Overwhelmed...

Yesterday morning I sat and held our Ellie bug and was completely overwhelmed.  Not by the fact that she’s not letting us sleep (for the 12^th straight night) or the fact that we’re realizing that there may be more hurdles ahead of her than we thought there were last week… but overwhelmed with how beautiful and wonderful she is.  She’s soft… like, impossibly soft.  I know all babies are soft… but there is something so much silkier and squishier about her skin.  Her pale skin (sorry, babe… that’s Mommy’s fault) is flawless.  Her strawberry blonde lashes are perfectly spaced and curl up slightly.  Her eyes are bright and she focuses on my face and follows my every move (I may or may not have been dancing ridiculously at this time).  Her little lips have that pretty bell shape as she’s relaxed.  She’s just… perfect! 

See... PERFECT!  She has the prettiest little fingers and nails.  And they're so tiny.

When we take her places, we’re often asked about her feeding tube.  No worries – I have no problem explaining it to strangers.  We went out to dinner for my birthday and our hostess just said, “Oh, poor baby”.  Yes… at times, I feel awful for the little bug… but at the same time, I hope that strangers are looking past the tube and seeing our sweet girl.  I know this is a high order – how many times have I seen someone being lifted into their van in a wheelchair and not really looked at that person’s face?  I, myself have a hard time looking past what’s different sometimes unless it’s someone I know.  Hmmm… I’m a bad stranger.  Noted… I’ll do my best to not be that person moving forward.  (And know that I am in NO WAY equating a feeding tube to a wheelchair here - not in the least.)

Our family was adjusted Monday by Dr. Josh Steinke and as he adjusted Ellie, he said, “She’s so delicate.  I’ve adjusted a lot of babies and kids, but she’s different… she’s just so delicate.”  Aha!  That’s the word I’ve been looking for.  She is very delicate, indeed.  She’s soft and warm (usually sweaty)… and squishy.  She’s also ornery and a little spunky.  She’s everything that a little girl should be and for that, I’m so thankful. 

Our beautiful little bug.  For anyone who maybe missed the FB post about her tube last week... she was showing off during occupational therapy and pulled her tube out.  We had to go and get it put back in - which is why it's on her right side now.

I came across a quote this week that read, “What if I fall?  Oh, but darling… what if you fly?”  I want to post that up all over the house… for Ellie, for me, for the boys… for guests.  I don’t know why it spoke to me so much today, but it did.  I think we all battle this… we all worry (in our own way and reason) that we’re going to fall, falter and fail.  It’s a legitimate fear – failure is pretty common.  But what happens if we take the chance at something great (knowing it comes with great risk) and fly?  Oh, what wonderful motivation, right?  I worry every day that I’m not doing enough… for real, I admit that.  I sometimes worry that by putting myself out here, that people will think I’m needy or attention-hungry.  So be it.  In the end, I know that I’m doing the best that I can every day and I pray that by putting myself out here and sharing the ups and downs of our journey, that someone else out there will feel less like an island.  That someone else can relate and feel peace.  

I remember being pregnant with Lance and knowing that the birth experience would be painful… but not REALLY knowing.  My mom said, “Just know that this is the most physically painful thing you will ever do… and it’ll live up to that expectation.  But also know that there are a lot of people in this hospital who are in a lot of pain – you get to bring a baby home after your pain.”  Touché.  And I remember bringing Kaleb home and being completely and utterly overwhelmed with 2 monsters in the house.  He was about 3 weeks old and I went out with friends.  I felt like a mess, but tried to hold it together.  A close friend said, “It’s really hard, isn’t it – bringing that second one home?”  YES!  It was.  She also said, “Give it a month… you’ll get into your routine and you’ll be okay.  You’ll have a new normal and it’ll be wonderful.”  Why didn’t anyone else say that?  I suddenly felt like someone got how I felt and even though it didn’t change things on the home front, it somehow made it all seem normal.  I’ve needed these people in my life… the ones that are real and blunt… the ones that don’t sugar coat things, but also have encouragement in their words.  The ones that let me realize the feelings that I had without making me feel inadequate or weak.  That, I guess, is what I hope this story can be for someone else.  I initially started this blog to keep people up-to-date on our little bug, but found myself unloading on it, too.  Not for pity, for crying out loud, I don’t need that!!  I think it’s true for everyone, though… that when you share what’s inside of you… what’s raw and emotional and real… that’s when people are able to relate to you and share with you.  It’s what draws us closer together.  I’ve not always been this way – in fact, I was pretty much the opposite for a long time.  But who has time for pride these days, right?

Okay – sorry for that random tangent.  Ha!  I do have a question for you all.  Have any of you had an infant who was afraid of the dark?  It sounds crazy, I know.  But I think this is true for Ellie.  We’re taking her to an audiologist next week because I’m almost certain that she’s not able to hear right now.  Her pediatrician isn’t able to do this testing because the inner ear structure in babies with Down syndrome is much smaller than those of typical kids.  The thought of her not hearing makes me really sad, but we don’t know for certain yet, so I’m trying not to get ahead of myself.  Let’s just say that she doesn’t respond to my voice (like I’d expect her to).  She doesn’t soothe to the sound of music (unless it’s so loud you can feel it in your chest… like at church).  She doesn’t flinch at sudden, loud noises.  Concerning – for sure.  But what I realized yesterday is that the poor bug already can’t hear things… and at night, she can’t see anything in the dark, either.  Soooo… she’s like Helen Keller at night.  [Okay, my inappropriate humor makes me chuckle a little bit there.]  But really, I’m worried about our bug.  Hopefully there is just some blockage that can be drained or removed to fix this issue, and heck, I can sleep with a light on if that helps.  At this point, I’m ready to try anything to help this little one sleep.  She’s been up for 5+ hours at a time at night (upset the whole time) for the past several nights.  She’s been having these night fits every day since 10/18 and they always start between midnight and 3am… so Brandon and I are pretty delirious most days.  If I woke up and couldn’t see or hear, I’d be screaming my head off, too, though.  We tried sleeping with lights on last night – and wouldn’t you know it, the sweet girl slept – like an angel!  This might be a fluke, but I sure hope it isn’t.  I got up for work this morning and felt… alive… for the first time in a few weeks.  Hallelujah!  We've tried a million things to help her sleep already (nasal drops, a suction machine, a swing/vibrating seat, humidifier, swaddling, gripe water... the list goes on).  If lights-on tonight works again, I'll be beyond thrilled that the solution was so simple.  Fingers crossed!

