40 Days

We had 40 beautiful days with Rebecca, that is all the time in this world that we shared together. She has now been gone longer than we were able to hold and comfort her. My time with Rebecca will be cherished forever but that does not ease the pain nor does it bring her back. People are always asking me how am I holding up. I tell them what they want to hear because if I told them the truth they would regret asking. It is very difficult for me to write about this but trying to tell people how I feel, even John, is extremely hard.

Rebecca's letters that I finished for her room.

No one can really understand the pain that I am going through unless you have lost a child yourself. It does not matter if that child was a miscarriage, stillborn, lasted a few days or was able to grow up to a teenager, the pain you feel due to their absence is indescribable. You are left with a big gaping hole in your heart and your mind goes completely numb. There is this everlasting fog that will not go away. There are some days where the fog is minimal and you can see through it but most days it is just the outlines of shapes and you can see objects close to you. People say I have to be strong, be there for John and Annabelle because they need me too. I know they need me too but being able to be there for someone is quite difficult when you can't even think for yourself or know yourself anymore.

This is the last picture of her alive. She rapidly went
downhill from here.

I am lost without Rebecca. I put my life on hold to give her a life and a fighting chance in this world. Did we make the right decision with doing the cardiac cath procedure? I don't know the answer to that question and I may never know. I struggle with this question everyday since she has been gone. It is a ever lasting battle that I face everyday when I wake up. My precious baby has been taken from me so suddenly and tragically that I suffer from PTSD and I have trouble going out in public without having an anxiety attack. I haven't even gone back to work yet because of it. The events of her last day play constantly in my mind. I can't sleep at night because of the nightmares and some days I just sit around in a daze. My anxiety has gotten better as I venture a little more but it has taken a long time. This past week was the first time I was able to go grocery shopping alone and not have a panic attack.

People keep asking what can they do to help. There is nothing really anyone can do for me, not even John. Being understanding and patient with me is all I ask. I will not just snap back to my old self. I will never be my old self again. I even question whether or not I will be a good Mom to Annabelle after the events. How can I help her when I couldn't even protect Rebecca?

The decisions that day that John and I had to make is something no parent should have to go through. We refused to place her on ecmo because we did not want to cause her anymore pain or sticks. In order to be placed on ecmo they would have had to cut into both sides of her neck in order to circulate her blood for her bypassing her lungs and heart. This was something that we could not live with especially since trying to take her off would have been very difficult task if she was even able to be taken off. Having doctors present that choice to you is not something you think you would ever hear, I certainly didn't. They were so positive after her cath procedure that I thought we were winning the battle.

Unfortunately we will never know what truly happened that day because we refused an autopsy. She had already been through so much that just the thought of them performing one shattered my heart. The hospital was nice enough that they allowed me to walk her downstairs to the morgue. I couldn't let someone else take her to a new place without my presence. The funeral home even let us hold her before anyone got to the viewing. It was our last time holding our wonder women.

I have been told that the pain does not go away, it will get easier with time or you learn to live with the pain in a way that will make you function again. Right now, for me, I can't say that is true. I still go to bed at night crying. She has been gone for 2.5 months and it still has not gotten easier. Annabelle asks about Rebecca, she points at her in pictures and says that is her sister Becca, she plays with Rebecca's wonder woman bear. When she does this, all I can think about is those two growing up together and playing, laughing, getting into trouble together and being there for each other but that was taken from us. Rebecca's first steps, her first day of school, graduation, college, wedding, watching her grow old was taken from us and that is something we have to live with the rest of our lives. Not being able to hear them laugh and play together, knowing she did not meet all her cousins nor aunts/uncles is a resentment I will have forever. People keep telling me she is in a better place but what better place is there than being in your Mother's arms?

I got this tattoo to in her remembrance. Those are
the actual size of her feet from her last day
on February 14.

I started this blog to document Rebecca's life and the strength we found to move forward with our decisions in that time. Strength is a relative term that can mean so many things to many people. For me, strength is getting up everyday and trying to move forward, place one foot in front of the other. Losing a child puts a strain on any relationship you have, whether it be with friends or family. Unfortunately, losing someone, especially a child shows people's true colors in who you call friends and family. People who you thought were your family and thought they cared turn out to be just another face and friends you thought were lost come back in the most amazing ways to support you like family. I live each day with a broken heart that will never be fully healed, it may be mended at one point in time but the scars and memories will remain.

