Lillian Devra Seidel
 |
Our sweet daughter Lily was born on May 26, 2001. After a normal pregnancy I was induced because Lily was two weeks overdue. We ended up having a c-section after a failed induction and 20 hours of labor. As soon as Lily was born we noticed she had a different-sounding cry, and the doctors found a cleft palate. She was diagnosed with Pierre-Robin sequence, and later was found to have partial trisomy of her 7th chromosome. She struggled with breathing and feeding issues for 4 weeks in the NICU, then got her trach and g-tube on June 25. She did great after her surgeries, and we finally got to bring her home with us on July 23, 2001. Life has been a daily adventure for the past nine months, but we are celebrating every small success and every new thing she is able to do. Lily's cleft palate was repaired on December 20, 2001, and we are hoping and praying to be able to try decannulation sometime soon. In the meantime, she's learning lots of new stuff, keeping us charmed, and having fun being the center of everybody's attention!
 |
 |
Update, December 2002: It is hard to believe that Lily is a year and a half old now! The past year has been a crazy one; it is amazing that so much can happen in such a short period of time. Lily has kept us pretty busy; she has had two kidney infections, several respiratory infections, two procedures to correct vesicoureteral reflux, a re-do of her cleft palate repair, two sets of ear tubes placed, and a little-too-exciting anaphylactic reaction to her chickenpox vaccine. (It's never a good thing to leave your one-year-old checkup in an ambulance!) We had a rough spring and summer; it seemed like Lily was sick more than she was well, and we were all feeling a little worn out. We had quite an adventure in March of this year; her doctors here in Atlanta thought she was ready for decannulation. Lily did alright without her trach for a day or so, but had a lot of trouble breathing when she was asleep. We had to rush her back to the hospital 12 hours after we were discharged, when she kept having longer and longer apneic spells and her O2 sats were in the 70's. They had to take her back to the operating room to put the trach back in because the stoma had already closed after 4 days. After this nightmare, we decided to go back up to Cincinnati for a second opinion (Lily was born in Cincinnati and had her trach put in by Dr. Willging, one of Dr. Cotton's partners). Dr. Willging was able to tell us what the problem was right away; Lily has about 70% collapse of her anterior tracheal wall, and will need reconstruction with an ear cartilage graft. We originally had that surgery scheduled for August 2002, but Lily decided she would rather spend a few days in the Atlanta ICU with tracheobronchitis. We're going to try again in the spring of 2003.
Fortunately the past few months have been much healthier! Our little family is finally starting to feel more like a family and less like two scared new parents trying to take care of a sick baby. Other trach parents told us in the beginning that things would get easier with time; we didn't believe them, but now we realize they were right. We barely notice the trach when Lily is well, and getting used to her having it has allowed us to spend much more time and energy on just enjoying our daughter. We still have good days and bad days, but the good days are far outnumbering the bad at this point, thankfully. Lily really brings sunshine to every day; she is such a charmer and is so tickled with all the attention she gets from her family, our friends, and even total strangers. She works so hard to make progress, and is so proud of herself when she does something new (her latest accomplishment is being able to stand up with some help from us). To say we love her and are proud of her is quite an understatement. She's an amazing little girl, and we are so incredibly grateful that we are lucky enough to be her Mommy and Daddy.
 |
 |
Update February 2005: Wow, it’s been quite a while since I updated Lily’s page. I can't believe Lily is going to be 4 YEARS OLD this year! The past two years have been pretty eventful and have gone by so fast. We took Lily back up to Cincinnati in March of 2003 for what we thought was going to be an LTP. To everyone’s surprise, Lily’s tracheal collapse had completely resolved at that point, so no surgery was necessary. We started capping Lily’s trach while she was awake, which she tolerated with no problem for the next year and a half, but she would immediately start obstructing and having apneic episodes when she was asleep. We decided that living for decannulation was driving us all crazy, so we tried to put that idea on the back burner and concentrate on other things, like Lily becoming a big sister. Her brother Benjamin was born on October 10, 2003. Once we started getting adjusted to being a family of 4 (which took most of the next year!) we tried to readdress Lily’s breathing issues. She had a sleep study in June of 2004 where she had 323 apneic episodes in 6 miserable hours; no-one here in Atlanta seemed to have an explanation for why she was getting worse instead of better, as we had expected would happen as she got older and bigger. We did one more trip up to our trusted friends in Cincinnati, and asked Dr. Willging if Lily’s adenoids could be responsible for her sleep apnea. It was something we had been asking her Atlanta doctors about for 2 ½ years. Dr. Willging offered to go ahead and remove Lily’s adenoids after doing her routine bronchoscopy, hoping that it would make some difference in her airway issues. Some difference indeed! The change was almost instantaneous; a week or so after her surgery we tried capping Lily’s trach while she was asleep and for the first time in her life, she slept quietly and comfortably without the help of her tracheostomy. We did another sleep study soon afterwards, where Lily unbelieveably had ZERO apneic episodes while asleep and capped (compared to 323 three months earlier).
 |
The next few months were a whirlwind. Lily was decannulated successfully on November 15, 2004. Her stoma still hasn’t completely closed, so she will probably need a stoma revision surgery sometime this spring, but otherwise she is doing amazingly well. She and her brother Benjamin (now 17 months) are best buddies, and watching him get into trouble has been very inspiring for Lily. She isn’t walking or crawling, but she is no longer immobile! She scoots around the house chasing Benjamin around and exploring. It is so weird to look around and say “Where’d Lily go???” after having her not moving at all for three years. She is making good progress in her gait trainer, and her therapists hope she will walk someday. In the meantime, we’re trying to help Lily learn how to eat more by mouth (she takes a few bites here and there but is mostly still tubefed), and are working on communication skills (she isn’t talking, although that doesn’t mean, she is QUIET by any means!).
Although Lily finally has her little decannulation star next to her picture on Aaron’s page, we still feel like part of the Tracheostomy.com family and always will. It is not an exaggeration to say that this website, along with the support, encouragement and information gained from all the wonderful families on the message board, have gotten us through the past three and a half years. We’ve made such wonderful friends here and can’t imagine our lives without all of you in it.
 |
Kindest regards,
Erica and David Seidel
