Eloise’s birth…written by her Daddy (Part 2)

Sister Bridgett talked to me all the way and telling me what a beautiful and special girl Eloise was. The memories we had, needed to be cherished and she said that we must spend time with her and take as many photos as possible. So many people spend the time with their child, but it is so short that the memories are just not enough. However painful, however stressful, however heartbreaking we must do this for her.  We would take photos and however painful it may be we must enjoy every single second with our girl.

We had decided that we wanted to see her now and in the morning, so we could say our final goodbyes, before she is taken by the funeral home. I lead Eloise into our room with sister Bridget pushing her. S was with the family and we asked them to leave briefly while we met Eloise together for the first time. S was still drowsy from the drugs but, the minute she caught my eye and knew that this was the time she was going to meet her daughter for the first time, her eyes lit up. It took my breath away and I wished so hard that it was under normal circumstances. She pushed her self up the bed which seeing how she moved afterwards, must have been so very painful, but there was no pain on her face. Sister Bridgett wheeled Eloise round to the side of the bed where S could see her and I could hold her.

Sister Bridgett then unwrapped Eloise and showed us our beautiful baby girl. S and I just squeezed each others hands tightly and had tears streaming down our faces. She was beautiful. She had S’s nose and shape of face, My black hair and chin. Sister Bridgett carefully unwrapped her and asked us if we would like to hold her. We both knew that we wanted to, but that it was going to be excruciatingly painful. As I was standing Sister Bridgett placed Eloise in my arms. She was so small and precious. I didn’t want to hold her wrong or hurt her in any way. I know from holding babies in the past, to support her head, it was so small that she fitted into the crook of my elbow.

It felt wonderful holding my baby girl but I so wished it was in normal circumstances. It felt like she was sleeping and I was so careful with her, as I didn’t want to wake her. That sounds absurd, but she had her eyes closed and was warm with her hands pulled up close to her neck. She looked peaceful. Her smell was wonderful. I couldn’t take my eyes off her and thoughts were rushing through my head. Tears were streaming and I was trying to take everything, that was happening to us, in. Why are we going through this? Why has this happened to our baby girl? How are we going to get through this? Are we going to get through this? Is this our only chance of parenthood?  I couldn’t stop the thoughts but I didn’t have the answers! I cherished every moment holding her and took her closer to S, so she could see her and touch her.

S had tears streaming down her face, but was also transfixed on Eloise. I asked her if she was ready to hold her baby girl. I could see that she was so nervous, but wanted to so much. I turned Eloise around very carefully and placed her in S’s arms and resting on her chest. She was so emotional and it hit me hard. This was the time that she was holding her baby for the first time, this was the time most parents cry with joy that their baby was finally here safe and well.

We are not normal parents and were meeting our baby girl in the worst circumstances, she should be with us, healthy and happy. We should be overwhelmed with joy and excited for our future, all 3 of us together.

We then just looked at each other and I put my arm around S and gave her a big squeeze and hug. We just looked at Eloise and took in what was happening to us. We then started looking at her in detail and saw her flat feet (from me) and black hair. Her tiny little hands and fingers, her cute button nose, her skinny ankles and calf’s. She would have had beautiful features and would have been a very pretty girl when she grew up. We both had tears in our eyes and I could see S was trying to take as much in as possible. We knew we only had a short time with her before she went and we wanted to see her again in the morning.

Her smell was infectious and S and I just took it in. I will remember it forever, we both will. We started to unwrap her from her receiving blanket. She was a pinky colour and still warm to touch. We looked at her in detail to try to understand and see if there was anything else that we could see that was associated to her translocated chromosomes. Her ears were very low set and her head already very large from her hydrocephalus but, otherwise, she was perfect. Every elbow, knee, ankle and wrist were all perfect. This was very hard as we were desperately looking for an answer to why this happened and if she would have had a slightly normal life. The low set ears meant she would have been severely mentally challenged and with her hydrocephalus, she wouldn’t have had any quality of life. Then and there we knew beyond doubt, that we had done the right thing.

We then swaddled her back up in her receiving blanket so she would continue to be warm and so the blanket would be covered in her wonderful smell. We also decided that if the family wanted to come and see her then they could. S and I were holding up for Eloise and wanted to take in every moment we had with her. I wanted to just break down and cry but she gave me the strength to carry on. I could feel it in my heart that she was giving me the strength to support her Mommy. If I had broken down then I know S would have too, I had to hold strong for them both. Our time was limited with her and we needed to remember very minute, every memory. We took some photos of her and then I invited the family in to meet their granddaughter and niece.

