Great/Gray Expectations

I get it. This time of year can be hard on anyone (everyone?). There is so blessed much going on with programs and parties and holiday activities, not to mention self-proscribed traditions and To Do lists and preparations (house, gifts, food, etc.) that can suck up all our time and energy in December.

This year feels especially confusing because I didn’t even realize it really WAS December until we landed at home in the late afternoon of 12/14 and even if you’re like me and not a math-er, you can see by those numerals that we missed half the month of getting our heads, hearts, and house ready for this special time of year. And, quite honestly, I’m pretty pissed at time right now because the three weeks we lost in Omaha are messing with me.

Now, to be clear….when I say “lost” I do not mean wasted. We did exactly what we needed to do for Wilson by being where we were for as long as we were (OK, still would have liked to have been home waaaay sooner, but that’s OK, Baby Girl – you are an excellent bus driver and we were happy to comply since it meant we got to bring you home at all). And in the grand scheme of things, three weeks is a drop in the bucket of time/a year/a life, and I am very much aware of people who stay longer or graduate to other parts of the hospital or live daily with illness and medical complications.

Awareness and heartbreak for those situations do not change, however, the fact that my own postpartum experience with Willa was nothing I ever anticipated, much less prepared for or knew how to navigate, and now that we are through it, I don’t know how to do what I’m doing now, either, which is trying to figure out life back in my house and with my five children and all in the week prior to Christmas during which my husband is teaching full-time because of Finals. It all feels like a bit much, you know?

Enter the Great Expectations. I know my kids don’t really care what they get for Christmas and that if we don’t do All. The. Things. we have done in Christmas’ Past, they will live (and trust me, they all have elephant memories, so they will remember). Even I don’t have huge expectations of what Christmas should be or look like, but the fact that it is suddenly upon us and I’ve had no time to ease into that, much less newborn life, is hard.

And enter the Gray Expectations, which is how I feel about our homecoming and what I think people are maybe expecting of me which is to be gushing with happiness right now. The number one question I am getting, and understandably so, is, “How is it to be home?!” and it is my response to that that feels so loaded. The answer is more complicated than “good” but not everyone wants/needs to hear that and I don’t actually need to start crying every time I talk to someone about it, so what do I do?

A “good/yes” response is true.

A “hard/overwhelmed” one is as well.

And I think it’s just going to be like that for a while as we take time to unpack our bags from the hospital, find all the baby odds and ends around the house that we need, and deal with the see-saw of emotions that come with any newborn adjustment, much less one post-NICU, and yes, prepare for Christmas, too.

I wish there was a more compact way to include that in my answer to the No.1 question these days, but none of this is black and white, and as with any parenting journey, there’s no manual, either, so the best we – I – can do is to keep trying and talking (OK, mostly writing) about the “tossed in the deep end” moments, for how else do we hope to make any progress to our new normal?

Good and Hard. Great and Gray. All of these things, and so much more are a part of this time and this sweet Little One’s story. And so, we carry on.

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Re-Entry

Bless it, my friends, we are finally home! I apologize if we were a little mum and sneaky during our last 24 hours at the hospital, but things started coming at us quickly, and we were just happy to comply and get the heck out of there as quickly as we could once that ball started rolling!

img_8569It began Wednesday afternoon with the Charge Nurse coming to tell us we could move into the Transition Room that afternoon. This is the before-home room that has its own door and bathroom (um! Hello and thank you!!) and a place for two people to sleep (due to other rules on the Unit, the other two nights we slept at the hospital with Willa actually meant me sleeping on a pull-out chairbed (that was acquired only by giving up my rocking chair) and Ben sleeping on the bench/couch thing in the waiting room. Nooooot exactly ideal). So we booked it over to the Rainbow House were we quickly packed up our stuff and checked out of there so we could spend the final two nights in the TR instead. The Rainbow House has a waiting list right now, so we were very happy to give up our spot for some other family in need of close lodging, and a couple nights early, to boot.

It surprised us how different the new room felt and we spent the rest of Wednesday evening getting semi-settled and ready to get Wilson through another night of feeds because we REALLY needed her to show a weight gain by 7:00a Thursday morning as this was the one thing the doc was really looking for after letting her go ad lib on nursing Wednesday. For our sanity’s sake, we kept up with the before/after weights on each feeding because the last thing we wanted was a surprise (in a bad way) Thursday morning!

True to #WonderWilson form, Baby Girl rocked it and even added an extra feeding in there, making her 7-7 total for her first day with no NG supplementation a whopping 94% intake via the breast. Amazing (& as a friend pointed out, good dang thing I have a lot of dang milk!)!!

