Monday, August 27, 2012

Not sure what day it is, but it is definitely a better one!

Just us girls today.  Daddy had to go back to work.  We are still at Dell Children's and hoping to be discharged today.

I feel like we will be bringing home a new baby.  A really happy baby.  Before coming here, Neely was pretty fussy, up all night, and vomited if her g-tube was left clamped.  Today, Neely is a big cheeseball.  She smiles all the time and I swear she has even laughed a couple of times.  She sleeps well and hasn't vomited in a couple of days.  She seems to be hungry and takes her oral meds and bottles happily.  Things seem to be moving in the right direction.  And yes, I know that we will be back here at Dell again, maybe even soon, but for now we are just going to sit here and smile at each other.

This place is so different from the NICU.  We were so familiar with the NICU - the front desk, the nurses, the case manager, the doctors.  Here, it seems like there is a new face everyday and we need to explain things all over again.  We don't feel comfortable leaving because we don't know who is going to show up and order something crazy.  The other night, someone said to go ahead and start feeding her again.  Something like "no more than one ounce every hour".  This kid has never had more than 5 cc's every 3 hours.  An ounce would be bananas!  We kind of just smiled and nodded and later laughed about how the NICU doctors would probably flip out if they heard that.

Be her advocate.  Caty, Dr. Tao, and Dr. Cho (NICU) told us lots of times that we will become the experts on Neely and we will have to be vigilant and advocate for her in the different places she ends up.  This has become very obvious here.  We've had to explain her difficult anatomy (post-surgery) several times.  We've had to explain why oral meds won't work on her.  We've had to keep the "one kidney" issue in the forefront when discussing treatment regimens.  I'm sure there have been doctors or nurses who've walked in thinking we just sit here, clicking through TV channels.  Pretty sure they walk out feeling pretty confident that this little girl's parents are all in.  We are her walking, talking medical chart.  We can't change her Broviac dressing (yet), but we can change an ostomy bag with some MacGyver style creativity.  I'm proud of us.  As my friend Judy reminded me yesterday, God gave us this little girl because we can handle it.  We've dealt with some of the worst news and come back with more faith, more strength, and more conviction.  Don't get me wrong - I've spent some time crouched and crying in the shower, or having a texting pity-party with my friend Lindsay, or (worse) emotionally smacking my poor husband around.  But the tears dry, and Lindsay and I put our big-girl pants back on, and Josh (emotionally) smacks me back to reality.  We are here.  Covered in poop and bile and blood and stomach juice, but we are here.  And we are smiling.


P.S. Special thanks to 1) our pastors for visiting us this weekend 2) Philips (Josh's employer) for throwing a super cool Kickball Tournament to raise $ for Neely and 3) the lovely Judy for stopping by to give me a break and take me to IKEA!  Got some cute stuff for Neely's room :) 

Friday, August 24, 2012

Another Bump in the Road

I'm sad to report that we are back in the hospital.  I regret that I didn't post very much during the 5-ish days that Neely was home, because there were truly some joyous times I should have shared with you.

We never took down the "Welcome Home Neely" sign.  It's still hanging up.  It was just so pretty and such a well-earned celebration ... I guess we just didn't want that party to end.  Having Neely home was wonderful and stressful in all the ways it usually is when you bring home a newborn.  There were sleepless nights and there was lots of crying, lots of pacing and cuddling, and lots of schedule adjustments.  We were a bit worried about how Laney would deal with having a little sister, especially one that requires as much attention as Neely does.  I have to tell you that when I die and my life (supposedly) flashes before my eyes, the images of my sweet Laney loving on her little sister will be among those that put a smile on my face and let me know I've lived my life well.  She is such a good big sister.  How do you teach a 22-month old empathy?  Who knows, but I know my little girl has it.  She'd look at Neely and keep saying, "Awww".  She'd try to give Neely tips on what to do if you are sad, "Aww, baby sisto sad?  Go Uncle" (apparently you go to Uncle Jack when things are rough with mom and dad).  "Baby sisto, don't cry".  "Mommo - Baby sisto booboos?" (she would say this to me to tell me to give Neely milk).  I can't tell you how many times she'd hug her and kiss her or want to check on her - "see Baby sisto?"  She'd even hold a mirror up to Neely while combing her hair.  Laney would pretty much sleep through Neely's late night crying sessions.  She never once got jealous or tried to take the attention away from her.  It was so sweet and I am so proud of Laney for the little person she is already becoming.  A good person.

