Life With Verity: Days 1 - 9

Daily summaries that I've been posting on Facebook...

February 28

Verity Irene is here!!! She's really, truly here!!! Wow, things moved quickly after we had a scare; she was transverse for awhile but finally turned and emerged with some help from a bit of pitocin. She is with her dad and big sis plus our photographer in the NICU on oxygen but doc says she's looking good overall. I'm eagerly awaiting her assessment and the wearing off of my epidural so I can join the crew. I have no specific stats, but it was about 4:10am and as Kenna predicted, she has dark hair. ❤ Praising God I got some precious moments with Verity before her heart rate dropped and they took her from me. I am confident she is in loving, capable hands--God Almighty's, first and foremost, and the wonderful, caring team our Heavenly Father assembled in this time and in this place. Whatever happens in the hours and days to come...I know Jesus has been with us every inch of this journey and will never leave us.

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Day 2 (March 1) 

All positive trends in the NICU! Feedings increased and after a few more the plan is to stop IV feedings and solely use tube (gavage) feedings. They are encouraging me to try nursing at that point, since Verity seems able and willing to suck as evidenced by her responses to the "Momsicles" we have given her. Lots of good cuddle time today with Mom, Dad, Grandma J, and big sisters Charis and Kenna. The rest of the crew will visit tomorrow. Thanks for the prayers!

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Day 3 (March 2)
Mommy is fighting a migraine today and is extra tired, so I'm taking over the NICU update!

My big brothers and sisters came this morning to hold me and get photos taken with me. The nurses kept talking about how amazing my siblings are, and I have to agree--I am one blessed little girl to have such a crew to love and take care of me. I can't wait for everyone to see the pictures, especially the ones of me wearing my little gown from Grandma J while lying on the special blanket my big sister Charis made for me.

All that excitement really wore me out, so I've been taking it easy today. I got some great cuddle time with my Daddy, which was a blessing since he has been running hither and yon and hadn't had as much time to hold me as my mommy. So we had some heart-to-heart time while Mommy moved from her hospital room into mine. I know the fold-out cot won't be as comfortable for her at night, but she's happy she can be with me around the clock.

Mommy got a nap after Daddy left in the afternoon, and then she tried nursing me. I was extra sleepy from all the excitement but happy to nuzzle and taste some milk. I'm getting my food through a tube in my nose, but maybe after awhile I'll get the hang of the nursing thing. Last night's weight check had me at 4 lbs, 14 oz, so they have increased my feedings to 35ml (up from 30). Mommy says pumping is going pretty well and hopes that before long we won't be using formula at all to supplement.

I still have oxygen flowing through a nasal cannula, but I heard the nurse practitioner say that we may not need it for too long. This would be amazing if it turns out that I don't! Most T18 babies need lots of help breathing, especially in early days and months.

All in all, not much has changed over the course of the day, but I am moving to a crib if my vitals look good at the 8pm assessment. This will make it easier for Mommy to pick me up and take care of me, even if I still have quite a few cords to deal with.

Oh, I'm supposed to tell you that I am peeing and pooping just great. In fact, you can ask my daddy about the huge explosion I gave him to celebrate his first Verity diaper change!

Tomorrow Mommy will meet with the genetic doctor to get more details about my heart conditions. She prefers to wait to share more information about that until after she has a better understanding of how my heart looks right now. I know she and Daddy are pretty sad to learn that I do have some heart problems, but I know they understand that God is in control and had a purpose for delaying that information.

Guess what! Mommy thinks I need my own Facebook page so that we can keep people updated more easily! What do you think??! If you like that idea, maybe you can give us some suggestions for what to name the page! We want to join other Trisomy families in sharing our adventures so that people can learn more and be encouraged.

I'm getting fussy now...all this updating is making me cranky. I want Mama to pay attention to me, so I'll quit for now. Sending love to all my adoring fans!! Thank you for your prayers!

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Day 5 (March 4)
Sorry we didn't do a day 4 update; there wasn't much to report as far as Verity's status, but in other news, yesterday she enjoyed a visit from the entire family plus had her first real bath (she was not impressed) and managed to let Mommy get a couple of stretches of decent sleep...which isn't saying much, since the previous night Mom was awake from midnight until 6am! :-O Let's just say Verity lets us know when she is not happy...

So the big news from today is that after lunch, they tried taking Verity off her oxygen because she was looking so good...and SHE'S STILL OFF!! It has been hours and she has had absolutely no issues whatsoever. In fact, I got a two-hour nap during this stint; wasn't sure I'd feel comfortable sleeping but obviously I was exhausted enough to crash, and when I woke to pump she was still as peaceful as could be. I am very encouraged...it's so nice to see her sweet little face!

Now the main thing is figuring out her feeds, assuming she continues to do well without additional oxygen support. She is still getting her feeds through a tube, primarily using my breastmilk with a little fortification. Though we've had some nursing attempts, she has not made any headway in this area, but I'm determined not to stress about it since I had no expectations going into all this.

And an addendum to today’s update:

Oh, my heart! Not only has Miss Verity been off oxygen all day, BUT ALSO she has regained some weight (up to 4lbs 14 oz from 4 lbs 9 oz last night) AND...drum roll, please...

