Lots of people have been asking me to start a blog. So here I am! I am by no means a writer, but I know lots of your are curious on how our little Deklyn is doing so I am going to try to keep this updated!
First off for a little info, back in August we had an ultrasound where a doctor informed us that he didn't know what, but something was very wrong with our baby. We obviously were not very happy to hear this, but after lots of people telling us how so often mistakes are made at these ultrasounds we thought that must be the case for us!
In the beginning of September we went to Winnipeg for a specialist appointment, this is where we were expecting to hear everything was fine and this was all just a mistake. Instead we heard that more than likely, our baby was going to die if not before, then after birth. We still did not know what was wrong but our doctor said his bones were not forming right and in her opinion a baby could not live with this condition. Saying we were upset would be an understatement. No parent wants to hear that their baby is going die.We went on to have many more specialist appointments and doctors came to the conclusion that our baby most likely had Hypophosphatasia, a very rare condition where the bones do not develop properly. Doctors kept telling us that his chest was very small, and chances were very likely that he would not be able to breath when he was born and they were also not sure if they would be able to get him on a respirator. If they could do that, then they told us there was a drug that was still in trial that had been successful in saving other babies who were born with this very rare disorder. This definitely gave us some hope but doctors still made it sound like there was a very slim chance of him getting to the point where he could even get the drug.
The day came! December 20th we were scheduled for a c-section. As most parents are, we were pretty nervous. Not only were we going to become parents but we did not know what this day held for us. Despite how negative things looked, we refused to believe our baby was going to die. We prayed healing over him everyday and believed he was going to be born healthy and whole. I'm not going to even pretend I wasn't scared or had doubts. There are lots of people who pray for healing and it doesn't seem to happen. But we continued to believe nothing but the best for him. It seems strange to me now, but looking back at that day I was strangely calm. I know it was all the prayers everyone was saying for us.
As he was born Sheridan got to see him, and he told me that his arms were short (as we knew they were from ultrasounds) but that they would be healed. They told me to look to my left and I would see him as they took him away and as they took him past me Deklyn was looking right at me. They stitched me up and brought me to recovery and you'd think I would be freaking out wanting to see my baby and know how he was doing but I was very much at peace. I knew he would be ok. Before I was in this moment I thought I would be very sad that I didn't get what most moms get, to hold and look at their baby after it is born. But I wasn't, all I wanted was for him to be ok and if that meant I didn't get to see or hold him right away that was ok.
The doctor came in my room and told us that he was doing much better than they thought he would do and he was in critical stable condition. After awhile we got to go see him, I looked at him and saw how short his arms and legs were but just knew everything would be ok. I know lots of people had been praying for us and I know that those prayers helped keep me calm this whole time.
So since Deklyn has been admitted into the NICU he was diagnosed with Hypophphatasia and has started treatment. He has come off of all his medications, one to calm him is just given as needed. He is doing just great! His first few days he just lay there with no response to touch or sound. Christmas day he started moving his mouth and tongue around and now he's been moving his head a bit and even his arms too. Doctors and nurses and just amazing with how he is doing. As of right now there is no sign that the drug is working, but we are told there is no reason to think it won't. Seeing as the drug is still in trial they will have to do a little playing around to find out exactly how it will work for Deklyn. They told us with all the babies they have treated it never worked right away, it took a bit of trail and error. So now we are just waiting.
I honestly can't help but feel blessed. Most people would think how can you feel blessed in such a situation, but honestly things could be so much worse. We are lucky that there even is a treatment out there for this extremely rare disorder. We have such amazing doctors and nurses looking after him that know exactly what to do, if he had been born anywhere other than Winnipeg this wouldn't be the case! And if this hadn't been found on an ultrasound (which has been the case for previous babies) who knows where he would be.
Sheridan and I just want to thank everyone for your prayers and support. We have and do need them and appreciate everyone of them! Deklyn's life is and already has brought God glory. I can't wait to see what God has planned for my little boys life.
When we first heard something was wrong, a family member felt lead to share this verse with us and I think about this verse everyday.
Proverbs 3:5-8
Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. Don't be impressed with your own wisdom. Instead, fear the Lord and turn away from evil. Then you will have healing for your body and strength for your bones.
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