One Month Old

Today Rebecca is one month old. We have had a steady ride during this last month. We have been patiently sitting at the hospital waiting for our little peanut not to be so little anymore before her first procedure. She had to hit the 2 kg mark before having her cath to determine what route is her best viable option. While we wait for her to grow, she will work on taking a bottle to wean her off the NG tube.

During this past month she has made progress with her feedings and tolerating the food increases well. We are up to 36 ml (~ 1 oz) every 3 hours that is 26 kCal fortified (breastmilk is only 20 kCal so they put in milk fortifier and protein to get the extra kCal for weight increase). Speech pathologists and occupational therapy having been working with her daily on eating from a bottle. On a good day she will take 5 ml at two different sittings with them. If she does this, then the next day she won't take any because of the amount of work it exerts on her body to try to coordinate eating and breathing. Each day is a different day on how she feels and how much she energy she has to work. Two weeks ago we had our first attempt at breast feeding since she was doing so well with taking a bottle.

She did end up latching which was the best feeling in the world! This is what we were working towards and to have that positive outcome was so emotional. The lactation consultant and I were both shocked at how well she did. It was a huge victory that day and I got permission to put her to a pumped breast once in a 12 hour shift while she was being fed through her NG tube to help her connect. I did this at least once a day and each day she became better and sometimes ended up actually nursing for a brief moment. There are no words to describe how this makes you feel as a mom and to have that connection that you have been wanting since giving birth. It is very hard work not only to get her to latch but to also pump constantly for her every 3 hours. It takes a lot of determination and discipline to keep on top of pumping.

On January 26, at exactly 3 weeks old Rebecca hit her goal weight of 2 kg. Everyone in the CICU was so excited to hear the news that she was getting her cath scheduled. Turn out to be scheduled for February 3rd. The people that had had her when she was first born kept stopping by to see her and her weight gain. The following days were also a big deal for her as she was upgraded to a different giraffe bed. NO more incubator!!

Incubator top open to see if she can hold her own temperature for 24 hours. They do this before moving to a different bed to see if she can tolerate holding her own temperature. 

January 26th was her first day in her big girl giraffe bed. Such an emotional day for all. So many people around the CICU came by to see her and her upgraded bed.

January 29th was Daddy's first attempt at bottle feeding with the watchful eye of speech pathologists. Very tricky feeding Miss Rebecca since she has to be paced. Only can take 4-5 sucks at a time with a break in between each spurt. 

With special permission, Annabelle was allowed to visit Rebecca before her cath. Annabelle thought Rebecca was a baby doll and kept offering her blankets, her wubbanub and her stuffed animals. Loved seeing Annabelle interact with Rebecca. 

The very next day on February 3rd, Rebecca went for her cath procedure. I was a nervous wreck. I hid it very well and kept my emotions under control so she wouldn't get worked up either. I was so anxious waiting on her going back that it seemed like it took forever. They came and got her after 3:00. During that time, I finished up her Wonder Woman blanket to keep my mind off of the cath procedure as much as I can. They called throughout the procedure with updates and it was all promising. The calls kept coming in and so did the good news. We got the news that her coronary ateries were ok and that they were going to proceed with attempting to puncture her pulmonary valve. We got the call that they were all done and the news that it was a success. Her pulmonary valve is now open but her right ventricle is still small and needs time to try to grow if possible.

February 3rd was an emotional roller coaster. After not knowing what was in store for her to finding out the good news to seeing your daughter incubated is something that I won't ever forget. Seeing your child lying incubated is very upsetting. 

She remained incubated until the next morning.  I was so thrilled to have her excubated and be able to hold her again. Her prostaglandins were turned down to compensate for opening up her pulmonary valve. Rebecca was more awake yesterday then she has ever been which was nice to have her be more aware of her surroundings.

Unfortunately last night, Rebecca's O2 stats started to drop down. In order to help her out they decided to give her an IV fluid bolus which seemed to help for a bit. They kept giving her more bolus' but it never lasted. They made the decision to give her a blood transfusion to help. This also helped out for a bit, more so than the IV bolus. We are currently back to giving her IV bolus with her being on 3 L of oxygen through a nasal cannula. It is an uphill battle we are facing trying to get her to use her right ventricle if possible. As we wait for that to happen, they will be watching her closely for her O2 stats. We will remain in the CICU until she is able to be weaned off the prostaglandins and her stats are stable. She loves being held today so that means lots of cuddles from mommy and daddy.

