Surgery(s), Hospital Stay(s), First Day(s) of School(s)

Yes, I know the plural of surgery is surgeries-but it only seemed fitting to add the (s) to all of the words since that is what the last few months have entailed....

We've been busy to say the least. After Adalynn's pool party was such a success we decided that it was only fitting that Camden have a birthday pool party as well. He had a blast swimming and playing with all of his friends. It is hard having a summer birthday and getting invitations out to friends at school but by sending a small note at the end of the school year to every child asking their family to email me with contact information we were able to include some of the kids in his classroom. Happy 8th birthday Camden!

Happy 8th Birthday Camden

Pool Fun!!! Yes, this is the deep end (12 ft) and yes, all three have learned to swim!

Shortly after his birthday party Adalynn had her fifth surgery. We planned it so she could have a few months of summer fun and so that she would have time to recover before school started (not exactly how it worked out....more on that later). The surgery was scheduled for 5 hours and plans were to check out and repair 1-2 possible fistulas in her palate and for a nasal revision. Her left nostril was really flat and she has never moved much air through it. The fistulas caused a lot of nasal regurgitation (aka leaking oreos out her nose every time she ate them).

Taken the day before surgery. You can really tell how flat her nostril is.

 She did well with not being able to eat the morning of her surgery. She was still able to have clear fluids until 8:30, so we woke her up for a special Jell-O and Popsicle breakfast. We passed the time with a bubble bath, polish removal, and getting her baby doll ready for surgery (she got her first American Girl doll the weekend before). She was nervous and didn't really know what to expect.

Heading to Madison for surgery (with Addie her new American Girl doll she got right before her surgery).

When we got to the hospital, the "happy medicine" was given and she felt much calmer. We even got a few smiles! I went back with her and stayed until she was asleep.

waiting

She's so nervous (as are we)

And then the surgery began....

and we waited.....
and waited.....
and waited.....

Then the nurse came out and said the surgeon needed to speak with us on the phone. We were scared to death as we walked back to the nurses station! The surgeon talked to John (there was no way I could even hold the phone). She needed permission to take cartilage from the back of Adalynn's ear to be used in her nose. Sigh of relief.....she's okay......just not something that we expected to happen.

and so surgery continued.....

and we waited.....

Finally, almost 6 1/2 hours later, the surgeon came out. She was done! There were two fistulas in Adalynn's palate. Only one could be repaired. The other one is near an extra tooth in the middle of her palate that appears to be a permanent tooth and she didn't want to risk loosing the tooth. The one that could be repaired took a lot longer and was a lot bigger than what we thought (they weren't even sure if it was truly a hole or a shadow). After she finally got the palate done, she moved onto her nose which didn't want to cooperate. The surgeon said she kept getting it into place and then it would collapse (hence the need to take cartilage from her ear). She used the cartilage from Adalynn's ear to build up her nostril, which then made her lip stick out funny, so she had to go underneath her lip and hollow out some scar tissue that was left from her first surgery at 3 months old.

And about 7 hours after she was first taken back, we got to see her. She was so brave! Even when she woke up in recovery she just looked at the nurse and said "I want my mommy and daddy". He said she won the prize for being the best patient! No tears at all (at least from her). We moved up to her room where a beautiful quilt (from Project Linus) was waiting for her. The hospital was amazing and so was the staff. After two nights in the hospital we were finally able to go home!

finally done!

heading to the playroom the day after surgery...she hated "her pole"

Recovery went well. She was very swollen and in pain, but was eager to eat what she could within just a few days after surgery (she was on a soft palate diet for 2 1/2 weeks). We pureed tons of food for her (including tacos and pork chops) and she ate like a champ.

We were able to take the bandage off a few days after surgery.

a tiny smile 4 days post-op (this was the first one captured on film, though the first REAL smile after surgery was when she looked in the mirror for the first time after the bandage came off).

you can see the sutures in her ear...they were literally from the top all the way to the bottom

the nasal stint was held in with a stitch (the little yellow square you see is a piece of gauze holding the stitch).

secrets from my brother-5 days post-op

my beautiful babies!

home from the hospital....stint out!!!

cleaned up (after the stint was removed we were able to clean up some of the dried blood. She hated this process, but we had to do it 2-3 times a day for several days as her nose drained. There is a difference in her nostril for sure!

