December 09, 2012

Living in the moment - Santa Fun Run...

I participated in a 5k Santa Run today in Greenwich Park raising funds for Great Ormond Street Hospital where Ademide spent most of his time. Randomly ran into one of the audiologists that had seen Ademide :). Lots of fun with 22,000+ Santa's!

December 05, 2012

One year later....

"The paradox of modern medicine is that knowing doesn't always mean the outcome will be better. The ability to diagnose has absolutely raced ahead of the ability to care [and treat]" Source

A year ago today, I found out that my son had a right sided Congenital Diaphragmatic Hernia, R-CDH.

The day had started out great. It was my husband's first day at a great new job. We had gotten up bright and early. I made him breakfast and saw him off. Promising to call as soon as my ultrasound appointment was over. Although our local NHS PCT (primary care trust) does not disclose the sex of the baby, I fully intended to ask anyway. It was the most important thing - the irony !

I got to my appointment very late and even missed my slot but they managed to fit me in. I sat with other excited mom's and couples in the waiting room. If you wanted a picture, you needed exact change £2.50 or you could pay with a card. We all excitedly counted out our exact change and ogled at the couple who'd already had their scan and were staring loving at their pictures.

I wouldn't need my £2.50 then or ever. At every appointment, perhaps out of pity, I got tons of pictures. Even got the fancy 3D and 4D ones, and eventually got told that I was having a son - information that was no longer relevant. The new goal was healthy!

December 03, 2012

Living in the moment - Paris...

Thank you all for the kind comments on my "life among the living..." post. Here's an example of a great day my husband and I had in Paris 2 weeks ago. I'm very grateful for him and some amazing people God has placed in our lives.

I understand that God has a purpose for everything. However, it still hurts that my baby isn't here. I still have people who remember seeing me pregnant, come up to me and ask about my baby...

Living in the ICU for four months is an experience - we were surrounded by some of the sickest children in the UK and further (there were children from several EU countries, Canada and even the USA) at Great Ormond Street. It's easy to forget that millions more children are born healthy, and that you're surrounded with the select few. I'm adjusting to living in the moment...

December 01, 2012

Life among the living....

Some people just don't get it. Just let me be, there are good days and bad days. Today Ademide would have been 8 months. He's been gone 3 months and 23 days. When you bury a child, everything changes....

October 13, 2012

Play dates...

My friend had a baby three weeks ago, she had a perfect little boy. Another friend is due in December and is having a boy. We should be planning play dates and looking forward to our boys growing up and playing together. But my son isn't here #thatisall

September 03, 2012

What's on your whiteboard?

I read a metaphor by Elizabeth Edwards on another blog over the weekend. She likened life to a whiteboard on which to try to fit all the seemingly "important" things in life, constantly try to squeeze in more stuff. Then you experience the loss of a child and everything seems so trivial. Your whiteboard is again blank and this time, you're more careful with what you write on it. More thoughtful about what you fill your life with, whom you choose to allow in your life. You realize what the important things are, it's the "little" things that matter.
Seems cliche but spend more time saying "I love you", appreciate your loved ones, appreciate what you have because this life is fleeting. I'm so grateful and happy for the time I got to spend with Ademide. I wish we had more time together to experience more on this side but God has other plans. I will go to him but he won't come back to me.

As humans sometimes we see others go through tragic times and we say "I'll pray for you" with the sincerest of intentions but life gets in the way and in the midst of your prayers maybe the person gets a quick mention "God please comfort X" and you move on in your prayers. You thank God that you're not the one enduring the tragedy. Hey I've been there before. Then just like that it comes knocking at your door and your whole life changes.

I've had a lot of people say "oh you're so strong, I don't know how you keep it all together." I respond with thank God and I'm not being all Christianese. I really am so grateful to God, I'm actually much better than I thought I would be. Somehow I haven't lost my marbles and taken to running around London like a crazed person. It can only be God.

In Luke 22 : 31 - 32, the Bible talks about how the devil asked to sift Simon as wheat but Jesus said He had prayed for him that his faith would not fail so that he could strengthen his brethren. Perhaps, God has allowed me to experience this to be a blessing to others.

I guess when you experience tragedy and one as devastating as the death of a child it makes you realize what's important in life. It forces you to cling to God because nothing else makes sense.

