heart. I think she's going to be fine but I want to be sure."
I left this appointment feeling a little better than the first UAMS appointment. My legs didn't feel quite as bad walking down the incline, but I was beginning to feel more and more emotionally and physically drained. There is nothing like hearing that a number of things could be wrong with your unborn child that is still forming, but I still believed in the Almighty's power no matter what I was being told. I was definitely overwhelmed but my faith was not going to be broken. I began praying even harder and quoting God's word back to Him. A sense of peace began to come over me like I've never EVER felt in my life before. I began to open up more about Jaylan and what the doctors were saying about her. The tears stopped and the smiling began again. The Word is so right. Philippians 4:7 tells us that God can give you peace that surpasseth all understanding. It's so amazing!! I've never experienced such peace before. I began praising God in spite of.
Hurdle #3
On May 2nd, I drove to ACH alone to see the cardiologist. Michael had a final that he couldn't get out of. My appt was scheduled for 1:00 pm. I never imagined how my life would change on this day. This was the biggest hurdle so far. I waited in the waiting room for an hour before they called me back. Once they did there were two techs. I laid on a table for an hour and a half as they looked at Jaylan's heart. I remember as if it was yesterday. One of the techs began gasping as if surprised at what she was seeing. If I remember correctly, I counted about five gasps during the course of the US. At one point I remember the tears came back and began rolling down the sides of my face. I already felt that something was terribly wrong so I began to pray. God is good. He placed a song in my heart. "Like a shipped that's tossed and driven, battered by an angry sea. When the storms of life are raging, and the fury falls on me. I wonder what I have done, to make this race so hard to run. Then I say to my soul don't worry, Oh, the Lord will make a way some how." I sang that song over and over for about 45 minutes in my head. He then changed it to "Calvary, Calvary, Calvary, Calvary, Calvary, Calvary, surely He died on Calvary." I knew in my heart that Jesus' blood was covering me from so long ago on Calvary. I knew that on this day of May 2, 2011, His blood was reaching me. And that comforting peace that surpasseth all understanding covered me from head to toe.
Once the techs were done, they excused themselves and returned about 10 minutes later with Dr. Buss. He was tall, thin with glasses and had quite a disturbed look on his face. I remember there being lots of awkward silence. He began by saying "Hi, I'm Dr. Buss, and the heart isn't normal." Wow, there the breath was again, knocked out of me. He then said "All four chambers are there, but the areas of the heart that should be crisp and tight, are loosey goosey" all his words. He said "I think she'll be fine for the rest of the pregnancy and through birth." I smiled at him and he didn't flinch. He said "what exactly did they tell you at UAMS?" I told him. He said "Did they tell you about a kidney malfunction?" I told him what they said about her kidney but that it was ok. He said "did you actually talk to Dr. Dajani? They put her kidney malfunction in the report they sent over." I told him that I did indeed talk to Dr. Dajani. And there that awkward silence was again. And then the biggest question of all came. He said, "Do you have other kids??" I told him, yes I had two. He said "Are they normal??" I said yes they are. He said "hmmm". He proceeded to tell me that he thought Jaylan had a chromosome syndrome called Trisomy 13 or 18 and that's were the cleft lip and palate came from. The cleft lip and palate, heart defect and kidney defect were all three related to Trisomy. I didn't ask any questions. I just said "hmmm". He said, "Did you come alone today?" I said yes I did. He said "so you're driving back to Conway alone today?" I said yes I am. And there that darn awkward silence was again. I smiled. He said, "Do you have any questions for me?" I said, "Can she still have a normal life with her heart defect?" Thinking worse case scenario he would say she might need heart surgery or worse worse case a heart transplant. SILENCE. And then he repeated himself, "I think she'll be ok for the rest of the pregnancy and at birth." One of the techs asked if there was someone that I could call. I told her that I thought my mom or my husband had been blowing my phone up. The tech walked across the room, dug through my purse for my phone and gave it to me. She said "Why don't you take a moment and call someone." I said ok and thank you and smiled. I couldn't realize why they were staring at me with concerned looks. I just didn't understand in that moment but I could tell that Dr. Buss was choosing his words wisely. Dr. Buss asked me a couple more questions as to what brought me to the genetics clinic in the first place and then advised me to speak to Dr. J about an amnio. He said at this point we were looking at a black box and that he could be wrong, maybe it was three separate issues but I would have to get an amnio to know anything more. I thanked him and smiled again and he excused himself. One of the techs sat down on the bed and asked me to take some time before I left. They paused and stared at me. I said "I believe and I'm faithful" she said "God bless you" and gave me a hug. They excused themselves as I gathered my things and walked through a dark, closed down department and left. It was 4:30 pm. I had been there for 3 and a half hours. As I got on the elevator my heart became flooded with "Calvary" again, except this time I sang aloud.
