The Confirmation of Trisomy 18
That same day in SCBU, we had a meeting with various medical staff. From memory, there were about six people present, including nurses and consultants.
I recollect the mood being very sombre, and before any of the team spoke, I think Glenn and I realized they had something very serious to tell us.
We were then told, very gently and sympathetically, by a consultant, that the test results confirmed the suspicions, and Keren did have Trisomy 18. The conversation following this is very much a blur, I just remember feeling very numb, and although we had just been given this news, God helped us to accept it, and calmly trust His way.
We were given some literature about Trisomy 18, which we put aside, to read later.
Life-limiting Condition
Trisomy 18 is a life-limiting condition, but aren’t all our lives limited? “For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away.” James 4:14
We knew that she was still in God’s hands, and as all our days are numbered, so were Keren’s, and only God knew how many she had left, with us.
Humanly speaking it was difficult not knowing how long we had with Keren, and when this troubled us, we were reminded to cast all our cares upon Him, for He careth for us.
Physically, I was still very weak, at this stage, and so I was wheeled back to the Maternity Ward for a rest, and Glenn continued to watch over wee Keren.
Previous…Keren’s Name
Next…Meeting their Little Sister for the First Time
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Walking at Murlough Bay
Here is a photo of all the enthusiastic walkers who turned out for our training walk on Saturday past. This is one of only three photos that were taken, due to the very wet conditions!
Seriously though, we did have a good walk, although the weather was quite bad, stormy and wet. We managed to find a sheltered place for lunch (Irwin’s instincts kicked in, and took us away off the direction we were going, and I wondered if there was any point in continuing…and then we found an amazing place, sheltered from the wind and rain!)
Next Saturday, God willing, we are going to the Mourne Mountains for our next walk. Irwin has said we will be summiting four peaks, so I can tell you more next week. Hopefully the weather will be a bit better, and I will be able to get a few more shots to post.
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The Name…Keren
It was on the second day in SCBU that we named Keren.
Choosing a name for your baby is (in my opinion) one of the first big decisions you have to make after the birth.
During the pregnancy we had plenty of ideas as to what we would call our third child, and we had narrowed down a few boy’s names that we liked, but up until the night before Keren was born, we hadn’t really any girl’s names chosen.
That Thursday night, Glenn and I were trying to think of some girls names when Glenn mentioned one of Job’s daughters, (Job being the pen-man of the book in the Bible, bearing his name) her name being Keren-happuch. He said we could call her just the first half…Keren! I immediately liked the sound of that, and thought it would be quite appropriate, if we had a girl, as Kezia, our two year old, was also named after one of Job’s daughters.
At this stage we had no idea that our third child would be born the very next day!
After her birth, and us receiving the news that our daughter was seriously ill, and with her transfer to Antrim Area Hospital, Glenn and I didn’t have the opportunity to discuss names any further that day.
Our minister called, along with another friend from church, later that evening after Glenn had left, and we were discussing names. Rev Park mentioned the name Keren, and to my memory, that was the only name he mentioned that night. Of course I had to say that that was the name we were seriously considering! Despite the circumstances, I felt really at peace when they left, and I was able to get a good nights sleep.
The following morning I was visited by two close friends, and received phone calls from family members, all of which I really appreciated.
I was due to travel to Antrim Hospital early that afternoon, so I waited as patiently as I could for the ambulance staff to arrive. I remember I didn’t feel too much pain when I was lying in the bed, but my first trip out of bed was very painful, (understatement!). A few steps, and I was breaking out in a sweat, and I just felt so weak. The journey in the ambulance was relatively smooth, but I was still glad when we got to Antrim. I was taken to the Maternity Ward, and when I was settled in, Glenn came, and wheeled me round to the Neo-Natal Unit, to see Keren.
One of the nurses in the unit asked us if we had decided on a name for our baby, as the birth card, which was taped to the incubator just said “Baby Owens”. We looked at each other, and just knew that we were going to name her Keren.
Previous…SCBU
Next…Diagnosis
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Trek Company Chosen!
My companions on the trek, Irwin Holmes, Stephen Fletcher, and James McConaghie, and myself, have decided on a company to guide us on Kilimanjaro (and help us with advice in the months preceding it).
We spent some time researching various companies offering guided treks on Kilimanjaro, and we liked what Adventure Alternative had to offer. After a meeting with the company Director, Gavin Bate, and his Expedition Coordinator, Chris Little, we were totally united in choosing them.
We have booked the date to commence, and God willing, the 1st November 2008 will be the day we will fly to Kilimanjaro Airport (pending getting flights, as they are not on sale yet!). The following day, the Sunday, will be a rest day, with the trek beginning on Monday morning!
From left we have… myself, Stephen, James, and Irwin.
P.S. There could be more names added to this list!
