A Mothers New Dreams
By Annie Teeters (2010)
As a child most little girls dream of the perfect wedding, family, job and house. I always dreamt of the perfect fairy tale life, with the perfect husband and family of four as most girls did. Although my life is nothing like the dreams I once had I do have the perfect husband and family of four. My dreams were changed after having my children and it took time to adjust; however, I do have the perfect family for me and my new dreams.
When we finally got pregnant for the first time I was overwhelmed with joy and excitement and then shock. Oh my gosh I am going to be a Mom, did we really make the right decision? Will we be good parents? A few days later, once I finally realized this is what I always wanted, all of that was taken away as we miscarried. A few months later we were grateful to become pregnant again. The joy of such a miracle. This time it “stuck”. Months of planning the right name, the perfect room and the birth plan. How it was all going to happen? Again the perfect “dream”.
My water started to leak 4 weeks before my due date and after getting checked out, sure enough I was right. The doctor mentioned inducing me. I think I went into shock, are you kidding? I am not ready to be a Mom and push this baby out although my body was ready as I was so swollen and uncomfortable. Emotionally I did not feel ready and there was no way I could do this yet. I still have 4 weeks to prepare. They decided to send me home thankfully. A few days later my water broke and sure enough, this baby had to come. I really thought it was going to be quick since my Mom delivered quickly. Twenty-seven hours later, still no baby and still no progress so they mentioned a c-section. No way was I having a c-section! That was not the plan and that was definitely not the dream. I had no choice it was for the safety of the baby and so away we went to have a c-section.
Chris in his scrubs and me in my little hat, we rolled down the hall. I still remember the moment like it was yesterday. The details are so vivid. I remember Chris standing up to see Zak pulled out and the nurse saying “Mom needed to say hi first” and away he went. You would have thought that would have been my first clue that something was not right. It sure was not like the TV shows where baby is pink and they lay them on top of you. I don’t recall it being like that when we talked, but maybe I missed something. I still was clueless and living out the perfect fairy tale life! Chris went to be with baby Zak and they cleaned me up. I remember coming out of the operating room going to recovery thinking I cannot wait to hold my baby close and hear him cry. Life has just begun! When I got to recovery Chris looked like he was in shock, but weren’t we all? We had just experienced the most beautify thing in the world, a baby, we are parents! Let’s celebrate.
The next words out of the nurse’s mouth will stick with me forever. “Should you tell her or should I?” I think every thought went through my head before Chris said you can. I really thought Zak had passed. The worst thing a parent can ever imagine. The nurse told me there were some complications and he was going to Marshfield. I did not even know where Marshfield was, how far is my baby going? Now, Marshfield is a second home to us. That was the first time I realized my birth plan was going all wrong. What happened to those dreams? I got to see my precious little boy before they took him away. It was like he was just ripped away from me. I did not even know what was wrong. I remember thinking if he was going to pass he need to do it before I got to see him again in Marshfield. At this point I was not too attached, I did not even know him. Chris went with and kept me updated with what was going on, assuring me everything was fine.
The next day I checked out of the hospital to be with my new family. 24 hours after a c-section, I cannot even believe it myself, the pain I went through. But we would all do it for our child right? I knew from the moment I held Zak everything was going to be ok. We learned quickly all about the procedures in a NICU, and how to change diapers through two small little holes, tube feedings and how to read monitors. Daily we would look at his chart watching his weight and labs. Soon we found out he would be having surgery on his little nose, our little baby boy, only 5lb 1oz having surgery. I believed this would just be a phase, after surgery we would go home and continue with those dreams I once had. Then it was followed by the fact that he had a genetic disorder. When was the good news coming? What happened to the plan and the dreams? I felt like everything was taken away from me. That moment is when life as I knew it really changed. I did not know how to do all of this, but I was going to learn and quickly. I wanted my baby home. This was not what I wanted, this was not the dream. I would soon come up with a new dream, one for our new family of three.
When Zak was 2 weeks old we brought him home. Life was different than what I thought it would be with a newborn. We had to learn to suction his tiny little nose and watch his oxygen levels, which meant medical equipment in the house. That meant sleeping with one eye open. I remember the first nights home and the first few weeks, that turned into months of running to the clinic and hospital. Something that became very familiar to us. This was all we knew, this was now normal for us, we adapted. We learned to appreciate life so much more. We had a little miracle. We appreciated all the little milestones in life, we celebrated when Zak first opened an eye, grabbed his first toy, when we heard a noise. Everything was a celebration. We had no idea what his developmental milestones would be, so everything was such an accomplishment and such a celebration. We were still in denial and we thought when he got older he would be just like every other child running the halls.