One Week Postpartum

It has now been one week since Rebecca has joined our world. Even though she has been here a week, it seems as if it is a dream for me. It is very difficult to deal with the fact that her only world she knows is an incubator, which basically simulates a womb. She is limited to kangaroo time and visitors, Annabelle can't meet her little sister, and she uses a feeding tube. I am so overwhelmed with emotions I don't know where to start or how to process them. 

I love being a mom. I love hearing Annabelle say I love you, running to give me kisses and hugs, and having her hold my hand. These are the little things that mean the most to me. Last night I got to experience these items once agin at home for the first time in a month. I was so happy to be home with her but at the same time I felt guilty being there and leaving Rebecca by herself. I know both girls are in great hands no matter where I am, it's just hard not to be with both of them at the same time. I feel like I am only a half a mom to them both since I am not fully with them. I am constantly thinking of the other while I am with the one. It is an ongoing battle that will not get an easier. My emotions are all over the place and sometimes I just start crying. It is a lot to take in.

Rebecca continues to do well and has had her umbilical lines removed this week. Her jaundice is improving each day and her feeding amounts have increased. By the nights end she will be at 14 ml of my milk every 3 hours for feeding and then it will be fortified to give her more calories to help her pack on weight. Most of this amount is through her feeding tube and the rest we try a combination of using the nipple of a bottle with a syringe or an actual bottle. It all depends on her day and how tired she is that day. She is also starting to let the nurses know when it is feeding time which is a fantastic sign. Today I was able to hold her while trying to feed her. This was the first time she opened her eyes and looked directly at me while eating. She gave me the most wonderful present when she did this. It was a bonding moment.

It has been a really long week and we are all tired. John will be going back to work tomorrow which means I will see less of him and Annabelle until I can start driving again. We are taking each day at a time and continue to pray for Rebecca to keep gaining weight. We are shooting for 2 kg (~4.5 lbs) before she goes to the cath lab. Until we hit that weight, her treatment will just remain the same, to grow. She is back to 1.5 kg from starting diuretics but should start gaining weight again. She is tolerating her feeds and loves kangaroo time. She is also very reactive to pour voices and touch. She does not like cold at all and is very vocal about letting you know. 

I would not change being a mom for anything in the world. I know there are days that are very tough because your patience is tested but that is the best part of being a parent. Not only are you learning and evolving but you are also teaching your child at the same time. They follow your lead and look up to you for guidance. I am thankful Annabelle has such a strong daddy to teach and shower her with love while I provide this to Rebecca. We are very blessed to have our girls in our lives no matter the circumstances.

The BIrth

People wondered how bored I was getting from being in the hospital so long. Honestly with how many people came and went in and out of my room from just the hospital staff, it never became a dull day. I also had my family who stopped by a lot and were life savers with food. Let me tell you how boring hospital food gets when they rotate through the same food every few days. Some days were better than others but having supplemental food really helped. I also had a lot of games/puzzles to keep me occupied.

As the weeks passed by in the hospital, I continued to try to have a positive attitude as much as possible. It has been very difficult to do this but don't get me wrong I did have some bad days. The nurses and doctors have tried to make it as easy as possible and provide comfort and support as much as they can. Each week I had two ultrasounds and two blood draws along with twice a day baby monitoring. It fell into a routine which made the days go by plus I was waking up pregnant and going to bed pregnant with the reassurance she was fine from all the tests.

I have now been in the hospital for one month. It has been a long month especially when it is during the holidays. I completely have stopped bleeding but my blood pressure was still running high, having headaches and my lab work was still showing I was pre-eclamptic but some how it seemed to be improving a little bit. On December 21, we went to our next growth ultrasound and found that she had a nice growth spurt. Rebecca was now weighing over 3 pounds which seemed very promising.

We started off that week with good news with Rebecca but suddenly Annabelle caught a nice stomach bug that night. This was my first time away from her when she was sick and it was very hard for me not to be there. Good thing she has an amazing Daddy! John took care of her throughout the week and she was finally feeling better by Christmas Eve. They were able to come down and see me for that day for a short period of time. Annabelle was excited to see me and I her. It made my night. I also got to watch her open presents through Facetime and enjoyed that moment.