Laney loving on Baby Sisto

Laney combing Neely's hair and holding up a mirror for her to watch

We also enjoyed getting to know Neely's home health nurses.  Olga & Youlan ... amazing people.  We'd see them twice a day and they were quickly becoming family.  They took such great, proactive care of her.  Olga even went to Neely's pediatrician appointment and advocated on her behalf on certain issues.  We should have known how superior her home health treatment would be because when Olga first met us in the NICU, she was greeted warmly by all of the NICU nurses - they know her and love her.  We are blessed to be in their care.

So ... how did we get here?  Back in the hospital?  It started Wednesday night when we noticed increased drainage from Neely's mucus fistula.  This site (previously the ileostomy) had always been pretty inactive - the easiest of the numerous protrusions from her abdomen.  Just put gauze on it and change it every diaper change, no big deal.  There was usually no drainage.  There was a little more drainage this time, so we put some gauze down and didn't think much more of it.  We put Neely to bed and tried leaving a radio on in her room, thinking she'd sleep better with noise.  It worked like a charm because she slept alllll night.  It was the first sleep I'd had in 4 days.  I felt great!  In the morning, I lifted her up to wake her and change her, but noticed she was covered in something sticky.  Oh no!  I figured her ostomy bag had leaked and the poor thing had been sleeping on that harsh stuff all night.  When I unwrapped her, it was horrific!  A total shock.  The mucus fistula was oozing a ridiculous amount of brown stuff.  Her diaper was full of brown stuff ... it looked like a typical newborn poopy diaper.  I flipped out, woke up my brother, ran around frazzled trying to figure out what it was.  I called Josh and I know deep down we both prayed it was some kind of miracle.  This fistula is connected to her unused intestines and shouldn't be producing anything, but poop was flowing through.  Flowing.

Jack helped me put a makeshift bag on the fistula (which soon leaked) and I waited anxiously for my mom to get there so she could help with Laney.  She got there and we tried again with 2 ostomy bags, which have held up, so far.  Then, we waited for Olga and Youlan to come over.  Neely did not have a temp or seem to be in any pain, so I wanted the nurses to look her over before I officially panicked.  Olga thought she looked fine, but wanted to start measuring her fistula output anyway.  We left messages for the GI doc and the surgeon, and everyone said it was nothing to worry about.

4 hours later, when Olga was scheduled to come back to hook up Neely's TPN, she became concerned about Neely's color and the continuous output of the fistula.  She worried that Neely was becoming dehydrated from all the fluid loss.  "Out of an abundance of caution," she said, she wanted us to take Neely to the ER.  She made all of the necessary phone calls to make this process as smooth as possible.

We got to Dell Children's around 5 and were whisked away immediately to a room.  She had x-rays.  She was put back on all the monitors.  They tried to draw blood about eleventy million times, but Neely's veins are so tiny.  She is an incredibly tough stick.  They could not get the sample.  They tried getting blood from her Broviac catheter, but it apparently has a weak spot now and cannot give a blood return.  Finally, the ER doc did an arterial stick and did get a sample.  She had a catheter placed to obtain a urine sample.  Poking, prodding, pulling, pushing ... it sucked.  Neely was over it.  She had had so much and all I could do was look her in the eyes and hold her hand and tell her it was okay.  It felt like a lie.  Over and over ... "It's okay, baby.  It's okay".  She seemed to look back at me so confused because ... we both know it's not okay.  I wonder if she hates my face because it's so often the one looking at her when all these yucky things happen.