Things were still hard; we had to adjust to our new life as being parents. There was the shock of never sleeping through the night again and always answering to someone else or the beeps of monitors. One of the hardest adjustments was watching other children around us get bigger and stronger and reach the major milestones, while Zak lay still healing from surgeries. It would break our hearts over and over again watching other children progress. We wanted to celebrate other children’s milestones with our friends, but it was hard. When I was weak Chris was strong and would point out all the positive things and what we had to be grateful for. The same was true when he was weak; I had my opportunity to pull him back up. What a great team we are. We were going to get through this.
The first year was tough. There is only one other boy in England that is similar- still not the identical chromosome abnormality. We really did not have anything medically to follow. The two boys were very different. We spent a lot of time just trying to figure out what was going on in his little fragile body. Immediately he could not breathe through his nose, that would be the first operation. He had little stints sticking out of his nose. We called it his little pig nose and thought it was so cute, although most people would be shocked when they look at him. Then it was the question how old is he? We got that everywhere we went. When we would say 3 months and he was only 5 ½ pounds people were speechless. I got sick of people looking at us and asking questions. I did not want anyone to look at my baby. He was perfect, why didn’t they see it? They were not seeing him differently, I was. All they saw was a cute baby and everyone has to look at the baby going by.
At 3 months Zak finally got the stints out of his nose, but his eyes still did not open well and he was always fussy which meant more doctoring. By 6 months he was diagnosed with Acid reflux and we went in every 3 weeks for a medication change. Nothing worked and he was miserable. He did not want to eat and when he did it would all come back out. Zak was tiny and not growing with legs that seemed to be skin and bones. I remember thinking how cute and healthy he looked. He was a little angel. Looking back I get it now. He was skinny and sick, but we did not see it.
At 7 months they finally performed eye surgery. He could now see the world like we did, so we thought. We were so excited that we could see his eyes. That is when we really started to see emotion and smiles and soon the laughs followed which meant celebration. However, he would still just cry in pain and it would just break my heart. Then he started to have episodes where he would turn blue and pass out. We had no idea what was going on so we were running back and forth to the clinic to see more doctors and have more tests. Finally we met one of the best doctors. Dr. Park a Pediatric Gastroenterologist. He was quick to do some tests that showed us how severe Zak’s reflux really was. Another new medication to try and we were sent home. We soon found out he was allergic to the medication and he needed another surgery. This surgery would prevent him from refluxing and it would also give him a feeding tube directly into his stomach. Finally we will see progress. He was happier and started to gain weight but he would still turn blue. We learned that was how he handled pain. He was in so much pain it would take his breath away that he would pass out and finally come to. By the time Zak was one year old we stared to figure things out and he was growing stronger and getting bigger. That was by far the longest year. He continued to get stronger medically and physically as we entered year two. Surgeries and doctor visits slowed down.
When he was just over two years old he was diagnosed with a spinal cord compression, the results ofan accidental finding when pushing for vision tests to be done. We were always asked what Zak sees and no one really knew the answer so we had some vision tests done and he was diagnosed as legally blind. They suggested having an MRI of his eyes to see if it could be determined why. Thankfully the tech went far enough down ihis brain stem and saw that C1 and C2 (the first two vertebras) were fused and growing inward, compressing his spinal cord. After lots of doctoring and finally being told our doctor did not know what to do, we ended up in Iowa with the best pediatric neurosurgeon for cervical spine. A 7 hour surgery soon followed and what was by far Zak’s scariest and most intense 2 weeks in the hospital, but he is a fighter and made it through. It seemed like the longest 6 months of his life, with Zak in a body brace from head to belly button and not much for movement he finally ended up in a smaller neck collar. One year after the surgery he was brace free and moved more than ever. What a miracle! I give so much credit to the doctor in Iowa. I think there are 2 doctors that I can honestly say have saved Zak’s life. Dr. Park-GI as he got involved at the right point for his tummy and acid reflux and Dr. Menezes – Neurosurgeon from Iowa , who also got involved just at the right time. Two life saving events; God does send angels when we need them most.
Zak has had many bumps in the road, but that is all it is. He is a strong boy who grows more each day. I have never lost faith in him. He is strong willed and won’t let anything stop him. He is our blessing and I believe he has taught me more that I could ever teach him. We all have a place and a path. I am not sure where ours leads, I just know he has changed it so much from what I originally thought it would ever be and has made me the person I am today.
