On the 3rd day, she rose again... (too cliche?)

I find this blog very hard write. I have spent so much time telling and re-telling the story. I want to get it out there once and for all, but it takes a toll on my emotions reliving it. So thank you for bearing with me.

So when we left off in the last post we were about to meet our surgeon. But more importantly we had her baptized.

The day she was born, her Daddy went around the hospital looking for a priest. We were unable to find one. The chaplan said when he returned she would have him come see us. The next day there was a knock at the door. We explained our situation to him and told him she would be having surgery soon. He followed us to the NICU where he proceeded to Baptize her with the Holy Water we had brought with us. We would have liked to have had her grandparents present, but under the circumstances we had to do what we had to do. She was Baptized in the name of The Father, The Son & The Holy Spirit by Father Ajiboye.

The fabulous Dr. Polimenakos would take the time out of his day, on the day of her surgery, to sit with us in the NICU. He grabbed a blank piece of paper and proceeded to draw out a heart. He demonstrated to us exactly what was wrong and how he was going to fix it. We were concerned with it being a teaching hospital, and having just watched the first 3 seasons of Grey's Anatomy, that an intern maybe helping in the procedure. He assured us that he would be the one performing the surgery and that no interns would be touching her. Dr. Polimenakos had 3 baby hearts to operate on that day. Faith would be the last one of the day. It was a Friday.
We sat in the NICU for hours that day. We had not been able to hold our little girl at all. She had so many wires and things hooked up to her, they felt it was not safe. One nurse however felt it was a good idea that we hold her before her surgery. We are forever thankful to you Nurse Megan for bundling up our little girl so that we may hold her before her surgery. This would be the first time her Daddy had EVER held her.

She was wrapped in her cute little lady bug blanket. A red hat to match. Nurse Megan had dug through the bag of knit hats to find a red one to match. We hold this hat near and dear, she would later wear this hat throughout her entire surgery.
So the clock ticked by. We took turns holding our little girl. Tensing up every time the door to the NICU opened. It seemed like the time was never going to come. Not that we wanted her to have a surgery, but we wanted it to be over so she could begin healing. After several hours the nurses offered to call us if we wanted to go get something to eat. We did leave for a short bit to grab a bite, but then straight back up to the NICU to be by her side. Finally the time came. The staff prepared her for surgery. We kissed her and said our "see you laters". Fighting back the tears, we sent her off in the trusted hands of Nurse Kristin. She assured us that everything was going to be OK. That she would keep us updated the whole way. We gathered our emotions and our things and moved to the PICU. It would be several hours before she would arrive there. The other 2 babies were out of surgery and were with their parents. The clock would tick and tick and tick as we awaited the return of our baby. We tried to get cozy in the PICU, but who could get cozy not knowing if their baby was going to be OK.
After about an hour Nurse Kristin came in with her lady bug blanket to give to us. We would put it in the bag with the other blanket we were keeping for her. You see when we were planning a funeral for her, before she was born, I wanted a pretty soft white blanket for her to be buried in. My mother and mother in-law had purchased one for us. I kept it with her the whole time she was in the hospital. I wanted to make sure she had in case something happened. Anyways, I immediatly asked where her little red hat was. She smiled and said, she is still wearing it and will keep it on during surgery. That made me smile. She said they had started and she   would check in with us in a bit. Tick, Tick, Tick... after several more hours she came out again. She told us that she is doing well and that the surgeon would be out soon to talk with us. They asked us to go in the waiting room while they brought her up. That they had a lot of things to plug in and arrange.
We sat in the waiting room for a bit. Dr. Polimenakos came in with a smile. He always had a friendly face. He proceeded to tell us that things went well and that he was pleased. The original repair he had performed did not take well. It did not allow the pressures to be appropriate for her upper and lower body. He had to then take the repair apart and perform a new one. He explained that instead of tying the 2 ends of the coarc together, he had to take an artery from her left arm, splice it and patch it in. This was much more successful than the first attempt. We were relieved that he was confident in the second repair.
and now we wait again......
Finally they came in and said she was all set, that we could see her. Nothing can prepare you for seeing your child go from being wrapped in a cute blanket and hat, to a baby hooked up to wires and tubes and not breathing on their own. We asked Dr. Polimenakos how long she would be on a ventilator? He said he couldn't say for sure. That every baby is different. If she did well overnight, it could be as early as the next day. That excited us, for the time being. My husband was concerned about her eating. She had only been fed nutrition in the NICU through the tube in her belly button since they can not eat before surgery. The surgeon explained that her gut would have to be functioning before she could start to eat. They could not have her vomiting while in this condition. They would start her with a sort of sugar water. If she handled that they would proceed to give her something else and eventually Moms milk. After all I had a quite the stock pile for her. They don't allow parents to stay in room that night since the lights would be on and she would need a lot of close care. We eventually left after seeing her for a bit.
The next day would be the start of another gut wrenching weekend...
To be continued....