They were waiting outside the room, I left Eloise in S’s arms and then went and got them. When they came in S was sat up in her bed, holding her baby. This is normally the time when there are big smiles and joyous celebrations. The atmosphere was not like that. I could see how proud S was that this was her baby and she wanted so bad for it all to be normal. Her mum and sister came around the bed to her and lots of tears were shed. I don’t know what they were expecting but it was extremely hard to take for all and lots of tears were shed. Her mum gave her a big kiss and S introduced her granddaughter to her.

They couldn’t believe how small but perfect that she was. She looked like she was sleeping with her eyes sealed shut. It was difficult to put words together and it was small observations from everyone on what she was like. I was proud she was ours. She had so much spirit when she was in S’s tummy. When I read her Winnie the Pooh, she would move and kick, to show how much she enjoyed it. When she was in the bath and we were splashing her, she gave us kicks to say she was playing. When I talked to her she recognised my voice. She had a character and she proved she was stubborn too.

If only she was here and we could all see that Character grow up, it would have been beautiful. She would never have been messed with at school, she would have been the leader of all her friends and would have been the bossy one. These thoughts kept running through my mind and I so wanted things to be different. Whether it was the shock of the scenario we were going through, the hopes and dreams we have for our children, being shattered, I don’t know. It was just a time that I couldn’t change and thoughts that I couldn’t stop.

We showed the family all of our observations of her, and they could see all the likenesses of us in her. We could see it was a very hard time for them all and I thank them for being there. It must have been very difficult but they all wanted to meet her and support us through this unbelievably hard time. We took some more photos and I could see that S was getting very tired. I think the major surgery, the emotional pain and physical pain were all taking their toll on my beautiful wife. I could see that the sister thought so too. We had had over 30 mins with our daughter and decided to put her to bed with her teddy.

Like any new parent we didn’t want her to be alone and had brought her a teddy from home, to sleep with over night and to go with her to the funeral home and then to be cremated with her. She was swaddled with her teddy and they were face to face for the night. We had slept with the teddy for a few nights prior to her birth, so we knew that our smell was on the teddy and we wanted her to feel comfort in that. We would be with her tonight and always, wherever she may be. We wanted her to be comforted, knowing that she was loved so much and that her mummy and daddy would always be with her in spirit.

She gave us so much in such a short space of time. She made us parents, and now we were parents of an Angel. She was the most special girl and we will never ever forget her. We wanted her to be comfortable like any new parents and wanted her to have a good nights sleep. That sounds absurd i know, but we wanted to know that she was safe and making her way to heaven. We wanted her to know we loved her and that we were still keeping her safe.

Sister Bridgett helped us swaddle her with her teddy and then took some photos of her for us. She was amazing in the way she took gentle care with her and was so respectful of all our wishes. I can’t believe how hard it must be for all the staff, as they come to work to see new life and babies being born. Seeing happy overjoyed parents, helping new parents with their babies and teaching them what to do before they go home with their bundles of joy. You always think of the positive side of being a labour nurse or sister. She was now going to go home having been with us and seeing our grief. It must be very hard on them, especially to them come back again the next morning to the labour ward and normality!

S and I told Sister Bridgett that we wanted to see her in the morning again, when we had both had time to reflect and to prepare her to go to the funeral home. We wanted more time with her for photo’s, to say our goodbyes as a family of 3 that we now were, all the while knowing how hard it would be never to hold her and touch her again after that. We wanted as many memories as possible, her smell, pictures, her blanket (we had another to wrap her in to keep her warm and send her off with) her hand and footprints. We also wanted to try to come to terms with what had happened and to give her a fitting goodbye from both her mommy and daddy. We gave her kisses goodnight and told her we would see her tomorrow and to sleep well.

It was so hard giving her back to Sister Brigett, I just wanted to hold her all night long and tell her how much we loved her. I wanted to be the same as normal fathers, going to change her nappy and feed her in the middle of the night. I knew I couldn’t and wouldn’t but I still had this overwhelming feeling that I wish I could. I handed her to Sister Bridgett who put her back into the basket. We both gave her a final kiss and she took her out of the room and to bed. I looked at S and we both just broke down in tears, I flung my arms around her and we just hugged. I kissed her and told her how much I loved her and that we would see our beautiful girl again tomorrow.

