Rooming In

Today has been a practice-taking-care-of-Verity day without much help or intervention from the nurses (who are certainly available if we need anything). We chose to stay in our current room--when I learned that I didn't HAVE to move across the hall, well, that was a no-brainer. Why make more work for ourselves (not to mention the cleaning staff)?! We've been doing quite well all day! Officially we only needed to be on our own for 8 hours, but since the nurses aren't allowed to use our home pump, I'll be taking the night shift as well, so I will really get a feel for what it will be like to be on full-time Verity duty!

Verity's hearing screening was early this morning. It wasn't terribly conclusive; they will give us a "referral," which basically means their equipment wasn't able to determine that her hearing is "normal." This isn't too surprising; her ear canals are pretty tiny still. She will be screened again sometime in the next month or two, and if those results indicate any issues, we'll get a referral right then and there and go directly to an appointment with a specialist.

Meanwhile, the doctor checked in on us to see if we felt comfortable with a discharge tomorrow morning, to which we gave a resounding YES! Dr. Doom-and-Gloom (with whom I had an unfortunate consultation in November) will be on duty this weekend...I don't particularly want to stay in the NICU long enough to have to deal with him. (Although perhaps it would be good for him to meet Verity.) God in His sovereignty directed Verity's arrival to happen a couple of days after Dr. D&G completed his two-week rotation in the NICU; I am so incredibly thankful for Dr. A, who is so personable and compassionate and was the perfect fit for supporting our family and Verity. I wish she could be the one here to discharge us, but Dr. F is a nice enough doctor.

Anyway. Back to our "rooming in" experience. We totally have got this feeding thing DOWN! You can see proof of this in Verity's perfectly content demeanor:

She has been a dream baby! She has a bit of wake time around her feeds/diaper changes and has slept great. She fusses a bit but not much, and I've been able to do some "recreational nursing" times more so today than over the last few days, as she was extremely sleepy. Maybe in a later post I'll feature the home feeding pump for any inquiring minds who want to know, but I'm trying to keep this fairly brief!

Other than the feeding pump, we've also been using our pulse oximeter to monitor Verity's heart rate and oxygen saturations. Let me tell you, we will NOT be able to sleep through THAT alarm, lol. She's had just a few dips into the upper 80s but then it has climbed back up to the 90s very quickly, so thankfully that loud alarm only beeps 2-3 times. We have the electric suction machine on hand but haven't had to do anything beyond using a bulb syringe to get some boogers out after a few sneezes. :-) We can use the pulse oximeter as often as we like--definitely while we are sleeping so that we CAN sleep, and likely during the day if we are distracted with schooling or other activities while Verity naps nearby. But we don't HAVE to have it on all the time, and I very much am looking forward to holding our baby and allowing others to hold her without worrying about all these CORDS. Now...if we can just figure out how to deal with that feeding tube! I may end up taping it to her back in between feedings...any suggestions from folks who have done this before?!

I've heard good reports from the speech tournament our oldest two kids participated in this week. They drove home this evening with their grandma, who took over chaperone duty, allowing Ted to be home with the other 6 kids, driving back and forth to the hospital daily. Arden and Kenna watched the younger set so Ted could come to the hospital for the afternoon and be part of this rooming in experience. We are all incredibly excited that we will be reunited at HOME tomorrow!!! Oh, happy, happy day!!

Information Overload!

Happy two-week birthday, Verity! It's amazing to think of all that has happened in two very long, short weeks. As we wrap up Day 15 here in the NICU, I'm finally getting some quiet time to chronicle today's happenings. First, though, a gratuitous shot of our very-much-compatible-with-life baby girl. Ain't she something?!

It's amazing how even a few ounces of weight gain can make a wee one look so much more filled out! As of last night, Verity was 5lbs, 7 oz, up 4 ounces from her birth weight. Tonight, she was 5 lbs, 10oz! Wowza!