Christmas day came and I Facetimed John and Annabelle again to watch her open up her presents. She was just fixated on her easel and wanted to paint all morning. I was ok with her only opening one present and so I watched her paint. Later in the day they were coming down to see me. That changed pretty quickly. John has now caught Annabelle's stomach bug. They both stayed away for a while to recover completely and to not bring the stomach bug to me. The next time I got to see Annabelle was on New Year's Eve. I was allowed to leave the hospital for a few hours and we went to my Dad's to allow Annabelle to play while I can maintain my bed rest. That was the best way to spend the last day of 2015, I got to see her laugh and play right in front of me, received lots of kisses and hugs from her and she was even wanting Mommy snuggles!! Best day in a while for me.

We officially made it to the New Year and a date has been set for her birth! Rebecca was still showing positive results with her daily monitoring and ultrasounds. As long as that continued we were set to welcome her on January 11 via c-section. We were also excited because we were just 3 days away from finding out her new weight. On January 3rd, I started going into labor again at 36 weeks. In order for me to make it as close as possible to 37 weeks, I was given IV fluids to help slow down the contractions. It helped and the contractions started to slow down and so we thought we  had bought more time.

Monday, January 4th was finally here. My appointment was set for 1:00 pm for her growth scan. The sonographer had to get her dopplers, biobhysical profiles and fetal scans. The biophysical profiles were all normal and she passed. When it came to her growth and dopplers, she did not pass. The sonographer told me the doctor would come to my room to discuss the results of the ultrasound. Obviously this was not good news.

The doctor finally showed up to my room around 5 pm to discuss the results. He informed me that she did not gain any weight in the past 2 weeks and that 2/3 of her dopplers were abnormal. We needed to deliver now before anything happens to her. Her best chance is during the day so that Children's Hospital would have a day with her to get her settled and stabilized. We were scheduled to have her the next day, January 5th at 12:30 pm.

The big day quickly approached and I became more nervous and anxious as the minutes ticked away. By this time, my contractions started to pick up in intensity and getting closer together. One way or the other Rebecca was coming. Since I did not go into labor with Annabelle, they weren't too concerned with me progressing anywhere close to where I would need to be before my c-section for a regular delivery. I continued to get IV fluids for the c-section and was taken back to the prep room. We were delayed due to the doctor being tied up with another patient. We waited almost an hour before we were taken back. Due to the circumstances, my sister Amber joined me in the OR while John stayed back so he could go with Rebecca and be there for her.

At 1:43 pm we welcomed our fighter Rebecca, weighing in at 3 lbs 5 oz and 15.5 inches long at 36 weeks 1 day, a premie. She came out with little tiny cries that made me start to cry because I was so happy she was able to breathe on her own. The NICU team took great care of her and assessed her quickly. She had great APGAR score and was giving them some cries. She did have a breathing mask on for a bit since she did swallow some fluid. She had to be suctioned out and given oxygen. Before they left the OR, I was able to touch her and give her a kiss.

While I was in recovery, John was with Rebecca in the NICU. They were able to get her stabilized and she also got baptized. I was in recovery for 2 hours. By the time my recovery ended, it was time for her to be transported. I was wheeled over to the NICU to see her before she left. I was even allowed to hold her for a few minutes before they left with her. It was such an emotional time, that I was so overwhelmed I did not know what to do. John followed her to Children's and spent the night with her. She had so many tests done last night, I don't know how he got through it by himself. I had trouble sleeping the whole night from hearing other babies cry right next to me to worrying about Rebecca.

The morning finally came and I was informed I am allowed a 4 hour pass to go see Rebecca as long as I am up to it and stable. My mom and dad came to get me and we rode over together. When I got there, I walked in on the best thing I could see, John and Rebecca together, having skin to skin contact. Talk about your heart melting.

I also was able to hold her for awhile too and it was the best feeling in the world. She is so tiny in our hands it amazes me how well Rebecca is doing and how stable she is for her size.

The doctor's informed us that no decision will be made about her course of treatment until Friday, which is when they will have there conference meeting with all the cardiologist and cardio thoracic surgeons. They want to make sure they have all the information they need to make the best informed decision as a collective group on what will be best for her. Until that day, we will wait and they will keep her stable.