We saw her doctor in the hall Thursday morning and gave him the good news (she did indeed gain by her official weigh time Wednesday night) and then while we were eating breakfast in the waiting room, our nurse came by to tell us that she’d heard a rumor we might be going home that day instead of Friday.

As you might imagine, our hearts leapt at this and we got

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right to it with sending out all the hopes and wishes and prayers that that might actually happen, which we found out less than two hours later was very much indeed the case!

Because Willa showed so much progress and aptitude for feeding these last few days, and everything else had been cleared and done, they saw no need to keep her for one more day/night just to prove she could go home. So pack we did and by noon Thursday we were officially in our van, driving away from Children’s for Wilson’s very first car ride. HOME.

We could not wait to surprise the Bigs after school! And we couldn’t wait to surprise all of you with this fun and fantastic news, too!

From here, we know we enter a new period of chaos. Of course it is a much better, more familiar kind of chaos, but we still have a lot of adjustment to do as a not-so-little family. Not only do we have to recover and regroup after three weeks of crazy separation, we have to do the typical “Hi! There’s a new person in our house!” stuff which can be interesting even without such a wild, disjointed start.

To be perfectly honest, we’re probably going to hunker down a bit, and we hope you’ll understand if we’re not really out and about or big on visits right now. It’s not that we don’t want you to meet our Sweet Wonder Girl – we very much do – but we also want to stay mindful of many things right now including Cold & Flu season (our doctor flat out told us to avoid crowds and playing “pass the baby” anywhere) as well as the fact that we’re probably going to need about as many weeks as we had at the hospital here at home before we really feel settled. And while we’re flying high on adrenaline and love right now, I’ll warn you that there may be days when I flat out can’t talk about it because the whole thing has been surreal and it is going to take time to process before I can maybe have normal conversations about it all. Please don’t take it personally if I 1) burst into tears and/or 2) change the subject on you the next time I see you!

Please also know that I will continue to post updates and pictures for you and that we appreciate so very much all of your continued support up to and beyond this point in Willa’s story. You all stepped up to help and provide and love on us when we needed it the most and even though it took longer to get home than we hoped, we know you all helped us get here as smoothly and quickly as possible.

And a huge shout out and thank you for understanding as we give Wilson and all the Bigs (and ourselves) time, space, and grace on this much-anticipated, much-appreciated time of re-entry. Besides trying to acclimate back to our own house, we’re trying to do as much of this (line-free snuggles) as possible: img_8641

Go Fly

After a handful of steady days of a steady plan (and slow but steady progress), we hit a hiccup with Wilson’s feeding that started Saturday overnight and definitely carried over through last night and this (Monday #3) morning.

As you might imagine, any sort of setback at this point is pretty frustrating because we NEED that steady progress to happen in order to go home, so B and I hit the ground running this morning with the attitude of “What can we do to turn this around (and no offense to the nice folks of Children’s, but…) to get the heck out of here?!” Thankfully some of those nice folks are very much on the same wavelength as us and so a new approach was hatched.

Starting tonight we will not be sleeping at the Rainbow House. Instead, we’ll be here in the room with Wilson for the next 48 hours, breastfeeding around the clock (instead of the bottle feeds that had been happening overnight) in hopes that that is what it takes to get enough in her system so we can meet those benchmarks that actually get us out the door. So, essentially, we are going to do a normal newborn schedule in the most not-normal environment and pray that it works (and works well)!

Hence the feather. img_8132

Confused? Let me do my best to explain…

Remember the Tembo post and Wilson’s animal connection to the elephant? But also how she had previously been tagged as a bird because of all the feathers I saw during pregnancy?

After I shared that post, a friend wrote to me about the symbiotic relationship between elephants and birds which I had forgotten about until she brought it up, but as soon as she did, my brain instantly clicked to the thought: allllllll of those feathers I saw were still signs, just not for the baby, but for her helpers (Still with me? I promise, this does all make sense). Remember in Dumbo how he uses the feather to boost his confidence enough to “fly” for the circus act? That feather was his helper and all of you have been Willa’s (as well as our) feathers in the last three weeks, helping us navigate as best we could through our family’s biggest time of challenge and need.

Seriously. We could not have made it this far without your love, prayers, messages, meals, rides, letters, gifts, and all the other goodness you have sent our way.

And now we are calling on our feather-helpers for what we hope is one last big push to get over the hump with feeding so we can go home to do actual newborn things in an actual normal environment because that would truly be the greatest blessing of all. Please keep those hearts and prayers lifted, your fingers and toes crossed, and all the good vibes coming because our Little Miss is so, so ready to fly.