So there may be more obstacles with this hearing situation in the future… maybe.  But for now, I’m still just going to sit and admire how strikingly beautiful and perfect she is.  I couldn’t possibly love her more than I do now, but I thought that last week, too… and I proved myself wrong.

Well, hello again Dayton Children's...

Friday night Brandon and I had our first night out without the kiddos.  My mom came to our house and watched all three of them for us so we could go to our friends’ wedding.  Date night – woot, woot!  With the boys, I think we’d left them with my mom when they were 2 or 3 weeks old.  Ellie is twice that age (6 weeks), but I felt like we could leave and knew she was in great hands!  On the way to the wedding, our cardiologist, Dr. Luby, called my cell to check in on Ellie.  Have I mentioned that she’s called us every day this past week?  I don’t know if I should feel special or be a little more concerned than I am right now.  Ha!  Either way, I feel great knowing that we have a great cardiologist.  She told me that if anything changes in Ellie’s behavior or feeding patterns, that I needed to give her a call.

Ellie did great for Grandma and was a happy little snuggle bug when we got home around 11pm.  At 3am, however, she started to fuss.  By fuss, I mean cry and scream and flail her limbs.  She sounded like she was in pain and was not consolable at all.  She’d sleep for no more than 10 minutes at a time.  I took her temperature, and it was normal.  I knew Dr. Luby was on call through the weekend, so at 8am Saturday morning, I called Children’s to have her paged.  She called me back right away and I told her about Ellie’s crying fit that had now lasted 5 hours.  She told me to take her to Children’s ER because that was entirely too much for Ellie to handle.  I started getting ready to go, but then walked out to the living room and saw that Brandon had finally gotten Ellie to sleep.  He said, “can we give it an hour and see how she does, first?”.  Absolutely!  

Daddy got our bug to sleep after a major fit through the night.

I really didn’t want to bring her in and expose her to sick kids if I didn’t have to.  Ellie was peaceful and slept most of the day on Saturday.  Dr. Luby called us late in the morning to check in.  She said, “I called the ER to see how she was and they said she wasn’t there”.  I explained that she had been sleeping and that we were going to try keeping her out of that waiting room if at all possible.  Dr. Luby was alright with that.  Saturday was glorious!  She slept like an angel all day and we had a great family day.  We went out to lunch together and picked up some snacks and movies for a family night in.  Brandon fell asleep on the couch after I’d taken Ellie to our room with me.  Somewhere between then and 2am, the boys got out of bed and found their way to Daddy.  All three Ward boys were sleeping in a pile on the couch when I went out to warm up a bottle for the 12:00am feeding. 

During the feeding, Ellie woke up and was upset again.  I tried everything I could think of to get her to calm down and sleep.  Nothing worked.  Part of me was afraid that she might have colic (we’d just talked with friends about their battle with colic in their little one).  That was NOT something that I thought I could handle.   I would get Ellie calmed down here and there, but again, it never lasted more than 10 or 15 minutes.  She was drenched with sweat and panting for air.  When she’s upset, her stomach is tight and it’s almost impossible to get the milk through her NG tube.  I was at a complete loss and at 4am, sat in bed sobbing into my hands because I was spent and had no idea how to help this little peanut.  I knew that something was hurting her, but I had no idea how to make it better.  I know all parents can relate to this feeling at one point or another.  After throwing my own little fit, I pulled myself together and decided to listen to what the cardiologist had told us to do the day before.  I started packing up a diaper bag, got dressed & brushed my teeth, pulled the boys’ seats out of my van, and headed down to the ER at Dayton Children’s.  Thankfully, the waiting room was empty at 5am.  There was one family in front of me checking in, then it was my turn.  When the receptionist asked me what was going on, I broke down.  Like a chump, I know.  I said, “I’m so sorry… I don’t know why I’m emotional… but I haven’t slept”.  Those poor ladies… I’m sure they’ve seen this plenty of times, but they really only got Ellie’s name and birth date before they brought us into a room in the ER.  By then, I was able to tell them what had been going on and that the cardiologist told us to come in.  They took Ellie’s vitals and found that she had a fever of 102.4.  Eeeek!  I’d checked her temp under her arm on Friday night and it wasn’t elevated.  Now I felt really bad for waiting.

For those of you who’ve had a little one w/ a fever, you probably know that a fever over 100.4 in a baby Ellie’s age is considered an “emergency” by the pediatricians.  102.4 was concerning for them… and when babies are under 2 months old, the standard battery of tests for a high fever include: a straight catheter to test urine, a blood draw, suctioning of the sinuses to collect mucus, and a spinal tap.  UGH!  The room was buzzing for the first hour or so while they collected all of these right away.  Ellie was still upset, but I was happy that the testing didn’t make her any more upset than she already was.  They also put her on monitors and checked her pulse ox.  I let them know that her baseline was in the low 90s.  She was in the low to mid 80s, though, so they started her on a little oxygen and also took a chest x-ray to check for pneumonia.  Once they had what they needed, I sat in her bed and cuddled her, waiting to find out what the next step would be.  They called Dr. Luby to let her know that we were in the ER and Dr. Luby confirmed what Ellie’s baseline was for heart rate, retracting and oxygen saturation.  She also told them that she did NOT want Ellie on oxygen for any longer than what was absolutely necessary. 

 Teamwork!  Ellie's getting her IV put in.

She finally slept... for a little while at least.  Not digging the peach gown, 

but hey, what are you gonna do? 

Giving us her ornery face and flailing around the purple monstrosity that is her IV.

