A Year of Firsts

It's been quite a year. Though we've experienced many firsts in our years of parenting, our adventure with Verity has found us swinging between typical baby firsts on the one hand and...on the other hand...utterly foreign firsts which have somehow turned into our new normal. And while we have yet to see Verity reach certain milestones that our other babies may have reached or even surpassed by their first birthdays, the fact remains: we cherish and treasure each FIRST from this past year.

The first time we saw our tiny babe and heard her little cry...

The first time one of our babies went from birthing room to NICU...

The first moment her brothers and sisters met Verity...

Our first experience with a feeding tube...

Our first night at home with a myriad of cords and machines...

Our first trip with Verity to the ER...

Verity's first church service (which also happened to be her dedication)...

Her first casts...

Her first Easter...

Her first surgery...

Her first GI tests...

Her first boots and bar (soon followed by her first therapy sessions)...

Her first smiles (at 4 months old)...

Her first Fourth of July...

Her first move...

Her first Thanksgiving...

Her first sleep study...

Her first Christmas...

Her first New Year...

Her first Valentine's Day...

And soon...very soon...on February 28, her very first birthday...

Verity, you are the FIRST baby we have had the privilege of experiencing such a roller coaster of a first year with! You have taught us so much, sweet girl. I know I'm not the first person to say this, but you have touched more lives in your short time on earth than you can ever know. We will treasure each and every FIRST the Lord our God gives us with you.

We love because He first loved us...1 John 4:19.

Living the IF

A year ago I felt the weight of my heavy pregnant body a little bit less than the weight of the uncertainty and dread that had been pressing on me ever since Verity's prenatal diagnosis. As much as I tried to be hopeful and faith-full, the unknown stole so much joy from those final weeks of waiting for the arrival of our sweet baby, a precious little girl whose very existence brought more ambiguity than any other anticipated event of our lives.

At the same time, I couldn't help but be grateful that we did receive Verity's diagnosis early, even though a prenatal diagnosis can sometimes actually be detrimental. The last few months of my pregnancy allowed me to research and prepare myself and my family for some of those "What ifs" that lay ahead of us:

What IF our baby actually lives instead of dies?
What IF we bring her home from the hospital?
What IF we go from parenting 8 healthy kids to adding one more...with special needs?

What in the world would that look like??

Well...what does our life look like now?! Because we are living the IF.

Our baby IS alive. We DID bring her home from the hospital. We now have NINE children...and yes, one of them has special needs!

So what does our life look like?

It looks like bottles and pump parts in and around the sink, waiting to be washed or drip drying on the rack.
It looks like once-unfamiliar equipment (feeding pump, pulse oximeter, suction machine) being part of daily life.
It looks like an impressive binder and filing system to hold never-ending medical paperwork.
It looks like therapy sessions twice a week and specialty appointments several times a month.
It looks like parents falling asleep in the middle of meetings and movies.
It looks like brothers and sisters coming and going, kissing Verity, playing with her, singing to her.
It looks like jumping up and down when Verity gains a few ounces or reaches for a toy.
It looks like cuddle sessions instead of the "shoulds:" I "should" be cleaning; I "should" be working; I "should" be prepping dinner.

It looks like love
and laughter
and living in the moment
and appreciating the little things.

And yes...sometimes it looks like tears
and tantrums
and turmoil
and terrifying moments.

I can't lie: this isn't an easy life. It's not what we would have chosen. But it IS what we choose now, over and over, day after day. "Living the if" has changed our lives for the better. "Living the if" means living in the grace and strength of a God who created Verity perfectly, whose plans and purposes reach far beyond our comfort zone. "Living the if" keeps us humbly walking in the path of Christ, who allowed Himself to be broken and poured out on our behalf.

I suppose it wouldn't be entirely honest to close there, because, as you might imagine, our present day reality doesn't mean that we don't still live with a different set of "What ifs." And the truth is, I still wrestle with the reality that "Living the IF" for our family means something entirely different than many other Trisomy families have experienced. But...for now...I choose to focus on the celebration of life in this, Verity's birthday month, and instead will save that topic for another day.

Random Tidbits

So much happening these days!

* Verity is 11 MONTHS OLD! That means we are on a huge countdown to her first birthday and party! Her actual birthday is February 28, but we will celebrate with an open-house-style party on March 3. Yikes! Only 4 weeks to plan this extremely special birthday celebration!

* We missed our nurse Margie this past week but are happy for her to get a work-from-home job. She did agree to come help us out now and then so Ted and I can sneak away for a date afternoon. (Dates are extremely hard to come by these days...)

* An LPN came Wednesday and Thursday to help fill in since her kiddo was in the hospital. She was very sweet and adored playing with Verity. So we did get some schoolwork done after all.

* We interviewed a new nurse who will start full time on Monday. It seems like a good set-up...praying that all goes well as we transition next week. Margie set the bar high!!!

* We also interviewed a night nurse who will start NEXT weekend working Sunday and Monday nights. Two nights of sleep IN A ROW!! I love this lady and am so excited to have her help with Verity. She is someone who is a kindred spirit to me in many, many ways.

* Verity is reaching for toys and rolling, not completely all the way, but definitely rolling back and forth and has managed to roll from tummy to side several times. (We usually have to position her arms for her to do this.)

* Nights continue to be difficult, although we had a "good" night Tuesday, only waking 3 times.

* Verity is growing like a weed! Some of her pants/jammies are getting too short! We haven't weighed or measured her since January 22, but at that point she was 13 pounds, 4.1 ounces and 62 cm long (just over 2 feet).

* Pretty sure she is teething, although we've said that for a few months now. She doesn't yet have any teeth, but this past week she has been a drool monster and loves having her gums rubbed! I don't know that she's really been any more fussy than usual, though.

* We are making gains with her head control, and with her body growth has come a sturdiness that wasn't there before. Her once tightly clenched fists are so much looser, but she still holds her hands in the fisted position, though her fingers do wiggle quite a bit.

* Here you can see Verity sitting in Rhema's high chair like a big girl! She can't tolerate this for TOO long yet, but it's so fun to have her UP close to us at the table instead of down in her seat on the floor!

* This is a Squiggle Mat, a special needs item that our secondary insurance will cover. It will take up to 2 months to actually get it, but Verity will be able to use it for quite some time. The in-home therapist and equipment specialist brought it in last week to see if it was something that would work for us. And the answer is definitely YES!

* All in all, I think you can see that this little girl is most certainly compatible with LIFE! We are in awe at how far we have come over the last year. It has been, undoubtedly, the hardest year of our lives, but here we are, caring for a baby who had a 10% chance of reaching her first birthday. Stay tuned for more posts as we continue the countdown to ONE YEAR OLD!

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...