Last week we were hearing optimistic ideas about us heading home Monday or Tuesday of this week. That is obviously not happening, but given our circumstances, I am quite all right with staying put a few more days. Here's today's story summed up in a single photo:

Does that make your brain explode? Because part of me wants to walk away rather than have to deal with all of those cords. But the rational part, the part that tells me to take a deep breath because WE CAN DO THIS, reminds me that these machines represent LIFE for Verity. And this afternoon in the NICU was all about the machines.

First, though, we squeezed in some regular ol' family time. Ted brought 6 kids to the NICU in the late morning. (Our older two are with my mother-in-law at a speech and debate tournament this week.) Rhema had a chance to "hold" her baby sister for the first time...stinkin' cute:

I took Arden, our 13yo son, out of the NICU for a surprise milkshake treat so I could spend some one-on-one time with him. I got to tell him personally how much I appreciated hearing various reports about how amazingly helpful he has been with his siblings. He really has a gift with younger children! And since Charis and Tobin have been away so much with their school and church activities, Arden has had to pitch in extra to help out. I love that kid...and yes, I can still call him a kid, even though he's taller than I am and starting to shave...! Oy! And I noticed today that his voice is deeper. What the heck?! When did this happen???!

After we returned to the NICU, I finally got my lunch and had some time to discuss some things with Ted; we hadn't even begun learning about the aforementioned machines, but our heads were already spinning from dealing with other matters. Our pastor joined us in the family lounge for a short visit, having come to the hospital to pray with another family, and it was perfect timing and a much needed chance to talk and pray with him about some joys as well as concerns.

Meanwhile, our case worker had been busy behind the scenes doing paperwork, making phone calls, and setting up training times for us. First up, training with respiratory therapists on how to use two machines that will help us monitor and care for Verity: a pulse oximeter, which will help monitor her heart rate and oxygen saturations (allowing us to sleep more easily at night and monitor her at times when she may not be in the room with us), and an electric suction machine. A bulb syringe should work fine when things are "normal," but in the event Verity aspirates and we need to clear her out so she can breathe, this suction machine will be good to have. We anticipate it will be an "in case of emergency" tool and not something we will use terribly frequently, but after our research and hearing from other T18 parents, we felt it would be important to have at home. Thankfully our doctor was happy to prescribe whatever we felt we needed to take Verity home, and our case worker handled the paperwork for us.

The respiratory training took close to an hour. By time it was over, it was 4pm, and our littles were done. They had been so very good; we kept Seanin and Rhema in the conference room with us and let them color while we listened and asked questions and signed papers. The others were in the family lounge probably watching stupid cartoons. But since Ted had arrived five hours earlier, it had indeed been a long afternoon for them all, so they headed home, leaving me to consult with the doctor and then continue with feeding tube training.

The only real bit of news the doctor gave me was that he didn't want to hurry us out the door, but rather wait until everyone is comfortable that we are truly ready to go home and feel confident taking care of Verity on our own. He is thinking Friday for our discharge, which will give us a good 48 hours or so to practice with our own machines. I might even switch to one of the "rooming in" options tomorrow or Thursday night; rather than being in the NICU, I'd be just across the hall in a hotel type room, where the nurses are just a few feet away, allowing me to "practice" caring for Verity without any oversight unless I ask for help.

So the feeding tube training was me by myself with the nurse...at 4:30pm...and I had not had a nap all day--I listened as well as I could and absorbed a fair amount, I'm sure, but my eyes were starting to cross I was so tired! I do wish Ted could have been there, but he can join us for the 11am feeding tomorrow. I decided to wait to use our own feeding equipment until tomorrow when I can wake up and feel a bit more alert!