I'm an uncommon woman and I've been called to walk an uncommon path. As I heard in Church once, there are places in God, you can't reach without enduring pain.

September 01, 2012

Awful but functioning...

For the four months and seven days that Ademide was here, my schedule and days were defined. I woke up, called to see how my son had been doing in the last 3 hrs since I called, I showered and went to his bedside. Then check his numbers, sats, FiO2, pressures, meds, nappies. Ward round, chat with docs about plans for the day. Pray for a quiet uneventful day, nappy change, pump, feeds, research medical jargon. Cuddles with my son. Bath time. Story/reading time. Physio. Ward round.

Now I have nothing to do. I wake up, shower, get dressed and sit at home. People keep asking "how are you?" "are you ok?" "are you bored?" how am I supposed to feel? My son died! He's not coming back. I'm ok, I'm functioning. Bored? "blank stare"

Miscarriages, infant loss (can't get over this term) my son isn't lost, he died. But I digress, neonatal death happens to a lot more people than you think. It's like a secret unspoken club, but once you qualify, suddenly the members open up and tell you about their loss. Sometimes others tell you about those that have had losses and then say but she has a little girl or boy now, so move on. It's only been 24 days, you just don't move on...

How do you answer the question "do you have children?" if you say yes, where is he? If you say no, it's like denying Ademide was here...

My personal favourite? Hurry up and have another child while you're still young... You'll feel better. Would it help? Maybe, at least maybe I wouldn't feel this horrible ache when I see mums with their babies or blissfully happy pregnant friends planning for their bundle of joy. But getting pregnant again comes with it's own stresses - the blissful ignorance is gone - ask any mom who's had a NICU baby, there are a million things that can go wrong and I am unfortunately aware of too many. Even a "textbook" pregnancy isn't all that, met a few moms in the cardiac ICU (CICU) at GOSH that had blissful pregnancies only to find their babies whisked away by ANTS (Acute Neonatal Transfer Service) hours after birth. Or even those that had blissful pregnancies, went home, had all the baby and toddler firsts only to take their 3 year old to the dr for flu like symptoms only to be blue lighted by CATS (Children's Acute Transfer Service) and to be told that your little perfect boy has cardiomyopathy and has 10 days to live...
The blissful ignorance is another DBM ( dead baby mom) put it you mentally consciously or unconsciously tag "if he / she lives" to thoughts about your children.

I cannot understand how people endure this without God, the only reason I still have hope and faith despite all these is because of Jesus. "In Christ alone my hope is found" that song just reminds me that no matter how bitter my situation is right now, there's hope and now I understand what the Bible means when it says we shouldn't mourn like those who don't have hope. Not that we shouldn't mourn at all, but even though weeping may endure, joy comes in the morning. I will have other children, I will be happy, I will be ok. But I will never forget Ademide.

August 25, 2012

I am the face....

This time last year, I was excited. I had just married a man that I love so much and we were going to have a baby! 
The biggest thing on my mind was if I would have a boy or a girl. On December 5, 2011, my life changed - my son was diagnosed with a right sided congenital diagphragmatic hernia. Three weeks later after seeing different specialists, I was told my son had a 10% chance of surviving if the only issue was the CDH, if anything else was found 0%.
My son was born premature on March 31, 2012 at 4.10am weighing 2.366kg.
He was eventually diagnosed with a Congenital Heart Defect, Tracheomalacia and Right Lung Hypoplasia amongst other issues.
He started off really well, then spent 10 days on ECMO life support, recovered, discussions about going home happened. Unfortunately, my son spent his 4 months and 7 days in the ICU.
My son died on August 7, 2012 at 6.05am. 
His name is Ademide 

The amniocentesis had come back normal, it was done twice at two independent locations. The genetics tests came back clear. Nothing I did caused it.

It was an unfortunate random event. 

I got a lifetime membership in a club that I never imagined I would join. 

I am forever changed...

The thought of my suffering and homelessness

is bitter beyond words. I will never forget this awful time,
as I grieve over my loss. Yet I still dare to hope
when I remember this: The faithful love of the LORD never ends!
His mercies never cease. Great is his faithfulness;
his mercies begin afresh each morning. I say to myself, “The LORD is my inheritance;
therefore, I will hope in him!” (Lamentations 3:19-24 NLT)