We were admitted to the IMCU late last night.  We were not in the room long before her nurse came in and told us Neely tested positive for C.diff - a horrible bacteria that can flourish when a patient is on antibiotics.  Josh and I had read about it a week prior in a newspaper article.  "Did you read this?  This sounds awful to have".

It felt like a punch to the gut, which I guess it truly is for Neely.  This long length of unusable intestine is making her sick.  She can't use it to process food, but it sits in her belly and can make her sick.  What the heck is that???

Olga came to visit Neely this morning (for no other reason than because she is an awesome, compassionate nurse).  She said that Neely looked better and that we should not worry because they caught this pretty early.  She reminded us to look at Neely and see how good she looks.  She is not on a ventilator.  She is sleeping peacefully.  A baby in pain would not be able to sleep.  Thank God for Olga!

So here we are.  It's different here at Dell.  We can sleep in her room and be with her around the clock.  I feel like we need to be here with her since they don't know her as well.  I want one of us to be by her side through all this.  I miss my Laney, though.  That crazy little girl.

Oh friends ... please pray that she will get through this one and the next one and all the ones after that.  Please pray that she never remembers this.

My sleepy family, my little slice of heaven.

Saturday, August 18, 2012

Thursday, August 16, 2012

Groundhog Day

You know that movie, Groundhog Day, where Bill Murray relives the same day everyday until he gets it right?  That's kind of how I felt this morning.

We were so excited yesterday, coming to the hospital with our overnight bags, pillow, carseat, and baby clothes again.  We were finally going to take her home in the morning!  After a very long, sleepless, vomit-filled night, we got the news that she could not go home today because she threw up pretty much all night.

Back to yesterday - we arrived to the hospital for our usual 4PM-ish visit and as soon as we walked towards Neely's room, one of the nurses excitedly said, "Neely's coming home tomorrow!"  Poor thing - she didn't know that we didn't know.  We knew she was coming home soon, but we figured we'd have a little more notice when the date was set.  The shock quickly turned to excitement and FEAR!  No time for that because the next thing they said was that we needed to "room in" that evening.  The NICU lets parents room in so they can practice being with the baby, but with nurses available to help if needed.

Panic mode began to set in and I started making list after list of what we needed to do before we returned later that evening to room in.  We rushed toward home, panicked but happy, texting furiously.  We realized we hadn't eaten and decided to stop for what we thought would probably be our last dinner out in a long time.  Then, BOOM, we did a blitz on the house ... cleaning, re-cleaning, more lists, packing, freaking out.  We finally, exhausted, left for the hospital around 10PM.  Josh had been awake since 3:45AM, so he was about 6 hours past functional.

We talked with her awesome nurse, Brandi, about the rooming in process for a bit and then ... Neely was ours for a whole night!  I was scared, but ready to dive in.  Checking temps, diapers, ostomy bags, IV sites, etc.  I got to hold her against me, skin to skin.  We made googly eyes at each other and for a little while everything felt pretty darn good.  Around 1:45AM, she started dry heaving and then threw up.  My mind starting going "no-no-no" and making up excuses for why it happened.  Maybe I was moving her too much?  Maybe I was going overboard with the binky?  We called the nurse and she said it was probably okay.  Then around 3 I started to wake Neely for her feeding and she threw up again.  Then again later when she was in her crib alone.  More and more gagging and vomiting.  They did an x-ray at her bedside, but found nothing worrisome.  Brandi took some blood and it turned out Neely's hemoglobin and hematocrit were low.  She needed a blood transfusion, but the blood levels did not explain her vomiting.

Around 6:30AM, Neely was still vomiting so Brandi took her back to her room.  I finally slept, until about 8:30AM when Caty came in.  I was half-asleep, but I remember her saying that Neely would not be able to go home today.

Neely vomited intermittently throughout the morning and early afternoon.  The doctor did not have any idea why she was vomiting, but said it would not prevent her from going home Friday.  We are frustrated and sad and confused.  We want her home, but not if she is not ready.  Nothing is normal with Neely, but it's hard to grasp that her throwing up every few hours is just okay.

