Thursday, March 26, 2009

Home Sweet Home

so we have been home for over a week & i have been so busy i havent had time to blog. finally we are on a schedule & things are getting better around our household. Here is how our week has been....

wednesday March 18th: we finally got the okay from the hospital that we were coming home! it took almost all day to make sure i had everything i needed to take care of Lewis. We came home on 3 different medicines. Sildenafil (also known as viagra) this is to help with his pulmunary hypertension, He gets it every 8 hours. Lasix which is used to help keep his blood thin & it makes him pee alot.... he gets this every 12 hours. Last but not least is Methadone that helps with the withdrawls from all the pain meds he was on. He is almost done with this drug thank goodness..
Two nights before we left they took out an IV line that was in his leg because his leg started to swell & was turning purple. they did an ultrasound on his leg & found a blood clot. i wish i would have taken a picture because his leg was double in size... so to help with the blood clot we came home on Lovenex that helps to thin out the blood. This however had to be given in a shot so a nurse quickly taught me how to give shots since he had to have it 2 times a day. It was pretty easy to learn but i have to admit i was very nervous when we got home & i had to give him the shot with no nurse there to supervise me. I was shaking sooo bad but i managed to get the job done...

His scar looks soo good & has healed up nicely...

We finally got to leave around 7 thursday night after a long day of just waiting around & trying to remember everything all the nurses were telling me. It was such an amazing feeling walking out of that hospital with my baby finally!!! It still seems so surreal that he is actaully home & doing so good... He is my little miracle & i thank heavenly father every single day for sending this special spirit to be apart of our family & for trusting me to take care of him. I have been soo humbled by this experience thats for sure...

We finally got to put some clothes on Lewis for the first time!!! He looked soo adorable in his little outfit...

Thursday March 20th: We had a pretty uneventful day but as the day went on we realized that Lewis was having a hard time breathing. He was breathing really fast & was acting like he was having a hard time getting air. We were really worried so we called Erica a nurse at St Joes & she said if we could wait to come into the clinic in the morning & that she would see us right as it opened. We decided to wait out the night but we had someone watching Lewis 24-7 just in case something happened and we needed to take him to the ER.

Friday March 21st: We went to the clinic around 8 to meet with the drs. We got some x-rays done, they checked out his wounds, & did an echo on his heart. after a few long hours they came to the conclusion that his pulmanary hypertension was worse than they thought. So they upped his doses of Viagra to help with that & also said he needed to be on oxygen until we come off the viagra. Alvin & i both thought we should have came home with oxygen to begin with. They also found some fluid in his lungs & around his heart. This could be from him swallowing & his food not going to the right place. So we are now doing all his feeds through the feeding tube. He has a swallow test on April 6th so hopefully we can figure everything out so he doesnt have to keep the feeding tube in very much longer.
So other than that one scary night things have been going well. He requires alot of attention & work but he is sooo worth every second! We love having him home & are thankful for each day we get to share with him.

Here is his humungo oxygen tank. they gave me little baby oxygens to take whenever we got out. needless to say i have alot of stuff to carry whenever i take him to the Dr's.

His feeding machine. I cant wait to be done with this thing...

He had his first bath at home by grandma Tenney & me. He didnt like it very much.

All dressed up & clean!

My grandma Tenney Lewis's great grandma came by for a little visit & finally got to hold him! he was smiling away at her..

Aunt Kimmie has been such a big help to me & even will come stay with me on nights Alvin has to work so i can get in a few hours of sleep. What would i do without my sisters... they are seriuosly the best.

Also Lewis is officially one month old. i cant believe how fast time has gone. Its so crazy to think that in a month he went from this... a swollen baby just out of heart surgery to...

a happy baby who is home & doing what babys do best. sleep, eat & poop. Happy One Month Birthday Lewis! We LOVE you.


  1. Im so happy everything is going well and I cant believe he is 1 month old!!!! I cant wait to see him again and you guys BUT I have had a cough and stuff that I dont know what its from so I will be waiting till our house is nice and healthy before I come love on baby Lewis!!! Love you and I'm so proud of you.

  2. Oh we are so happy that you are home and things are going well. Sounds like you are doing an awesome job, we knew you would :) He is such a cutie. Love you guys.

  3. We are so happy for you guys that you are back home and in your own surroundings and that you get to have Lewis all to your selves. That is the best feeling in the world. We hope everything keeps going well and that you get some sleep. Let us know if you need anything!

  4. My gosh!! We had no idea! I was wondering why I hadn't heard from you guys! Please keep us posted and let us know if we can help!! love you guys!!

  5. Jesse, I am so glad that you guys are home. You guys have been in my thoughts and prayers, and I am so glad that things are going well. You are so strong, and I am sure you are learning so so much with this experience. I couldn't imagine bringing my baby home and making sure he gets all his medications and feeding tube. I am sure you have learned so much more than most first time moms learn during the first month. I will see you at your shower. Take care! :)

  6. He is so precious!! I am so glad to hear that things are going well. I hope things continue to progress and go well. I can't believe he's a month too wow.

  7. It was so good to see you guys again!! I am so glad I finally got to hold this sweet little miracle!! We love you guys!!

  8. i'm so happy he is home! he looks great and you sound like such a good mom. thanks for the update!

  9. I'm so happy for you! Reading your posts bring so much back for me as so much of it is SO familiar! PLEASE don't hesitate to call if you ever need to talk or have questions...I MAY have the answers. It is much like a roller coaster as you have found out, but be strong and keep doing whatever you are doing! Little Lewis is blessed to have such a great family to put in the time and effort this little complicated guy requires. You are right...they are worth EVERY second! It is such a blessing to read and feel of your unwavering faith and testimony! Keep up the good work! He is adorable!

  10. He's beautiful Jessie...What a good mom you are - hang in there! Love Ya!

  11. Congrats you guys! Being parents is soo much fun! I am glad to hear he is home now and doing better. Jessica, I know you have no idea who I am but Alvin and I grew up in the same stake. And my Husband actually knows your whole family! Crazy small world! He was a missionary in Heber in 2000!

  12. I'm glad to see that Lewis is home and doing well! He looks great and is SO adorable! It was the best feeling taking London out of the hospital and finally putting clothes on her, too! You are such a strong mother!!! I would not be able to do the feeding tube and shots! I hope things continue to go smoothly for your cute family! Keep in touch!