S was being so brave and I was so proud, I loved her so so much and she was now the mother of my child. This experience could break some people and marriages but I just knew that we were in it together and our love for each other was so strong that we would get through it and be even stronger. I could feel Eloise telling me to be there for her Mommy and to do everything and anything she wanted. She gave me the strength and stamina. I could see S was in a lot of pain and she needed to rest.

Dr Baker came around to see how she was doing. He asked the family to leave the room. He was so good and so empathetic, he was in this with us all the way and you could tell he would be after as well. He told us that she didn’t suffer and that was the most important thing. He looked after S and had arranged the room in the surgical ward to make things as comfortable as possible. S took great comfort in his words and she was very emotional. He then left us and the family talked to him outside privately. I think they were also looking for answers and reassurance, which I can understand.

S and I then were on our own and we realised we had a long night ahead.  The family popped back in to say their goodbyes before heading home. They gave us their love and were going to look after the dogs for us. I was going to stay the night with S and do anything that she needed of me. We were in this together and anything that I could do, I would do. We chatted and talked for another 20-30mins. We tried to reflect on everything as much as we could. S needed the pain relief and I could see it was making her very tired and sleepy. She was fighting it as she just wanted to talk about our Eloise and make sure she was safe and didn’t suffer. I gave her the reassurance she needed and then let her fall asleep. My beautiful wife needed to get better her self after major surgery. I needed her and Eloise needed her.

Again I could feel Eloise with us. It wasn’t just us in the room and I could still smell her. It was a surreal feeling and it was as if she was also watching us and listening to us. She was sending us her love, she knew that we needed it. Our pain was great but our love for her was greater. S fell asleep and I kissed her goodnight, told her I was there whatever she needed. She gave me a nod and squeezed my hand with her eyes closed. She blew me a kiss and went to sleep. I was now on my own, I felt that I needed to put my memories to paper and so here we are. I sat writing for about 2hours, remembering every little thing I could. I knew S wouldn’t remember it all, so this is as much for her, so she can understand what happened.

Nurses came in and out every 30 mins or so to check S’s vitals and make sure she was ok and comfortable. They brought me a chair to sleep on. I just kept writing and putting down all my thoughts and feelings. I have never written before like this and it is just an overwhelming feeling putting your thoughts and emotions down. Lots of tears were shed while writing and thankfully ipads are wipe clean!

I kept talking to Eloise which I am sure sounds mad. I felt she was there, so I kept reassuring her and thanking her for everything that she gave us. I was and will always be her daddy. I want to make her proud, whether she was here, or looking from above. I felt she needed it and I needed to communicate with her. I had a bond and wanted to keep it going. I felt like she was and always would be looking over us. She was small and only a baby, yet I felt like she now had this overwhelming power and that she can look after us both. She is our Angel, our special amazing girl. We wished she could be with us but understand she was needed elsewhere. She had such a short time with us, yet I feel like I have known her forever. She will always be with us whatever and wherever we go.

As I complete this on her due date of 12th March, I can tell you that she gave us so many memories and continues to give us so very much. I know she will always be with us and when we need to see a sign, if we are having a tough day, she is alway there with something to give us reassurance. Some of the things she has done, are amazing and continue to amaze me. We have one extremely special girl and I am so proud to say that she is mine. I miss you with all my heart Eloise and so wish you could be with us. I know you are with us in spirit my girl and take great reassurance from that. I now know and understand the greater influence that you have and I see the plan. It was so tough letting you go and I tried everything and spoke to everyone that I could for you, but I know you know that and, you have shown us beyond doubt that both you and God forgive us our decision.

You are one in a million and I cannot wait to meet you one day. You have made me such a great person and I am so so proud of everything you do. I hope I will make you proud to be my daughter, I am sure you are impacting on thousands of lives as an Angel. You have impacted so much on your Mommy and Daddy, words cannot even express how much. We will always be there for you. We would love to have you come back to us if it ever possible, otherwise we know you are waiting for us and that we will all be together one day.

We love you always and forever and will always send you our love and thoughts. I hope you know how much you are missed and loved.

Love you forever My Angel Eloise,

x x x x x x

Eloise’s birth… written by her Daddy (Part 1)

We said goodbye to Eloise in our hospital room on our own and told her how much we loved her and what she meant to us. We wished her a safe journey to heaven and told her to come back to us when she is ready. Played her rockabye lullaby’s and read her some more Winnie the pooh. We also told her we would finish the story over the next few days and she must listen to it from heaven.

