Joshua the Miracle

Joshua is turning 3 on March 19th and some have been wanting to hear a blog about how Joshua has changed in the last 3 years.

Joshua just a few days old in the NICU

As I've mentioned in passing before Joshua was born somewhat unexpectedly early after several weeks of me battling pre-eclampsia and finally no longer being able to carry him safely. At first we were really excited that we were going to get to see him early, and thought that it was going to be a great day. We'd had several ultrasounds due to my health problems and all of them showed that the baby was healthy. After delivering Joshua we had brief chance to hold him and take the traditional first few minute photos, but then the nurses took him to be weighed, measured and bathed. It was during that time that they began to realize that what they had at first thought was a healthy baby boy was in fact a very sick infant. I had no idea what was happening at that time. I was tired and it was 1am so after a quick bite I fell asleep thinking that my baby was perfectly healthy and that Luke would wake me up soon and we would be holding our son and cuddling him all morning.

Joshua's 1st B-day

When Luke finally did wake me up he was very worried and talking so fast I could hardly understand him. I remember only clips and phrases of what happened and what was said during this time, partly because I was so tired and partly because I was so panicked. I do remember being shocked when I saw Luke walking over to me with a clipboard saying that I needed to sign it right away because Joshua needed a blood transfusion immediately. "Where's the baby at?"  "What's going on?" It was about 6am and it hadn't been a good night for Joshua. They had been surprised that he had even made it through to morning. He was extremely anemic and needed 2 transfusions right away to even survive. His heart pressure was very high, and he couldn't breathe on his own.   

Our family celebrating Joshua turning 1-a miracle

I didn't get to hold him again for the longest 8 days of my life. I felt like we lived at the NICU watching him, praying over him, crying over him. Finally on April 6th we thought that we were taking him home and showed up at the hospital ready to go just to have his test results come back and find out that he needed more blood again. That evening after another transfusion we took home our son. He was on 3 different prescriptions and full time oxygen. We thought that he was getting better though and were excited to have him in his room finally. A week later at his first doctor appointment we started hearing some difficult news. Joshua wasn't getting better like he should have been. His heart pressure was still high, he wasn't breathing like he should have been and his hemoglobin was low again. Discouraged we took him home thinking it would just take time. Again a few weeks later we heard a similar story at his next appointment. In the midst of all of this we moved. We changed doctors and were now taking Joshua to a specialist in Sioux Falls who feared that Joshua's condition would never get better. This doctor suggested a bone marrow biopsy.

Joshua and Luke at the Zoo for Joshua's 2nd B-day

I remember sitting in the surgical unit waiting room like it was yesterday. I felt chilly partly from the drafty room and partly because I hadn't slept in days. Up half the night with a baby and the other half of the night crying and praying for him to get better. I felt as though everything was moving and yet we were completely still. And when Joshua came out of surgery I held him so tight, and kissed his head a thousand times, I thought the worst was behind me, but it wasn't. A few days later, a day before Joshua would turn 5 months old we sat in the hematologists office and heard him say that Joshua's bone marrow was abnormal. It did not contain what it needed for him to make blood. The transfusions that he already had were just the beginning and he would need a shunt to receive blood on a regular basis until his body couldn't survive. He said that the extra iron from the transfusions would slowly build up until his little body couldn't hold anymore and would die. The life expectancy for someone with this condition would only be 7 maybe 10 years.

That moment changed my life forever. But we went home and we prayed. And everyone we knew prayed. And everyone that they knew prayed. And we went to another bad appointment and another one and another one, and then it happened. We went to an appointment and Joshua's blood work came back the same as the last time, not worse, not better but the same. At the next appointment is was little better, not much, just barely, but a miracle. Joshua's body had made the tiniest bit of blood on it's own and it was a miracle.

Joshua turning 2

It was then that Joshua's story changed. He went from a sick fussy baby  to a happy healthy baby and it all started that day with the tiniest change. Joshua was 6 months old when he received his last transfusion. At his next appointment he was to get a shunt put in so that he could receive blood regularly, but he never needed it. God healed him. The last time that we saw his hematologist he said to us "this can't be the same kid,these test results can't be right". But he is the same kid, he is healed.


Joshua just a few days ago at the park

Joshua has changed so much since then. He had few more surgeries after that : Hernia, Cleft Pallet, and Ear Tubes but nothing we couldn't handle. Just in the last year he has become such a talker. He thinks he is very funny and is much the class clown minus the class. He loves his new baby brother and is always giving Jonas hugs and kisses. He loves Thomas the Train and is having a Thomas birthday party. His favorite foods are spaghetti, corn dogs, and grilled cheese. Joshua's favorite restaurant is the China Buffet because he gets to have ice cream when he's done eating and they have a fish tank there that he is quite interested in. He likes to be a helper but his idea of helping isn't always the same as mine. He can throw a tantrum  that can shake the walls of his bedroom and just a few seconds later he can melt my heart with his smile. He is amazing! He is truly a miracle. Luke and I joke alot that it's not easy raising a miracle, because it hasn't been easy, but it's been worth it. Every night before Joshua goes to sleep we say our prayers and we thank God for healing him and giving us a miracle.

 

 

Always has a smile for everyone. Playing here with his Grandma