The Turner Syndrome Journey Begins..

Back in September of 2008, I went in for a pre-natal apt... At the apt we did an ultrasound to see why I was having random bleeding.. The U/S Tech (whom is amazing!) said she needed to find a doc to talk with us. My regular doctor was not there that day of course, so we opted to see another. We went into the exam room and waited for the doctor to come in. She sat down with our U/S pics and explained that the placenta was covering the cervix... then she said "that is not our main concern". She then proceeded to tell us that our baby had a large cystic hygroma. I had no clue what she was talking about. I had never heard of it before. She said it was a large fluid filled sac growing on the back of our babies neck. We still didn't know what this meant for us.. She said it is most likely due to Turner Syndrome.. again I had no idea what she was talking about. So we asked her what that meant. She proceeded again and told us that Turner Syndrome is a chromosomal abnormality, that our baby was missing the second x chromosome. We still had no idea what that would mean for us. She then looked at us with puppy dog eyes and said "I am very sorry, your baby is not going to make it. There is really nothing we can do for you".... Talk about blow to the gut. I had had 2 miscarriages before... but never been far enough along to see the baby on U/S and then be told the baby will not make it. Honestly I was numb to the miscarriage thing but was not prepared for this.... I was about 15 weeks along and figured since I had made it this far.. I would be in the clear... At this point we were referred to a specialist. Lucky for us they had one from Chicago in the building once a week. So we gathered our things and our emotions and headed towards the door. Nothing like leaving an OB's office crying.. mean while all the other mommy's to be are sitting there wondering what happened... I felt bad for them having to see me walk out crying.. My husband was strong and held back... although I am sure he bawled his eyes out later. I am always a strong person and never let anyone see me cry.. so he had to be strong at that moment for me.
We got in the car and called our moms. Ironically he called my mom because I couldn't muster up the words to tell her... somehow I was able to call his mom and tell her. She is not one to cry either.. but she couldn't hold back. I could hear the tears in her voice. I then called one of my best girlfriends and told her about it... she of course was devastated as well... we were pregnant together and this was supposed to be fun and joyful for both of us... We stopped at McDonald's to eat and went to get our little girl from my moms house. I kept my composure so that I didn't alarm my little girl. She was not even 1 1/2 at the time....
Upon returning home we put our little darling down for her nap. I then just lay in my bed and cried. I had my husband call our chiropractor to see if he knew anything about Turner Syndrome. He always gave us the straight forward on what he knew. He said he knew that girls with TS could live normal lives. That it wasn't always fatal.. That gave a small glimmer of sunshine. The Internet became my best friend searching Turner Syndrome, Cystic Hygroma's... All I found was bad news.. Nothing real positive....
A few days later we met Dr. Pombar... he proceeded to explain that in cases like this they can offer termination.. he started to explain the different ways we could go about it. We stopped him and said that was not an option for us. He was relieved.. so now what.... we explained that we are practical people and wanted the straight info.. What are her chances? He said that 99% of baby's in this condition do not make it. How long does she have? They usually pass before 24 weeks.. he had never seen one go longer than that.. so what do we do now? Well we come in every 2 weeks to have a heartbeat check. Once her heart beat is gone then we induce... Give birth to my baby whom is no longer alive... WOW!... We then went to see our regular OB. Dr. Harmon.. we have so much love for her as well. She delivered our first baby and took care of me when my placenta tore... took me to surgery immediately.. anyways.. she gave me a big hug and said how sorry she was.. We asked her how it worked with being induced once the baby passes.. She said they would induce like they did with our first daughter. We were told it usually take a little bit longer since the cervix would not be ready. If the baby was not able to be delivered that way (because of the placenta covering the cervix) they would have to do a c-section.. problem with that is they would have to cut vertical instead of horizontal, which could cause problems for future pregnancies...

