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!

Therapy and Medication

In our last update, I let you all know that Ellie started showing her first signs of distress at 15 days old.  She started with sweat across her brow while nursing and a few days later, started retracting when she was breathing.  I called the cardiologist again on Tuesday this week to let her know about the retracting and she scheduled us to come down to Children’s on Wednesday morning. 

When we came in, they took us to get a chest x-ray for Ellie.  On the way there, I ran into a friend from church (Shellie) who works at Children’s and she got to check out Ellie a bit.  It’s always nice to see a familiar face!  I wish I had a picture of her getting her x-ray… I held her hands up over her head in a “touchdown” position for it and she just laid there all awake looking around like “what are you doing, Mom?” 

After the x-ray, we went back to cardiology and weighed Ellie.  She weighed 6 pounds 12.5 ounces… which is less than she weighed a week before at the pediatrician, but not much less.  And they are measuring in grams and then converting for me, so it might have been a little wonky.  Dr. Luby came in and looked over Ellie and asked me a lot of questions about her behavior.  I explained that she’d started sweating during feedings on Thursday and that she’d started retracting on Saturday night.  She was getting sleepier and sleepier during feedings and was now only nursing on one side.  Dr. Luby listened to and watched her breathe for a while.  I said, “Am I crazy?  Is this what I was supposed to be looking for?”  Dr. Luby reassured me that this was exactly what I was supposed to look for and thanked me for calling her.  She said that she’d ordered a chest x-ray on Ellie just to confirm what we were seeing is confirmed in what they can see on the x-ray.  The x-ray showed that the veins/arteries in Ellie’s lungs were under pressure (pulmonary hypertension), which causes her lungs to feel “wet and heavy” she said.  And wet, heavy lungs tire Ellie out quickly, especially during feedings.  The solution: we need to start medication.  No biggie.  She needs 2 different diuretics twice daily (one is meant to hold on to potassium, the other, a true diuretic to help decrease the pressure in her lungs).  The doses are tiny and given orally (which is easy enough).  Have I told you yet how much we love our cardiologist?  She’s very personable.  She’s very calm and soft spoken, but her laughter can fill the room.  She told me that anytime I had a question of was unsure; I was always welcome to call.  I should never feel like a bother because questions and phone calls show that we’re being diligent and gives her the confidence that we’re staying on top of this.  Ahhh – what a relief!  I don’t plan to bother her often, but I appreciate that she is so reassuring.

Dr. Luby said we’ll reevaluate next week and the medication doses may be adjusted.  She also said that if Ellie isn't putting on enough weight, we may need to start adding scoops of formula to breast milk to bump up her calorie intake without bumping up the volume she’s eating.  This brought about a conversation on weight gain.  Dr. Luby said that Ellie’s gained (on average) 14 grams per day since her last appointment (remember that a gram is about the weight of a paperclip… or an M&M).  I asked if this was good.  The doc said that it wasn't bad at all.  She’d like to see Ellie gaining around 20 grams per day, but with her symptoms, she’d expect her to only gain about 2 grams per day.  Good job, Ellie bug!!  I’m sure that some of this is weight is the water she’s been retaining, but I think this is still good progress.  So next week, we’ll see how much of that weight gets peed out as extra water and how much is all Ellie’s.  I have to say, her cheeks are a little less squishy than they were before, but I still feel like she’s eating a lot and hopefully stashing that weight on her little self.  Geesh, I don’t think I've ever had to worry about gaining enough weight – ha!  Ellie’s medicine had to be made at their pharmacy, and it’d take about an hour to do that, so I decided to leave and come back for that.  On my way out the door, I saw a family that we know from church who were there to take their little girl to a clinic.  They let me in on a few little insider tricks to parking and such and were so very sweet.  I was thankful to see them there and connect with them.  Their little girl has some hurdles, too, and they are a wealth of knowledge with their 4 years of experience coming to this hospital regularly.  They explained to me how the clinics work; which is fabulous because I know Ellie will attend the Down syndrome clinic soon.  They also gave me a book of parking passes… which was very kind and much appreciated!  I think this family is going to be a rock for ours – love them so very much!