Everything she gave us was special, her kicks, her heartbeat, her story time that she enjoyed, her mummy and daddy cuddles, her naughtiness and moving away from the heartbeat monitor. Her first and last bath with us and being splashed and kicking in retaliation. Her waving to us on every scan and listening to us and our decision. She shared dancing in the rain with mummy, swimming with us and the pups, her gorgeous reveal party which was her very special day, when she amazed us with the news that she wasn’t a boy. She even gave us a wave on her MRI.

S went up to theater and we said our final goodbye’s. The aneathetist was wonderful and we could see it was going to be emotional for them as well as us. I gave him our camera and asked him to take a picture of her at birth and also afterwards. I could see the tear and hurt in his eye but he said yes and gave me a reassuring look that she would die peacefully and respectfully. She was our baby girl and he understood that we wanted the memories.

S was wheeled off into the theater with her heartbreaking and tears streaming down her face. The pain in my heart, that I would never see my baby girl in her bump and never feel her kick again, was excruciating.

I had to wait outside the theater for several minutes to see if I could see her and give her a reassuring look and blow her a kiss when the doors kept opening. I couldn’t as she was out of my sight. The thoughts of running in through those doors to see and feel my baby girl once again were there. To stop it all and to take them both home. My heart told me to let her go and to release her from her future pain. I knew we were doing the best for Eloise and she would understand that the body she had, would not be good enough for her soul to flourish.

I went to sit with S’s family. All I could do was to focus on those theater doors. Every time they opened I hoped for a final glimpse of S with our daughter in her tummy. The minutes started to tick by and I kept a watch on the clock as I knew that the procedure was about 30-40 mins and Eloise would be born about 20 mins in to the procedure. It was agony.

I had to take a walk away on my own and to try to control my emotions, for S and Eloise. I wanted to be strong and a fighter, a warrior like my daughter. If she has taught me anything it is to have strength for her. She never gave up on us after that 7 week scan when our hearts broke the first time. I wanted to say my goodbyes as a proper father and being strong for her and showing her I am the best daddy she could have chosen was my way of doing that. My heart will bleed and break but she will always be in my thoughts and in my heart. I believed in her and fought through that weekend. She defied the doctors to give us these experiences and I thank her wholeheartedly for that. Dr V’s e-mail of “slim to no chance” of surviving that weekend will always be in my thoughts yet she gave us the next 17 weeks to experience what she would and what she does mean to us. We will never forget you Eloise.

I found myself what I thought was a quiet corner. When I looked up I found that I was stood outside the NICU ward entrance! Irony is hideous sometimes. This is the place we should be. This is where Eloise should be going after having her shunt done. This is the place we should be living at in 10 weeks time. The beautiful pink entrance with all the kiddies photo’s was so different to the rest of the normal clinical walled and carpeted hospital. The stats on the wall of 90% chance of survival after a 28 week birth. This should be us. Eloise should be going there. I began to start hoping and dreaming that Dr Baker would take her out of S’s tummy and bring her straight here. He would see a glimmer of hope and she would be rushed past me. My daughter was a survivor and defied doctor’s before. She could do it again, even the world’s best. I then realised I was expecting too much and reality gave me another kick. My heart was so sore and had to leave this corner.

I returned to the family and it seemed that the clock had stopped and the minutes felt like hours. As I was returning Father Michael arrived and I welcomed and thanked him for coming at this time. Anything we could do to make Eloise’s trip to heaven easier for her, where she could be our little Angel looking over us and waiting for us. I updated father Michael and asked him what he would like to do. He said he would Christen her immediately and would do a blessing later.  We then sat down and waited… I looked at my watch again and then spoke to my Eloise. I told her I loved her, told her I would miss her so much and she would always be so special to S and I and that we would cherish the time we had with her forever. She was our little miracle, even if it wasn’t for long enough.

Father Michael left us and went to see another patient for a short time. A few minutes later I heard a baby crying. I hoped it was my Eloise and Dr Baker would come rushing past. I then thought I hoped it wasn’t because it would mean she is suffering. I rushed to the theater door as if I wanted to reassure her that daddy was here and he loved her very much and that, although she wants to fight, she must make her way to heaven for us.  I then realised it was a mother who had just given birth to her baby and the father was just meeting his baby for the first time. Another cruel blow for us but a wondrous moment for someone else. I returned to my seat and the family were taken out of theater and to recovery.