I got a lot of support from friends and family. Mostly the natural response of "I am sorry and Let me know if you need anything". I did get one whom thought I should terminate.. That the baby was suffering... in which I responded.. NO she is not, if she was she would have an elevated heart rate.. she does not. Her heart rate was stable and normal. The next response from the same person was.. well this is not good for your health... suddenly they had been to medical school and new what my body was doing?? Wrong again.. no strain to my health... so let's go to the mental aspect of it... terminate my child.. so making the choice to kill my child versus letting nature/God do his thing...Choosing to kill my child versus letting God's will be done... I could not live with myself knowing I did this.. thinking everyday.. what if.. how would that be emotionally better for me then just allowing God's will to be done...?
From that point we went in every 2 weeks to hear a very strong heart beat.. there were a few U/S in between.. but none to write home about... We proceeded through all the holidays. I managed to hide my pregnancy from most people being that Chicago gets cold starting in October.. thank goodness for sweatshirts and vests... Come December it was getting harder to hide since I was due in March... So by Christmas we were past the 24 week point and were sure it would be any day now. Dr. Harmon had promised me that her life was not exciting enough that she couldn't be there to deliver me when she passed.
Christmas was very sad since I was depressed about all of this and just waiting to deliver a still born baby.. I had people looking at me sadly which was the worst. I didn't want anyone to feel sorry for me..
New Years had rolled in and we were still going strong.. We decided another U/S needed to be done to see why she was still holding on.. We called both the Grandma's and asked them to come with us. We figured this would be the last time they would see her alive. We were 30 weeks along now. So we all squeezed into the U/S room. the ultrasound began... low and behold the tech got a look on her face of excitement... she proceeded to tell us that the fluid in her hygroma was less than last time... so what does this mean? Well she was getting better... We were all amazed and in shock! I can't remember the reason for our laughter but we all were laughing and Faith appeared to be laughing too! The U/S happen to be on 3-D.. it was so amazing!