We are rooming in with her again tonight and pray she does not get sick.  We want to bring her home tomorrow, but I admit I am less excited and more scared now.  Will we always exist in this fearful state of mind?  When we get home, we won't have Brandi and Jeri and Caty (and the other wonderful nurses) reassuring us and helping us through this.

Speaking of which, Caty surprised us today with a little book that a bunch of the nurses signed and wrote sweet little sentiments about Neely.  These nurses are absolute angels, I tell you.  What they do everyday is amazing.  We could not have gotten through the rough times without them encouraging us and, more importantly, dedicating 100% of their talents and efforts towards our little girl.  We prayed throughout this ordeal that Neely be surrounded by angels, and indeed she has been.  I so hope that we can stay in touch with everyone.

Caty also gave us another gift for Neely, but we'll wait to open it until Neely comes home.  I still can't believe we won't be seeing Caty again!  Not in the same capacity anyway.  Leaving Neely in the NICU everyday was hard, but knowing she was in great hands always made it a little easier.

Well, Neely should be back in here any minute now and I hope tonight goes better than last night.  Please keep her in your prayers.  I hope my next post includes pics of Miss Neely at home!

Tuesday, August 14, 2012

We're Live!

First of all, I'm so happy that this website is officially "launched".  It's far from ready and any suggestions are welcome.  Thank you for all of your support and for reading and sharing Neely's story.  Speaking of which, it occurs to me that we need a shorter version.  I'll let my brother try to figure out where it should go on the site, but here it is:

Neely Lucquete was born on June 14, 2012 and was diagnosed with a rare form of Hirschsprung's Disease. This disease usually only involves part of the large intestine, but in her case it starts all the way up in her small intestine (at the jejunem). She does not have the nerve cells that allow the intestinal tract to push food through. She is unable to drink normal amounts of breastmilk or formula because it would get stuck in her intestinal tract. Her only options are palliative care or intestinal transplant. We have opted for transplant. Until she receives a transplant, she must survive on IV feedings, which will eventually cause her liver to fail. 

She is able to tolerate tiny amounts of breastmilk. Her intestines don't move, but they can still digest. A small portion of her small intestine is connected to a stoma on her tummy, so she can "poop" this digested milk and bile. It is a short distance from her stomach to the stoma, not enough length to absorb the required nutrients, but short enough that the intestine doesn't need to push anything - the poop basically comes out with gravity.  

As stated, Neely needs an intestinal transplant. This procedure has only been done within the last 10 years or so, so it's less established and more risky. Apparently the intestinal tract is a lot more prone to organ rejection. This type of transplant is only done in a handful of places and she must first be accepted as a patient and listed for transplant. We are unsure of how old or how big she needs to be before she is eligible. We've requested that she be seen in Pittsburgh, as their program has been around the longest. Pittsburgh has reviewed her medical records and found her to be an appropriate patient for referral. She must be discharged from the hospital before that process begins, and then it will likely be a few months before the consult because it takes a while to iron things out with insurance. 

Meanwhile, Neely has to get bigger and avoid any infections or further complications. We are hoping to be discharged from the hospital by the end of this week, but will have to learn how to manage all of the gadgets that are keeping her alive. We don't know how much all of this is going to cost, especially long-term. She is covered under 2 insurance plans, but the bills are starting to come in. We plan to continue to work, but ideally one of us would like to stay by her side.

Still a long story, but I hope it answers some questions.  We have so many questions ourselves.

Neely looks great today.  When we came to visit, she was awake and pulling on her ear, which is something her big sister is always doing.

We met with a rep for Neely's G-tube supplies.  The G-tube connects to her stomach from a "button" on her tummy.  The rep was showing us how to work the pump that will (hopefully) feed a constant drip of breast milk directly into her stomach.  She has been on such a small amount, though - 1 cc every hour - that we were surprised the rep was discussing dripping bagfuls of formula.  Doubt that will happen, but it's nice to dream.  If only she could be fed by breast milk alone.