Shortly after that, a father then wheeled his baby back past from the Labour ward back to the NICU ward. I so wished that this would have been me in a few weeks. Lots of parents wish for a healthy baby. We knew Eloise was special and that this was never going to be easy and we could be potentially living at he NICU ward with her after she had had her shunt put in for her Hydrocephalus. We would have been hoping and praying for her every day but, we would have taken the chance.

A minute later I had the most surreal feeling. I knew at that moment that my baby girl had just left us. All the pain and hurt that was in my heart at that time left and I felt a release. I felt at peace that she was released. I felt she understood why we made the decision that we did and she agreed we were doing the right thing for her. This was her sign to me as her daddy, that she loved me and that we would get through this. This was her sign of taking the pain away and with her to heaven. It was the most wonderful feeling that I had a connection with my daughter. I felt great strength that I could do anything and that she gave me the strength to support S and the rest of the family. To be strong like her, to never give up, to get through the next few hours, days weeks without her. To be able to see her even though it would be hugely painful but to enjoy her while we could.

My feelings immediately changed to worrying about S. It was as if Eloise told me that she was ok but to now think of her mummy. That her mummy now needed me. My eyes were glued to the theater ward just waiting for a glimpse of S being ok.

A couple of minutes later and I could see a Sister walking towards me in her scrubs. As she came towards me I got up and went to her. She told me that she was going to clean Eloise and bring her past us. This was so nice as I knew Eloise was being cared for and looked after in the way that she deserved. The sister was so respectful and it gave me the feeling that Eloise was safe. I prepared Father Michael so that we were ready to Baptise her. I prepared myself and stood close to the doors, as I wanted to walk her to her Baptism and be close to her, to keep her safe. The theater doors opened and I could see the Sister walking with Eloise, in a small basket, towards me. Dr Baker was walking next to her and I could see from a distance that he was red in the face and in tears. The emotion got to me and I could feel tears streaming down my face. As they got closer Dr Baker came over and gave me a huge hug and said “I am sorry chap”. I thanked him for being so caring and looking after Eloise, the best that he could.

We walked to the Labour ward and in to a private room which the sister had pre-prepared. Father Michael, Dr Baker, the Sister and myself were all present for Eloise’s Baptism. The Sister and Dr Baker both said that she didn’t suffer and that they were sorry for our loss. We were ready to Baptise Eloise.

Sister Betts handed me some tissues. Dr Baker then started to roll back the Towel which was covering my baby girl and keeping her warm. Her teddy was with her and keeping her safe. The first time you see your child is always a special moment and even though it was in these circumstances, to me, she was still the most beautiful daughter ever. She had my black hair, which got me straight away. I stayed strong for her somehow and focused on her gorgeous little face. She had such a cute face with S’s nose. Father Michael started the Baptism and I just listened and couldn’t take my eyes off my little Angel. He blessed her with the Holy Water and then we prayed for her. It wasn’t until after we finished the prayers, that I could feel the tears running down my cheeks. I promised Eloise I would be strong and I was, for her. Dr Baker and Sister Betts then left the room after again giving their condolences. Father Michael then told me that we, as a family, would always have our Eloise looking over us and that we would stay strong and we would always be her parents. He offered his condolences and told me that he would be there for us, in anyway that he could, over the following weeks.

I bent forward and, for the first time, gave my daughter a kiss. It was beautiful. She was warm, and felt like she was sleeping. Her smell will stay with me forever and was amazing. To this minute that I am writing this I can still smell her. I told her I loved her and that she was on her way to heaven. I asked her to make sure that her mummy would be ok, so that I could look after her, for her. I then stroked her beautiful cheek and head and promised her that I would never forget her and that she would always be in my heart.

I then made sure that she was comfortable, with her teddy bear and covered her back over with the towel to keep warm. Like many fathers, this was my biggest concern, that she would get cold. Unfortunately my daughter would, but it was still my gut instinct straight away. I left her in the room and said that I would see her soon and introduce her to her mommy. Sister Betts was waiting outside and told me that she would take care of her, until we were ready to see her downstairs in our room.

I left the Labour ward, with a mother being wheeled in the entrance, with her baby who was only a few days old, again agony at this time. It was nobody’s fault, just fate has a way of kicking you in the teeth over and over again. I returned to where the family were, Father Michael was telling them that we had Baptised her and that she was now at peace. They were in tears and their hearts were breaking, they all gave me a look that we had done the right thing for her. They asked what she looked like and the immediate thing that came into my head, was her black hair.