Between all the meetings and discussions, not to mention pumping sessions (because let's not forget that every 2.5-3 hours I have to sit and pump!), caring for Verity, and trying to do normal stuff like, oh, go to the bathroom and eat...I headed into the dinner hour feeling extremely exhausted and overwhelmed. Seriously, being Verity's mom is a full-time job. I KNOW there is a learning curve; I KNOW it will get easier after we practice. I fully believe that God allowed me to experience such dramatic feeding difficulties with Zaden and Rhema to help prepare me for this journey. I'd like to think that eventually Verity will be able to nurse, but the truth of the matter is that for the foreseeable future, she can't do that. Simply keeping Verity alive will require intense time, effort, and energy on my part and, to a certain extent, the rest of the family's as well.

But. Lord willing, it will be a season--Verity will grow bigger and stronger; I won't have to pump quite so frequently; maybe she will even be able to nurse. For now, I will do my best to squeeze in as much of this as possible...

Life in the NICU

I have a whole new understanding and appreciation of parents who live through NICU experiences...AND the nurses who walk alongside them. We've known a few families whose little ones were born prematurely and spent time in the NICU; we even visited one special little girl who appeared before we moved from Idaho to Ohio. But even that brief encounter wasn't enough to empathize with her parents, not really. We were brand new parents ourselves, still trying to figure out the parenting thing, and fully entering someone else's reality was difficult.

Now, with 9 deliveries under our belts, we have quite the resume when it comes to parenting and birthing experiences, but our whole journey with Verity has definitely taken us to new heights and depths. I decided to take a break from Verity updates (since there's really nothing new to report anyway) and give you a glimpse of our NICU life, which, I'm sure, is as different from others' NICU experiences as individual birth stories, but hopefully it will give you a small peek into this world that maybe is as foreign to you as it was to me up until two weeks ago!

THE SIGHTS

Our NICU has a nice set-up, with curtained-off individual rooms. Verity's incubator gave way to her crib after a few days, which is nice and gives us a bit more wiggle room--important on those days when the whole family comes to visit and we can use every spare square inch and then some.

Here's a view from my cot looking at Verity's bed: containers on the bottom of the crib cart have extra blankets and diapers. The counter has the computer (of course) where the nurses keep track of important things like how much poo a tiny human produces (the white, circular thing all the way to the left of the counter beside the keyboard is a scale for weighing the diapers). To the right of the keyboard is a handy milk-warmer; the nurses measure out Verity's milk in a large syringe and pop the syringe into the warmer. (As a side note, I am slowly gaining on Verity...rather than just pumping for the next feeding, I actually have a wee surplus. Still working on my supply, but we are doing well for now!) I don't think you can see them too well, but at the right is where I keep my stash of labels for the pumped milk, which I put in little capped cups and stick in the refrigerator (which is ONLY for breastmilk; there is a family-use fridge in the family lounge).

Below is a view from the computer corner, so you can see the narrow "closet" on the left with a cabinet beside it where I keep important things like dark chocolate and the make-up I never bother to put on. (WHY did I pack that in my hospital bag and not shampoo?!?!) The pumped milk fridge is underneath this counter. The curtain can pull all the way around the bed IF the hooks don't get stuck. I usually leave it partially open so I can see Verity's monitors when I'm lying down...as long as I leave my glasses within reach! My stash of essential oils and random personal items are on the window ledge, along with the cafeteria menu which I have pretty much memorized. (You know you've been in the NICU too long when you call in your breakfast order and the food-service operator asks you if you want honey with your coffee, saying, "Are you THAT lady?" LOL! My reputation proceeds me...we then had a lovely conversation about how her grandparents immigrated from Germany and raise bees!)

THE SOUNDS

A description of NICU life would certainly be incomplete without reference to the noises. Everything has a unique beep...and after watching a White Rabbit episode about annoying technology, I think it would be worth pointing out to the authorities that be how truly ineffective BEEPS are when it comes to notifying people about something important. (Research shows that people tend to tune out beeps and have a hard time identifying where the sound is coming from.)