Not much else going on today.  She was unplugged from the IV and was relaxing with her pacifier.  All of the blinds in her room were open - I forget how nice of a room she has.  She's in isolation, which scared me at first, but now I'm glad because it's a huge room with a great view.  No other babies crying around her and we sometimes get away with staying past visiting hours (shhh).  

 ignore the sleeping Papa

you can see the UT stadium!

I swear she smiled at me today, but I wasn't able to get a pic.  I tried to wake up daddy so he could see, but he was a little bit sleepy from having stayed at the hospital late last night and waking up at 3:45AM per usual.  Neely was wearing the cutest little dress and being an angel baby.  I got to hold her against my shoulder and play with her a little before she got hooked back up to her IV.  Her ostomy bag is staying on, her rash looks better, and she is taking her bottle feedings wonderfully!  I hope we're still on track to bring her home this week.  

Sunday, August 12, 2012

Whatever time it is, I must be late for something!

I think we really are getting close to bringing Neely home.  We got a call from the NICU yesterday morning asking us to come to a Discharge class.  We asked if my mom could join us, since she'll eventually be spending the most time with Neely.  

It was a good class, but it was kind of a general class for all babies leaving the NICU.  Just a little sad since a lot of the topics discussed did not apply to Neely - like feedings and poopy diapers.  We did learn some basic baby CPR.  This is great to know and I don't understand why they don't have a nurse come to your room to go over this after any baby is delivered.  A lactation nurse helps you with the whole breastfeeding thing, but I think it would also be great to have a nurse come in and do a basic CPR demo.

Anyway, the class was great and we stopped briefly to visit with Neely before I had to take mom home.  We thought we'd be right back after dropping mom off, but things never quite go according to plan with the Lucquetes.  After lunch and me getting into another silly argument with Josh, Laney started throwing up all over the car!  She hardly ever gets sick, so we were freaking out.  She had a fever of 100.9 and was definitely not herself.  She was whiny and clingy and kept drifting off to sleep.  Probably just a little bug, but when you've been in NICU mode for so long, you can't help thinking something much worse is happening.  She threw up another time, but we brought the fever down by the end of the night.

Needless to say, we were afraid to go see Neely and get her sick, too.  Especially when we are so close to getting her home!  We called to get our update from the nurse and she said that Caty (earlier shift) had put the ostomy bag back on.  Yay!  This meant that the rash around her stoma was finally gone!  It was great news, but I still missed holding my little girl.  

We went to see her today and she looked great.  Four hours a day, she is completely off the TPN (IV feeding).  They usually leave her "plugged in", with a bagillion tubes coming out of her Broviac.  Today, Caty was able to cap off her IV so that, except for the leads that monitor her heartbeat and breathing, she was completely portable!  I got to hold Neely for a couple of hours.  She was mostly sleepy, only waking up to let me know she wanted her pacifier back NOW.  She did have some good awake and alert time.  Caty said Neely had even done about 5 minutes of tummy time earlier in the day.

Other than the rash around the Broviac, she seems to be making progress.  She's off the morphine, but is consolable.  I'm hoping they start feeding her more frequently again.  She was up to 5 cc's milk every 3 hours + 1 cc milk through her g-tube every hour.  Would be nice to get back to that point.

She's not gaining much weight - she was only 8lbs 3 oz last night.  I don't know how big she needs to be for transplant.  It seemed like she was putting on weight better before.  But that was before they stopped the feedings.  Maybe that tiny amount of breast milk did help her put on weight.  Or maybe she just expends more energy now because she is a little more awake, alert, and active.  Not sure, but it would be nice if she could drink more milk.  I fed her at 6PM (she drank like a champ again!) and it just seemed like she wanted more.  It hurts that I can't feed her more.  I have to remember that she is not starving - she is fed, even if it's not the way we prefer.