I had to walk away before I broke down and my thoughts were for my gorgeous wife. I wanted to make sure she was okay. Dr Baker had said that she was ok and coming around, when we walked to Eloise’s Baptism. I walked to the theater just as the doors opened and I could see S’s hair. I rushed to the doors but didn’t know whether I was allowed in. I put my foot in the door when the doors started to close, the nurses looked up and saw me. I called out to S and she looked up and they allowed me in. I went in and gave my wife the kiss and cuddle that I needed to give her. To reassure her that her daughter was gorgeous, just like her. To try to ease her pain and tell her that she was Baptised and on her way to heaven. We just hugged so tightly for our baby girl and told each other that we loved her so much.

They were checking S’s chart and ready to release her back to the ward. We rolled her out and took her back down to the room via every wall, chair and lift they could bump her into! I could see the pain on her face, with every bump, but she was so brave and we finished up in our room. Father Michael came in and spoke to S to tell her that Eloise was Baptised and to give her some beautiful, reassuring words. He then said a prayer and a blessing. S’s family then came in when she was ready and many tears were shed. S and I both wanted to see Eloise together and we wanted to make sure that S was awake and feeling ok, after the trauma she had been through with the surgery and anaesthetic. Within 10-15 mins,we felt the time was right.

We could have called for Eloise to be brought down from her sleeping room, but I wanted to fetch her and guide her to her mummy. Sister Bridgett, who was now on shift in the Labour ward greeted me and I explained that I was Eloise’s father and had come to bring her to our room. She was very compassionate and extremely respectful with our beautiful girl. She asked me if I wanted to take her or if she could bring her for us. I asked if she could come as I felt it would be too much wheeling my baby through the ward, into the lift and downstairs. I would be taking the same route as the father earlier, who also brought his baby from that ward. He turned right to NICU. I would turn left into the lift and downstairs to a broken hearted family and a grieving mother.

(Part 2 will follow in a few days)

Dear Eloise…

My darling girl, Mommy and Daddy are having a really tough time at the moment and Mommy feels that she needs to talk it through with you, so you understand what we are feeling and it may help to explain any decisions that we make in the next few days.

At 8am on Thursday 15th November, we got the call that no expectant parents should ever get. The Fetal Medicine Specialist, Dr Farrell, phoned to tell us that you have a chromosomal abnormality and she would recommend that we terminate the pregnancy… terminate you. 😥

She explained that you have a translocation of 3 chromosomes (we have since found out it is no’s 2, 7 & 20), which means something along the lines that some of chromosome 2 is on chromosome 7 and 20 and vice versa. Now, translocations aren’t necessarily a bad thing, when they are balanced, as you still carry the same amount of gene matter, just in a different configuration, if that makes sense my baby girl? But, balanced translocations are normally passed on from one parent to the child and tend to happen between 2 chromosomes… not 3.

Mommy put the phone down to Dr Farrell saying that we will speak to Dr Baker, Mommies OBGYN (mostly to swear at him, as he had told Mommy and Daddy that the likelihood of there being chromosomal issues were slim to none, once the initial results for Trisomy’s 13, 15 & 18 and Downs Syndrome had come back clear). Luckily Daddy hadn’t left for work yet and so we both cuddled you and cried a bucketful of tears.

In the midst of our tears, we decided that we needed to meet with the Geneticist who processed Mommies amnio results and who is the one who really knows what she is talking about when it comes to chromosomes. We made an appointment to see her at 11:30am that day, followed by a trip to Dr Baker at 1pm.

Dr Rosendorff explained that neither me, nor your Daddy are carriers of translocated chromosomes and your configuration (ie: 2, 7 & 20) is extremely rare, meaning that, with us not being carriers, the odds of you getting it and in this configuration are  approx 1: 1million. Can you believe that Eloise?? The chances of hydrocephalus are 1:1000 and Mommy and Daddy couldn’t believe their luck when you appeared to have it and now… 1: 1million?? This just cannot be happening to us and to you, our precious miracle!! She also explained that, without the presence of the hydro, the chances of you having severe birth defects are 50/50 (taken from studies done on people/kids with translocations) BUT, with the addition of hydro and the obvious neurological effects that has, your chances jump to 70/80%….

