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.