There then was knock at the door... it was Dr. Pombar... he heard we were there and came to see us... It was an emotional day... Our baby was getting better but there was no guarantee that she was going to continue to get better. We then went into to meet with Dr. Pombar privately.... Again, now what? He told us we could proceed as we have been or we can prepare to bring this child into the world alive... So we started our weekly visits to Rush University in Chicago... 3 Times a week... Heart checks, U/S, Echo's... It was a lot of travel back and forth...
One particular day my mom and daughter were with me.. I went about my apt's like normal.. little did I know that I would not be leaving the hospital that day. I went in for our normal U/S to make sure there was enough fluid around the baby... well this day.. there was not. I tried to convince the doc's to let me go and come back.. they were firm that I was not leaving. I had driven in that day and my mom did not know her way home. My daughter was a tired baby girl whom had not had a nap.. We were stuck in an overflow room with no extra clothes or anything for me or my daughter.. We called my hubby who was over 2 hours away.. My brother got my hubby and headed down to us as soon as he could. My mom and brother went home to put my little girl to sleep.. I had no idea how long I was going to be there for. Everyday my hubby would go home to work then come back at night. My little girl stayed with Grandma, her second home anyways. We would have U/S daily and tried to convince them to let me go home.. no way they were letting me out of there. They said I may have to stay until she was born! UGH!! I was there over Valentines Day and was so so heartbroken. I missed my little girl so much. My parents brought her up to see me when they could. They could never stay long since she was so young and there was not much for her to do... That was the highlight of my day seeing my little girl... After a week of pumping me full of fluids and doing U/S.. they finally decided I could go home.. The best words I had heard until that point.. We rushed home and held my little girl so tight!
I made sure from that point on to drink lots of fluids. There was no way I was going to have another extended hospital stay.
A few more weeks had gone by. I came and went with my regular appointments. Heart Checks, Ultrasounds etc... March 2nd rolled around. My husband had decided on this particular day to come along with me to my appointment. We dropped my little girl off with Grandma and headed downtown. We had seen several different doctors in the practice. It was finally Dr. Pombar's turn again. We had our ultrasound with him as scheduled. Before the appointment was over, he said "Your baby has not grown any since the last U/S, it's time to deliver". Again in shock, we begged to go home and come back. They said NO, we were to report directly to Labor and Deliver. So once again we called my mom. Only this time we told her we WERE having a baby. She was not sure what to say I think.. She cried and was happy, but scared all at the same time. As was I. My mom wanted to be there so bad. Her daughter was about to have a life altering change and she was not going to be there for it. A mothers natural instinct is to protect their child. I was still her child even though I was married and had a child of my own. I needed to her to be with my little girl since I couldn't be and that's what she did. We headed to Labor and Delivery not know what awaited us......
Once checked into our room, my husband left to head home. He needed to get my back and our things we had prepared for this day, which included a very soft white blanket the grandma's had purchased. It was to be her burial blanket. We kept it with us just in case. (Morbid I suppose, but realistic to us. We had prepared ourselves for the worst.) This day had finally arrived. The day of unknown.. would our baby come out and be able to breath? would she cry? would she be put immediately on a ventilator? We were not sure what to expect. We had been told up until this point "if her heart can support her lungs"... IF?
We tried to keep the news of our hospital visit under wraps. We didn't want to hear congratulations or how are you feeling? We really just wanted to be in our privacy. It was hard for everyone to be in the dark, but even harder for us to have to update everyone on something we didn't know... So we asked those who had posted anything to remove it. That we would let them know when it was time. I wanted to be the first to let people know when something happened.
The first several hours were low key. Not much action. In the middle of the night the doctor came in and asked us if we wanted to stop the labor process and start again in the morning. The NICU staff wanted to wait until morning so they could rest.. WHAT!!! Are you nuts!!! Why would I want to stop labor once it had already began? The NICU staff is there to serve the patients.. or that's what I had thought. So we continued on. Contractions came and went. I breathed through them and went on about watching Greys Anatomy. Stupid series to begin watching while stuck in a teaching hospital.
It had been about 24 hrs.. having been through a few doctors and nurses.. I was ready. Well not really, but I was at the point where I wanted them to just cut me open and get her out. I was tired of being checked by every Tom, Dick and Harry in the hospital. I know they have to learn somewhere.. but not all 20 of them needed to check my cervix for crying out loud. (If you have ever had a baby with no pain meds, you know the feeling). We had finally asked if they could crank up the pitocin and get this show on the road. We were told we were at the max. I then asked if they could break my water.. since it was a teaching hospital, someone had to ask someone who had to maybe say yes... Well they came back in and said they could up my pitocin a bit more.. the contractions were coming on stronger now. I was still handling them, but was only at around 5cm.. REALLY? That was it?? So I gave in against my will to get an epidural. I asked for them not to send a student to do it.. but guess who did it? A student.. Grrr.. the first one made me all "Charlie Brown", wha wha wha... Round 2.. This time they got it.. Not yet feeling it.. time to check your cervix? UGH! OK.. Nope still not there.. They decided to break my water as I had asked before. They hoped the pressure would help open my cervix... yeah buddy did it ever! I started bleeding everywhere. My husband turned white and the staff got very scared looks on their faces. Not what I wanted to see, a hospital staff half scared out of their minds. They brought in an U/S machine and still had no idea where the bleeding was coming from.. Suddenly the room turned into a 3 ring circus! I had severe pain in my hip and the baby's hear rate dropped. The nurse quickly shifted me. I instantly started getting sick. Upon my vomiting our baby was coming out. They threw scrubs at my husband, I have never seen him change so fast in my life. They unlocked my bed and literally ran down the hall with me to the O.R., where a staff of what seemed like 50 people, we standing there ready to deliver my little girl. I pushed 2 times, heard a joke from my doctor and  then heard the most heaven sent sound. Our little baby, whom was not going to live and if she did would probably not breath on her own, was screaming her head off! Praise God!! I still choke up at the thought of that moment. I suppose I always will. They took her right away to make sure her lungs were clear. The child I never thought I would hold was being brought back to me for only a minute. I would gladly have take 30 seconds. Faith was here. She was taken to the NICU for further tests and Echo's. 3 long days would go by. On the 3rd day we would meet an amazing surgeon who would repair our little girls heart.
I will continue her journey in another post. Stay tuned...