She latched on and sucked during an attempted nursing session!! Granted, she only sucked a few times, but she did latch at least 3 separate times!!! Hope springs eternal. :-) God is good. He would still be good even if Verity weren't overcoming so many odds, but I am thankful that He is choosing to reveal His goodness in these particular matters!

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Day 6 (March 5)
What a day! Miss Verity had a slew of visitors, part of her adoring fan club who came to oooh and aaah and pray over her in person. Our pastors and their wives plus our weekly Life Group members came in two different groups, and it was such a blessing and encouragement to get to share Verity with them all and hear prayers spoken over her. Also, my dear friend Mimi drove three hours to surprise me for an overnight visit! The family (who already knew about this) prepared a guest room for her and I got to enjoy some time with her this evening and look forward to more girl talk tomorrow before she has to drive home!

As for Verity herself, the little diva had a very promising nursing session this afternoon, during which she latched, sucked, and swallowed multiple times. Granted, she slid off multiple times. But coming back on was her idea this time, and she didn't give up (nor did I, lol). Her nurses were perfect cheerleaders--you should have seen the excitement in our room, lol! They are all so proud of her, and so am I! The next two attempts were nothing at all like that, but we are still encouraged. If nothing else, I am wondering if we will at LEAST be able to bottle feed her? Something to chat with the doctor about tomorrow.

There are a couple of concerns, hopefully nothing too serious, but nonetheless things to stay on top of.

1. This evening we had a few incidents of Verity's O2 levels dipping, with sats in the 80s instead of the usual high 90s. This is the first time that has happened since she came off oxygen. One nurse posited that she may have had a bit of reflux the first time it happened; it dipped and then came back up when we lay her back down in her crib. Verity really hasn't had any spitting up/reflux issues before, but perhaps the extra milk during our nursing attempts on top of the tube feedings was too much?

2. Verity's left eye has been crusty all day, with more ooze appearing this evening. She was not thrilled about getting this checked out, but we are going to try some ointment. It's possible that it is somehow related to the tubing in her nostril, currently on the same side, but the tubing was due to change sides anyway with tonight's cares, so hopefully that will help.

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Day 7 (March 6)
Verity seems to be in a "sleep all day, party all night" mode. It's hard on Mom getting 5 and 10-minute snoozes over a sustained period of time! But that's what 2:00-8:00am looks like around here!

Nothing big today...we still continue to try breastfeeding when we can. I did talk to the lactation consultant about whether the volume of tube feedings is appropriate given the slower growth rate of our T18 babies, and we discussed with the nutritionist as well. We decided that really nothing needs to change at this point; but I was encouraged that they listened to my thoughts and validated them. Verity tolerates her feeds well and acts hungry beforehand. Though nursing is a hit or miss activity, we are taking it slowly and at least enjoy skin-to-skin time. (Ok, I enjoy it, and she tolerates a good portion of it, sometimes screaming instead of snuggling. Sigh. She's very opinionated!)

Slower day for visitors, which was just fine after a big day yesterday. Mimi and I got to spend morning through lunchtime together before she drove home, and I got a nap before a CFA dinner, which I enjoyed with Ted, his mom, Arden, Lucan, and Zaden. The little boys got their first turn actually holding Verity and were utterly delighted. It was so fun to spend more one-on-one time with them. I read books to them in the lounge while Arden and Grandma had some time with Verity, and then we gave her a bath before saying goodnight. This photo shows her clean, fluffy hair and exhausted look afterward, lol. All in all, a good day.

Tomorrow marks a week since her birth!!! ❤

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Day 8 (March 7)
Verity is one week old today! Some quick updates because Mama didn't get a nap today...

* Back up to birth weight! 5lbs, 3 oz

* Recreational nursing continues to go well. No rush...our little girl needs to conserve her energy!

* Doc's goal for the next 7 days: continue monitoring her oxygen sats. We want to be sure her heart isn't overloaded.

* Meeting with the cardiologist scheduled for Thursday morning.

* Verity has only had fortified Mama Milk the last couple of days, and my stash of pumped milk in the fridge is finally overtaking her daily intake (45ml every 3 hours). Woot! Goodbye, formula! Grandma Irene Keist made the astute observation that perhaps the formula wasn't settling as well with Verity's tummy, which could possibly account for her fussiness during her poops! That would be fantastic if we could have a non-fussy period tonight...we will see...

* Today's visitors: family = Ted, Charis, Arden, Kenna, Zaden, and Seanin. I enjoyed snuggling my chunky boy Seanin (whom I haven't seen in person since Friday) and reading tons and tons of books from the NICU book cart to him and Zaden. Friends = Mike & Debra Trunick, who brought some stinkin' cute outfits that I can't wait to see Verity wear! Grow, Verity, grow!

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Day 9 (March 8)
Verity has had a great day, really no updates for her though.

My day: Crazy full morning caring for Verity and FaceTime with my sweet teenage daughter; breakfast not until 10am. Found the hospital showers with the help of my NICU neighbor and sister in Christ, Sarah. Hospital Cafeteria lunch date with my hubby, our first one-on-one time with no kids/responsibilities since Verity arrived, followed by decent coffee & cornetti (but not even close to our Italian favorites). Awesome afternoon nap thanks to a friend holding Verity so I could sleep in peace. Quiet dinner on my own and skin-to-skin time with Verity. Visit with my neighbor to see how her babe is doing and share chocolate. Short nap before midnight pumping session.