I had to pick up her birth certificate while I was in Dayton, because I had to go to the Montgomery County office since she was born in Dayton.  I am NOT made to drive in “city” traffic… for real… you can’t make a left turn… EVER!  But I did find the building and had no problem getting in and getting her birth certificate.  I had to send Brandon a message to say that the line to request vital statistics wasn't long at all… the adult probation line, on the other hand, was a different story.  Okay, that was mean, but really – that office looked extra busy on Wednesday!

After that adventure, I headed back to Children’s to pick up Ellie’s prescriptions and head to mom & dad’s house to pick up the boys.  By the time I’d made it back to their house, I’d been gone for 5 hours… whoa!  That sure ate up a day.  When we got home, there was a package on our porch.  A friend that I hadn't seen for a long time (Julie) had sent us the sweetest card, along with a children’s book.  Her little brother was born with Down syndrome and her parents read this book to her and her siblings after he was born.  I read it to my boys right away, and let the tears stream down my face because it was so perfect.  The book is called “We’ll Paint the Octopus Red” and is about a 6-year-old little girl who finds out she’s having a new sibling soon.  She thinks of all the things this little one will be able to do with her (feed the calves, visit their aunt, play kickball, go on a safari, etc.) and is ready to be a big sister.  When her Dad tells her that she has a little brother, and that her brother was born with Down syndrome, she isn't sure what it means… but knows that it has to be bad news.  So she tells her dad that “Isaac won’t be able to play kickball” to which Dad says, “It may take Isaac longer to learn to walk, but I think he’ll be able to kick a ball with you when he’s older”.  She proceeds to go through her whole list of things that she thinks he’s not going to be able to do.  Her dad assures her that Isaac will be able to do all of the things that she wants to do with him as long as they’re patient with him and help him when he needs help.  At this, the big sister says, “By the time we were done talking, we couldn't find one of those million things that Isaac wouldn't be able to do.”  Julie was right – this is the perfect book to help our boys understand that Ellie may need some extra help, but she’ll be able to do everything they do, with time.  Julie said it was “Simple - just as it should be.”  She’s exactly right! The boys love the story.

On Thursday morning, we had a group from Early Intervention come over to the house.  I told the boys that they had to be good while therapists came over the help Ellie.  We saw Ashley, from Help Me Grow, Tonia, the intake coordinator of the Early Intervention program, Andrea, a physical therapist, Kendra, an occupational therapist, and Sarah, our Early Intervention specialist.  They asked me a ton of questions and looked over Ellie.  They showed me a few things that we could do to help her with her coordination and help stimulate her and strengthen her.  It was fabulous and I really felt like we had a whole team of people who have the same goals we have for Ellie.  Our boys thought this was a big play date, I think.  They asked Sarah all about the keys on her key chain and tried to get all of the “tools” (aka toys) out of the tub that Kendra brought.  Ashley played with the boys and tied their blankets over their shoulders as superhero capes.  LOVE!  I was able to get all of my questions answered and I’m super excited to get the ball rolling on all of this so soon.  And I was very excited that Andrea said Ellie is almost on par with her “typical” peers as far as movement goes for now.  Good job, Ellie bug!  

Afterwards, I talked with the boys and showed them how they could help me work with Ellie and help her learn to do all the things that they do.  Lance said, “Like Isaac in my book?”  “Yes, baby… just like Isaac.”

09.25.14: Getting Ellie ready for bed.  When people see her they say, "She looks bigger in pictures".  So, here is one to give you an idea of how much of a peanut she is.  Her torso is only as long as our remote (big compared to our friends who have had preemies, but tiny compared to our boys).