Goals

Goals. Everyone at one point in life will set a goal for themselves or for others. This is how people succeed in what they want would like to accomplish. It is one step at a time taking each day at a time whether it would be losing weight, starting a routine or to better themselves. This has now become my life, setting a goal each day.

Over the last month, we have been moving forward towards my goal of making it first to 32 weeks without any complications. During this time, we celebrated all three of our birthdays, John and I being together for 10 years and Thanksgiving with our families all while Rebecca continued to thrive inside. Little did we know that would change within a day.

On Friday November 27, the day after Thanksgiving we went to my regularly scheduled growth ultrasound. We had our fingers crossed the whole time hoping that her growth continued and we would be released as normal until the next time. Once the sonographer was completed with her scan, she went to talk with the doctor as usual. This time, it took a while for her to come back and when she did, she was not alone. The doctor explained the situation to us with Rebecca's growth issue that even though she is growing she is not growing significantly. She is now less than the 10th percentile. We knew that she would have growth restriction in the first place due to her congenital heart defect since most babies with a heart issue are born smaller but for her case, the size is a big deal. Her size effects the outcome of her surgery and the shunt they would be able to use. Getting her to grow more/go full time is now the main focus of the pregnancy. Due to this, the doctor decided the best course of action would be bed rest for me. There is no proven study to say that bed rest will help increase her size but it is the only way they can think of to help me expand less energy and give her more calories to take in.

I went to work that Monday to get everything situated before I started bed rest and to discuss going on short term disability. I am a very fortunate person that my work has been so understanding and has supported me the whole time. Not many people have that support system at work and I count my blessings for the people I work with. It was very hard for me to stop working even though I knew there was some possibility that this would happen. It is also very hard for me to sit around at home and not lift a finger. Having a 2 year old at home makes the situation more difficult because she does not understand that Mommy can't get up and play with her. We tried to make it work the best we could for her and she was able to get lots of Mommy cuddles on the couch. As the week progressed, I continued my weekly appointments with the non-stress test and biophysical profiles with no issues. We wanted to do something as a family together for Christmas that Annabelle would enjoy so we decided to go to the Lebanon Horse Parade the first weekend in December. We were lucky that John's sister and her family went with us because they helped with Annabelle while I got to sit the whole time. She was so excited for the parade and loved the horses. She would tell them Merry Christmas and wave, let us know when the horses decided to poop and when it was stinky. It was the cutest thing to see. The smile on her face just lights up my world.

Monday December 7th I reached my initial goal of 32 weeks without any complications. I had my regular 2 week OB check up that day along with a growth ultrasound. During the visit the doctor informed me that she had not shown any significant growth and is still measuring less than the 10th percentile. She was measuring around 2 lbs 7 oz which is about 1 kilogram. She stated that I should bring my hospital bag with me next time I come back for growth ultrasound because if she does not show any improvement then I would go into then hospital and be monitored daily.

Two days later, on Wednesday December 9th the unimaginable happens. After being sent home two days earlier, I ended back up at Good Samaritan Hospital but not for a doctor's visit or ultrasound. Around 10 am that day I started experiencing bleeding which is not a good sign. I called the doctor immediately to inform them of the situation and I was told to head start to the OB triage floor. Once I got to the hospital, I was examined, had blood drawn, vital checks, checks on the baby to see what was going on. After all the initial exams, I called John to let him know of the situation along with my family. While I was on the monitor, they noticed I was having pre-term contractions. To help reduce contractions, I was put on magnesium sulfate and given a steroid shot to help mature Rebecca's lungs. I was very scared because I was so not ready for her to come out. Thankfully the magnesium sulfate worked and my contractions started slowing down and my bleeding stopped.

Over the next couple days, I was monitored around the clock and was stepped down from the labor and delivery floor to the high risk OB floor. I was so thankful to change rooms. It meant that Rebecca would be staying in longer, the bad news, since I bled it means a mandatory 7 days in the hospital from the first day of no bleeding. Still to this day, there is no definitive answer as to why I started to bleed but they think I had a slight placenta abruption that healed itself which would lead to my pre-term contractions. It will remain a mystery but what I do know is the earliest I could potentially be released is on December 17th as long as no new bleeding occurs or so I thought.