 

#Goals (How We Get H-word)

This summer, as one of my dearest friends and I drove back from Colorado (and I heaved the whole way home thanks to pregnancy-induced altitude sickness), we started joking at one point (because, yes, even six hours of being sick in a car can still have moments of light-heartedness, apparently) that the sweet babe growing in my belly was going to 1) be a girl 2) come out with a fist raised in the air and 3) be singing Nahko songs.

If this is all very confusing to you, let me clarify.

We were just coming back from a two-night weekend of performances by one of our favorites, Nahko and Medicine for the People, and even though I was still less than 20 weeks at that point, during the concerts I could very VERY much feel the baby moving around and responding to the music at each show. Nahko’s music is very socially and spiritually conscious which explains the arm lifted in resistance bit, and as for the gender prediction? Well, I can’t remember that part of the conversation now, but I’m sure we had some good reason for thinking it at the time.

When I told all this to another yogini/Nahko-loving friend the first week we were in Omaha, she responded, “That was no joke – that was a vision.” and I have to say I’m pretty sure she was right because Wilson very much came out as a peaceful warrior and has been keeping her hand high, fighting her way through SO much in these earliest days of her life’s story.

Perhaps it is fitting, then, that the very first Nahko song I played for sweet Willa is a new img_8528one of his called “Dragonfly” (oh my, did she hear this song a TON from my belly this fall because I loved it AND my own spirit “animal” is in fact the dragonfly, which just happens to be part of the decor in our part of the hospital) in which the main message sings simply, “This is resistance, I’ll survive. I’ll survive. I’ll survive. This is resistance.” Maybe we listened to that song so much in September-November because it would need to be on repeat in my (and her) brain during this wild ride of plane rides and abdominal surgery and recovery and learning to feed that has been the whirlwind of our NICU experience.

Because resist (or rather, persist) we have and survive we will, and today we got to hear for the first time what actually needs to happen in order for us to start talking about the h-word so we can put all this behind us. And while it’s still a mountain to climb, she’s already made great progress up it this week.

Essentially, we have to get to the point where Wilson is taking 80-90% of her feeding amount independently (from me/the bottle). Her amount will still increase by 5mls here at some point, but that is nothing like the moving benchmark (from 40-70) we experienced last week/over the weekend. Right now we’re averaging 50-60% of her amount (which is awesome!), so that gives you some idea of where we stand there. After we hit/maintain that goal, the NG tube will come out and we’ve got to have at least a couple solid days of feeding solo-solo in order for the magic word “discharge” to bring about the uber-magic word “home.”

So this is still very much a process and it’s not going to happen overnight. There still could be “bad” days or “bad” feeds. But we feel like we might be closer than ever to her taking off and us all coming home which has obviously been the end goal since before the start of the whole roller coaster ride, so we will take it. We will resist the obstacles. And we will survive (with peaceful warrior “fists” raised high, just like our Wilson Ann came to teach us to do). img_8515

 

 

Lack of Timelines (and Paula Abdul)

On our second day here, the Nurse Practitioner who put in WA’s PIC line very much warned us that life in the NICU is often one step forward, three steps back (cue the humming of “Opposites Attract” if you will). I didn’t like that progression of numbers, nor did I want to believe her. And actually, for the first week of being here, I really didn’t have to believe her. But then Week Two began and we smacked into our feeding plateau and now we’re on Day 13 which is turning out to be very much a not-so-great day following the excitement of yesterday’s biggest-to-date independent feeding sessions.

Apparently this too is to be expected. Often after a big day of exertion and progress, babies in Willa’s position can revert a bit on their feedings and stamina. So nothing about this day is surprising the specialists around us, but I’d be lying if I said it has been easy to have poor numbers come up again on the scale and not instantly feel responsible. Seriously – how do you not feel the literal weight and importance of every blessed feeding when every single one is being marked and monitored and MATTERS in terms of the weight gain + endurance that are your ticket home??

It’s all a bit too much, especially when it suddenly doesn’t go as well as hoped or as it did previously, even when people tell you that that’s OK and even typical, and so today has very much been A Tuesday. I guess there’s probably some comfort in that, though, because it means Wilson already understands how our family rolls and that this is the day of the week that brings us the most confusion (and delay, for you Thomas fans out there) and frustration.