09.26.14:  This is Ellie's "2 a.m. means nothing to me, Mommy" face.  After starting medicine, she's been waking up a little before my "feed Ellie" alarms most nights.  This is a welcome change.  It doesn't mean I get any more sleep... but it does mean that Ellie has more energy and is able to let me know when she wants to eat sometimes!  This little bug is worth every sleepless night - and this night, she was up about every hour and a half!

First little bumps in the road

As I mentioned in our last post, Ellie has been doing great.  At her 2 week appointment she’d surpassed her birth weight and was doing peachy keen.  The next day (Thursday, 9/18), Ellie showed her first signs of distress – at 15 days old.  I was feeding her and watching her brothers run around the living room like the crazy monsters they are.  When she finished nursing, I brought her up to my face to kiss her head before readjusting her to switch sides.  When I kissed her forehead, she was covered in sweat.  My heart broke a little because I knew that this was one of the first signs we are supposed to be on the lookout for (sweating across her brow while she’s eating).  I wiped it away and sucked up my feelings and switched sides for her.  Again, she was sweating through the rest of the feeding.  Dang it!  She did the same at the following feeding (which I was finishing up right before B came home from work).

He walked in and sat on the loveseat across from me.  I felt my voice start to crack as I told him that she showed signs of distress.  He let me cry… but assured me that this was part of what we were expecting and we have a team of doctors that were there to help us.  For whatever reason, I was okay when I sat alone with Ellie, internalizing the heartbreak of watching her struggle, but as soon as I had to admit that to someone else… even my husband, I lost it.  It was like having that secret between Ellie and I (just for a few hours) was bearable, but letting someone else in on that vulnerability was painful.

Don’t get me wrong… I’m so thankful that our first 2 weeks were symptom-free (outward symptoms, at least).  That is fantastic.  I just wish we had more than two weeks of “she’s doing GREAT”.  She’s a tough little booger and is still doing okay, but we’ve begun to feel those bumps in the road.  She didn’t bead up in a full-on sweat at her night feedings, but she got clammy.  She’s done one or the other for all of her feedings since.  I called the cardiologist on Friday morning and she said that she’d note the symptoms in Ellie’s chart, but we could still keep our appointment on the 29^th to evaluate Ellie again and see if we needed to start medication yet.

On Saturday, I went to the Springfield Extravaganza with my sisters and a bunch of our kiddos.  Aside from the meltdowns my boys had, we had a fabulous time and got in plenty of walking and treasure hunting.  Afterwards, we met at my parent’s house to celebrate my oldest nephew’s birthday.  I was standing around the counter with my sisters and Ellie was lying out on the counter so we could all check her out.  This is the first time that I noticed that she had started to retract while breathing.  This means that when she takes a breath, her ribs suck in instead of expanding outward.  Her upper abdomen is also getting sucked up a bit under her diaphragm.  Since Saturday, this has become the norm for Ellie… another sign of respiratory distress.  Again, I felt like we’ve been a little defeated, but also knew this was part of what we should expect with the heart defect she has.  I always know that things could be worse… that’s for sure… but dang it, they could be better too.  I hate that I feel that way, but if I’m being honest… that’s the ugly truth. 

On Sunday, we had a fabulous sermon at church and I took the time to surrender our marriage, our finances, our future,  my fear, and of course, our children and health to God.  I talked with some close friends afterwards about being bummed out – and talking about it again made things a little more bearable.  I’m hoping that the more I share, the lighter the load feels.  It feels so backwards to me, but it seems to be working so far.  Thank you for following along – and thank you all because somehow, you are all helping us unload this weight of worry and fear and doubt.  We love you for that!  On Sunday night we had some fabulous company that came over and brought some dinner for us… and because they have 3 kiddos the same ages as ours, they made us feel a little more normal in the midst of chaos.  Love!