We were admitted and Ellie was taken off oxygen by the respiratory therapist.  She kept her oxygen saturation up around her baseline just breathing on her own.  This was great.  Dr. Luby explained that administering oxygen dilates the blood vessels in the lungs… not a terrible thing for most people, but dangerous for Ellie who already has so much stress on the blood vessels in her lungs.  Too much oxygen could cause permanent damage… and we weren't sure what “too much” oxygen was, so it was best to avoid it if possible.  Sounded good to me!

Through the day on Sunday, the nurses would update me on how Ellie’s test results looked.  Her bloodwork showed high levels of potassium – so Dr. Luby suggested that we do not give her Aldactone (which helps her body hold on to potassium while on her diuretic).  The nurses told me that her mucus sample was clean and that all of her fluids tested negative for viruses (they test for 5 different viruses).  We’d have to hang out for about 48 hours until they were able to see if any of her samples grew bacterial cultures.  Her chest x-ray was also clear, so no pneumonia.  Sunday just felt like a million things were happening and I was terribly sleep deprived, so I wasn't 100% in tune to what was going on.

Back in the cage.  This time... maybe she's a cage fighter... she's tough like that.  

Sunday night, around 3am, Ellie started having another fit.  I let her nurse know that she was upset and told her that this was what had happened the past 2 nights.  They gave her a dose of Tylenol.  I tried to soothe her through her feeding, but nothing was really working.  After 45 minutes (now into the fit for about an hour and a half), I called the nurse again and told her that she was still miserable and asked if there was anything else we could do.  The nurse came in with a bouncy seat for Ellie, but when she saw how distressed she was during her fit, hooked her back up to the monitors.  Ellie’s heart rate was high (really high)… floating between 190 and 210 beats per minute (her baseline is high at about 160 bpm).  Her respiratory rate was also high (70+ breaths per minute when her baseline is around 40).  Ellie’s oxygen saturation was dipping down into the mid 70’s at times.  Respiratory came in right away and put Ellie back on oxygen.  They suctioned out her nose and dropped in some “Little Noses”.  This was the first time that she’s gone on monitors in the midst of a fit.  When we came into the ER, she’d already been through the roughest part of her fit.  This was eye-opening to me because now I could see how much she was struggling.  I felt awful – but I was relieved that we were in a place where she could get help.  Within 15 minutes of getting suctioned, oxygen and nose drops, Ellie was calm.  Holy cow – what a difference from the 2 nights before!  This fit lasted just over 2 hours altogether.  Once she was calm, they took her off of oxygen and switched her tube over to just air… still flowing into her nostrils, but this air was no different than the air in the room.  Ellie responded fine to that and maintained her baseline on regular air (thank goodness because we knew we didn’t want her on oxygen any longer than she needed to be). 

She's Leonardo... obviously!  Her brothers helped pick out this outfit.  

Her eyes look wonky, but only because she was falling asleep.

On Monday, Dr. Luby came in to check on us.  As she walked into the room and started talking, Ellie smiled at her.  Intentionally!  This was Ellie’s first real smile.  Dr. Luby said, “Yeah, she’s smiling at me because she knows she’s in trouble and she’s trying to flirt her way out of it”.  Ha!  Kinda sounds like our kid.  Dr. Luby said that Ellie looked great and that she was certain that Ellie had a virus.  I asked why the labs came back negative, then and she said that they only test for 5 different viruses (and listed them for me)… she said there are thousands of viruses and everything that Ellie had been doing over the past week made perfect sense.  On Wednesday when I’d talked to Dr. Luby, I told her that Ellie had diarrhea (and we adjusted her meds a bit).  Friday and Saturday nights were the nights where she was inconsolably cranky.  Sunday morning she had a fever and had been congested all weekend.  This all pointed to a viral infection.  Dr. Luby also said that the person who did the spinal tap did an amazing job and didn’t get any red blood cells in the sample at all.  So from the spinal fluid, Dr. Luby could see that the monocytes (a type of white blood cells) were out of their normal range… also consistent with a viral infection.  Ahhh – finally we had an answer to what was up with our sweet girl.  Ellie was really alert as we talked and she just stared with bright eyes up at Dr. Luby (which was adorable). 

Bright eyes after we took the air off of her (Tuesday 10/21)

Dr. Luby asked what questions I had for her.  I asked about using forced air at home.  Dr. Luby said it might be a possibility, but she was convinced that the change in Ellie’s fit had been a result of getting her nose suctioned and adding nasal drops.  I asked about a timeline for surgery and she said we’re still on par for 4-6 months of age.  She said, “honestly, after talking with you last week, I was afraid that I’d come in and Ellie’s symptoms would be heart-related.  If that would have been the case, we’d be prepping for surgery soon.  Because her symptoms are due to a virus and because she’s gaining weight beautifully and maintaining her baseline, we are safe to hold off yet.”  Ahhh – that’s good news!  She also explained that Ellie gaining weight has a two-fold bonus for surgery.  She said that not only is a bigger baby anatomically better for the surgeons (operating on a little bit bigger heart), but a baby with extra weight will have higher levels of nitrogen in her system… which allows her to handle surgery and recover better… it also helps her scar heal quickly because the body has excess protein to use to build tissue.  Hmmm… didn’t know that.  Ellie weighed 8 pounds, 1.6 ounces this morning (Wednesday, 10/22) and is 7 weeks old today.  She's almost up to the birth weight of her brothers.  She had another fit last night (from 2-4am).  I'd finally gotten her to sleep and was looking forward to sleeping for about 45 minutes before logging on for work, but the phlebotomist was in to draw blood at 4:30am - no such luck on the sleepy time.  Speaking of sleep, though...the “parent beds” in the 3 West wing of the hospital are not as nice as the beds over in 3 East… just sayin’. Looking forward to going home sometime this afternoon.  Because she's now had 5 straight nights of lengthy fits at night and at roughly the same time, they'll use this (along w/ the pattern of how she does at home) to determine if this is something colic-related or not.  Here's hoping that the answer is a big fat NO and that suction and saline drops in her nose clear her up so that she can adequately oxygenate herself and calm down.