We practiced changing her ostomy bag today.  Caty walked us through the process and I feel a lot more comfortable about it.  Today might have been our last time seeing Caty - she is off until Thursday.  I definitely want to take Neely home as soon as possible, but I am sad if we truly won't see Caty again.  She has been like a surrogate mommy to Neely.  I know she must be the same way with all of her patients and the NICU is blessed to have her.  I do hope we will be able to see her again before we go.

Neely had a visitor today, Aunt Bekki!  It feels weird to call her a friend - she is more like family.  She's the daughter of Jack and Letty Callaway, who were like another set of grandparents for me and my brother.  It was great to see her!  She is such a great listener and also gave me some great advice.  She also gave Neely a beautiful blanket that my Tante Letty made almost 30 years ago (for Bekki's son).  Words cannot express how precious this gift is.  I don't have a lot to remember the Callaways by - not even a picture - so this ... well I'll always treasure it!

Okay, time to go clean something or go to sleep.  Or pump milk.  Or eat ... did I eat?  Goodnight, my friends :)

Saturday, August 11, 2012

Hello Friends,

We're possibly looking at the middle of next week to bring Neelstar home.  She's doing so much better with her pacifier and bottle feedings.  The last 3 times I was present for her bottle feedings, she took them like a champ!  She's also using her pacifier to soothe herself now.  Tonight, she was actually getting upset when she didn't have the pacifier.  Serious progress for a baby who has oral aversion!

I was very glad to meet the speech therapist yesterday (Thursday).  She walked me through the steps for giving Neely the pacifier and then the bottle.  Before all this, I never realized how important something like the sucking reflex is for a baby's development.  These incredibly "simple" things all affect how the brain gets mapped.  She said that if the oral aversion isn't dealt with early on, a child can have long lasting issues.  Babies learn so much by putting things in their mouths.  She also said that oral aversion in a baby could be about more than just associating it with a bad previous experience (the tube down her throat).  In "short-gut" babies, it might actually be painful when digestive parts start moving in anticipation of food.  More stuff, but I won't bore you with it.

Her rash is looking better.  It's pretty cool that my idea for dealing with the rash around her stoma has been so well-received.  The nurses think it's a great idea and it seems to be working for Neely.  Basically, since they had to take the bag off of her stoma, they were putting a preemie diaper against the stoma to catch the poop coming out.  This wasn't working so great - if the preemie diaper wasn't changed out often, it would just hold the poop against the skin.  I thought it might work better if you cut a hole in the middle of half a preemie diaper, put that against her skin, and covered that with another half of a preemie diaper.  It's worked great so far, but you still have to try to change it at least once an hour.  Neely's had a great couple of nurses the past 2 or 3 days, Jeri and Brandy (probably misspelling those).  They've been awesome at optimizing the process and communicating changes.

For me, the Broviac is the scariest thing.  This is the IV that goes right into her chest.  It's basically her lifeline and it will likely get infected at some point, but I hope that point is not anytime soon.  They'll eventually show us how to change the dressing on this, but I'm terrified.  The doctor is working on finding something a little more secure to cover up this line and we appreciate his efforts.

We meet with the home health nurses and the rep from Coram Infusion again on Monday.  We are all going to learn the Broviac dressing change together, so we are all on the same page when we start to care for Neely at home.  I'm definitely loving how proactive everyone is being.

It was hard leaving Neely tonight.  I'm so happy that she is learning how to use the pacifier, but now that she is using it to soothe herself, I feel bad leaving.  She is starting to flail around with her hands so much more and keeps knocking the paci out and I wish I could be there to put it back in so she can sleep.  She's with Brandy tonight and with Caty tomorrow, so I know she is in good hands ... probably better hands!

I think I finally slept for a few hours last night.  As I mentioned in the last post, these long days are taking a toll on Josh.  He was actually late for work this morning ... he's never late.  He's usually early.  We drove in once from Dallas after watching the Cowboys/Giants game, didn't make it home until 3:30AM, and that boy still made it to work early (probably 6AM at the time).  Anyone who knows him knows he has a strong work ethic and I know he feels awful being late.

