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!