My next update WILL be from home (hoping that the confidence in that statement ensures its truth).  We have Trunk or Treat & a Halloween party this weekend.  Last night I worked on Halloween costumes from the hospital room… not ideal!  And for those of you who don’t know… Halloween is a big deal to me and I LOVE making costumes for the kiddos.  Don’t judge me this year, okay??  I may or may not have just started on them last night.  Oy!  I don’t think they’ll even be in the running for best costumes in the short history of costumes on our kiddos.  But maybe a quick recap of how cute they were the last 2 years will make me feel a little better about them being pretty sub-par this year.

2012:  Bikers!

 Lance had a leather vest & chaps w/ fringe... riding gloves, tatted up arms, 

a Harley shirt, bandana & sweet 'stache

 Kaleb had a biker jacket, "Born to Ride" shirt, facial hair, bandana & sidecar

2013: Throwback characters (for the boys)

 Our trunk was Duck Dynasty themed... which is why B and I are dressed up, too.

 Lance was Edward Scissorhands (my favorite costume creation EVER)

Kaleb was Bob Ross (painting happy little trees)

Again – thank you for truckin’ along with us.  We love & appreciate your support & prayers!

A humbling experience...

If I had only one word to describe our experiences over the past 6 months of this journey, I’d have to say “humbling”.  We’ve been brought to our knees for different reasons along this path – and through this, have learned so much about ourselves and our relationships.  I’ve never been through anything that made me feel more vulnerable (and helpless at times) before.  While it can be painful, it’s also refreshing sometimes.

Medically and physically, we’re amazed every day by the things that we have to teach Ellie… or that she’s just not able to do - things that were 100% natural for our boys.  Ellie didn’t come with the coordination it takes to breathe and eat at the same time.  While she was able to suckle, she didn’t have the strength to draw back using her tongue and improvised while she ate (smart cookie).  We’ve spent a lot of time with speech therapists working on pacing her as she ate and helping her learn to use her tongue to draw milk out.  With our boys, I remember nursing them through the night.  This was stressful because (like all new parents) it required much less sleep than I’d become accustom to.  However, with the boys, I totally took for granted the fact that I could lay them next to me and nurse them… usually falling asleep in the process and waking up later to a sleeping baby with a full tummy.  I dozed off Saturday night while gavage feeding Ellie and spilled milk all over myself and my bed… and may or may not have said a bad word in the process.  Later that night, Ellie was really upset and kicking around while I was feeding her.  She kicked over the pump full of expressed milk (again… maybe a bad word escaped my lips here).  And somehow in her fit, her little monkey toes snagged her feeding tube and ripped it off of the syringe holding her milk.  Again, a couple of ounces of fortified milk spilled all over our bed and me.  Oh the smell of formula on linens… mixed with breast milk… which is sticky when it dries on your skin.  Ick!

There are scary things that come along with this too.  For our boys, if they were to get sick, they could vomit… it wasn’t fun, and it still sends a new mom frantically reaching over to flip over her baby… but with Ellie, she’s a little more helpless.  She used to be completely silent when she started getting sick.  She’d silently gag (and retract big time), then milk would start oozing out of her nose.  Her airway was completely blocked, but she didn’t have the muscle tone to cough and clear her throat.  Now, she’s strong enough to gag and make this horrible sound.  Again - humbled when I realized that I was celebrating the fact that my baby was now strong enough to audibly gag and cough.  Silly, right?  The struggles aside, I have no doubt that this little booger is going to conquer each obstacle in her path… even if she has to try 10 times harder than her peers to do so… I just see that fight in her every day and I know this to be true.  I’m just amazed at all of the things that we never thought of before that can be monumental tasks for Ellie.

The boys love to help out - here Kaleb is offering Ellie her bottle on 10/13

And if one helps, the other has to, too.

I know she's upset here... but I think she's channeling her inner 2Pac 

(I just dated myself there, didn't I?)

One of the most humbling experiences we’ve had is learning when to ask for help.  Fortunately, we have friends and family that have offered so much support along the way.  We don’t always have to ask… sometimes people just act, and that’s amazing.  I tend to be proud (B is even more so), so when people have asked to help out in the past, I’ve usually thanked them and told them I’d let them know if I needed anything.  I still do that some, but only when things really are in order.  I had to come to a point where I said, “Okay, when I offer to help someone out, I really mean it… I’m not just being polite.  I usually want some kind of task.”  So when someone says, “let me pick something up for you” or “I can get your boys” or “can we pray for you”… I’m learning to accept the offers to help and be grateful.  Pride can get us in a lot of trouble, right?  I don’t know what we’d do without those who have pitched in to help with our boys, or with a meal, or sent cards or notes to us, offered hugs and prayers, or any number of other things.  We truly do appreciate all of this!!  As much as it pains me to admit that we are far from having it “together”, it’s also heartwarming and I’m so relieved when burdens are lifted for us.  We know that we absolutely could NOT do this without your support, and we’re humbled by your love.

I’ve also been very humbled in my relationship with my husband lately.  When we first got Ellie’s diagnosis half way through my pregnancy, it instantly brought us closer together.  We’d share our fears and anxieties.  We’d cry and let each other be vulnerable.  We promised not to judge each other for our feelings or questions and we promised to share it all and unload the baggage on each other.  This was very helpful.  Once we came to terms with everything, though, and especially after Ellie arrived, I became much less desirable to live with, I think.  Brandon didn’t sign up to have a stressed out, emotional, exhausted wife.  He signed up to date a spunky girl who was full of life and laughter.  One who had all kinds of ambitions and dreams and whom was always up for fun and adventure.  That’s the girl he wanted to marry.  Nine years later, I feel like he has the opposite.  And not only is that wife tired and emotional, she’s also trying to plan out a rigid schedule and is quite grumpy some days.  This was a hard realization.  It actually didn’t hit me until last week when I realized that I get frustrated because I’m doing x, y and z and he’s doing… what?  In reality, I knew he was doing a ton and shouldering a huge burden for me.  And somehow, he was still that fun-loving guy from nine years ago… even if I’d lost my younger self along the way.  As much as I hated to do so, I had to hang my head and admit failure.  Ugh.  On the bright side, soon afterwards we went to a wedding (our first outing without the kiddos since we had Ellie).  Brandon was his crazy self on the dance floor and for a few hours, at least, we slipped back into being those young, crazy kids without a care in the world.  And although his main goal is to embarrass me to death on the dance floor, it’s hard not to love him for it.  He lets me be a busted up mess, and for this, I’m incredibly grateful… but I’m still on a mission to revive a little of that 22-year-old in me.