I think the long days and the stress is starting to make us a little "short" with each other.  We get into some pretty ridiculous disagreements.  Well, they seem ridiculous now, but don't at the time.  For example, whether Neely can or cannot get on a Jet Ski when she is older.  Right now I'm thinking how blessed we would be if/when that becomes a real argument - like if we could fast forward about 14 years with all this behind us. "Jet Ski" or "no Jet Ski" would be an awesome argument to have.  It's a way better argument than "palliative care" or "transplant", though both have an obvious answer as far as mommy is concerned!

Having a sick child is probably real fertile ground for marital problems.  The stress and the different ways each person deals with the stress is ... stressful.  Must add "don't fight too much with husband" to my to-do list.

Well, it's 2AM ... time to decide whether I should try to sleep or go work on the household stuff that Laney wouldn't let me work on earlier today.  I think my sentences are making less sense, so I'd better stop while I'm ahead.

I miss my Neelycakes.  Wish I was snuggling with her right now.  

Thursday, August 9, 2012

Not much to update for Miss Neely today.  Feels like we are in a sort of limbo.  Her rash and oral aversion seem to have gotten worse.  I know it's a bit of a roller-coaster, some good days, some bad.  Just frustrating that we can't do more for her.  I am meeting with her speech therapist today to go over the techniques for oral aversion.  I wish Josh could be there.

I have not slept more than a few hours in the past 3 days.  I'm exhausted by bedtime, but lately I just toss and turn.  Not sure why (besides the obvious).  I would say that it's because I'm stressed out and worried, but I don't feel the usual anxiety that goes with that.  I just ... can't ... sleep!  Depression setting in?  Symptom of PTSD?  I don't know, but I've got a full day ahead and I need all the energy and presence of mind I can muster.

I feel so bad for Josh.  He wakes up around 3:45AM, leaves for work at 4:30AM, comes home at 3PM, and then has about 5 minutes to sit down before we drop Laney off with mom and head to the NICU.  By the time we get there (traffic), it is after 4 and we only have a couple of hours before they close the NICU for shift change.  Then we go to pick up Laney and are home by 8.  This leaves him just enough time to eat something and pass out.  Sometimes we wait until shift change ends (7:30) to spend more time with Neely and don't make it home until 10.  I know Josh is exhausted, but he pushes himself not only for Neely, but also for me.  He knows I need to spend time with her.  Some days, I am in a cranky mood and he'll say, "oh Mommo ... you just need to see your baby".  He's always right.

think it will be easier when we bring her home.  None of this driving all over the place stuff.  Actually, we probably won't go anywhere for a looong time, unless you include doctor's appointments.  I doubt we can or should take Neely out, even to the grocery store.  I'm probably naive in thinking it will be easier.  She needs to be attended to constantly, so that will be pretty rough when I go back to work.  I guess that's normal baby stuff.  However, a diaper change is way different than, "oh no, her ostomy bag is leaking" when it's 3AM.

I'm so excited to bring her home, but I've also been thinking about what this means for our family.  She's going to be home and we're going to get closer and start to make all of these memories and then ... what if ... what if the worst case scenario happens?  Laney is so young.  How do you explain something like that to a little girl?  Grandma will be the one spending the most time with her when I go back to work.  I look at how close my mom is to Laney - I can't imagine how it will be if ...

Can't think like that, though.  I guess you can, but it's pointless.  We will never be prepared for that.  Never.

Ay-yi-yi ... let's change the mood a bit.  Today, the folks from our church sent some delicious cookies to the house (Tiff's Treats)!  Also, someone at Josh's work gave him a present for Neely - a beautiful handknit blanket that I can't wait to put on Neely's bed (when we put her room back together).  Then, to top it off, the people at Philips (his employer) sent out an email to everyone detailing the fundraisers they are working on for Neely.  It is all so heartwarming and I can't explain how much it helps us in dealing with all of this.  Every time we get a donation check, or someone makes us dinner, or we get a thoughtful email from friends, etc ... it feels like a "move that bus" moment from Extreme Makeover.  We feel so blessed.  Sometimes things start to feel so big and you feel like you're floating out there alone.  Friends and family and kind strangers pull you back to Earth.  It's amazing and we can't thank you enough.