Over the weekend, my health started to decline. The doctor ordered pre-eclampsia labs. Turns out I have a mild case of pre-eclampsia on top of everything else. Now this makes life more difficult. I will continue on my current path of monitoring but now I will have to have blood drawn 2x a week to make sure my condition does not worsen. This could also mean that my hospital stay could be extended since my health is now in question along with Rebecca's. The doctor's say I am in such a gray area that they can not give me a firm answer as to what they want to do. There are so many factors to consider that the best course is not clearly defined. It is a pins and needles kind of game we are playing. Rebecca needs to stay in as long as possible to have the best outcome with surgery but how my body will handle her staying in has become the challenge.

An even bigger challenge now has come into play. We met with the cardiothoracic surgeon at Cincinnati Children's this past week along with having another fetal echo. We finally have an answer to the weight requirement for Rebecca. They would like her to be at least 3 kilograms (approximately 6.9 lbs) for the best possible outcome and least amount of complications. The reason for this is that the smallest shunt they have is 3 mm and the size of the shunt correlates to the weight. If the shunt is too large, then there would be too much blood flow going into the heart which could cause he to go into cardiac failure and not take the shunt. We really need her to have a major growth spurt in other words. They of course said they would do everything possible no matter her weight. This does give us some relief but not enough due to complications that can arise.

After our meeting with the surgeon, we went to our scheduled fetal echo. What was to come from the result is something we were not prepared to here. This echo lasted much longer than the others and was more detailed. When the doctor came in to discuss the results we were in shock as to what she said and was not prepared. The scan is showing another abnormality with Rebecca's heart. The problem with this abnormality is that they can not know for sure since the scan can only provide so much information. She informed us that Rebecca's right side artery may not be functioning at optimal level or at all. The only way to tell for sure is to have her go through a cath lab. If it turns out that her arteries are normal on her right side we will proceed with the initial plan of the three surgeries. If it turns out there is issues with the arteries, then we have a huge problem and the arteries will not be fixable and it means we can proceed only with the first surgery.  This will give her approximately 4-6 months to live on the first surgery as long as she does not have any complications. In the meantime, she would have to be placed on the heart transplant list and we would be waiting for for a teeny tiny heart to become available. To add to the matter, there is also a weight requirement for a transplant that we are waiting to here about so she could potentially not qualify right off the bat due to her size. It was the most gut wrenching news I have ever heard in my life. To know you are carrying a life and not be able to do anything to help her is indescribable. Needless to say my goals for this pregnancy has changed dramatically.

Before my goal was to make it to 32 weeks with being pregnant. I have now made it to 33 weeks. My goal now is to take each day and stay pregnant. I can only take it one day at a time. Each day that I wake up pregnant and each day I go to bed pregnant I meet my goal. People keep asking me how I am handling everything and if I am doing ok. Honestly to tell the truth, no I am not doing ok. What normal person would be. I am just choosing not to dwell on it. I am focusing on Rebecca and my health as that is all I can do at the current moment. I am focusing on the little things. I am not looking towards her birth and trying to make those decisions now and worrying myself with them. Who knows if this is a healthy way to deal with feelings but for now it is getting me through my day and it is working.

Rebecca is thriving and continues to impress me everyday. She is such a fighter and is a wonder to us all as to how she is handling all this. She is my superhero and my inspiration.

The Weeks looking back

These past weeks have been really rough. We have been on a whirlwind of doctor's appointments and opinions on the best route for us. Ever since we have found out about our daughter's heart condition, I feel like we have been living on a cloud. Our feet, since that day have not touched the ground and we can't get ahead  or catch a break.

In the following weeks, the Perinatologist recommended that we do genetic testing to rule out any other issues that we could potentially run into. We could either do an amniocentesis or do a blood draw. Due to the high risk of an amnio, we decided a blood test would be the best and if something more needed to be done, then we would reconsider the amnio.

At the beginning of October, I went for the blood genetic testing, We patiently waited on our results. We did not expect anything out of the normal to show up, but with the way our days have been going of course the test found something. The blood test came back showing signs of Trisomy 16. If you are not familiar with genetics, I will be giving a brief explanation of what this is.

