Wednesday, May 19, 2010

Home Sweet Home


It has been a long road getting here but so worth it. Like everything with Jacob it was not uneventful lol. Our day started early at CHOP where he had an echo and EKG and then we met with his cardiologist. She said he looked good to go home and we hit the road. By then it was after 1pm. About 4 hours into the trip I got a little worried about Jake. He was ok but his color was a little dusky and he had a bad retching episode. Not horrific by any means but I noticed some yellow in his tube when I vented him and got worried because of what happened to sweet baby Gweneth.

So I decided to call an ambulance to take him to WVU Children's hospital to get checked out just in case. Especially since we were in the middle of nowhere. It took about 45 minutes in the ambulence. I had my own pulse ox machine and told them that his Sats looked good for his anatomy, his heart rate was fine and his color looked good. We got to Ruby Memorial which is right next to WVU Childrens. It was a NIGHTMARE! The ER was so dirty and small and our nurse was horrible. I tried to explain to her that Jake's anatomy was unlike a normal baby so his vitals were a bit different. She ignored me and was training a guy on how to do the job. They refused to let me feed Jake so he was very upset and hungry. The docs said his SATS and heartrate looked good so there was no reason to do an echo or anything and I could feed him (after 2 hours) and we would see if he was ok and go home. So basically they did nothing but he did look good so I was ok with getting him out of there.

The lead for his heart rate had fallen off and the nurse never even came in to see why he showed no heartrate. I then asked her if she had adhesive remover to take the leads off so it would not hurt him. She said yes but then proceded to just rip them off without loosening them with anything. He screamed horribly and I wanted to deck her. I would have at least used warm water or something to make it easier. She walked out without telling us whether we could leave or not. Seriously, and this is the hospital that Dr. Eckerd wanted us to have his surgery at. Are you KIDDING me! I will NEVER go back there.

So I felt silly for doing all of that but with these kids its better safe than sorry so if I feel something is off I have to go with that.

We drove around looking for a hotel. They were all booked, we finally found one and after a long night of stress I set up his overnight feed, gave him his meds and passed out. I was up a lot but Jake continued to do well.

We finished our trip the next day. Boy is it good to be home. The best part was seeing how excited Aidan was about his new baby brother. He kept saying how cute he was. He is so good with him. Best big brother ever.

We unpacked the countless medical supplies and 3 months worth of luggage and enjoyed a great evening as a family.

Jake had a pediatric and a cariologist appt. today. He now weighs 9lbs 4oz! This is great, he was 9lbs 1oz a few days ago. Go Jake Go! I was a little concerned because his testicles were a little swollen which is on the list for heart failure signs and symptoms but the pediatrician and cardiologist both looked at him and said it was not that. They think it may be from being in the carseat so long and traveling. We are keeping a very close eye on it and hopefully it will go away soon. We are going to go to both the ped and the card. weekly for a while. He will be weighed frequently because it is SO important for him to get big for his next surgery. It is essential! Pray for Jake that he continues to do well and that the swelling goes away.

Jake's Sats are perfect for his heart and his heart rate has been great. His color looks good and he has been smiling so much more lately. I love it. I think he really likes being here. It is such an amazing feeling to have my family together again.

Our schedule is pretty hectic. You realize how easy it is to get up with a "normal" baby and give them a bottle and burp them. It is very time consuming to set up feeds, tear them down, vent, give meds, meds and more meds then rinse and repeat! So to all of those moms who are complaining about being tired because their baby wanted a bottle at night, please realize how lucky you are lol. But you know what, I wouldn't change it for anything. Jake is so perfect. I am getting used to my new norm and seriously should have a nursing degree by now. Its crazy how fast you learn this stuff when your child needs it. We have our new "norm" full of monitors, pumps, tubing, and meds but its all going well. Aidan doesn't know any different and loves his brother the same. I would do anything for Jake, with all he has been through... how can I complain?

Although I hate that Jake had to endure all of this, I also feel so blessed that I have met so many amazing kids and families throughout this journey. My eyes have been opened to a whole new world. A world where you stand still and the calendar days fly by as the world goes on around you. A world where there is so much comfort love and support. A world full of people who would do anything for total strangers because they know what it is like to live this life. It makes you focus on the little things on taking in every moment because you don't know how many moments you will get. It makes you feel so blessed for what you do have and cherish it ALL. I truely feel like a better person because of all of this.

Thank you to my heart moms, family, friends and perfect strangers who have been such an uplifting support for our family. Many would look at our situation and feel sad or sorry for us but please do not. We are blessed and we are happy and we are the lucky ones. We have Jake, our miracle who has taught us what it truely means to "Live".

Thank you!

Happy to have both of my boys together!


  1. Love this! So glad you are home. You look so happy in that photo of you and your boys. Enjoy being's been a long road!

  2. So glad to hear you made it home and Jacob is doing so well! :)

  3. so glad u made it home and wvu childrens hospital is not that bad the nurse are nice and they take good care of ur children