Lastly, but most importantly, I’ve been humbled by how God has strengthened us through all of this.  We’re not doing anything out of the ordinary here.  We’re doing what every parent in the world does.  I like to say “we do what we do”… because who doesn’t try their hardest to do what’s best for their family, right?  At the end of the day, it’s the peace that our faith has given us… it’s the strength from the Father and the hope of healing that gets us through the long days and nights.  It’s the knowledge that Ellie is here for a specific purpose and that she’ll bring joy and hope and life to others.  It’s the faith that we have in His plan for our lives.  We know that this adventure has been blessed in so many ways and we hope that our journey can help others through similar obstacles.  This is what helps us share our story, even when sharing leaves us raw.  It’s the “God moments” we have along the way that keep us going… and sustain us when we’re especially weak.  We know so many people who have been through so much more than we’ll ever go through… but if we can relate to others through this, and help them find hope and peace in His arms; then every sleepless night is worth it.

Okay, maybe this was a little too personal for some… if so, sorry.  Again – as many of you know, this blog is where I just unload ;).  Thank you again for following along.

Another day... and an NG tube

At her morning weigh-in on Monday, 10/6, we had found out that Ellie lost 50 grams in the previous 24 hours.  In the hospital, she'd lost 30 grams the first day (Thursday to Friday), but regained 75 grams over the course of the next two days.  This means that at Monday morning’s weigh-in, she was below her weight at admission.  Dang it!  We were really hoping to go home after a 3rd day of weight gain.  When the team of doctors came around, they let us know that at this point, it would be best if they inserted an NG (nasogastric) tube... a.k.a. feeding tube.  The doctor said, "how do you feel about this, Mom?"  How do I feel?  Well, a bit deflated, to be honest.  But I don't see how my feelings or my preferences should ever come ahead of what is right for Ellie.  So I simply said, "I feel like if an NG tube is what is best here, then an NG tube is what we'll do".  

Shortly thereafter, a group of nursing students came back in with our nurse and a doctor came in to insert the tube.  The first try was unsuccessful.  The tube they were using (which was a small pediatric tube) was too big to fit through Ellie's nasal passage.  When it was pulled out, her little nose was bleeding a bit.  They called the PICU and got a tiny tube to use.  There are ones that are a little smaller (like the one she had for a day in the NICU, but they only last 30 days).  We aren't sure how long she'll have this tube in place, but we'd hate to put in a temporary one only to replace it and make her go through this all over again.  Ellie hated the insertion of the tube (as I can imagine everyone does), but calmed down shortly after it was in and secured.  Then we took her down to X-ray to make sure that it was placed exactly where it needed to be.  Then began the education on feedings and care for the tube.  There are 20 cm of tube inside (reaching from her left nostril to her stomach) and 75 cm of tube external.  This means there are about 30 inches of this tube outside of her body that we'll use to push feedings and medicines through.  My first thought: "this will look like a lasso to the boys, for sure".  So we worked out a way to secure the tube directly to Ellie's abdomen, under her clothes, so that it's out of the way and not likely to get snagged on anything.  I don't think the boys will mess with the tube that's on her face, but the extra cord surely looked like something that'd be irresistible to a preschooler and a toddler.

I sent this to Brandon saying "Daddy, check out my new bling"

Tracy sent me a picture of Lance "helping" her out at work – adorable!  Then said, “Lance wants to see a picture of Mommy and Ellie”.  So I sent him a goofy picture of myself and one of Ellie with her new “bling”.  He said, “what’s on her face?”.  Tracy explained that it was something Ellie needed to help her eat and that he was not allowed to touch it.  He said, “Okay, can I watch a movie now?”  Let’s hope he’s always this indifferent with it.

Ellie’s meds (Lasix and Aldactone) were also increased on Monday to keep up with her upcoming weight gain.  She, indeed, gained weight the next 2 days in the hospital and we were released last Wednesday (10/8).  Ellie was 5 weeks old and I was exactly 1 week away from going back to work.  EEEK!  I had a lot to do in a week to get back into a schedule that’d be conducive to working again.

Thursday brought an appointment for me (my 6-week follow-up after delivery), our first appointment with home health (they’re coming out twice a week to weigh Ellie), a quick meeting with the medical supply delivery guy, and dentist appointments for the boys.  We wrapped up the night with a family gathering at my mom & dad’s house.  Friday brought on foot surgery for me (no biggie), and I was able to snap a few fall pictures of the boys on my way to the doctor’s office.  We also went to visit Brandon at the job site to enjoy our last Friday picnic with him before I headed back to work.  Friday night, my aunt was in town (she lives in the Atlanta area), so we went to visit her at my grandparents’ house so they could all see Ellie. 

Our sweet Mookie (Lance).

And little KeyKob (Kaleb)

It took like 15 shots to get them to look like they liked each other!

While the NG Tube seemed daunting at first, it’s not been a bad adjustment at all.  Ellie is now more alert and she’s started to wake up and let me know when she’s hungry before some feedings.  She still sleeps a lot, yes, but it’s wonderful that she has more energy now and she’s starting to regain those puffy cheeks I love so much.  Is the feeding schedule different?  Absolutely!  Ellie is no longer nursing (which makes me sad, but it was too exhausting for her).  Instead, I’m expressing milk for her to eat.  We fortify the breast milk with formula to beef up the calories and we add additional formula (mixed for amped up calories) to get up to the volume that she needs to take in.  We let her drink from a bottle until she’s tired (we can’t let her eat for more than 30 minutes because she works too hard to do that), but she usually tuckers out after 10 or 15 minutes.  Then we take whatever she hasn’t eaten (usually less than 20 mL of the bottle) and gavage [hold up a syringe full of milk and let gravity trickle it through her tube] it through the NG Tube.  She takes 2 ounces at each feeding and is kept on a strict schedule to eat every 3 hours.  Once she’s done eating, I try to pump, then clean up all the equipment.  The process takes about an hour, but I’m finding ways to streamline it here and there.  I need to do this because hour-long feedings, 8 times a day makes this a full-time job.  Worth it, yes… ABSOLUTELY… but a little exhausting at times.

