We're back home

Clare was discharged from the hospital yesterday and we're back home. Now that I have a few minutes breathing time, I thought I'd post some more details about the last few days. I know many people who read this blog have been greatly saddened by what has happened. My main motivation for this post is not to make you all more sad by explaining the details, but to let you know some of the positive aspects. Although the outcome for all of us has been devastating, it was the best for Theodore.

Clare's waters were broken on Tuesday night and she was put immediately onto a drip to start her contractions. At about 10pm, these were getting strong so she opted for a epidural to ease the pain. By about 3am, she was not progressing as fast as the doctors hoped, so they decided that she should have a C-section.

Once they got Theodore out, it was clear that they were having difficulties with his breathing. They tried to get a ventilating tube into him for the entire time Clare was being sewn up. Eventually, Theodore went up to the Special Care Baby Unit and Clare went into recovery. From there we went back to the ward to await news.

Eventually, the chief-paediatrician came to see us and explained that, although Theodore could breathe by himself, he didn't think he would be able to keep it up for long and they were still unable to ventilate him. After more waiting, we were allowed up to the unit to see him as the doctors continued to work on him. They told us again that they were not hopeful that they would succeed. It was clear to both of us how very poorly Theo was and, although partly we wanted them to get the tube in, a bigger part of us already realised that if they did, he would have a very poor quality of life and that we did not want him to suffer unnecessarily.

Eventually, we told them that it would be fine if they stopped. Theo spent his last few minutes with us, free from the drips and machines, in a quiet room. There we cuddled him, prayed for him and took some pictures so we could remember him. He died peacefully in his mummy's arms.

From there, the hospital allowed us to spend the rest of the day with him. Our families all came to see him and hold him. Once alone, Clare and I cleaned him and dressed him in his own clothes. He looked beautiful. At the end of the day, we said our goodbyes and they took him to the Chapel of Rest.

Although this has been a difficult time, we feel that Theodore was given every available opportunity. The doctors worked for 5 hours to try to save him and we felt they did everything in their power. Although the C-section was traumatic, if he'd been delivered naturally, he probably wouldn't have made it out. We were lucky that there was nothing else going on that night which meant we had every available person there, including an extra, experienced anaesthetist and paediatrician. We couldn't have asked for a higher level of care. Despite our sadness, this has given us peace about the situation.

The main doctor involved said that Theodore's anatomy was very unusual; He had a large tongue and awkward airways that made it impossible to get a tube in successfully. They think that, from the size of his stomach, he could have had digestive issues too. All these details were impossible to determine from the earlier scans. They have taken samples to try and understand exactly what condition he had as this will help us to know what we do about future children. Unfortunately, they feel that this information may not be enough so he has to go for a post-mortem as well. Despite being sad about this, we take comfort from knowing that this investigation may help our future children and research for other families in this situation. As long as this doesn't take too long, the funeral will be on Friday.

We have been tremendously well supported by our family and friends and have received more support than we could imagine. Thank you to everyone who has been thinking and praying for us. We feel very loved and have taken great comfort from people sharing their own situations with us. Please don't underestimate what your support means to us and we're so proud that Theo has touched so many hearts.

We don't know why God has chosen this path for us. We have learnt so much about dwarfism and made so many friends along the way, we feel sure He has a plan for us long term. As He helps to build back our life again, I am sure he will reveal this plan to us.

So our hearts are heavy with grief, but we know that for Theodore there is no more suffering because he is in heaven. We don't know exactly what that is like but the Bible verse at the end of this post promises that there is no pain or tears. We have no doubt that our little Theo is with God.

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, "Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."

Revelation 21:1-5

“For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11