And if I’m being really truth-y, it’s not so much her that I’m worried about right now. I know she’ll get it, and everything is going to click and we’ll get home. It just looks like it will be more of an “eventually” than a “soon” and we’re doing our best to make peace with that and are more than happy to let her call the shots because it is best for her.

What’s truly bothering me about the unknown timeline of this all is the time and distance from the rest of the kids.

Day 13, man. Day 13. How did we already get this far? And how exactly are we supposed to just keep going until we hit that magical, totally unpredictable leave date? Because I have never been away from the rest of my babies for this long, much less however long this whole thing actually turns out to be, and it is breaking me right now.

Originally I thought there was zero chance of me leaving Omaha while Wilson was here but then Sunday came which put us a week out from the church Christmas program (you guys, we were supposed to be Mary and Joseph and Baby Jesus) and I had teary Bigs back home suddenly very concerned on the phone about us being there for it and while I img_8497couldn’t promise Little Sister being there, I could tell them that Ben and I would be there because this is clearly a bit too much for all of us at this point. The guilt of leaving Wilson here for that time period is insane, but I just can’t right now with the being away from them either.

If it comes to that, which as of today looks like very much the case, I’ll tell you right now that I’m going to be a hot mess. As in, a holding my toddler, snot and tears running down my face while we watch our music-loving Bigs belt out their songs at the front of the church Hot. Mess. Because sometimes that is as much a sign of strength as the stiff upper lip and it’s just all we can do when everything remains up in the air.

Bottle vs. The Boob (and also The Tube)

Day 12. And while it feels like we’ve been on a bit of standstill since Day 7 or 8ish, I suppose that’s not really true. We’ve more so been in the backward-forward/up-down Dance of Progress that is life in the NICU and allllll of it centers on feeding.

Here’s the latest: Wilson is still trying to wake up enough during feedings to get as much as possible from me or from the bottle (which is what she is taking overnight), and that, my friends, feels like it is taking forever to see any progress. She is sooooo sleepy during feeds, even though we’ve been trying to increase our holding/snuggle time with her between such so she will sleep then and not when she should be eating. Basically, she’s a big old snuggle bug which is a lovely thing except when that applies to eating and eating applies to going home.

The way it has worked the last few days (bless it for a tiny bit of consistency) is she gets 30 minutes to eat on her own and then whatever she doesn’t get from boob or bottle (we weigh her before and after on nursing sessions, just like Baby Weighs at home, to know how much she is getting there) is topped off by the NG tube. As of today, Monday, she is up to 75 mls total, so 2.5 oz of milk every 3 hours.

The great news is, her “new” digestive track is handling all of this with total #WonderWilson status. Her poos and pees have been spot on and regular, and actually her tummy in general has been great because she’s had very, very little spit-ups, too, even though we have been steadily upping the ml total each day. All of this is both remarkable and positive.

However, of that 75, at best she’s taken 24 from me and 30 from the bottle, so clearly we still have a ways to go before the NG can come out (and we can come home).

Enter our midday feeding and Back Up in two forms.

The Lactation Consultants have already been in to see us a handful of times since we’ve been here and they were thankfully back today at the exact same nursing session as the Feeding Specialist who came by to help us learn more about how to read a newborn like Willa’s subtle cues during a feed. What we thought was just “sleepiness” is actually more so a response to the stress of not just learning to eat (she’s actually got the whole latch/mouth/breathing thing going pretty well) but post-surgery recovery in regards to her gut and what it can handle.

Folks did warn us that “Gut Kids” tend to very much do their own thing after surgery and that’s definitely been the case for us these last few days. So by having all three people here at the same time to watch Wilson eat and tell us more about what they were seeing helped me learn that by giving her a little space/time and maybe a position change when she seemed to fall asleep (which is actually more a stress shut down), she was able to recover, regroup, and then go again for a bit more during our allotted 30 minutes.

And guess what Little Miss Wonder did?!

She had her best feed on me to date!

We all laughed with delight and shock when we put her back on the scale and saw that she had pulled over a whole ounce from me (32 mls)! We also decided that she must be missing the chaos from home that she was so used to hearing from the womb because it took a room full of people talking for her to relax and get after it. 😉

But seriously. I was so proud of her and also relieved at the support that I received during that session. When they started talking about feeding specialists and such over the weekend, I got worried (and started telling stories in my head) about being told I was doing something wrong or that I wouldn’t be able to get enough in Willa on my own (even though everyone here has been very much aware and very much supportive of our desire to be exclusively breastfed at some point/ASAP and I clearly have a dairy’s worth of milk supply). But not once was I approached as though I was doing something wrong or that she was either; it’s more so just another facet of patience and giving Wilson and her tummy the legit time they need to adjust to her new system and eating on her own and what we can do to best facilitate that.