In my little NICU world, the beeps that matter most are the ones that indicate alarming changes in Verity's stats. Here is a shot of her perfect, beautiful numbers--I thank God that these are, for the most part, unchanging, and when they do change, we have learned that there is good reason for the changes (at least for us...so far...I am well aware that things can take a sudden turn, but we have not had any emergencies during our time here). The top line (green) shows her heart rate; the blue, her oxygen saturation; and the yellow-ish, her respiratory rate. If any of these numbers goes above (heart rate) or below (oxygen) a certain level, alarms will start ringing. Other babies' stats pop up from time to time as well--monitoring is happening all the time, no matter where nurses or other caregivers are. It certainly makes it easier to rest when those too-brief opportunities to sleep come my way.

You can see the three tabs on Verity's chest and belly--the two on her chest monitor her heart rate, the one on her side monitors her breathing, and the padding on her left foot covers the oxygen monitor. If any of these wires get loosened (for example, when a baby is kicking her legs or someone is trying to actually cuddle the sweet child), it sets off the monitors. You guessed it--more beeps. Oh, sweet Verity, I can't wait to hold you without all these wires and attachments!!

Probably the most frequent beeping sound I hear is when this thing (shown below) is empty: this syringe gives Verity her milk through her feeding tube. It's a pretty awesome machine, with the ability to set the length of time the feeding will take (30 minutes in our case) and then steadily pump it into Verity's belly. When a minute is left, the machine beeps to tell us the feeding is almost over. And then when it IS over, the machine beeps. And beeps. And beeps. A nurse has to come and turn it off. It's an easy job, two buttons and the annoyance ends, but a NURSE has to turn it off. Not me, the mom slowly losing her mind when she just got back to sleep in the middle of the night.

And so when that beeping doesn't stop, I hit the nurse call button...which of course only adds to the chorus of beeps. Mamma mia. The NICU is not a very quiet place, and we haven't even started discussing wailing babies, chattering guests, wheeling carts, and housekeeping services. Or phone calls from the front desk to tell us visitors or food trays have arrived.

THE SMELLS

As you can probably imagine, we are in an extremely sterile environment. At any given time you can catch whiffs of hand sanitizer, and housekeeping comes around daily to wipe everything down with their cleaning supplies. I personally prefer my Thieves hand sanitizer, which not only smells better but helps my hands not be quite so dried out. And I have a diffuser in the corner of our room which usually has Peace & Calming essential oil blend in it. (I think I need that oil the most; after I gave birth, I pretty much wanted to drink it, lol. But I'm happy with rubbing it on at night and diffusing it.) And Miss Verity likes her Lavender oil...it has now happened multiple times that when she was fussing and nothing else seemed to help, I've waved the lid close to her nose and she instantly zonked out. I even have a nurse witness, lol. Love this stuff!

THE TASTES

I'll spare you descriptions of the tastes around here, lol. But for the inquiring minds, because I'm a breastfeeding mom, the hospital gives me 3 meals a day through room service. We aren't allowed to have trays in the NICU rooms, so I get a call from the front desk when my tray has arrived, go pick it up, and take it to the family lounge to eat. I think I've tried nearly everything on the menu; most things are decent, a few are worth having multiple times. I almost always have the same thing for breakfast (hence the operators anticipating my requests, lol), but I've tried to switch it up and be creative so I'm not too bored for lunch and dinner. There are pretty healthy choices available, and I have only ordered dessert a couple of times. I'm not starving by any means, and I've had some treats here and there when family bring me meals from The Outside World. And when I'm feeling stressed and overly tired...there's always my stash of dark chocolate...

THE ENVIRONMENT

The hospital showers are located maybe 1/4 of a mile away from the NICU. down a set of stairs and through winding corridors full of bustling people in scrubs if you go during the day but quite empty if you choose to shower at ungodly hours of the night. We stop at a service desk to request a set of towels, go up an elevator, and walk down a long hallway ominously labeled "Infectious Disease Control." The bathroom looks like something from an old YMCA building, but the showers are hot with fabulous water pressure, and really, that's all one needs, especially after sleeping on a hospital cot.

