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.