Things were so much better with Zak, we finally decided it was time for him to be a big brother. This decision did not come lightly. We had lots of counseling and genetic appointments throughout the four years. We knew I was a carrier and this could happen again. We had other options, genetic testing, adoption, egg donors. The only option we really agreed upon 100% was natural and put it in god’s hands. After all He knew what our path would be. It did not take long and we were pregnant. I was in shock and excited at the same time. Zak was going to be a brother. The first month was hard, wondering if I would miscarry as there was a high percentage that would happen again. This time around I was okay with knowing something could be wrong with the baby and it was for the better. I prayed every day just to have a healthy baby and that everything would be ok, fearful of the words that something would be “wrong”. I just did not believe it could really happen again. After all, everyone in the family that is a carrier and Zak was the only live birth. The rest are “typical” or carriers just like me.
When we were 12 weeks along I had an early ultrasound which brought some concern. The doctors mentioned there was a red flag-- the thickness in the neck was not in the normal range. We knew something was not right when the tech took so long gathering the images and measurements. We were prepared by the genetic doctors for what they were going to look at in the ultrasounds. When the tech left the room I remember crying, telling Chris I could not do this again. I was a wreck while he stayed strong. We had already decided abortion was not an option. This was our baby and this is the decision we had made, after all I cannot image life without Zak. The doctor came in to tell us the findings right away. When she walked in my heart sank as the look on her face said it all. I tried to be strong, but all I could do was cry, we both knew more tests needed to be done. The doctor was so caring and told us this does not mean anything is wrong; we just want to check more options to be certain. We had planned on doing amniocenteses the whole time so we know where to deliver. If they thought at all there would be any medical issues we would go straight to Marshfield. I could not wait 3 more weeks just for a test so we did CVS (chromosome/genetic test) since that could be done now. It was the worst, most painful test I have ever had in my life. It felt like someone was ripping my insides out. The whole time all I could think of was this is the same way they would do a medical abortion and there was no way was I going to go through that. This was our baby and God was in control.
It was a long, two week wait for results. At the two week mark I sat by the phone eager for the news, only to find out the sample was so small it was not ready. During the test the doctor questioned something in the ultrasound that he found and asked if the other doctors mentioned it, which they did not. He said it kind of looked like a vanishing twin. The doctor told us he got a great sample after all the digging and pain he put me through. I could barely stand up, my legs were so weak. I just wanted to cry, but I had to be strong once again. They did tell us they got a small sampling but it was not until they called with the results what they meant by a small sample. They had 2 cells, they would have preferred much more. So were these two cells my live baby or the one that “may have vanished”. I still remember them calling us at home to give us the results. I could not even talk to them so I made Chris call them back. After he hung up the phone and told me the news, all I could ask, was it a Girl or Boy? Seriously, who would think of that at a time like this? So he called back and asked. I still remember the exact place he was sitting and I can play back the moments in my head like it was yesterday. The next day we found out we were having a girl. Everything was going to be okay now. We were going to have a precious little girl, one of each. I did not want to believe she would have any medical issues, after all this was going to be our healthy little girl.
This time we knew what we were up against, I figured it would be so much easier. We changed doctors to high risk in Marshfield, the same one that had to tell us the news at the ultrasound. We would need to deliver there just in case. They were the only ones that could handle the complications and if my baby could not breathe through her nose there was no way she was going to be transferred away from me this time. We had ultrasounds monthly. It was exciting at first to see the baby and always have pictures, then it got annoying. Another 2 hours laying on my back still wondering if they would find anything this time, then waiting for the doctor to break the news to us. We were always asked about Zak and what to look for since it was never the same tech twice, even when we would ask. It just got old quick. With Zak we did not have all the ultrasounds since we did not have any red flags prior. Nothing was found in the womb other than he was small, well so was Callie. They never did find anything significant in womb; they would still do a full check and assessment at birth. I was still convinced she could be perfectly healthy and the tests were wrong, after all it was only 2 cells.
