Thursday, May 28, 2009
Tuesday, May 26, 2009
This past Memorial Day weekend was peaceful to say the least. We didn't do anything! I wish I could say that I was super productive but the answer to that is going to be a resounding no. I did spend Saturday morning with 2 of my wonderful friends who treated me to a manicure and pedicure. Thank you Angelle and Jess!! I definitely needed to get out of the house for a bit. Elle is slowly but surely figuring out the bottle. She is now averaging 20cc with every feed so that is awesome! She has also figured out that if she cries - she gets picked up - so she is pretty much held the entire day. Lee kept asking me over the weekend if she usually cried as much as she did. I could only respond that she's a baby and babies cry! Maybe she doesn't like watching HGTV or the Style channel all day and is just voicing her displeasure with a non stop onslaught of Design on a Dime and Clean House!!
I want to thank my wonderful friend Annalee for our amazing blog re-design. It is fabulous..and designed by Fabulous K Creative. I almost cried when I saw the finished product - it is wonderful!!! I told Annalee I wanted a blog that was "happy" and I definitely think she and the wonderful designers of Fabulous K delivered!! Thank you soooo much!!
Sunday, May 24, 2009
Thursday, May 21, 2009
Wednesday, May 20, 2009
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 rooms...plus 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?
Sunday, May 17, 2009
Wednesday, May 13, 2009
The Power of the Paci
Today, I woke up to the transport team coming in and telling me that they were taking Elle down for her echo cardiogram. I asked if they could wait for me to brush my teeth and put on real people clothes and they said yes. I got dressed and walked out of the bathroom and found Dr. Edmonds looking through Elle's chart. Talk about timing!! Dr. E said he would come back later to discuss Elle - but later in Dr. E's world either means 10 minutes or 10 days. We took Elle down to the echo and about an hour later, we were back in our room. I got to see the BT shunt in Elle's heart which was pretty cool to see on the echo. When we got back to the room I got Elle dressed and ready to face the day. Since today will most likely be our last full day in Hotel TCH, I dressed Elle up in her brightest outfit. She is such a little ray of sunshine and I had to make sure her outfit matched her personality!! Elle had her hearing test this morning as well. The technician wheeled her computer into our room and put a sensor behind both of Elle's ears and then a sensor on her forehead. She put a little probe into Elle's left ear and then let the computer do it's job. I think that sound was emitted from the probe and then the sensors were reading Elle's brainwaves to see if her brain acknowledged the sound. She failed on both her right ear and her left ear. We had known from the CT that Elle had some form of hearing loss, but it really sucked to actually hear that she failed the hearing screen in both ears. When the tech left the room I started crying - just from the shear fact that I had actually heard those dreaded words said. I emailed Lee and told him the news. He asked if I was ok and I told him that I was upset - just because I was praying she would be a miracle child with deformed ear canals and perfect hearing. His reply was exactly the reply I needed - he said "she is a miracle child and she is perfect - just the way God wants her to be! And the best thing is...she's ours!" He's exactly right - she is our perfect little angel and we are so blessed to have her in our lives! At 1:30pm, Lee and I had car seat training. A physical therapist came into our room and went over the proper way to put Elle in her car seat. We then had to go down the car to be sure the base was in correctly. As we were waiting for the elevators to go down to the parking garage - Dr. E came flying out of the elevators - talk about timing again! I stayed with Dr. E while Lee went to the car with the therapist and the car seat. Dr. E put the scope down Elle's nose to check to be sure the holes he drilled are still open. Her right side has closed a bit and so has her left side but Dr. E feels that they should stay open with saline drops and suctioning with a bulb. He said he might have to put stents back in her nose - but he will make that call in a month when we follow up with him. Our talk then turned to her hearing. He had already told us that she has ear deformities. She will definitely need hearing aids and may possibly need a cochlear implant. I told him about the hearing test she had and he told me they did the wrong test on her. Since we already knew she had hearing loss - she was supposed to have a diagnostic test done. Since we are being discharged tomorrow, her hearing test will have to be done outpatient with an audiologist. AHH! Dr. Slesnick came by this afternoon and told us that her echo looked good. Awesome! Another thing checked off the list! We had CPR at 6:00 this evening. That was an eye opening experience - it really hit home that we may actually go home tomorrow! We're still waiting on a few loose ends - but hopefully we will be heading home tomorrow - we have the big stuff marked off the list and now it's just the little things that need to be taken care of. I can't believe this whole adventure might soon be over. It's hard to believe that we have been here for 7 1/2 weeks. How time flies!!
Monday, May 11, 2009
After Elle's eventful day of cloud watching and lots of tummy time, she is plum tuckered out! Maybe she will stay asleep tonight!
"But may the righteous be glad and rejoice before God: may they be happy and joyful."