On Monday, we were due back to cardiology to see how Ellie’s weight gain was going.  On their scales, she weighed 3.255 kg (she weighed 3.085 kg at discharge last Wednesday).  Dr. Luby was thrilled.  Ellie was gaining an average of 34 grams a day (about an ounce).  Her new weight puts her over the seven pound mark at about 7 pounds, 2.8 ounces.  Yahoo!!  I told Dr. Luby that Ellie had done great through the weekend and the night with her feedings.  She didn’t want to eat at all at 9am, but this is where the tube is a blessing, I could get those 2 ounces in her even if she didn’t want to eat.  We scheduled a follow-up appointment for the 27^th and talked about how she was doing great now and that we’d look at maybe adjusting her medications at her next appointment.

As soon as we were home from that appointment, Ellie needed fed.  Right away, she started sweating during this feeding.  She continued this trend through the day and night on Monday.  This time, it wasn’t that she had beads of sweat across her brow, though.  This time, she’d start sweating within the first 3 or 4 minutes as she bottle-fed and she’d sweat enough to soak her hair.  Really?  This wasn’t what I wanted to see.  She was breathing heavier (which Dr. Luby noticed, too) and was having trouble breathing during feedings.  She’d take a gulp or two of milk, then pant heavily 10 to 15 times before taking another drink.  She would tire out very quickly – only getting 10 to 20 mL of the 60 mL bottle.  The rest would go through the tube.  This was a totally different pattern than what she’d had just 24 hours earlier, so on Tuesday morning, we called our cardiologist back.  This little monster sure keeps us on our toes.

Dr. Luby had us increase Ellie’s meds from 2 doses a day to 3 doses per day and gave specific times to push those.  Did I mention that we’re able to push her medicine through the NG tube as well?  That’s kind of nice because then we know for sure that she gets the full amount.  Dr. Luby asked to see Ellie again today and said, “Wednesday is your first day back to work, right, Jackie?”  Yes… indeed it is.  She was able to accommodate us for a late afternoon appointment so that I don’t have to adjust my work schedule on my first day back.  Awesome! 

Dr. Luby called this morning, though (it’s Wednesday), to check up on how the night went and I let her know that Ellie was still sweating through feedings… not as much as she had on Monday and Tuesday, but still sweating and only eating 10-20 mL of her bottle.  She also had diarrhea.  Dr. Luby adjusted medication – kept the Lasix on the same schedule we’d started Tuesday, but took away a dose of Aldactone in the middle of the day (Aldactone is really there to help Ellie hold on to potassium and not pee it out).  She also said that we need to change up the feeding routine so that we’re only offering Ellie her bottle twice a day.  For the other 6 feedings, we’ll just gavage everything through the NG tube.  This way, Ellie still gets the “treat” and therapy from sucking, but she doesn’t have to put in all that work each and every time she eats.  I’m beginning to think that we have the laziest baby in the world… ha!  But for now… this is the plan!  We check back in the Dr. Luby on Friday and go back for a visit on Monday to see how it’s going. 

Oh, and I posted a schedule of medicine & feedings (along w/ directions on how to gavage & how to mix her milk and formula) on our fridge and keep another one in the diaper bag.  I also set alarms on my phone to go off when it’s time for medicine.  I need to do something to keep it straight in my brain, right?

Did I mention that a volunteer came by while we were in Children's with a furry friend to visit Ellie??


Bloopers from the photo shoot with the boys (this is how 90% of the pictures looked):

I don't even have an explanation for this... 

He's not trying to be smoldering here... just grumpy

I have no idea what the deal is with the arms

Dayton Children's (and lots of pictures)

We were admitted on Thursday for monitoring on Ellie.  In our last post, we wrote about her being in for "failure to thrive".  We are now on our 4th day at Children's and if all goes well, we only have 1 more day.  Here is a recap of what we've been up to (spoiler alert: it's not very exciting).  But hold tight, I promise some cute pictures of Ellie & the boys.

Thursday night was brutal.  We were supplementing Ellie's feedings by adding 1.5 Tablespoons of formula to every 3 ounces of milk.  This made her cranky and occasionally, she'd get sick after taking those bottles.  When this happened, she'd silently gag a few times before milk would start oozing out of her nose.  Thank goodness I was right there for this because she doesn't have the muscle strength to clear this all out of her throat.  I flipped her over to let gravity help drain out her nose and mouth.  I knew for sure that we couldn't give her formula like this after 6pm because if she got sick at night, I wouldn't be able to flip her over right away.  She was still uncomfortable and upset most of the night and her alarms would sound on the monitors regularly because she'd breathe too fast or too slow.  We also had a revolving door as hospital staff came in and out constantly.  I understand that they have a job to do and I'm thankful that they kept such a close eye on her... but it was rough on Mom and Dad that night.  We survived!

The doctors weigh Ellie each morning at 6 am.  At her Friday morning weigh-in, she'd actually lost weight from when we were admitted.  Dang it.  The goal is to have her gain 1-3 ounces per day.  They'd like to see it on the higher end of this range because going into cold and flu season, a little cold could wipe out small weight gains and we'd be back to square one.  Anyhow, Friday was a very busy day for us... starting by 5 a.m. with blood draws (Ellie HATED these).  Our resident, Kyle, came by early to talk to us about the plan and who we'd be seeing that day.  He said that Ellie's hematocrit was high in her blood sample... meaning that either she's a little dehydrated (maybe due to the diuretics) or maybe because her oxygen saturation is low and her body is pumping out more hemoglobin to account for the low oxygen.  I'm not sure that we ever got to the bottom of this, now that I reflect on it.  He also said there'd be several teams by to see us that day.  The first group of doctors that came around were 3rd year residents (Kyle was in this group).  Their teacher, Dr. Sandlin, was with them as well.  She told the students that she wanted them to listen to Ellie's heart and if they couldn't hear her murmur, they needed to change professions.  Ha!  She said, "This is one of the loudest murmurs you'll hear in training, and if you can't pick it out, you have no business in medicine".  She really is a very nice lady, funny too... but I had to laugh at her bluntness.  I guess that it makes sense that if a small hole in the septum causes a murmur... when most of the septum is missing, the murmur has to be pretty obvious, right?