Well, she may as well have shot Mommy and Daddy in the heart right there and then, as you could literally see our hearts breaking into a thousand different pieces when we heard those words. Dr Rosendorff went on to say that she didn’t recommend that we carry on with the MRI we had booked for 24 weeks, to check on your brain and to see if the hydro was affecting your brain matter development, as now the problem is that much deeper…it’s chromosomal.

The appointment with Dr Baker went along the lines of, given all the facts, he recommended a termination too and referred us to a Clinical Psychologist who also reiterated what a 3 way translocation which, although may appear balanced, with the chances of breaks in genes in all those changes, there is no way telling what could be impaired, obv given the hydro, it looks as if at least part of it is neurological.

Between appointments we managed to fit in a 3D scan so we could get a good look at you, you are so beautiful! You were lying with your legs up by your face and you were kicking away…you did make it a bit difficult for the lady doing the scan to get a good pic, but she did in the end and printed off more than 40 for us. We will treasure that half an hour of watching you move and play, for the rest of our lives.

Mommy and Daddy were finished by the time we got home that night and we also had to stop off on the way to tell your Grandparents, as they were going away on Friday… breaking their hearts too.

What followed was a sleepless night of disbelief and tears and cuddling you and telling you how much we love you and want you and need you in our lives. You were kicking up a storm (whilst we are on the subject of you kicking, I want to thank you from the bottom of my heart for your kicks that Mommy first started feeling the afternoon of the amnio, I was so worried that the amnio had hurt you in some way and, feeling those first kicks, were your way of reassuring me that you were fine. I have treasured every movement since then and your Daddy couldn’t wait to be able to feel them… when he did manage to, 2 weeks later, on Mommies birthday 🙂 you should have seen the wonder on his face, he has never looked prouder. Ironically, Mommy has mentioned in a previous post that she didn’t think that she would ever relax during this pregnancy, for worrying about you but, once I felt you kick, I know that, in a different situation, all worry would have flown right out the window and my enjoyment of you would have begun in earnest).

We have since spent the last 3 days, just the 3 of us, taking you swimming, playing you music and reading you stories and, inbetween, talking till our hearts could start to understand what the doctors were really expecting us to do. As I write this, with tears rolling down my face, you are listening to Rockabye Baby, rock songs made into lullaby’s, Daddy was so proud when he found them, he got 1 CD of Mommies favourite band, Bon Jovi (I know, I am an embarrassment!) and 1 CD of his favourite…Coldplay. He was so looking forward to rocking you to sleep whilst they played.

In this time that we have spent as our family of 3, Daddy and I have decided 2 things, we are not going to give up on you and we are going to find out as much about your ‘condition ‘ as we possibly can. Starting with going ahead with the MRI tomorrow. Don’t get me wrong, Mommy is terrified about going into that clunking machine but, if it helps us see what is happening in your brain and whether the doctor’s diagnoses is fair or not, then I will do it for you, my darling Eloise. We are also trying to get to see the professor at Wits University’s Human Genetics Department for a 2nd opinion on the translocation and, depending on the results of tomorrow’s MRI, we may send your cells off to America to have what is called a Micro Array test (not carried out in SA yet), to try and see if there are any deletions of any genetic materials where your chromosomes have translocated.

So you see my Precious Baby Girl, we are not just giving up on you, we will not be pushed by the docs because of what they think is best, Mommy and Daddy are the only 2 people in this whole world who can decide what is best for you and, whilst we do not want you to have a life where you suffer any sort of pain, we will only make a decision when we have all the facts that we can possibly get, when WE know the answer, when God shows us the way.

All my love, forever and ever,

Mommy xxxxxxxxxxxxxxxxxxxxxxxxxx <3<3<3 xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

The day our world came crashing down… again

The week leading up to our 20 week scan was a terrifying one for me, for reasons I can’t quite put my finger on. I was so worried about the upcoming scan with our gynae and then the full fetal assessment scan (FAS) at the fetal assessment centre (FAC)  following on 6 days later. I have been worried about all our scans since that scan at 7 weeks, but nothing like this…for the week leading up to it I had this feeling of dread in the pit of my stomach, I didn’t sleep well and I was snappy with my wonderful and patient hubby…but he understood, because he was feeling it too. This was when the serious stuff starts, when they fully monitor the heart, the brain and all the organs to check if they were functioning properly, so this was the most important test our baby girl had faced yet…even more important that the 12 week downs and nuchal fold check.

