Verity's Next Big Thing

Verity's tenotomy surgery and ensuing cast (and cast removal) adventures seemed to dominate our November and December posts in her group. So not too many people know about our visits to her ENT and the sleep doctor in mid to late December, a long-awaited follow-up to the sleep study she had in September.

Immediately after her study was over--as in, that very same afternoon--we received a phone call from the nurses on duty who had read over the report by the respiratory therapist who observed Verity overnight. The study still indicated severe obstructive sleep apnea (OSA), and we were instructed to continue administering oxygen via nasal cannula at night or during naps as needed.

This was somewhat surprising news: Verity's sleep patterns seemed much improved, and she didn't exhibit any of the typical signs of OSA such as snoring. We had thought reflux was the culprit of the obstruction from months past, and with the start of the continuous feed and significant reduction of vomiting during January through the summer, we thought we were on the right track.

Interestingly, though, as we started monitoring Verity with the pulse oximeter and having oxygen at the ready, we noticed that she either had a number of nights in a row during which her saturations would be in the high 90s without oxygen, OR she would have noticeable snoring and need even more oxygen than originally recommended (only 1/32 - 1/16L). We resigned ourselves to having to wait for more information, since the "soonest" they could get us in to see her doctors was December, nearly 3 months after the sleep study! Meanwhile, we were grateful for a fairly consistent night nurse schedule as well as a friend who filled in (and still does fill in) to give Verity care and monitoring during the night. (As an aside, nowadays Verity does need oxygen almost all the time during her naps and at night. It can fluctuate between 1/32 - 1/8L, only needing more if she is fighting a respiratory illness, which, thankfully, has only happened a couple of times this season, and without a hospital stay! Verity does snore pretty substantially, fairly often, though positioning does affect this of course.)

So our first respiratory-related visit in December was with the ENT, who did a quick upper airway scope through her nose right there in the office, revealing nothing other than inflammation from reflux. (That answered my question of whether reflux was still an ongoing issue--clearly it is, even though we don't always see it coming OUT.) He did decide to put her on some nasal drops (Flonase) to help with some swelling to see if that would help (it hasn't noticeably). And then he said we would do a bronchoscopy (evaluation of the airway) to take a closer look at what is causing the obstruction.

A week later we saw the sleep clinic doctor, and she agreed with the ENT that a pulmonologist should be on board with the bronch, so together they have coordinated their schedules for the procedure, which will be while Verity is fully sedated. If the ENT sees something that can be corrected surgically (enlarged tonsils or adenoids, for example), he will do the surgery while Verity is already sedated. Meanwhile, the pulmonologist will check Verity's lungs, taking fluid samples for examination/culturing. (This is called a bronchial lavage, or lung washing. Sounds fun, eh?!)

The plan is to repeat a sleep study at least 6 weeks following the bronchoscopy to see if her OSA has improved. If it has not, then we will move toward fitting her for CPAP. Since Verity is still so tiny, the sleep doctor is reluctant to make that our first step...or rather, our next step, I guess, since we have been addressing this issue for over a year now.

These procedures and surgeries are pretty common in the Trisomy community, as our kiddos are smaller than usual but their tonsils and adenoids may continue to grow at a more "normal" rate. Still, it's always concerning when our little ones must undergo anesthesia--thankfully we have now noted CLEARLY in Verity's records that she is not to be given fentanyl!

Please pray with us for the February 5 procedure and recovery afterward. Thank you in advance!!

How Little We Knew!

As we begin a new year and look forward to Verity's 2nd birthday in less than 2 months, I can't help feeling rather sentimental. Three years ago I had no idea what kind of a roller coaster journey lay ahead of us. Two years ago I was pensive and terrified in the final stretch of a precarious pregnancy. One year ago I was astonished and delighted that we were approaching that huge milestone, The First Birthday, which we heard only 5-10% of Trisomy 18 babies ever reached.

I thought my heart was full being the mother of 8 wonderful children. Now? Now it's absolutely overflowing! Getting to be Verity's mommy is icing on the cake of my personal journey in motherhood. I'm so thankful God prepared us to be her special family.

I remember the terrifying days following her confirmed diagnosis halfway through my pregnancy. We thought we would have to bury our baby shortly after her arrival. How little we knew how strong our baby would prove to be!

I remember the secret fears of not knowing how to take care of this different child, even wondering if I could possibly love her as much as my other children. How unexpected the journey of becoming an expert in Verity's care simply because we love her unconditionally!

I remember the dread and anxiety looking at the countless unknowns. The "what ifs" threatened to overtake me and carry me into a sea of depression and despair. How little I fathomed what joy this small but mighty bundle would bring to us all!

Verity Irene is plunging headlong toward her 2nd birthday (Feb. 28). She is not a scary statistic. She is a beautiful, joyful, playful little girl. She completes our family. She touches the hearts of strangers. She has made us all better people simply for being part of our lives. When I was pregnant with her, I read similar testimonies from other special needs families, some of whom have grown very dear to us over the past couple of years as we have gotten involved in online communities. I clung to those words, other people's stories of love and joy and hope. And slowly I began to dare to believe that maybe...just maybe...someday that would be OUR story, too.

And now--it is. It has been all along, really. Perhaps at times we were so busy trying to survive we didn't realize what was happening...the struggles and fears and difficulties only highlighted the beautiful tapestry woven with threads of love and joy and hope.

If you or someone you know has received a scary diagnosis for an unborn or recently born child...please know first of all that you are not alone--you're not alone with this specific diagnosis, and you're not alone in feeling all the strange, unfamiliar, even contradictory emotions that seem to be overtaking your soul. Have courage--dig beyond the statistics and find the families who will become your tribe, those who are already walking the path you've been unceremoniously dumped on.

Most of all, reach out to the One who created you AND your child. Know that He never makes mistakes. There is purpose far beyond what we can see and touch.

And it is GOOD.