I’ll probably update you all later this week because Ellie has her first assessment for therapy on Thursday.  She also has her first physical therapy and occupational therapy appointments.  They’re coming to our house for these, and I’m super excited to learn how to help Ellie.  Did I mention yet that I have a massage therapist who is going to teach me how to do infant massage on Ellie?  I can’t wait to do this.  I think Ellie bug will love it!  Until next time…

Growing like crazy!

Ellie was 1 week old in this pic - and her hair is strawberry blonde

We were excited last week when (at 8 days old) Ellie was already up to her birth weight of 6 pounds, 8 ounces.  We were thrilled when we checked her in for her cardiology appointment on Monday and she weighed 6 pounds, 9.6 ounces.  Grow baby, grow!  Ellie got her first EKG on Monday and everything looked as expected.  Her oxygen saturation was 91%.  Dr. Abdurrahman (her name is actually Lubabatu Abdurrahman... we either call her Dr. Abdurrahman or Dr. Luby) said that Ellie was looking great.  She doesn't need any medication right now, but they'll reevaluate her every two weeks and adjust recommendations for us as needed.  Dr. Abdurrahman reminded me that things will get worse as time goes on, but for now, Ellie's growing and functioning beautifully!  Ellie has what Dr. Abdurrahman called the "garden variety A-V canal defect"... can I tell you how wonderful it was to hear that the defect was the "normal" kind when so much feels so far from normal to us?  Ha!  Weird how simple things like that are comforting, right?  Dr. Luby had to cuddle on Ellie a bit, which was too adorable.

Ellie's 1st EKG - the leads were only the size of my pinky nail

Dr. Luby was giving Ellie squishies - they both loved it!

After this appointment, I picked up the boys and headed up to Wapak to get adjustments for us all.  We hadn't been in for adjustments since Ellie was born and I knew that I was desperate for one.  Our boys were doing alright, but Ellie surely needed an adjustment after delivery (which has to be one of the most traumatic things for your head and spine, right?).  We felt fabulous as we left Dr. Josh's office.  They took some pictures for us to remember Ellie's first adjustment.

Ellie's 1st adjustment - the boys are old pros now

After this, we went to Tracy & Josh's house to celebrate Jared's birthday.  For those of you who don't know our family well, Jared was born on September 15, 2004.  He was here with us for less than six months.  When I think about Jared and think about Tracy and Josh as parents, it puts all of this into perspective.  While we have hard days and we have days when things seem unfair (mostly when I think of Ellie's future), nothing, NOTHING we experience will ever come close to what they've gone through.  Every year we get together on Jared's birthday and send balloons to heaven for him.  He would have been 10 years old on Monday.  It's scary how fast time slips away.  Gosh!

Today (Wednesday), Ellie had her 2 week appointment and got to meet Dr. Weber.  Ellie weighed 6 pounds 14 ounces at her appointment today - holy moly!  She's gaining weight very well.  We also found out that her initial blood tests showed that her thyroid is functioning normally.  Celebrations!  Hypothyroidism is relatively common in kiddos with Down syndrome.  We don't have to test again until Ellie is a year old.  Today, her oxygen saturation was 93% - fantastic!  We also have referrals for the Down syndrome clinic that is at Dayton Children's and they're pushing to get her the Synagis shot (which prevents RSV).  This is a monthly shot that she'd get during RSV season - still waiting to see if she gets approved for those.  Tonight, I'm just sitting here looking at how stinkin' adorable our little bug is all wrapped in a swaddler.  Ugh - heart overflowing :).  Thank you so much for reading along today.

Ellie is much stronger now than she was 2 weeks ago.  She has more head control and is really able to move her limbs around... which is why she now has scratches on her face.  Poor girl used her long, pretty nails on her face.  You can still see that strawberry blonde in those eyebrows, huh?