Callie was finally born 3 weeks early. We really wanted to go into labor naturally. There was no way I wanted to pick my child’s birthday. That is God’s job, not ours. The doctors insisted we have a date picked for the c-section since it was easier for planning purposes. We told them to pick the date. Thankfully we did not make it that far since Callie decided to come early. I went into labor in the evening. I was in denial; by 10pm Chris asked if we should go to the hospital. I told him no and went to bed. I was able to sleep through the contractions since I had a migraine and I was just exhausted. I woke at midnight and thought maybe I should call the nurses to see if this was labor or Braxton hicks. They told me it was my choice if I wanted to come in and get checked out. I really did not want to drive an hour at midnight to find out this was false labor. I was still convinced it was false labor and she was not coming early, although throughout the whole pregnancy I told everyone she would come early so I went back to sleep. Finally at 4:30am Chris could not sleep anymore, I think I was stirring too much keeping him awake. I remember him asking me if I could go to work. Seriously are you crazy? Then he asked how far apart they were but I had no idea. I had lost track of time in-between each one as I would fall asleep I was so tired. Then he said we were going to go to the hospital. Chris went to work to finish up some paperwork and I got in the shower. By 6am we were on our way to Marshfield. I was still in denial; they would have to stop labor right?
When we got there the doctors were in meetings. Finally at 8:30am my doctor came in and told me I was dilated to a 4. Holy cow! She said I was going to have this baby today and told the nurses get me ready for a c-section now. When Callie was born at 11:11 she was crying, but could not breathe through her nose. It was confirmed; she too had the same genetic disorder. It was hard to accept. I still had that little piece of hope left, now it was really only a dream that would need to change. I kept thinking she was going to be stronger and this time it would be easier. Who was I kidding? Does it ever get easier? The only thing that was easier was I was able to stay in the hospital for 5 days with her and my bed just down the hall. I still felt robbed of my dreams. She was supposed to come in the room with me and I could sit in my PJ’s while everyone came to visit. What happened? Why did she have to be in the NICU? 6 days later she had surgery to fix her nose. We were finally able to feed her with a bottle. We could get food in her, however the nurses struggled. Finally 13 long days after she was born the doctors let us go home, only because a nurse told them she would grow better at home since we could feed her.
I had no idea how we were going to do this. We had many long nights, shift switches, and many meals from family and friends with caring hearts asking us every step of the way what they could do to help. That is how we did it. We were at the doctor’s nonstop again trying to figure this little girl out. Of course medically they were not going to follow the same path. They both had reflux and since we already had the best doctor around that was not a huge issue, but she did need surgery. Callie’s neck was fine, but she had extra fluid in her brain that was not draining, that was all new. And she still twitches and no one knows why. Either way she is the perfect little girl and we will do everything we can to figure her out just as we have Zak. After all we had plenty experience with running to the clinic and finding doctors. We were soon to be experts in that area. Advocacy was another area we were well versed in. Over time it would become easier.
I still remember when Zak got his wheelchair. It was scary. We always thought he was going to walk, actually we still do. I remember thinking why should we waste insurance money on this he does not need it. The first place he went with it was school. The kids were all excited. Zak got new wheels. They all wanted to sit in it. Wow, that was not the response I expected. I thought they would all look at him and ask what is wrong? Then we decided to venture out at a birthday party. After all, we knew everyone and we were in our comfort zone. That went well. Slowly we have become more comfortable.
Now I am the one looking at people in wheelchairs wondering what features they have and what they like. I don’t mind walking up to people with a lift on their van asking about it and what they paid. Reality is we may need one someday, why not ask. I have grown and realized if I don’t share our story how can I help others? People need to know what is going on so we can help them just as the many of people have helped us. Every person our children come in contact with they have touched. We have an amazing story, how lucky are we to have the only two children in the world that share this bond. Okay, so that is how I feel most days. The other days I think to myself, why us? What is His plan? What about the Zoo and watching our children run and what about sports? And why don’t they talk? I just want to hear MOM I LOVE YOU! We always have to think two steps ahead. How are the kids going to become independent in our house? They cannot even get in the house by themselves, they will always need to be lifted and carried. And now, once Zak is in the house he cannot get through any door with his gait trainer. These are the things parents are always thinking about with a special needs child, but I would not change it for a second. They are two of the best kids we could ever have.
We have grown during the past 5 years just as Zak and Callie have grown with us. We have leaned all about medical equipment, the hospital world, what it is like to live at Ronald McDonald house, all of the therapy needed, the extra time you need to plan to get anywhere, the car load of things you need to pack whether it be one night away or a week, the questions people ask because they don’t know better or are just curious and care, but most of all we have learned to be the best parents in the world that we can be. We have learned to speak for our child and let people know when something is wrong and not to back down. We have learned to share our story. Most of all, we have learned not to pass judgment because you don’t know the situation, and to support the next person when they may need a pat on the shoulder, a hug or just a look that says you both know “everything will be ok”. I have my kids and husband to thank for helping me be the person I am today. My dreams are not what they once were because I could never have imagined having such a special family.
Posts
