Wednesday, May 20, 2009

Where Have the Days Gone?

Update for Sunday, May 17 - Monday, May 18, 2009 - My how time flies when you are having fun (or not sleeping so everything runs together)! Elle, Lee and I are all slowly getting accustomed to being our little family. Sunday night Lee and I gave our little princess her first bath. As most new parents, we wanted to capture the moment on film. And of course, because we have taken pictures of our little beauty everyday - Lee started to get the first bath on video and the memory card is full! So - we only got a portion of bath time on caught on camera. I guess it is now time to sit down and make cds of all her pictures!

After her bath, Lee and I changed the dressing around her g-tube. This was so nerve racking! We noticed that the incision looked red and there was some gross stuff coming out of it. I can honestly say that how the next hour transpired solidified my faith in Texas Children's Hospital and the wonderful staff. I called the pediatric surgery phone number we had been given. By this time it was around 10:00pm. A receptionist answered - I told her that Elle's incision sight looked infected. She told me that she would deliver the message to the on call surgeon and if I didn't receive a phone call within 15 minutes - I needed to call back. Five minutes after I hung up the phone, I received a phone call from the operating room - the on call surgeon was in the middle of a surgery - but he had his nurse call me to tell me he would be finished in 30 minutes and he would call me back. Five minutes after I got off the phone with the nurse from the operating room, I received a phone call from the receptionist I had originally talked to. She wanted to verify that I had heard from the on call surgeon. The on call surgeon called me back within 10 minutes and asked about Elle's incision. I was so impressed with how the whole situation transpired! The surgeon told us to wash the incision sight with soap and water and told me to bring Elle in on Monday morning at 11:00am. I am so thankful we have wonderful people like the night staff that were working on Sunday night to help us through situations - no matter what the situation! I still (three days later) can not get over how prompt they were and how thorough they were in making sure we were taken care of. Monday morning was an event I don't think I will soon forget. Lee's mom came over early to help take care of Elle. I was so thankful she came early because it allowed me an extra hour of much needed sleep! I finally got up and started to get all of Elle's medicines together. I quickly realized that I had not allowed myself enough time to get Elle, Elle's stuff and myself together to get out the door by 10:00am to make it to our 11:00am appointment. It really does take 3 hours to gather everything up and walk out the door! Vickie had to leave and as she was leaving, my mom was walking in the door to help me with Elle. By this time it is 9:00am and almost time to sit Elle down for breakfast. I had my mom hold Elle while she was eating while I ran (yes - literally ran) around the house gathering up everything we were going to need for the day. This was going to be our first "real" outing (I'm not counting the dr appt we had last Friday). I also had to pump - so I'm in Elle's room pumping and gathering up the things that needed to go into her diaper bag when I made the realization that I totally chose fashion over function when I bought Elle's diaper bag. It's a really cute Kate Spade bag with blue and white stripes and red accents - totally adorable...but... It didn't hold enough stuff! So then I had to run and find my big purse and started throwing stuff in there too! Not to mention, I had to load up the feeding pump, get the milk together that we were going to be needing for the day (we were going to be at the hospital all day because Elle had an audiologist appt at 2:00pm) and figure out how to use the new stroller! Ahh! I'm getting stressed out just writing about all that stuff! My mom and I managed to get out the door at 10:30am and made it to Elle's appointment with the pediatric surgeon about 15 minutes late - so it really wasn't all that bad. I must say that while my choice in diaper bags is not all that functional - I did make a great decision in getting a "Snap N Go" stroller. It is smaller than Elle's normal stroller - so it was much easier to maneuver in the hospital and in the waiting it held all our stuff! Again, I was impressed with how TCH outpatient operated. We got to the pedi surgery clinic and they ushered us back to a private room since Elle is a heart patient and can't be exposed to a normal waiting room. We didn't have to wait too long before Dr. Minifee, the on call surgeon I talked to the night before came in and checked on Elle. It was pretty funny because Elle held her dress up for the doctor to look at her g-tube. Dr. Minifee said we caught the infection before it got too bad and started her on antibiotics. It was a quick in and out type of appointment. We also made our appointment to go back and see Dr. Wesson on June 4 to take out her feeding tube and replace it with the button. We had a few hours to kill before our appointment with the audiologist. I took Elle to the milk bank so I could pump and set up her feeding pump to get her fed. As soon as I walked in the door all the ladies asked me what I was doing back - I proudly told them - we're outpatient now! They confessed that they always knew my milk when I dropped it off because I used pink pen on all my labels. It's the little things! Since we didn't want to expose Elle to a whole bunch of people, my mom and I hung out around the milk bank in the hallway that connects TCH to St. Lukes next to the NICU until our next appt. We ran into a mom and dad of another heart baby that we had become friends with. They are waiting for their 12 week old baby to undergo a heart transplant. All I can say is please pray for ALL the families that are in TCH. They are all so strong - but prayers are always appreciated. The audiologist appointment was not what I expected it all. It was 3 hours long! Elle didn't do so well because the test requires her to be completely asleep. She doesn't do well with sleeping during the day so we have to go back in a month to continue the test. The audiologist was able to give us an answer on Elle's hearing. She has moderate hearing loss and will need hearing aids. However, she can still hear. She can hear when I sing to her and can hear when we talk to her - it most likely sounds like a whisper to her though. She will be fitted for hearing aids in about 2 months when she is 4 months old. I was so thankful my mom was there. As Elle was undergoing the test, my mom was able to see the computer screen. Since her background is in Deaf Education - she was able to explain what everything meant to me. She was greatly optimistic about the moderate hearing loss so I am optimistic too. The audiologist told us they even make pink hearing aids...I wonder if those will be over the top for our little girly girl?


Laura said...

Pink hearing aids and then earmolds with sparkles will be adorable on our princess!!! Moderate loss..yeah!! They jumped the gun on talking about implants:)
I cannot believe that you have been home a week already..sounds like ya'll are doing so well!! Love the comment of you laying sleeping on the true:)
Love you!!

kgjones said...

I love to hear that you all are doing so well and doing great at home! I love the story about the great service you are getting at TCH too!

Elizabeth said...

Your daughter is too cute! With moderate loss, appropriately fit hearing aids (the pinker and sparklier the better!) will go a long way toward helping her lean to listen, talk, and succeed in the world at large.

Great blog! I hope you'll consider adding it to the aggregator at Deaf Village ( We'd love to have you as part of our community!

Congratulations on your beautiful new baby girl!