Genetics Appointment

On Friday we drove to a Denver-area children's hospital to meet with a genetics counselor and doctor. I honestly wasn't sure what the purpose of this appointment was, but even though we didn't gain a huge amount of information, I still think it was beneficial.

First things first: Verity has gained weight! As you may remember, we switched to a 24/7 continuous feed when we saw that she had been losing weight with all her terrible vomiting issues. In exactly one month, Verity gained 13ish ounces, so she is now 13 pounds, 3.1 ounces. And she is now exactly 2 feet long!

One wonderful thing: we were given a hard copy of the Care Book, which is a resource from SOFT (Support Organization for Trisomy 18, 13, and Related Disorders). I had started reading the online copy, but to get all 70-some pages in a printout was wonderful and told me right off that this doctor is up-to-date with the research!

As an aside, we ONLY support SOFT as a resource for those with trisomy conditions. There is another organization out there that is much more negative. If you feel led to support an organization, please, please, PLEASE ask someone before throwing your money at what seems to be a worthy cause but maybe isn't really what it seems to be.

Back to the appointment: We answered lots of questions, reviewed Verity's history, and talked about possible resources for us within the Children's Hospital network, some of which may be helpful but others maybe not as much because we are already getting great care in our more local area. The one piece of info that I think can help us tremendously is knowing about a couple of other ways to know for sure what Verity's caloric needs are--we can't seem to get her total intake up to the volume that the dietitian and GI doc would like to see, and I can't help but wonder if she really doesn't NEED that much. Clearly she is gaining weight, and she looks so incredibly healthy! (Praise God for that!)

We don't need to have a return visit for another year. Dr. L said that mostly he would like to check in to make sure that we can have the most up-to-date research and information and discuss Verity in particular and see what she might need. It was very refreshing to have such a perspective from someone in this field, as I have heard awful stories from uninformed doctors who make outdated assumptions. We are grateful that the many caregivers in Verity's life are so supportive and either already knowledgeable or else very willing to receive new information.

Another Transition

On Monday we received some news that has made my heart sad all week. A few months ago we learned that we were eligible to receive nursing care, and the process, once begun, went very quickly. Before we knew it, we had settled into a new routine that included Margie, our full-time nurse. Any doubts or concerns I had about this transition melted away, and before long, Margie felt like part of our family. She has utterly fallen in love with Verity and cares for her so tenderly.

And so it broke my heart when she told us on Monday that she had regretfully given her two-weeks' notice to the nursing agency. A work-from-home job that she had applied for before she even met us has come through for her, and in her words, "at her age" she feels this is a better work scenario for her for the long-term. I can tell she is heartsick about it, which only makes me feel even sadder. It's amazing how three short months could so completely change us all. Though I haven't really ever been able to nap as we half-joked about, it has been such a blessing to have consistent care for Verity, allowing me to focus more on homeschooling and mothering my other children. Having Margie attend various doctor's appointments and keep up with Verity's therapeutic exercises at home has been an extra bonus.

The nursing agency is setting up a meeting for us in a few days with a temporary nurse who is only available for 2 weeks but who can hopefully help fill in the gap while they find a more permanent nurse who will be a good fit. I'm almost sick about it--there are so many little things Margie just KNOWS and takes care of...the thought of "training" one person only to lose her and then "train" another person is exhausting and overwhelming. Meanwhile, I have heard horror stories from other Trisomy mamas of their nursing experiences, and I am still amazed that we had such "good luck" with our first experience! I know it was God's hand of direction, but still...other families are praying, too! Why we should have such a fabulous nurse our first time around and others are having difficulties is a mystery...and though I'm not superstitious, there is a sense of dread that THIS TIME things won't turn out as well. I need to keep praying and trusting, I know. God knew about this transition long before we did; He brought us Margie, and He can bring us another wonderful person whom we can love and who will love our Verity.

Pulmonology

Today, a visit to the newest member of Verity's Village: Dr. Tina, our pulmonologist. After chatting with other Trisomy moms, I am kind of amazed that we haven't made it into the Breathing Institute before now, especially since we already did a sleep study! I guess typically those are ordered and evaluated by a pulmonologist, but anyway, the important thing is we had a study AND that today we had the opportunity to speak with another specialist. Even though Verity has had oxygen at night, we have not noticed ANY improvement in her sleep patterns, and if anything, it has been even more difficult because she hates the nasal cannula!

Here are the notes from today's visit...but first, the exciting news: Verity is ALMOST to 13 pounds! Her weight today was 12lb, 15.4oz, a nearly 10-ounce gain since December 19 when we discovered she was losing weight. So, the continuous feed is working! (She has had a few vomiting episodes, but not nearly the volume as before--we can tell she still suffers from reflux, but at least she is keeping most of her food down.)

Dr. Tina would like Verity to go back to the sleep clinic, this time with the intention of looking at CPAP/BiPAP. She thinks we can do better with having Verity do some desensitization with a mask prior to going in, and then having the specialists adjust settings to see what works best for Verity. My only fear with all of this is...how will Verity suck on her pacifier with a mask?! LOL But hopefully if she is able to breathe well, she can sleep deeply and not wake every few minutes wanting her pacifier...?

Because Verity has not had any respiratory infections or pneumonia, Dr. Tina doesn't feel she needs a bronchoscopy at this time, something that most Trisomy 18 kiddos end up having (this is a test that requires sedation). I was reluctant to push for one just for the sake of having one--I really like this doctor and trust her judgment.

Finally, she is putting in a request for us to get another pulse-oximeter, which we haven't had since we turned ours in when we left Omaha. Our ENT didn't seem to think we needed one, even though Verity's sleep study showed her sats went as low as 74%!! So, I will be glad to have one so we can monitor her more regularly.

GI and Urology Test Updates

My poor baby is crying...so this will be as quick as I can make it.

The upper GI and SBFT showed that Verity's anatomy looks just fine, but stuff moves slowly through her system. Not surprising. Poor baby--that was a rough day, with them having to give her barium multiple times because she kept vomiting it out.

The good news is that she is doing very well with the 24-hour continuous feed. We are currently at 26ml/hour during the day and a bit lower at night (because she did struggle with reflux recently and we are being cautious). We are to increase by 1ml/hr every 2-3 days until we get to 30ml/hr, and then after she is stable with that amount, we will work on cutting the time down while maintaining the volume so that she can have some tube-free play time.

At the urology appointment today (which was scheduled because of her two UTIs in the fall), Verity weighed in at 12 pounds, 12.8 ounces! She was down to 12 pounds, 5.9 ounces when we last saw the GI on December 19.

Today was a hard day. Ted took the day off because the tests were up north, and we decided to have him take Verity with our nurse. I'm thankful he was able to do that--it sounds like it was an absolutely awful time. :-( The renal ultrasound went well. The VCUG got off to a rough start since they had to cath her FOUR TIMES, finally calling the urologist himself to do it. Grrrrrr.

The scan showed that she does have some renal reflux; the urologist called it a 3 out of 5 and at this point only wants to follow up with another ultrasound in 3 months unless she gets another UTI in the meantime.

As I said, it was a rough day, and there was much screaming, crying, vomiting (from the screaming and crying), and more screaming and crying. She is finally pretty quiet--she must be exhausted, poor dear. I know it will be painful when she urinates the next few times, so prayers for quick healing would be appreciated.

More thoughts later when I'm not so tired...