So, the 23rd October found us in our obgyn’s waiting room and he was running an hour and a half behind… yet more time for my mind to torture itself on what could be found. We went into our appointment and started the scan after the usual questions on bleeding (no), movement (not yet 😦 ) etc. The minute he put the scanner on my belly, yup came baby girl’s head and the measuring began. For the next 10 mins or so, we got to watch our beautiful girl bounce around while doc took measurements and then he moved back to the brain and said the words that stopped our hearts once again…”here’s something that I am not happy with”.

He went on to show us that baby girl’s ventricles were enlarged and then my mind shut down and I can’t remember much else of what he said…all I could think is “why is this happening to us again? Haven’t we been through enough to a) get pregnant and b) to 20 weeks???” He decided to pull our FAS forward to the next day, as the doc there is a fetal medicine specialist and would be more qualified to advise what’s what. Now, the FAC is a very busy place but, when doc made the phone call, he mentioned what he had seen and that we were an IVF pregnancy (as if that makes us that little more special and important, which was nice of him) and they squeezed us in.

So, we left his offices in tears of disbelief and shock and worry for our beautiful girl and we had to drive home in different cars…in rush hour traffic, which made a 15 min journey 1,5 hours. I used the time stopping and starting to bawl, bellow, scream and get out as much of the emotions that I was feeling, as I could. Plus, I began googling to find out what I could. By the time we got home, hubby and I were emotionally finished and just sat on the sofa holding each other, heads filled with lots of different outcomes and possibilities thank to flipping Dr Google (darn those smart phones!!). We hardly got any sleep that night but we were armed with some questions for the doctor and knew more about ventricles in the brain than we had done 10 hours previously.

We were emotional wreck’s as we sat in the waiting room, knowing that this was pretty much it…when we find out what our baby girl is facing in terms of potential disability and brain damage. As soon as we were called through, I burst into tears, the emotion just getting the better of me. I composed myself and we started the scan. Doc measured everything, including the ventricles, which were presenting at 14.7mm…the limit for normal for girls is 10mm, so hers were 50% bigger than they should of been. She wasn’t too worried about it (having seen many cases like this in her career I guess), but that measurement freaked hubby and I out big time, as we were hoping for under 12mm. She suggested that we had an amniocentesis there and then to rule out chromosomal issues that may cause it, especially that, during our 12 week scan our bloods showed a 1:152 chance of Trisomy 18. We agreed, knowing the risks involved, but also knowing that she did these on a nearly daily basis and so she is proficient and we trust her ability. I am not going to lie, it did hurt, but it was bearable. She offered us the option of getting interim results within 5 days (which we had to pay R2k for), or just to wait 3 weeks for the full results (that the medical aid paid for). Of course we opted for having interim results before the full ones, how could we possibly be kept waiting for 3 more weeks?? She then said that, without any chromosomal abnormalities and, taking into account that everything else was forming perfectly ie brain stem, heart, liver, spleen, body parts (it was the most amazing experience watching how proud hubby was of our precious one, every time doc declared something as “perfect” during the scan, he had tears in his eyes and his face was filled with such love, it was heartbreaking and beautiful, all at the same time), she thinks it could be a blockage causing the cerebral spinal fluid not to drain into the spine, from the brain as it should. This would mean a shunt being inserted into our baby girls head the day after she is born, to drain the fluid away 😦 Her head was currently measuring a week ahead of her body, but that in itself wasn’t a concern, as some babies do just have big heads.

So, we left and the waiting resumed…

As much as I know God has a plan for all of us, I just can’t help dwelling on the unfairness of the situation…how can some people have perfectly healthy babies that they don’t even want?? How can some grow 2 or even 3 perfect babies in their bellies and I can’t even grow 1?? And, the most important question of the lot…why us?? Haven’t we now been through enough?? Am I not a good person? Do I not help others when I can, give willingly to charity, live a good and God loving life? Have I not behaved myself impeccably during this pregnancy? Instantly giving up the wine I enjoyed a glass of every day, eating healthily, not smoking, taking all my vitamins…why can some people drink and smoke their way through 9 months and give birth to a healthy baby at the end of it?????

I just can’t get my head around the unfairness of it all…but I guess I will have to, or it will drive me mad 😦

Interim results: no signs of down syndrome nor any of the trisomy’s, we can start to breathe a bit easier again and now we wait for the full results.