It was smooth sailing until day (or night) 15. She began running a fever and right above her lip was fairly hot and red. We initially went to the local ER since it was 11:30 at night per the surgeon on call's request, but they sent us onto the Madison ER who then admitted her back into the Children's Hospital. They think the fever stemmed from an infection in her lip and kept us for two days so she could have IV antibiotics. They did an ultrasound to rule out an abscess and monitored her. We followed up with her plastic surgeon's partner a few days later (her surgeon was in Thailand on a mission trip doing cleft-related surgeries and lectures). After a few weeks her regular surgeon was back and saw Adalynn and decided that she needed to get back in there and see what was going on.

you can really see the huge lump (and the extra tooth in her palate-which is thought to be permanent). The swelling in her lip is really pushing on her nostril and causing it to flatten (sigh.....)

Surgery #6 was scheduled! Initially they wanted to do it the day after Labor Day (aka the FIRST DAY OF SCHOOL). I said, no thank you! I didn't want her to miss her first day of kindergarten (or miss Broderick's first day of 5th grade and Camden's first day of 3rd grade).

First day of school (kindergarten, third, and fifth)

ready for kindergarten!

 My baby girl had her first day of kindergarten followed the next day by her sixth surgery....YUCK! She attempted to go back to school three days after surgery, but was still fairly swollen and in some pain so she didn't make it the whole day. The following Monday she had her second "first day" of school.
This surgery was scheduled later in the day, so we had another morning of a special breakfast...this time she chose chicken broth and a Popsicle. We then we headed back to the hospital. This time it was just Adalynn and myself. John stayed so he could get the boys off to school and still teach his classes. Her actual procedure would only take 45 minutes or so and we were home later that evening. 

On our way back to the hospital..she knows what's going to happen this time....the memories are too fresh in her mind.

"That silly doctor wrote on my face"

time to leave the hospital

3 days post-op....feeling better, but still a lot of swelling...heading to a football game and a friend's birthday party at the bowling alley (not much slows this little chick down).

Anyways, the surgeon removed a large mass of tissue (she called it a scar-ball) and sent it off to pathology to see what it was. We found out about a week later that it was just inflamed scar tissue and the doctor's are not really sure what caused it. Last week, we returned for another follow-up and Adalynn is developing another knot of scar tissue. We are going to try massage therapy for a few weeks to see if we can break it up. If we can't then Adalynn will have another procedure (not a surgery, so to speak, but she will be taken back to the OR for steroid injections and will have to be put to sleep). Prayers please.....

On a better note, Adalynn's name was selected in a drawing at the hospital for tickets to a Badger game. She and I got to sit on the field, along with 8 other children and one guest each for a recent game. She got a t-shirt, a signed football, lunch, and even a stuffed Clifford Dog. The boys (all three of them) we so jealous that she got to go. They didn't understand why it couldn't be a family thing. Broderick ended up having a football game at the same time (John coaches) so it wasn't an option for them to go anyway....maybe another time!

 back in Madison, but this time for FUN!!!

Adalynn, meet Bucky....Bucky, Adalynn

We had a blast together. It was great to go to Madison for some fun!

We were sooo close to the field!

exhausted!

So......there it is.....surgeries.....hospital stay(s), and first day(s) of school. Other than all of that (and my eye issues which resulted in a laser procedure to put a hole in my iris), football games, and our open house party, things have been fairly quiet. We are all getting back into the routine and enjoying the fall weather.

Thanks for continuing to check in on us.....I say I am going to get better at blogging, but then life gets busy. I apologize. We are still here....still living....still loving....and still on this amazing journey called life.

and today....just a small knot and slight swelling still left in her nose (doctor said that could take months to go away completely)

Thanks again for checking in on us!


Blessings,


Shannon