Tuesday, August 7, 2012

Neely's primary nurse, Caty, is back today.  Although all of the NICU nurses are great, Caty just seems to know our little girl so well.  She is thorough and thoughtful,  helpful and hopeful.  We just adore her.

Neely is doing well today.  They've stepped down a little more on her morphine so that is good.  She has been battling a rash around her stoma and Broviac sites.  The area around her stoma is less red today, but is still not ready for the bag to stick.  It's tricky because she is constantly producing poop and it is irritating her skin.  We've had to be very creative in keeping the area dry.  The area around her Broviac looks so horrible!  It can never be exposed to air, so it's all taped down, but her skin is oozing from the rash and I imagine it feels pretty miserable.  I must remind myself that she will not remember this.  

Her speech therapist called today to let us know what the plan is for Neely's "oral aversion".  She has oral aversion because for pretty much most of her life, she had a tube down her throat (called a replogle) and wasn't able to suck on a pacifier or drink milk.  She associates anything in her mouth with something yucky and uncomfortable, so we have to start over with her and teach her how to suck.  The speech therapist is trying a really interesting technique.  Basically, you apply steady pressure against her skin with the pacifier or bottle, gradually working your way up from her hand to her mouth.  You press the pacifier against her palm, her forearm, the crease of her elbow, her shoulder, her neck, her cheek, her lips, her gums, and finally (if she's not showing distress) pop it in her mouth and see if she'll latch on.  We were there for her 6PM assessment and she did great.  It might be a long, slow process, but we are excited to work with her on this.  I think it's a neat idea.  I don't know what the official logic behind it is, but I assume it is a way to give her brain a different association with the nipple, in a kind of "heads up ... here it comes!" sort of way.  

In anticipation of possibly taking her home soon, Caty showed us a couple of things regarding Neely's g-tube (also called a g-button or mickey button).  We have to learn how to manage this, her jejunostomy, and her Broviac.  Thankfully, they will have us "room in" in the NICU for a couple of nights so that we can try taking care of her ourselves, with the benefit of the nurses just a phone call away.  

We met with the home health nurses and with a representative from the company that will manage her IV nourishment (called TPN) yesterday.  They seem like awesome folks and we are glad to have them on our team.  The home health nurses specialize in NICU babies and seem to genuinely care.  This is such a relief.  They said (depending on insurance, of course) they could spend several hours at our home with Neely until we feel comfortable enough to handle her needs on our own.

Besides worrying about that, I am stressing out about getting the house absolutely spotless.  I always stress about this, but now it's really got to get done!  The good thing is that the girls' room is almost done - I suppose that is the silver lining in having SO MUCH extra time before taking her home.  Josh put in some (faux) wainscoting and painted the room a sweet shade of salmony-pink.  It's beautiful ... hope Neelita likes it!  I almost feel like we need to bring in some machines that beep since she is so used to hearing that.

So ... we are hoping that soon we will be able to introduce big sister to baby sister!  I'm sure the excitement of that will wear off after an hour or so, but at least that will be something normal, something expected.  I sometimes let myself daydream of the way this all should have gone.  Right now, in some alternate universe, baby Neely is just fine and the Lucquetes are sleep-deprived and only worried about breastfeeding and poopy diapers, not knowing just how awesome that is.  I get jealous sometimes when I see people with their newborn babies.  I feel so ashamed for those thoughts and I have to apologize and remember that I got to have that experience also, with Laney.  

Well, I suppose this is our normal, our new normal.  I must learn to appreciate that, because ... Neely is just fine.  It's a different kind of fine, but considering her rocky start, even getting to discuss bringing her home is a prayer answered :)