We are at home! It was so wonderful to sleep in our own beds last night! We got home around 7:30pm and were all asleep by 10:30pm. Riley slept until 4:30am and woke up to eat. After getting her incisions cleaned, she went back to sleep and slept until 9:30am! I truly cannot believe how well she has been resting.
Our experience at Children’s Hospital Boston was amazing. All of the staff were so nice and took excellent care of us. Of course Dr. Mulliken is great or we wouldn’t have even gone to Boston, but I’d like to mention all of the other wonderful other people we met. The staff in pre-op, holding and the waiting area were so nice. The chaplain came by in pre-op and prayed with us before we moved to holding. Riley’s anesthesiologist was super nice and caring. He explained how he would put her to sleep and relieved a lot of my anxieties about that. He even came back to talk with us in the waiting area after Riley woke up to tell us how great she did during surgery. Then he came back to check on Riley Friday morning to see how her night went and to make sure she was comfortable. I thought that he went above and beyond what a lot of other anesthesiologists do. Our day nurse Thursday and Friday was Valerie. She was great–checked on Riley often, and stayed on top of her pain medications. She was diligent in keeping the iced saline on the gauze to help reduce swelling. She loved our accents and called us her “Alabama family.” It never failed though, if she was in our room, they were paging her overhead to go to another room! Valerie made sure to tell us that Riley was “not normal–most babies don’t eat and cry a lot.” Riley ate like a champ and didn’t cry any more than she normally does at home. Our night nurse the first night was Loren and she had a student nurse, Colleen. They were awesome. They, too, checked on us often and stayed on top of Riley’s pain meds. They were diligent about keeping Riley’s incisions clean–something Dr. M is adamant about. Loren even offered to feed Riley for me at night so we wouldn’t have to get up (I didn’t let her but was so appreciative that she offered). Mary Anne was our nurse the second night and was great too. A doctor from the plastic surgery team came in Saturday morning and removed Riley’s nasal packing. Then Dr. M came by and sent us home! Needless to say that Brock was very excited about going home on Saturday as opposed to staying until Tuesday!
Riley’s repair is not complete. This was only the first stage. Dr. Mulliken performed a lip/nasal adhesion–meaning he only closed the white part of her lip and made her left nostril match the right. The red part of her lip is the same as before and will be corrected with the final reconstruction sometime between August and November. She has a Logan’s bow over her lip to protect it. It is simply taped to her face and the tape will come off on it’s own in the next week or two. Brock says it makes her look like a football player. Riley has to wear the elbow immobilizers (aka welcome sleeves, or no-nos) to keep her from touching her lip. She is supposed to wear them for the next 4 weeks. Her lip is still pretty swollen and I can’t wait for it to go down so I can see what she *really* looks like.
Thanks to everyone for thinking of us and praying for us. Our prayers have been answered once again. We couldn’t have asked for things to go any better or smoother!
**if you point to the pictures with your mouse, you can see the captions**
Sunday, May 31, 2009
We're home!
Posted by Nola at 4:07 PM 5 comments
Friday, May 29, 2009
Post-op Day One--Boston--Day Four
Riley had a really great night last night. She was awake from about 7:30pm until a little after midnight. She didn't care for the first dressing change too much! But then she slept from around 12:30am until about 10:30am--waking for feedings and dressing changes of course but then going right back to sleep. She has rested well and continued to feed well today too. The Tylenol with codeine seems to be working really well at keeping her comfortable. Her dressing came off around noon. She looks so good--so different already. She is pretty swollen though so I can't wait to see what she *really* looks like when the swelling goes down. Riley has been such a sweet little princess...I won't say much more 'cause I don't want to jinx it! I did get her a crib toy from the play room and she really liked it--it plays music and lights up. We are getting discharged in the morning and then flying home. Can't wait to get home and see Sawyer...it's been a long 5 days already...but so thankful how well everything has gone...
Posted by Nola at 2:10 PM 4 comments
Thursday, May 28, 2009
Surgery--Boston--Day Three
Riley's surgery went as planned this morning. Dr. M ended up doing a lip adhesion on both sides to get them as symmetrical as possible and closed her gumline. She was pretty fussy went we got to see her in the PACU, but I think she was just hungry! She took 2oz glucose by syringe in the PACU then took 2oz milk by bottle when we got to our room. Riley then rested some before taking 2.75oz milk again by bottle. She is resting quietly now...I hope she is able to rest throughout the night and is not in much pain. The staff here is great and I know that we made the best decision by coming here! Right now Riley has a gauze that we keep saturating with iced saline to reduce swelling. I can't wait until it comes off tomorrow so I can get a good look at her sweet face! Thanks everyone for all of your prayers...please continue to pray for a quick recovery and as little pain as possible...
Oh, and Dr. M said we could probably come home after we're discharged on Saturday (Brock is very excited about that)!
Posted by Nola at 2:59 PM 3 comments
Wednesday, May 27, 2009
Boston--Day Two
Riley had pre-op this morning. We met with a nurse practitioner who assessed her, weighed her (9lbs 3oz) and took her vital signs. She told us a little about the surgery process. We then talked with anesthesia who just told us how Riley will be put to sleep tomorrow. Finally we met with Dr. Mulliken's nurse practitioner who explained in more detail about what will happen after surgery (wound care, feeding, etc.). Riley was so great during all of this, bright eyed and smiling some of the time, sleeping soundly the rest. Then Brock and I enjoyed some wonderful brick oven pizza. We then went for Riley to have an ultrasound. She has a small dimple/skin fold on her sacrum and they wanted to make sure her spine is normal. It is! She was a perfect angel during the ultrasound and slept the whole time just like the tech wanted her to!
We're back at the hotel now, getting ready for tomorrow. Surgery is on for 7:30. Riley can have her last bottle of milk at 3am and some pedialyte at 5am. Please join us in praying for a safe, successful surgery and quick recovery for Riley...
Posted by Nola at 1:55 PM 3 comments
Tuesday, May 26, 2009
Boston--Day One
We left Atlanta bright and early this morning and arrived in Boston around lunch. Riley did so great on the flight and slept the whole way!
We just got back to the hotel from meeting with Dr. Mulliken. He says that her cleft is not as bad as he had initially thought from looking at some pictures I had sent him. He said that he *might* have not even done the surgery in two stages if he had seen her in person prior to now, but says that she will have a "superior result" from the surgeries. He plans on doing the lip adhesion on the left side, gum line closure on the left side and may even do a small lip adhesion on the right side and get both sides as even as possible. Surgery is scheduled for 7:30am on Thursday--Riley will be the first case.
We also got some more good news. Our pediatrician said that Riley had a submucous cleft palate, meaning that there is a cleft in her palate but it is covered by the tissue/lining of her mouth. Depending on severity, submucous cleft palates can require surgical repair just as if it were an open cleft palate. Dr. Mulliken says that Riley has a "very minor" submucous cleft and was very impressed that our pediatrician even found it. He does not feel that it will require surgical repair, although we won't be completely sure until we see how her speech develops (around 2 years old).
Please remember Riley in your prayers--especially Thursday morning. Thanks everyone...
Posted by Nola at 3:27 PM 4 comments
Wednesday, May 20, 2009
Check-ups and Portraits
Posted by Nola at 1:06 PM 5 comments
Thursday, May 14, 2009
When???
Posted by Nola at 8:30 AM 4 comments
Monday, May 11, 2009
Smiling?
Posted by Nola at 4:20 PM 1 comments