Written in the Stars??

I am struggling a bit this month…I don’t know whether it is due to the fact that it is Pregnancy and Infant Loss Awareness month or that I am weaning myself off the 6 month course of AD’s that I took…or both! Either way I am feeling lower than I have for the last 8 months or so. I am definitely not going to go back onto AD’s, it has been such a hard process to wean off them, so I am going to have to deal with this head on.

Another date which is creeping up on us, is our 8th Wedding Anniversary, which is on the 15th October…always a joyous day of celebration, until this year. The 15th October also happens to be Remembrance day for Infant and Pregnancy loss. 

On the 15th October 2003, my Gorgeous Man and I got engaged on the top of Table Mountain in Cape Town. We did swift calculations and worked out that the 15th October 2005 was a Saturday, so we set the date right there and then. This leads me to think, once again, that all that happened to us was written in the stars. I don’t know if that depresses me more or not, I am a bit confused by it all at the moment.

I kinda hate that the day we once spent remembering our happy day fondly, by watching our wedding video and flipping through the albums and talking about things long forgotten, has now been tainted by the worst thing that could ever happen to a couple. Now, instead of going out for a celebratory supper, I feel that I need to be home to light a candle as per http://www.october15th.com

 

Don’t take my upset as an unwillingness to celebrate Eloise’s life. I love her with all my heart and thinking about her brings me joy and sadness equally but, her anniversary is also creeping up on us and that is the day I wish to choose to spend with her and all things that remind me of her. I think what I am saying is, that I don’t need to be forced to remember her, but at the same time, I want to support others who have gone through the same thing, so I am torn.

Apparently the statistic is that 1 in 4 women will experience the loss of a child through infant and pregnancy loss.

That statistic breaks my heart into tiny little pieces and so, it is for all of us who have been to hell and back, that I will put my big girl panties on and take a stand on the 15th October. I can celebrate my marriage every day through hugs and kisses and time spent with my Lovely Man.

This day is bigger than just us….

I AM 1 IN 4

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Bok x

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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.