I called Michael on my way home and explained everything to him. He called me back at least 4 times to make sure I was ok. I told him I was fine. Still no tears. When I got home we didn't speak much. It wasn't until I took some brochures out that I had received about a month before from UAMS that I found out what Trisomy 13/18 really was. It's a chromosone syndrome far worse than downs in which there's an extra number 13 chromosone at conception. Science has never been able to explain it. With Trisomy 13/18 comes no quality of life and most likely severe mental retardation. There are several abnormalties and as the brochure said "sadly most newborns don't survive". And there it was. My precious Jaylan that I had already began visioning whole and complete, running and jumping, smiling and frowning, would have no quality of life and probably wouldn't survive. So that's why Dr. Buss never spoke to me past birth. That's why the three of them kept presenting the awkward silence and the weird stares. They were waiting for me to break down. Well hallelujiah for peace that surpasseth all understanding. What an amazing thing to have during such a time. God is good! During that moment of reading the brochure, the tears didn't come, but my heartbeat did stop once again. It felt like a dream or was it more like a nightmare.
At my next appointment with Dr. J, I explained everything to her and that they didn't think Jaylan was going to survive and the tears finally came. I told her, that I still trusted God no matter what and I only wanted His will for Jaylan's life because He knows what's best and I didn't doubt Him. I told her that I still believed! She smiled and gave me a hug and told me that she was sorry about it all and that she felt I should get the amnio so we could narrow down the unknown and be better prepared. If Jaylan had Trisomy, she would be here to hold my hand during delivery and give me the support and love that I needed. If it was mostly structural for Jaylan, she recommended me delivering at UAMS so a team of interventionalists could be on standby. Have I mentioned yet that I believe I have the best doctor ever?? She gave me her personal number and told me to call her at anytime and that she would be praying for me. It's a wonderful thing to have a doctor that knows the power of prayer.
A SIGN
One night I asked Raghan if she said her prayers. She said yes. I asked her what she prayed about and in her words she said "I asked God to help me in school, and I told Him I love my family and Oh I didn't say this out loud but I thought it, I thought God please don't let the baby die." My heartbeat stopped. I said "Raghan why would you say that? Why would you think the baby was going to die?" At this point Raghan hadn't been told ANYTHING about Jaylan, not even that she had cleft lip and palate. She said, "because don't babies die sometimes? Didn't we see that on Oprah, didn't her baby die?" I said yes her baby did die. Sometimes babies do die because God wants the babies in heaven with Him. Why don't you just make sure you pray each night that Jaylan is a healthy baby." It was in that moment that I realized, God was preparing her for what was to come. In her own little mind and in her own little reality she was being prepared. My heart was broke.
My amnio was scheduled for six weeks later during a prescheduled appointment because UAMS was too booked up to fit me in earlier. This meant that I would be cutting it close and getting my amnio just six weeks before my due date and then waiting two weeks for results. In the meantime, we continued to pray for God's will to happen in our lives and Jaylan's while consistently praying for His strength and preparation for us. God is good.
Hurdle #4
On June 15th we went for our amnio at UAMS. Once again we met with a tech who did the US and than afterwards with Dr. Dajani except this time another doctor came in with her and I didn't catch his name. Lori, the counselor also came in. Dr. Dajani requested the cardiologist's report from ACH. They asked me about my appointment with Dr. Buss and I explained everything to them. They read the report in silence. And then she proceeded with her own US and looked at the cleft in silence and then the heart in silence. She explained to me that Jaylan only weighed 4.2 lbs and was three weeks behind in her weight which wasn't "uncommon" for babies with chromosome syndromes. Just as she was finishing I asked her about getting the amnio. She wasn't going to even mention it. I feel like they did everything in their power to talk me out of it and I couldn't understand why. She even asked me if it really mattered what the results would be and I told her yes it would because we had to prepare. She advised me that they didn't normally do the amnios with patients so far along (I was 34 weeks at the time) and my water could easily break especially since I was in the middle of a contraction, in which she'd have to send me over to the hospital immediately to prepare me for delivery. I have to honestly say it did make me a little nervous. I told her we still wanted to do it and she excused herself to gather the supplies and material. Once she left the male doctor reiterated the risks of the amnio with me being so far along. I told him I still wanted to do it. The amnio was painless and easy. It only took about one minute and it was actually pretty cool to watch it on the US. I opted for the quick results that I would receive after three days. She had Lori schedule me for induction at UAMS on July 11th. That was 3 and a half weeks away. I wasn't prepared for the moments to come to only be 3 and a half weeks away.