Can't get enough of that hospital food... I guess

So as we said in our last post, we were released from the hospital late Friday night.  We woke up on Saturday morning and spent the day cherishing our new family of five.  In the afternoon, I laid down on the couch and took a nap with Ellie.  When I woke up, my chest felt tight (like the muscles between my ribs were really sore) and it was hard to take a deep breath.  I figured I slept weird or that my muscles were sore from hunching over to nurse.  Soon afterwards, I started getting a nasty headache.  Headache is a bad way to describe it... it was more like a migraine.  I hadn't had migraines since we started going to the chiropractor over 2.5 years ago.  This was not a welcome thing, but I took some ibuprofen and hoped that it would go away.  The migraine waived some, but never went away.  When I'd lay down, the headache would get stronger.  I told Brandon that I was freaked out that when I laid down to go to bed at night, I could feel my heart beating in my chest.

Sunday came and the headache was still there.  I kept up on the doses of ibuprofen that had been suggested for postpartum pain.  I was pleasantly surprised that I didn't have hardly any of the same pains that I'd had with my first two deliveries.  I felt rather human already (aside from the headaches and sore ribs).  I was able to do things around the house and was getting more rest than I remember getting with the boys.  By the end of the day on Sunday I started to worry that the pain I had in my upper back, ribs and head may have something to do with getting 2 epidurals.  This was terrifying for me.  I looked up signs for meningitis... and was thankful that I didn't have a fever.  I know - ridiculous - but I'd never felt like this.  If this was my first child, I wouldn't know that the feelings I was having weren't normal postpartum pains.

Ellie bug in her Browns attire on Sunday.

I decided to not take any fever reducers on Monday to make sure that I really didn't have a fever.  By lunch time, the headache was absolutely unbearable.  I called Perinatal Partners to ask about my symptoms.  They told me to stop in the office at the next available time slot... which was less than an hour away.  I asked if it'd be okay for me to bring the kiddos with me.  Of course... since it would only be a quick appointment.

When I went in for the appointment, they took my blood pressure and tested my urine.  I had protein in my urine and my blood pressure was high.  Along with the headaches, I was showing signs of pre-eclampsia.  Dr. Kovac came in and told me that I'd have to go back to Miami Valley and they'd have to admit me and monitor me for 24 hours.  Normally, pre-eclampsia happens during pregnancy and the cure for it is delivery.  In rare cases, though, you can get pre-eclampsia after delivery.  Lucky me!  My blood pressure is usually 110/70 or lower.  In the office is was 150/90.

I called my parents and asked them to pick up my boys in Vandalia and apologized because I was only planning on going out for a few minutes... so I had no extra diapers for Kaleb or clothes for either of the boys.  Dad came down with Emily to pick them up.  He loaded up the boys and drove them back to their house.  Emily hopped in my van and drove me and Ellie to Miami Valley.  She stayed with me until Brandon was able to make it there after work (and stopping at the house to pick up some clothes for Ellie other essentials).  My BP got as high as 172/105 that night.  We were admitted and they gave me fioricet for the headache (which worked) and put me on a magnesium drip to help lower my blood pressure.  Tuesday was pretty dull.  The magnesium played all kinds of tricks on my vision.  I was still sensitive to light and sound and was now seeing double - so I couldn't really read or watch tv.  Ellie and I enjoyed a quiet day of nothing but snuggles.  This was pretty relaxing, really.  Brandon stayed with me each night and we were finally released on Wednesday afternoon.  We joked that if we hadn't already met our out-of-pocket max on our insurance plan this year... we met it now.  Seven days in the hospital would do that, I'd say.

Ellie hanging out w/ Mommy - quiet time is hard to come by for us :)

On Thursday, Ellie had her first appointment (finally) and she was already back up to her birth weight (bonus!).  We also had an appointment with Jenny, the BCMH nurse with the Health Department, on Thursday afternoon.  Jenny is getting everything from our hospital stay squared away for us.  Thank goodness!

We have 3 appointments next week: cardiology, a follow-up appointment for me, and Ellie's 2-week appointment.  We were also able to talk to Ashley at the Health Department and we're waiting to get an assessment done for Ellie so that she can start therapy.  How exciting!