Best of all? Since 30 mls has been a goal of mine for a few days now, we celebrated with our matching Mama/Baby Wonder Woman hats handmade for us by a friend in Hastings because Heck Yeah, Little Lady – it may not happen on every feed from here on out, but once is a start and a huge step in the right direction of home!!

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The H-Word (Revisited)

A few weeks ago, on the after school pick-up run, HD hopped in the van and said, “So-and-so said the h-word!” Out of sheer curiosity, I responded, “OK. What’s the h-word?” Well, bless HD’s sweet heart and my hippy-dippy ways, because the answer I got back was, “He said it was hell but I know it is hate.”

Now, on Day 11 in the Children’s NICU in Omaha, I am pretty sure the h-word is actually Home, and if I’m being honest, it was dropped a little too soon around my anxious mama ears.

I have no idea when someone first said it here or even who that someone was (every day is a bizarre blur, especially since we started breastfeeding attempts), but I know it was right around or just before we hit the Week mark because Wilson was just blowing through every marker they had for her for progression all the way up until we started independent feeding. Then, we hit that wall everyone had warned us was coming.

And then, those mentions of the h-word quietly faded away in terms of soon, to be replaced by, “Well, when she does this…” with this meaning eats enough on her own (breast and bottle) and continues to gain weight.

As with any newborn, it’s very tricky to put a timeline on that this. So much depends on different variables and body parts and systems deciding to click and work together that we really have no idea if we are talking about a day or two or another week. Basically we just need to keep trying and trying to feed her until she recovers enough from surgery (again, every baby is different in terms of how long this takes) to be more awake and active during those feeding sessions and then, maybe?, we’ll know more about how long we might be away from our h-word.

In the meantime, we have been fortunate enough to be staying at the Rainbow Houseimg_8471 which is associated with Children’s and runs on a donation based system for families with Littles who are patients here. It’s is blessedly close (three blocks?) to the hospital, has free laundry facilities, a full kitchen you can use at your convenience, individual little lockers with a mini fridge and shelves for each room located just off the kitchen, and many nights meals are brought in by local groups from the community that are free to folks staying there. There is also a shuttle that runs every day in case you don’t have a vehicle to get you here. Plus as you can see from the photo of the entryway, it’s just beautiful.

Essentially, it is amazing and we are so thankful to have a spot there. To be this close to where Willa is makes a huge difference, as does having access to our own, prolonged “living” space and food storage. Because, let’s face it, for someone like me, the creature comforts of home are greatly, sorely missed right now.

As much as I may pour out here on the blog, I’m a fairly reserved and private person – an introvert who craves quiet as much as she craves music playing and sitting down with a “relaxed” cup of coffee, and her own bathroom (OK, that has nothing to do with introverts vs. extroverts, but you all know what I mean, yes?). Here there is no quiet. We are part of a well-oiled machine on this Unit, thank goodness, but with what is essentially a curtain for a door and all kinds of machines dinging at us or our neighbors all the time, and people* constantly popping in for one thing or another, my system is on stimulus overload more often than not. [*Side note: my brain is so desperately seeking signs of home that people on the Unit are constantly reminding me of folks from home. Often this means physical resemblance, but I was fortunate to have the same day nurse for three blessed days in a row and she sounded and spoke just like a friend from Hastings, which was so strangely comforting. Is this a NICU thing? Sleep dep? Survival mode? I clearly have no idea, but I’m grateful for all of you who have popped up here in spirit in these resemblances.]

Anyway, hence the leaky faucet face the last few days, but I stand by the claim that that is both normal and healthy and very much a given when your postpartum expectations suddenly get totally turned on their head. I mean, even ugly cries have to be scheduled because losing your shit behind a curtain is anything put private in a situation like this.

For Type-A planners like Ben and myself, it would be easy to slip into thinking that this experience is more like those first two h-words HD mentioned that day in the car. However, since WA is continuing to make progress (they continue to stair-step her up on her feeding levels, so between breast/bottle and NG, she is now up to 70mls of milk, so just over 2oz. every three hours), we know the actual h-word is coming….just as long as we stay patient and give her the time she needs to be able to thrive once we get there.

Of course I would like it to be sooner than later, but I know I need to back the h-word off the whole thing because the last thing either (any) of us needs is more pressure on the feedings to magically take off.

So. Deep breaths. Sweet snuggles when we can. And finding other ways to get that much needed space or quiet that keeps us calm and moving in the right direction.