Humans a total of 46 chromosomes. Each person is given 23 chromosomes from Mom and 23 chromosomes from Dad which gives you 23 pairs of chromosomes. When one of those pairs has an extra strand, then that is what is known as trisomy (three copies of chromosomes instead of two). Each chromosome has a reference number 1 - 23 which will give rise to different birth defects. There are three major chromosomes that are widely checked, 13 (Patau's syndrome), 18 (Edward's syndrome) and 21 (down syndrome). Most people are familiar with Trisomy 21 due to it being known as down's syndrome. Trisomy 16 is not very well known or have had a lot of studies. Not many people have been diagnosed with this genetic condition. The reason, full trisomy 16 is not compatible with life. From what was explained to me, most miscarriages are due to trisomy 16 and the baby will not live past the first trimester. The doctor ruled this likelihood out since we were well into our second trimester and she is doing very well except for the CHD. The Perinatologist provided us with two instances why this was flagged on our blood draw. The first is that the baby could have trisomy 16 mosaicism, This would mean the baby has an extra chromosome copy somewhere in the body but does not effect all of the cells. The second option is that it is just confined to the placenta which would effect her growth rate. Her recommendation, amniocentesis.

John and I discussed this in length. Would performing an amniocentesis help us in any way, what risks are we at now with knowing all of her conditions, is it something that we have to know are just some of the questions we were faced with. We decided to see a genetic counselor to help us make this decision. Unfortunately, this did not go as planned. The counselor could not provide us with any more information than what we have already gathered. It is such a rare genetic marker to find late pregnancy, they were shocked to see we were flagged. They also recommended we do an amnio to provide answers. We decided to go ahead and have the amnio because I needed to know what we were going to deal with and if this would complicate her delivery anymore that what it is. On October 23, one month exactly after finding out about her CHD, we had the amnio.

We were informed that the amnio FISH results would be provided within 24-48 hours to come back, the final results would take anywhere between 7 - 14 days to receive back.. We received a phone call the next day with the FISH results, the initial results were positive. No genetic flags showed up, meaning she did not have full trisomy 16, 18, 21 or 13. We were ecstatic to hear this but we already knew she did not have full trisomy 16 but we counted our blessings because that meant she did not have any of the others as well.

We patiently waited for the final results. I was on edge the whole time while waiting. I had more patience though than others who were constantly asking me for the final results. I do understand that people are praying for us and want to be kept in the loop with everything but to add more pressure and anxiety to this situation is not helpful and not what I needed on top of everything else. I was accused of being inconsiderate for not giving out results right away and making people wait. If that is how people want to perceive me than I will let them. This is something for my husband and I to have time to adjust to either the good or bad news. We needed time to ourselves first before sharing. People were checking in almost everyday since we had the procedure done and it just added so much more stress to an already stressful situation. People did not understand that it could take up to 14 days to here back plus to add in time for us to adjust to what news there was. Finally the wait was over.

I received the best birthday present last week. On Wednesday, November 4th, the final results were in and we have a genetically normal baby girl! We were elated to get the news. I was tearing up when the doctor told me over the phone just because of everything that was bottled up emotionally on the inside and getting news that was good for once. I went ahead and shared this information with our immediate family so that they would know. I could not contain my happiness. That quickly faded as I was informed also that I had failed my 1 hour glucose test and I would need to have the 3 hour testing. What more could be thrown at me.

All the while I am continuing getting my weekly ultrasounds of fluid/doppler scans weekly and growth/fluid/doppler scans bi-weekly. Each week I go in and each week I am cleared to go home and she is clear to stay in utero. I am very blessed each week this happens because it helps her grow more on the inside and keeps her protected.  This past Friday, the ultrasound tech surprised me and did a quick 3D ultrasound to get a profile view of our little Rebecca. She already reminds me of her older sister, Annabelle. This was very thoughtful and I am very appreciative of the tech for doing this.

Rebecca continues to thrive for the time being on the inside. We have not had any scares from the ultrasound and will continue to go weekly to watch her and any signs of distress. I also met with my new doctor this week and she suggested that I have a bag packed and a plan in case I need to be monitored more closely whether that means in hospital or living closer to Good Samaritan hospital in Cincy. As  I am supposed to be enjoying my last few months of pregnancy, I am planning for a hospital stay/early delivery as a precaution. If that is what is needed to help Rebecca, then that is what I will do. My only hope is that Annabelle will understand later in life and that I will not blame myself for missing out on her every day adventures. I feel like I am already missing so much just because of all the appointments/monitoring that have been going on to my blood pressure and swelling and trying to keep that under control.


