Gratitude

"Gratitude, thankfulness, or appreciation is a positive emotion or attitude in acknowledgment of a benefit that one has received or will receive."
I feel like I am generally a pretty grateful person, but spending over a week in the hospital can really put life into perspective and the word gratitude has taken on a whole new meaning in my life. The first night that Blake was in the ICU was a sleepless night for me. I was so worried about my baby and was overwhelmed with emotion as I thought about how we ended up in the ICU and what might have happened had we not gone to Blake's doctor's appointment that day. At 4:00 in the morning, I sat in the rocking chair (aka my bed for the next 8 nights) and rocked my sweet baby boy. I was so scared and pleaded and prayed that my baby would get better. The walls in the ICU are paper thin and as I sat in the rocking chair, I could hear the doctors enter the room next to ours. I couldn't understand everything that was being said, but I did hear the doctors tell the parents in the next room that they had tried everything to heal their son, but the medications weren't working and the only thing keeping their son alive was the medications he was on and the medical equipment that was helping him breathe. I then heard his parents tell the doctors that they understood what was happening, but that they weren't quite ready and that they wanted a few more hours with their son to say goodbye. Tears filled my eyes and my heart ached for those parents. How do you say goodbye to your little boy? Why now? Why him? I held Blake a little tighter that night. The next day, we were moved to a different room and later that night, I passed by our old room and found the room next to ours empty. I couldn't even imagine what those parents were going through. I learned that night that no matter what I am going through, there is always someone going through something harder and that as difficult as my trials and challenges may be, I would never trade them for anyone elses. I am now more aware of many of the things that I have taken for granted in the past, like my own health and the health of my family. I am more grateful for my warm house that I get to live in and the many comforts that I am able to enjoy. I am more grateful for the county that we live in and the freedom that we have. My goal for the new year is to focus more on what I do have and not worry about what I don't have and that, to me, is the true meaning of gratitude.

Our little trooper

Blake was such a good baby in the hospital. He flirted with all the nurses and was smiling all the time even though they were poking at him 24/7. He was such a trooper...he was much braver than mom and dad!

Getting his first EKG

Smiling in his hospital bed

Anya was so nice to track down a swing so that Blake wouldn't be so bored. It turned out to be a little ghetto and even with new batteries, it barely moved. Thanks for trying Anya!

Look at his cute little hospital gown!

More good news!

Blake got to come home from the hospital yesterday! On Friday the doctors told us that he may be in the hospital for as long as a month, so you can imagine how excited we were when they told us that he could go home on Wednesday! He had a huge turnaround starting Sunday evening and continued to get better over the next couple days. I think he is as excited to be home as we are to have him home. He is doing great. He is on 3 different medications that he has to take twice a day. We have to listen to his heart 3 times per day to make sure it isn't beating too fast or too slow. We will be following up with cardiologists regularly until Blake is 1 and then they will try to wean him off of his medications. If he is able to maintain his heart rate on his own, he will not need to have an ablation, otherwise, they will do it when he weighs about 30 pounds, which at the rate he's growing, could be sooner that we think:) We feel so blessed to have had such great doctors and nurses and such supportive family and friends to help us through this. Once we realized that Blake was going to be okay, we took some pictures to document the whole ordeal, so I will post those later, but just wanted to let everyone know that he is home and doing well!

Update

The cardiologists just came in to see Blake and after a rough and emotional weekend where I felt like we weren't making any progress, I had to share some good news. Last night, Blake converted into a normal heart rhythm and stayed in one for 5 hours, which is the longest he has stayed in since we have been here. They were able to turn off the IV drip that has been running since Thursday and he is now taking all of his medications by mouth. He still converts back and forth between a normal rhythm and the tachycardia, but he seems to be staying in a normal rhythm more than he is out of one. He was able to get some good sleep last night and he was a very happy boy this morning. Our nurse today let me take off all of the leads and lines that he is hooked up to and I was able to give him a bath. They have the little pink buckets that they use to give newborns their first baths and we filled it up and stuck him in there and he looked at me like "mom, I don't fit in here!" It was pretty funny! They are going to do an echo of his heart today to make sure that his cardiac function hasn't declined from last week. If he is able to keep his heart rate down and stay in a normal rhythm most of the day today without the IV drip running, he may be able to transfer out of the ICU in the morning! They also placed a PICC line on Saturday so they are able to give meds and draw labs without having to poke him, which makes him and me very happy. He has been laying in his crib in only a diaper so they could monitor his heart and his color, etc all week and they let me put clothes on him last night. Now that he has clothes on and they have been able to remove some of his lines, he is looking more and more like my cuddly, healthy baby. Thank you everyone for your fasting, your faith and your prayers. I know we are not getting through this alone!

Blake update

We have had many friends and family calling wanting an update on Blake. For those of you that don't know, Blake was admitted to the ICU on Tuesday because his heart was beating about 240 beats per minute and a normal 2 month old should have a heart rate of 120-140. They did an EKG, chest Xray and an Echo of his heart and found that he is in what's called suprventricular tachycardia. The form of this that Blake has is pretty rare and it is called Persistent Junctional Reciprocating Tachycardia...I know it's confusing, but basically he has an extra electrical impulse in his heart that is stimulating his heart to contract continuously without relaxing or giving it time to fill up with enough blood. His heart is only putting out 30% of the blood volume that it should be. As you can imagine, he is very tired, it's like running a marathon day after day without giving your heart a rest. They have tried several times to do a cardioversion, which basically means that they use medications to stop his heart and then re-start it with the hope that when it restarts, it will be in a normal rhythm. So far, each time they have converted him, it only lasts a few seconds and then he is right back in SVT. They have him on several medications to slow his heart rate down and some that make his heart contract stronger to help put out more blood. His heart rate has been in the 180's and 190's for that past 2 days, which is an improvement, but still too high. If they are not able to convert his heart into a normal rhythm, they will have to do an ablation, which means that they basically freeze or burn the extra electrical impulse in his heart so that it does not stimulate the extra heart beats. He has to weight about 30 pounds to do the procedure, so they won't be able to do it until he is about 3 years old. They will treat him with medications until then to keep his heart rate down so that it does not cause permanent damage to his heart. The doctors seem very confident that they will be able to treat this either through medications or through the ablation. They keep telling us that the medications take a long time to work and to be patient. We know that he will be in the ICU until at least Tuesday. Once they are able to stabilize his heart rate, we will be able to take him home. We are trying to be patient and we know that he is in good hands. Thank you everyone for your phone calls, your thoughts and your prayers. We love you and will keep you updated.

Blake's Blessing

Happy Halloween!

My little Glow worm. He thought he should eat his costume:)



Aubrey, Jeana, Carli and I were 80's rockers (Thanks RockBand for the props!)

John was a basketball player...boring!

Popeye and Olive Oil aka Jason and Nikki