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Special Care Baby Unit in Antrim Area Hospital (SCBU)
I must admit, that this first night, when I left Geraldine, to drive the approximately 40 miles, to Antrim, to the Special Care Baby Unit, is a bit of a blur in my memory. I can remember just driving and driving…talking to family on the phone…I think I probably called in to our house, briefly, on the way past…but I can’t really remember. I know I was glad that Jed and Kezia were safely tucked up, and being looked after. They continued to be taken care of, by close family members, in our own house, which was brilliant for them…less disruption, and a bit of spoiling no doubt!
I can’t remember how I found the Neo-Natal Unit, in the hospital, but I certainly remember what it looked like, and what wee Keren looked like lying there. In an incubator, with a ventilator, and more sensors and monitors around her than I had ever seen. I will never forget the sound of the machines in there, constant beep beep going on, it was worrying, and yet comforting in a strange sort of way. I knew that she was in the best place for her, in her condition.
The nurses here were so nice too, and so patient when I buzzed them, if I thought Keren’s monitor made an unusual sound, as if I knew! I remember one nurse, who was so lovely, that first night, when Keren was so fragile, asking me if I wanted to have her baptized. I said no, but I didn’t get a chance to explain that she didn’t need baptized, because I knew that Keren was in God’s hands, and that she would be alright, that although God was a just God, and must punish sin, He is also a loving God who would not punish any infant before they reached the “age of understanding”. For a long time after this, I thought about that nurse, and I wished I could see her again, to explain, and thank her for her kindness that night, (maybe she will read this?)
I remember just looking at our beautiful wee baby, and taking photographs, never knowing if one of these photos would be the last one.
About one o’clock in the morning, in walked Mr Park, our minister, and I was so glad to see him. It was good to see a familiar face. He asked me if I knew what the situation was, with Keren, and I didn’t really. I was hearing terms that I had never heard before, and I suppose I was in shock, and not really taking things in so well. He asked me if anyone had used the term “Edwards Syndrome” and I said I thought someone had. I knew it was serious, but I also knew, that God was in control, and that “all things work together for good to them that love God, to them who are the called according to His purpose”. I also knew that I loved God, for what He had done in my life, and I knew that I was among “the called according to His purpose”, therefore all things would work together for good.
I don’t know what time Mr Park left, but I know it was late. The nurses eventually convinced me (or I was so tired, that I convinced them) that I should lie down somewhere, and they found me a sofa and a blanket. and I was soon asleep.
Previous…First Encounter
Next…Keren’s Name
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Our First Encounter with Trisomy 18
Although this probably isn’t going to be particularly easy for us, as my husband, Glenn, said before, we would like to share some experiences, thoughts and memories of wee Keren, with you, and where else to start, but at the beginning.
Throughout the pregnancy, I had many scans, as they suspected the baby was very small, and they wanted to check the baby’s rate of growth. The scans did not show that the baby I was carrying had Trisomy 18.
It was on April 7th, at one of these many scans, after having more measurements done , that the consultant decided that I should have labour induced. Karen, the midwife who was assigned to us that morning, was wonderful and really helped to put us at ease.
I was 38 weeks + 3 days. As induction involves continuous monitoring of the baby, it was obvious that the baby was not moving very much, and so I was rushed to theatre. Although I realized that a caesarean was major surgery, I was actually quite relieved to know that I would see our baby soon, and that this was God’s plan.
4lb 3oz
Keren was born weighing 4lb 3oz, and after doctors worked on her for some time, (I remember the theatre nurse reassuringly saying to us that they were just “pinking her up”), we got to see her.
We both immediately thought that Keren looked like her big sister, Kezia. Instead of getting to hold her though, we just got to touch her wee face briefly. The consultant paediatrician told us that our daughter was very ill, and she had to be taken away, for further care.
Glenn and I were quite numb with the shock of it all, but we also had a deep assurance that God was in control of the situation. The same God who had saved our souls 5 years previous, was still by our side and would never leave us nor forsake us.
After leaving recovery, I was taken to the ward, and Keren was brought in for a few minutes, so that we could see her before her transfer to the Special Care Baby Unit (SCBU) in Antrim Area Hospital.
As I had undergone surgery, I was unable to go with her, and had to wait until the following day to travel. Glenn stayed with me for a few hours, and then drove up to Antrim, that evening, to be with Keren.
The staff in the Maternity Ward, at the Causeway Hospital had been very thoughtful, and taken a couple of Polaroids of Keren, so I had those beside me. That evening a few family members, and close friends, one being our Pastor, visited, and their company was very much appreciated. I think it would have been a very long night without them.
Next…SCBU
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Planning Bed-Pushes!
I am planning a few fundraising “bed-pushes” in local towns, for the early part of next year. The applications must be made well in advance, to have a better chance of choosing the dates. These should be great fun, and the local people always shine with generosity, so these events should help greatly with reaching the target.
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Training Walk on Knocklayde, in the Antrim Hills
We enjoyed good walking conditions for our latest walk from Ballycastle, to the summit of Knocklayde, and back.
As you can see, we had a cheery bunch of walkers, and a good morning was had by all.
I balanced my camera on my rucksack, and set the self-timer, and ran !
Having a rest at the summit.
As you can see, the sky was overcast most of the morning, but it stayed dry and comfortable for walking.
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