She came back around in the afternoon with another group of students - this time, they were only in their 2nd year of medical school and they hadn't really worked with real patients yet.  She only told them that Ellie was admitted for failure to thrive and she asked them to take a listen and tell her if they noticed anything different.  All 4 students listened and were really quiet.  One finally said, "Is it a murmur?"  Bonus points for that guy!  Then she explained to them that Ellie has an A-V Canal defect, so her murmur was super loud (she even let me listen in, too).  She then asked her class that since they knew she had an A-V Canal defect, "what else should you be looking for?"  They started rambling off all kinds of guesses - it felt like House to me.  She told them to look at her face closely and see if they could come up with anything else.  One of them shyly suggested, "does she have Down syndrome?" (almost as if guessing this might offend me if it wasn't true).  Then the teacher told them that if an A-V Canal defect is present, it's almost always associated with Down syndrome.  I'm glad Ellie can help teach new medical professionals!

Friday morning - she actually lost weight... boooo

Also in on Friday was the registered dietitian.  When she asked about Ellie's eating and her supplementation, she was a little shocked.  She said, "oh... those are supposed to be TEASPOONS of formula added, not Tablespoons."  Well, that makes a big difference!  Tablespoons were written on the script (and is how you usually mix formula with water), but was thicker than we needed and is why Ellie was so gassy and had troubles eating.  Soon after, the speech therapist, Katie, came in to watch me feed Ellie.  She was nothing short of amazing.  She sat with us for an hour and talked through everything about our nursing and bottle feeding patterns, showed me feeding positions to try... how to support Ellie's jaw to make it so she didn't have to work so hard.  She gave us restrictions on timing for feeding, changed up the bottle, the bottle nipple... basically EVERYTHING about her feedings.  Katie was a wealth of knowledge and everything she suggested made perfect sense and started a whole new routine for us.  Ellie started to eat better, seemed to have energy through her whole feeding period, didn't have tummy aches and rested nicely between feedings.  Great success!  She also slept great Friday night.

Saturday morning - I think the additional ounce was deposited in her cheeks

Ellie heard it was cold outside & started practicing her snow angels

Saturday and Sunday mornings, Ellie's weight increased.  She gained 1 ounce both days.  They'd like to see her gain a little more, but 1 ounce was the minimum of the "okay" range... and I guess Ellie isn't an overachiever in this aspect.  She's just skating by with the minimum right now.  Slacker!  We had lots of visitors on Saturday, which was nice because Brandon was still at work all day.  I had plenty of friends and family stop in to keep me company.  They made my day go by so quickly.  We had friends join us Sunday morning and eat breakfast with us while live streaming our church service - woot, woot!  And later, other visitors to cuddle on Ellie.  Fabulous!  I sort of feel like I'm stuck in this box for a while, but the company sure makes it feel more like home.  The doctors said that if Ellie could gain at least an ounce in her Monday morning weigh in, we could look at going home on Monday.  Yahoo!  It'll be nice to be in our own house again and I miss our little people like crazy!  Those little guys fill our house and our days with so much life it's ridiculous.

On that note, I have to say that I have no idea what the heck we would do if we didn't have a team of people helping us out.  We have people that are praying for us, people that come by to visit or bring food, we have people who have helped us with the kiddos through appointments and hospital stays, co-workers that helped me tremendously when I had to cut out for appointments during pregnancy, friends and family who have helped out with our house or yard or animals... the list goes on... it's just absolutely amazing.  I know that many of you who read this have played a big part in this support system and we are incredibly grateful for you all.  Thank you, we love you!  God Bless you!

When I called my mom on Wednesday to tell her that we'd need to take Ellie in on Thursday at noon, she said that she'd get our boys and not to worry about them for as long as we needed to have Ellie in Children's.  By the time we get home, we will have spent at least 12 days in the hospital over the course of a month... and for all 12 of those days, we've had people scoop up our boys.  This doesn't include the times when people have taken them for us for appointments.  I know that our boys are crazy and full of energy and I know that they tire me out (and I'm used to their energy).  I know that it's no small feat to house a toddler and a preschooler when that is not part of your regular routine.  I can't say enough how grateful I am for this support.  The boys... well, they think it's vacation!  They start out at one house, then say they want to go to another house... and they get bounced around (and totally spoiled).  It's usually between my mom & dad's house, and my siblings' houses - at least while we've been in the hospital this month.  They get to play with their cousins and go on adventures.  They love this.  I know they're in great hands and I love that I randomly get pictures and videos sent to me of what's going on with the boys.  I miss those boogers so very much!  Here are some of the images from this weekend... I said SOME... we have more (which I totally adore).

Thursday night after baths.  They got dancing toys today & love them.  Ready for bed (love their hair combed), but Zandria called and asked if they could come sleep over at her house.

Zandria reading the boys a bedtime story.  Cute! 

A sleepover with the Platfoot girls

Pancake Friday at the shop... mmmmm

Coloring in Tracy & Josh's office

Lunch in the play barn 

Since he doesn't take off his cowboy boots, might as well let him ride 

the horse at Grandma and Grandpa's house :)

Staying warm with aunt Elimy (this is how Lance says Emily)

 Quite the breakfast Sunday morning... Lance has billy bob teeth (which he loves), 

Kaleb ate breakfast with his motorcycle.  Brandon said, "bet we can 

guess who might be the adventurous one here..."

Ready for church (I just can't get over their combed hair!) 