A huge oversight in the NICU ward itself is only having ONE bathroom for family members to use. One. As in ONE: one toilet, one sink, one door. This can be a problem when you have multiple moms having recently given birth needing to use the facilities...

The air is dry in here, so dry my hair flies with static and my lips are always chapped despite copious use of lip balm. The temperature is constant: warm in our NICU room, cold in the family lounge. I have windows but rarely open the blinds. I have no idea what the weather outside is like, although some days ago before the threatened snow storm (that wasn't), I walked around outside on the rooftop garden and enjoyed a small bit of nature amongst the city buildings.

THE PEOPLE

By far, the best thing about being in the NICU are the people: first of all, our little Verity, who is teaching us more and more about herself, and of course our wonderful family and friends who visit us, pray with and for us, and shower tons of love and blessings on Verity.

I've met some amazing moms--a mom of twins in the NICU and a little girl; moms of preemies who have had to learn to eat well enough to go home; a first-time mom who found herself in the terrifying position of not only a difficult and traumatic labor, but also fearing for her son's life when he did not breathe on his own for 15 minutes; a brave mom who carried twins as long as possible, knowing that one of them would likely not survive (he died after 11 days but his sister lives); an adoptive mom who drove from Alabama to be here when the birth mother delivered a baby boy. I've met supportive and proud dads, two of whom make a 3-hour drive to the hospital every weekend and take personal leave time so they can be with their wives and babies. One dad said this whole NICU experience has made him a better dad and husband; his wife (my NICU neighbor and soul sister) agrees with this and says it has brought their (blended) family closer together by God's grace.

And I've met some amazing care givers, from the front desk ladies who call me "Honey" and love hearing about our family and Verity's story to the fearless, tireless NICU nurses who have given us tender loving care each and every day. I am forever grateful that Dr. A, our NICU doctor, "happened" to be on her two-week rotation during Verity's 2 weeks here; God certainly answered our prayers for a supportive doctor and caregivers.

The last two weeks have been incredibly hard in some ways and incredibly meaningful as I have caught glimpses of glory in unexpected places. I've shed some tears of exhaustion, fear, and frustration to be sure...but God's presence is oh-so-tangible even in this bustling, beeping, sterile environment. I'm grateful for the opportunity to be put in a cleft of the rock, covered with God's hand, and allowed to see even a fraction of His glory. (Exodus 33:21-23) Surely He has made His goodness pass before us and proclaimed His name (Ex. 33:19).

The "H" Word

Days 10 and 11
Aside from meeting with the cardiologists yesterday morning, the big news was that we heard the "H" word--HOME. Dr. A had a plan for getting us HOME early next week! I am combining these two days' updates because much of today's activity came out of discussions we had yesterday.

So, the doctor's goals and ours are the same: to get us home soon, but more importantly, to get us home safely. I so appreciate how clearly everyone is rooting for Verity to thrive and are working with her best interests in mind. This is all too often NOT the case for Trisomy families, and sadly many of them don't know differently and follow recommendations based on inaccurate information. Dr. A's two biggest things were making sure Verity could breathe well on her own (check!) plus making sure we had a plan of action for keeping her fed and growing.

As for that first item, we have been thrilled overall with Verity's numbers. While there have been alarms ringing with elevated heart rate and lower oxygen sats from time to time, they are not concerning and easily explained: she's mad, she's having a small bit of reflux, the monitors got kicked off, etc. The cardiologists as well as the NICU doctor cannot detect any heart murmur, and what we've seen over the past week and a half or so is a good indication of Verity's "normal," and nothing about it is concerning. There are no signs of apnea, for example, a very common Trisomy 18 problem. So while I have tended to worry over any change in status quo, talking with various doctors over the last couple of days has given me a lot more freedom to just RELAX. Verity is doing great!