Hurdle #5
Once again I prayed and prayed for those next 3 days as we sat and waited. Dr. J told me if I got the results on that following Monday, to call her at home because she would be off. That Monday came and I hadn't heard anything so I emailed Lori. She emailed me back and told me that Kate, the other counselor would be calling me shortly with the results. And she did. About 45 minutes later chipper Kate was on the other end of my phone telling me that my results did come back showing that Jaylan had Trisomy 13. I calmly explained to her that I was no longer planning to deliver at UAMS and I knew that with Trisomy 13 she wouldn't have a quality of life so we didn't want any interventions performed on her. She said that was fine and that she would let Dr. Dajani know.
CURRENTLY...As our journey continues
There was that moment again in which my heartbeat stopped. I found myself froze in midair as I tried to jump this hurdle #5. The floodgates opened. How could this sweet sweet baby have Trisomy 13. She feels so normal inside of me, so strong and we already love her so much. How could doctors tell me what her fate was going to be. They couldn't. I still believed that God had the final say so. I prayed again that His will be done. If it was His will to bring her back home to Him than we release her. She was His to begin with, not ours, but oh how thankful I've been to carry her for these short weeks. Oh how thankful I am to have the priviledge to feel her movements, to be able to talk to her and tell her how much I love her although she'll never tell me I love you back. How thankful I am to have had the moments I've had with her.
Hurdle #6 - The hurdle I've truly been dreading...
On June 21st, we finally decided to sit down and break the news to Raghan. It's so hard to give your child a sense of joy only to turn around and take that joy back. I started off telling her that Jaylan was very sick and she may die. The first thing she said was "Is that true??" and oh how I wish it wasn't. I said "yes it is. God can still heal her but we want you to be prepared that she may not be coming home." She told me she was sad because she really wanted a baby sister. She asked if she was going to be able to see her and I told her that daddy didn't want her too because she would have some things wrong with her face. I asked her if she remember when we talked about how sometimes babies die and go to heaven to live with God. She asked if Jaylan would be an angel and have wings, I told her yes. She asked if they would be white, I told her yes and that she would probably watch over her. She asked if she could dream about her, I said sure she probably would. She asked how would she look and I told her she would be beautiful just like her except she would have wings. She asked how did heaven look and if it was big white and fluffy, I told her probably and that it's gorgeous and I'm sure there'd be some gold up there. She asked me how did I know and I told her because the bible says so. I also told her that we would have to bury her and I think it would be a great idea if she wrote a letter to bury with her. She said she didn't know what to write and I told her she could tell Jaylan that she missed her and loved her and to tell Jesus hi for her. I also told her that she could release some balloons for Jaylan. She said ok but that she was sad because she really wanted to be her big sister. I told her she would still be her big sister, Jaylan would just be in heaven and one day when we went to heaven we would see her.
This was hard but I praise God that Raghan took it so well. Sometimes when I glance at her in the back seat and she's staring off somewhere deep in thought, I think about taking that joy away from her. I wonder if she's thinking about Jaylan and I wonder how the burial will affect her. I've definitely been praying that God comforts her as well and make His strength perfect for her weakness as well. I don't want her to be as sad but more celebratory that God allowed her baby sister to be born. God is good.
Since then, Raghan and I can talk about Jaylan and how she'll be well when she get to heaven. She won't be sick and she'll have a great life up there with God. She'll be happy and will be able to play and God will rock her. It's a great thing to see Raghan smile about that.
Two and a half weeks until induction:
Time is flying and I'm still not ready. I just want to keep Jaylan in my belly forever. I'm going to miss her presence in my life, her movements, her jerks. Oh how I love her. Still praying for strength and peace. You always know that burying a child is a possibility in life but it's not something that you can ever be ready for. How will I walk away from her grave? Will my legs move? Will I be stuck? How can I just leave her little precious body there? There's so much to do with so little time. She had a seizure a couple of weeks ago and it scared me crazy. I'm 100% sure it was a seizure and then she got real still and I couldn't make her move. It is common for Trisomy babies to have seizures due to their brain activity. I realized then that I wasn't even close to being ready for this process, for THE moment. She did start moving thankfully. I know it's a possiblity that Jaylan can pass before she's born and there's an even bigger possibility that she will pass during the delivery because of the stress on her little body and heart. My baby... However, at this point no one knows how long she'll live if she makes it through delivery. Will she be able to take her first breath, will I hear her first cry, how will I react when I see her? I'm beginning to have anxiety about the DAY. I'm not ready now but I'm asking God to prepare me for the moment.
I am definitely thankful now for that OVERWHELMING moment because what I have learned is that that OVERWHELMING moment was preparing me for a different moment in my life. Thankful. God is good.