Kaleb sleeping on uncle Josh at church

Well friends, I hope that I'm writing our next post from the comforts of our house.  I go back to work in about 10 days and I need to get our schedule established for sure (yep... that realization just stressed me out)!  Thank you for reading along.  We love your prayers and support!  Know that they sustain us :)  I hope you enjoyed the menagerie of pictures today.

Wresting down a weight class??

Miss Ellie is trying to follow in Daddy's wrestling footsteps, it appears.  And she must think that she needs to cut weight to wrestle down a weight class, I guess.

Yes - this is my pathetic attempt to make light of an icky spot we're in.  I fail - sorry for my lame humor!  Anyhow, at Ellie's cardiology appointment on Wednesday, she weighed in at 6 pounds 6.7 ounces.  She weighed 6 pounds 8.4 ounces at birth exactly 4 weeks ago.  She is now in the 25% for height, but less than 2% for weight.  This is on the "typical" baby chart, though... keep that in mind.  We'll see how she compares on the chart for babies with Down syndrome soon.  Bummer.  Big bummer.

How can this happen you ask, after putting on weight well at first?  Well, I don't know that I have all the answers, but I know that part of the initial weight gain was water retention (due to Ellie's heart condition) which she shed once we was put on medication last week.  The other factor at play here is that Ellie's heart is working super hard to do its job... which burns up tons and tons of calories.  So she is eating well, but all of those calories are burning up to support her heart and lungs instead of getting dumped into her fat stores and muscles and such.  Remember that our goal is to get her bigger and stronger before she'll need surgery, so weight gain is a bigger deal that I guess I realized.

Getting ready to go to her cardiology appointment - I thought she looked like she's finally filling out her newborn sized clothes - maybe I just shrunk them a bit.

Ellie got another echo done - this time with Teresa (who was the wonderful lady who did my prenatal echos).  In the echo, we could see that Ellie's right atria looks bigger than it did before... still something that will be fixed during surgery... but it looked odd to me.  I'm no expert at all, though... I have no idea if it affects any functionality or not.  I would guess not because all of her blood mixes in her heart anyhow.  Teresa was trying hard to find something with the Doppler and out of curiosity, I said, "What are you looking for now?".  I don't know if she likes all my questions, but it was too quiet for me - ha!  She told me that she was listening to the blood flow in both of Ellie's SVC's.  Uhhh... what??  She said, "you knew that she had 2 SVC's didn't you?"  I just looked at her blankly.  She said... "oh, sorry - it's not a big deal, really".  After dusting off my Anatomy & Physiology database in my head (which hasn't been used really since college), I said, "are you talking about vena cavas?  Ellie has 2 superior vena cavas?"  Yep - this is true.  It's not a big deal... just interesting to me.  The vena cavas are veins that dump non-oxygenated blood from the body into the right atrium.  You have an inferior one (that moves blood that is below your heart) and a superior one (that moves blood coming in above your heart - this is the one that the jugular dumps into).  Well - Ellie has 2 up top.  I said, "well, I guess that'll make her very efficient at returning non-oxygenated blood, then, huh?"   Teresa laughed and said, "guess so".

Ellie getting an echo

After the echo, we weighed and measured Ellie (which bummed me out), then waited to see Dr. Luby.  Dr. Luby checked her out and asked me more questions.  I told her that Ellie was no longer sweating during feedings, but that she was retracting more than she was a week ago.  Dr. Luby was now concerned that Ellie wasn't just slacking a little on gaining weight... she was now losing weight.  We had two options for treatment.  She said option 1 was to supplement 2 or 3 feedings a day by adding dry formula to pumped milk.  This would double the calorie content of Ellie's meals.  She said, "while this IS an option, it's not a good option".  She stressed that once we're on a slippery slope of losing weight, we can get into trouble quickly and the goal is to get on solid ground so that we can hold off on surgery.  The second option, which Dr. Luby knew I wouldn't like, was to admit Ellie through the weekend so that she could be constantly monitored and we could find the most effective method to get Ellie to gain.  Since we don't want to backpedal before we even really get moving, we went with the suggested route and made arrangements to admit Ellie today (Thursday).

Before we left, I asked Dr. Luby if there was anything else that I could do about Ellie's congestion (other than using saline and the bulb sucker).  She said, "she's not really congested, that's just another symptom of heart failure (along with what they see on the echo, her retractions, and the weight loss).  Ugh!  And with her weight loss, she's being admitted for "failure to thrive".  Can they find any scarier terms to describe an infant?  The admitting doc said, "so, she has Down syndrome, congestive heart failure and failure to thrive... anything else?"  Uhh... no, that's enough!  Dr. Luby did come in to visit and said that medically, they call it congestive heart failure, but assured us that Ellie's heart isn't really failing - it's still pumping well.  She said that it's more like pulmonary overcirculation - the end result is congestive heart failure, yes... but Ellie will have surgery to avoid that end result.  That was reassuring!  She, again, described Ellie's condition as wet, heavy lungs.  Remember that her heart is pumping as one chamber instead of 4 chambers, so a lot more blood gets pushed into her lungs with each heartbeat than would normally go there.  That makes sense, right?

We still started adding formula to her milk 3 times a day, but we'll stay at Dayton Children's for a few days so that the doctors can formulate a plan for us that works well for Ellie.  So, we're sitting here doing as much as we can to monitor her intake and output... which is pretty boring.  We have to weigh all of her diapers, time her feedings and mark how long she nurses or how much we're adding to her pumped bottles and how long those take her to consume.  Tomorrow they'll be weighing her before and after each feeding to see how much she's taking on.  Nothing too intense at all.  No poking or prodding.  If we're not able to get her to gain, they'll consider a feeding tube... but that's one of the last things they'll try if other options don't work first.  The only downside really, is that Ellie is sleeping in a cage.  For real... a cage.  Brandon and I are both able to sleep in her room with her, which is fabulous.  I may feel differently after sleeping on this couch/bed thing - kidding.

Ellie bug sleeping in her cage.  I guess here it kinda looks like a crib.  I really want to put a sign on it that says, "do not feed the animals", but I have a feeling they aren't going to like my humor (especially when we're here to focus on her feedings).  Ehhh... minor details!