As for the second going-home-milestone, we were optimistic in thinking that a 30-day feeding tube placement would get us home early next week, probably Tuesday, and we'd be able to work on nursing at our leisure while making sure Verity gets the nutrition she needs to grow. So, today revolved around feeding tube efforts. The nurses placed it early this morning; an X-ray was taken close to lunch time to make sure the end of it was in the appropriate place (it wasn't and needed to be drawn back 2cm); and a doctor arrived close to dinner time to put the bridle on. The bridle would have essentially tied it off underneath her nose, securing it so that it wouldn't be able to be yanked out. Unfortunately, though they were using the smallest/thinnest option available, Verity's nose is still too small for this to work for us.

This is a disappointing setback to be sure. However, in the scheme of things, it is a setback that we can deal with, even if we don't like our alternatives. A G-button is not really a good option at this point; it must be inserted via surgery, and they prefer not to do surgery on one as small as Verity. It may very well be ideal in the future, but now is not the right time. The only other alternative seems to be that Ted and I will have to learn how to place the tubes that she has been using here in the NICU. While I'm less than thrilled about this (I nearly passed out watching the nurse insert it last week and left to go shower when they were putting in the larger one today), I know that we will do what needs to be done, and after awhile it won't seem like a big deal. But the hassle, not to mention the risk of it being pulled out (by Verity or a curious sibling), just makes me heave a sigh...these are the things no one signs up for...you just do what you have to do. Anyway...all of this could mean that we don't actually get to go home on Tuesday; we just kind of have to wait and see.

In happier news, and going along with the feeding report, a speech therapist came in this morning and sat with me during a nursing attempt. Thankfully it was a fairly good attempt! Verity latched and sucked and swallowed multiple times. This all takes a lot of effort for her still, and we are nowhere close to being able to count on nursing as a major means of acquiring calories, but the structure of her mouth plus all the cues she is giving us indicate that she is fully capable of nursing someday, and so this is what we plan to work toward.

And along those lines, I've learned so much from the lactation consultants here! Once again, I'm amazed at how much of a continual learning process this is...my nursing resume continues to grow, lol. We decided today that my supply, while adequate for Verity's needs right now, really isn't where I'd like it to be, and so I have some new tips and tricks to try for gradually increasing it.

We've increased Verity's feeds to 50ml (given over 30 minutes) every 3 hours. They continue to fortify with extra calories, but she's getting breastmilk every time instead of a mix of my milk plus formula. So hooray for that! Though her weight last night had dipped JUST a bit, tonight she was up to 5 pounds, 5.3 ounces, her heaviest weight yet.

We also had a visit from a physical therapist today to initiate conversations about various therapies that will help Verity; we should receive a visit from an occupational therapist soon, but I don't know if it will be tomorrow or after the weekend. Our state of residence has a program called Early Intervention that will allow us to receive home visits from therapists in the area, and once we are in that system, they can hand us off to our next location so we can continue with forward progress. (No word yet on whether I'll be provided with a personal massage therapist, which I desperately need after sleeping under stress on a hospital bed for 11 nights...! Bummer that I had to cancel a scheduled massage appointment because Verity arrived the day before, lol.)

In other NICU news, our doctor received an award from the university (well-deserved, I'm sure! I love her!), and a film crew was here today to follow her around and work on a video. Dr. A asked me if I would be willing for Verity to be one of the patients she would see while on camera, and I told her we would be honored! I got a little emotional when she asked (hormones!) and told her that we had prayed that God would put together just the right team to care for Verity after she arrived, and we were so thankful that God had allowed Dr. A to have her two weeks of rounds at the same time we arrived in the NICU. So, Verity and I had cameo roles in this video! I had to sign a release form and everything, lol. The film crew had no idea about Verity's diagnosis, so I had the opportunity to share a little bit with them and give each of them a Verity card to keep.

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.