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.
Sending prayers your way and hoping that you are home soon with little Ellie! It's so good to see you surrounded with so much love and support. She looks like such a fighter and she's absolutely beautiful!
ReplyDelete