My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Tuesday, June 20, 2017

A Glimpse into a...Normal...?!...Morning

I have so many unwritten posts I'd love to share on this blog, if for no other reason than to sort through my own often contradictory thoughts and feelings. There seems to be continuous material of the regular updating sort, news from appointments and so on, and since I so rarely have both of my hands free (not to mention my lap) at the same time, I don't really have the chance to sit down and type the way I did during my pregnancy. Not only does Verity demand my hands and lap, but now that she is very much present in our lives, our other younger ones seem to be even more needy, somehow paranoid that Mom is going to leave again, and so they vie for my hands, lap, and attention more than ever.

Anyway. I posted the following as my Facebook status earlier this morning, and I thought it was worth copying and sharing here for those who don't use Facebook or who missed the update (how is it that we sometimes feel more unconnected than ever despite all the social media outlets?!).


A glimpse into my morning, as I fumble around following a night of being awakened 1-2 times every hour...I hope it can bring some smiles and encouragement to you, even if only by thinking "Thank goodness I'm not in her shoes," LOL!

7:45--begin prepping Verity's 8am feeding by changing out the feeding pump bag and warming her milk. Quiet kitchen aside from...some...odd noises?? Ice maker?? Huh.

7:55--start the dishwasher and prepare to bottle feed Verity along with her pump feeding

7:56--shriek in terror as an unexpected flash of fur skitters across the kitchen floor. MOUSE! This explains those noises; the dishwasher must have "flushed" it out of its hiding spot.

7:57--somewhat frantic search for the beast, although I have no idea what to do with it if I were to find it; I'd almost prefer to let it disappear...I'm sure the neighborhood cats that poop in our yard can take care of it as soon as it finds its way outside...

8:00--return to Verity, start her pump feeding, pick her up to hold her and bottle feed her.

8:10--we have not made much progress with bottle feeding, but Verity is very much wide awake and not unhappy, so I'm enjoying this time with her on my lap.

8:15--Verity unconcernedly relieves her bowels. Ummmmm. I really do not like what I am feeling on my BARE LEGS!!!! At least she was lying across my bare legs instead of my shorts?! Uuuuuuggggggggghhhhhhh. Holler for help finding and bringing baby wipes.

8:20 and following--we have finally located wipes and I am cleaning my legs and preparing to clean Verity. This is a ridiculously long process as we try to extricate her from her poopy night dress and keep the feeding pump away from the poo. Adding to the chaos: the feeding pump starts chirping that it's out of food, because I haven't had a chance to pour from the bottle the remainder of milk that Verity didn't take during the bottle feeding portion of our time together. This means there is now air in the line and I need to disconnect from her g-tube, prime the tubing, and restart the pump. Easy enough, but it takes time and I am working with a wiggly, poopy baby and her poopy mess of a diaper, dress, changing pad, etc.

Meanwhile...upstairs...Rhema is waiting in her crib (I usually try to get her ready for the day and in her high chair before the 8am feeding, but we got sidetracked today). Bless her heart. She waits patiently today (not always the case) until I can get up there with Verity, who obviously needs a change of clothes. Verity gets a new outfit and lies contentedly on her tummy while I retrieve Rhema. She ALSO is a poopy mess. (Send note to husband: we are nearly out of wipes, and THAT is a pooptastrophe.)

Back downstairs...two girls with clean bottoms and clothes. Rhema is ready for cereal. I pray with her (Lord knows we need a lot of prayer today and every day), the 3rd or 4th little breakfast prayer I've done since it is summer and my younger children have apparently conspired to come to the kitchen at completely random times rather than in a convenient herd, when they can help one another. (Note to self: this needs to change! It may be summer, but Mama needs some kind of consistent schedule!!)

Verity is in the swing. Rhema is eating. Seanin (3yo) is off sulking because I wouldn't copy a coloring page for him. Zaden (5yo) is still waiting (with extraordinary patience!!!) for me to get a new jar of milk for him. Doh! I take care of him and praise him for waiting so patiently without adding to the meltdowns we've already experienced this morning. I start a load of laundry--hooray for me for procrastinating so that I could add the poo items to the load! The oven timer is going off--time to get the bread out of the oven before it gets so hard no one wants it for sandwiches at lunch time.

Reposition Verity in the swing--propping the pacifier back in her mouth. Clean Rhema's sticky hands. Try to placate the 3yo who is still sulking over a nonexistent coloring page. Decide to skip breakfast and fast because it's approaching 9:30 and Zaden is now asking to do his Bible Bee study for the day, and how can I say no to that?! Hold Rhema in my lap while listening (and helping) as Zaden reads aloud Genesis 1:6-19 from my ESV phone app. I'd prefer a real Bible, but my ESV is upstairs and I can't afford to go get it--another crisis would certainly ensue, and poor Zaden would be waiting for me YET AGAIN. We get through lesson 1 of week 3 (yay--this child is right on schedule!) and are reminded that what God made is GOOD and that He is OMNIPRESENT.

This means that GOD is PRESENT in all of this mess and chaos! And unlike Adam and Eve, I don't need to feel ashamed and hide, because my Savior has already covered all my sins. I welcome the reminder that He sees me in the muck and loves me despite my heavy sighs over poop messes and inward laments about just wanting to sit and eat in peace. I pull the 3yo on my lap and assure him we will have some special time together after I pump milk for Verity and eat my breakfast (now at 10am) that my dear 16yo daughter made for me.

And with that...I will sign off and eat said breakfast and hopefully have some time to talk and plan the day with my teens! (Lest you think they've been lazing in bed all morning, Tobin has already finished history and math, Charis has cooked us breakfast, and...actually, I have no idea what Arden has done, lol. 10yo Kenna was upstairs helping me during the mouse and baby wipe crises! I really do have awesome and helpful kids...of all ages.)

Tuesday, June 13, 2017

Children's Developmental Clinic

At the end of May we had the opportunity to spend the morning in the Children's Developmental Clinic, an all-in-one-day approach where various doctors came to our exam room instead of us going all over the place to visit with specialists. We had been referred to this specialty clinic back during our NICU stay, when we met with the geneticist who works with this team. Anyway...initially our appointment had been set for July, AFTER our moving date! Thankfully we caught the mistake (our own paperwork listed June as the appointment date), and they were able to work us in May 31.

Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)

As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.

We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!

Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.

Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.

The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]

The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."

Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!

So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.