This month and a half has literally been a roller coaster and I have some good days and I have some really bad days but that is to be expected. I am allowed to have those bad days and I am allowed to be sad. It is not an easy process and there is no instruction manual in life for what we are going though nor will there be one once Rebecca makes her debut. We can only hope and pray that each decision we make is the right one not only for her but for us as a family.

The Day that Changed Everyting

September 23, the day our world turned upside down. This day I will never forget. The day the outcome of our pregnancy journey changed.

Wednesday, September 23, we woke at our normal time and proceeded to go about our routine in the morning with getting ourselves and Annabelle ready. We had our perinatal ultrasound appointment at 8:30 am. This was not an exciting time but rather I was anxious. We dropped off Annabelle at daycare and proceeded to the hospital for our appointment.

This was not my first time at the Perinatologist. I had weekly ultrasound appointments there with Annabelle later in pregnancy for her growth restriction and not being able to feel her kick. Even though I have been here before, I was still extremely on edge and my blood pressure reflected that. The nurses asked if my blood pressure was always that high and I responded with no I am just nervous. They took the rest of my vitals and I went back out to the waiting room to be called back.

We were called back by the sonographer, Nervously I walked back to the room. I couldn't even tell you what her name was because the day was such a blur. She proceeded to get all the vital information the doctor would need and we saw on the screen the baby was still measuring 2 weeks behind. She finished up with her scans and left to show the doctor the results.

                                                        21 week ultrasound picture

We waited patiently for the doctor to come in. I couldn't contain my nerves. I sat there nervously watching the door waiting for her to walk through. My eyes were focused on that door and wanting to see her reaction as she came through. All the sudden the door opens and she walks in. Her face. I could tell by her face. This was something serious. She proceeded to tell us about the babies weight and that she was concerned with how small she was. Then, the news came. She found an issue with the babies heart. She told us it was either pulmonary atresia or pulmonary stenosis but she was leaning towards pulmonary atresia. To confirm her suspicions, she sent us to Cincinnati Children's cardiology for a more in-depth scan.

At Children's, my mom and dad met us there for support. We were both scared and did not know what to expect. The sonographer called us back to get started. It was an in-depth look at the heat called a fetal echocardiogram. When she finished up, the doctor reviewed the sans and came in with a bunch of information. I am glad my parents were there for the support when she told us the news.

Our baby had not only pulmonary atresia, but also a smaller right ventricle and tricuspid valve. This is known as hypo-plastic right heart syndrome (pictured below). This means the baby will be born with half a functioning heart, only the left side. A single ventricle heart instead of a double. My heart sank as I heard this news. I didn't know how to handle the news, neither did John.

The doctor further explained to us that our baby girl would have to undergo 3 open heart surgeries and the first one within the first week of her life. We were devastated to say the least. How can we do this, how could this have happened, why did this happen, what did I do wrong were all the questions I kept asking myself during this time. It is even more strange when there is no family history with a heart condition in either side of the families.

We both missed work on Thursday from the emotional roller coaster and news we just received. We tried to go in on Friday but both of us ended up going home early. We spent the weekend trying to wrap our mind around this news and sharing it with our families. Everyone was in shock when we told them. It is a very hard concept to wrap your mind around. I am still not completely there to say the least. It is something I struggle with everyday. Each day I take with a stride and get very emotional when discussing our situation with others. We don't know what kind of outcome she will have or how healthy she will be due to this congenital heart defect and IUGR. The cardiologist recommended a follow up fetal echocardiogram in 4 weeks to check on the progress.

Meanwhile, my OB and Perinatalogist recommended the best course of action was for me to transfer my care to a Maternal-Fetal medicine doctor (extremely high risk doctor) in Cincinnati so the baby will be easily transported to Cincinnati Children's immediately after delivery. I will not get to hold my baby girl when she is born nor get to see her until after my c-section is over. This is a hard pill to swallow. I will not be in the same hospital as my child and will be away from her not by her side for at least 2 days.

I will now receive weekly ultrasounds to keep an eye on our daughter to make sure she is still growing and the flow of blood in the umbilical cord is moving forward. If something looks off, then our situation will be re-evaluated. All this news in one day was just overwhelming and this was 1 month ago to the day we learned of our daughter's defect. Our lives have now changed. We will be having a daughter with a disability.