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G-Tube Surgery

Surgery went smooth and super fast this morning! From the time I handed her off to the time the surgeon came back to talk to me, it was less than 45 minutes! 

Our Mighty Margaret woke up pretty soon after she was brought back to recovery and was hungry and wiggly. She has since been resting (thanks pain meds...)and is probably going to be quite hangry when she wakes up again...No more tube on her face, though! Wohoo! She will be happy about that when she notices :)

We can't wait to snuggle her! 

Our Little Valentine

Happy Heart day!!! ❤️

The last few days have been interesting. The roller coaster of emotions was extra crazy.

We have a date for when our Mighty Margaret will have surgery to place the G tube...tomorrow! Originally she was supposed to go in today, but they only gave me a one day notice and that was too much for this mom to take in. Thankfully the nurse practitioner is amazing and listens to me and was able to get it postponed to tomorrow, Wednesday. Now I've had a little time to process and accept the inevitable. The tube. 😳

I have struggled with accepting that it's time for a feeding tube because I think about how inconsistent Margaret's opportunities to show us what we can do have been. As a mom, it's excruciatingly difficult to see your tiny baby struggle with eating since that's the one thing we were supposed to tackle together. Again, the amazing staff have been listening to my concerns and agreed to try a few more things with our stubborn little lady to make sure the tube is absolutely necessary. We have discovered that Margaret is aspirating a tiny bit and this causes her to stop drinking - the good thing is that she recognizes when it doesn't feel right and responds appropriately. We also believe that Margaret gets so tired from working super hard to eat so she needs more time and more practice to build her stamina. So, the next step? We will continue to work on eating using slightly thickened milk so that she becomes more comfortable and can strengthen her coordination skills. Hopefully the tube will only need to be used for a little while and we can have it removed once she's consistently eating and gaining weight appropriately. Apparently it's quite common for cardiac babies to struggle with this skill. In the last 2 days she has made some great progress but overall not enough. Tomorrow Margaret will get a fancy new accessory and mom and dad will get trained on how to manage it.

Over the next couple of days Bill and I will be inundated with information and training about everything we need to know in order to bring Margaret home. Want know why? We are going home! No official discharge date yet as we need to see how Margaret recovers from the surgery tomorrow, but it is going to be soon, like a few days away, soon!!! 

Prayers for a smooth recovery for Mighty Margaret and prayers for our family as we slowly begin to transition home.

P.S. - the shirt says "super baby" and there's a cape! --- how fitting, eh? :)thx auntie!

"Normal"

Well. Another week has gone by and I think it's safe to say we are ALL sick of being stuck in the hospital. Despite the amazing staff and yummy pizza (seriously, I love it and am not ashamed that I've literally eaten it paired with a chocolate milk every day we've been here😬) we are all getting a little cranky about being here. 

This week we have had lots of conversations about how we get home. It's daunting to hear about all the doctors we will continue to have often appointments with and the list of medical supplies and "things" we are going to have to manage is a mile long. Thankfully, we are confident that we will not be sent home until we are comfortable with how to care for Margaret's cardiac and feeding needs. Thank God for patient staff, especially when we ask a million questions over and over again!

Feeding. Ugh. Who knew it could be so hard for a baby to eat! Especially one that is half me! We haven't had a lot of marked success with getting Margaret to eat. We have been told that this is common for cardiac babies and Margaret has been through so much in her short life so far that she's struggling. Unfortunately she seems a bit stuck, which is a million times preferred than going backwards, but in our minds, maybe a little more frustrating. 

Tomorrow, Margaret will have some tests done to make sure there isn't anything structurally keeping her from eating. Once those results come back, we will schedule a surgery to place a feeding tube in her stomach (G tube). I've worked with many kids with these but there's something extra terrifying about it when you're preparing for your own infant to have one...and yes, being the mom I am - I've cried about it. Lots. It's hard to see your baby not eating on her own. 

The silver lining? Since we know open heart surgery is on the horizon for this little princess, having the G tube will mean she can get fed right away after it and during recovery. It will also be so nice to actually get to see (and stare) at her beautiful little face without the tape and NG tube. Those cheeks are just so glorious and we can't wait for them to get even more plump 😍 Having the G tube will ensure that Margaret gets the calories she needs to grow and prepare her body for surgery. When she is taking enough through her mouth, then we can have a conversation about removing the G tube but it will probably stay through her next surgery just to be on the safe side. 

Home is nearing closer and closer! It's kind of scary to think about bringing Margaret home knowing that we will have lots of "extra" stuff to manage, however we will embrace it all and hopefully fall into yet another new kind of "normal" for our family.

1 month!

Notice the date? Our Mighty Margaret is one whole month old! 😱 Can you believe it?! This month has flown by and it is unbelievable to reflect on all that this mighty heart warrior has gone through. She truly is our hero. 

The last few days have been busy. We heard through the grapevine of nurses that there was talk of moving us down the hall to a new room but the doctors were still hesitant due to Margaret's history of being "naughty" 😜Well, friends, on Saturday we officially moved rooms and are now residents of a nice bright non-ICU room! 🎉 Margaret likes her new room and we like the privacy that comes with it. 

The blood clot in Margaret's leg is still there and has not started to dissolve so now she gets twice daily shots to try and get that resolved. She gets an ultrasound at the end of the week and labs drawn to monitor the progress. So pray this resolves so mom and dad don't have to give her shots when we bring her home! 🙈

Bottle feeding/nursing is our biggest goal now and Margaret seems to understand that this is our last big hurdle before going home (gasp! The "h" word!). That's right, the h word is now referenced daily and although we don't have a set date, we all know it's on the horizon!! Working on oral feedings is a slow and careful process. We can't offer too much or too often as it is a LOT more work for a baby with a heart condition compared to a heart healthy baby. Margaret is showing us signs that she is ready for bottle feedings and we have had several successful feedings (teeny tiny amounts of milk to ease her into it). She's looking great and this next week will be an exciting one, that's for sure! 

Please continue sending prayers for strength and perseverance for eating and continued healing from surgeries and all of the procedures Margaret has toughed through over the last month. She really is doing well and we can't help but think about how amazing she is! 💕

Fun fact- Margaret's hair seems to be getting a pretty strawberry tint! It's only fitting that a strong girl with her spunky personality would have some red in her hair, right Auntie? 😉

❤️February 7-14 is #CHDAWARENESS week. Please feel free to share Margaret's story to help spread awareness! Friday, 2/10/17, we are encouraging everyone to wear purple to promote awareness specifically about Congenital Heart Defects (CHDs). 💜 You can also do a quick Facebook search and find many pages devoted to bringing awareness to heart disease!

Moving forward!

Spunky. Spirited. Opinionated...just a few of the words being used to describe our Mighty Margaret on the 4th floor of Children's lately...

This leading lady sure is making a name for herself on the cardiovascular floor! It seems that everyone on this floor knows who Margaret is, which room she currently resides in and can recognize her "voice" aka cry...We aren't sure if that's a good thing or not at this point 😜😉 They all seem to enjoy sneaking in some Margaret snuggles when we are not there, too. 😍seriously - I've said it before and I'll say it a million times more, the staff on this unit are AMAZING. 

The last few days have been rather uneventful. Margaret isn't yet able to eat but she continues to get fed through her NG line. Fun fact- those are really easy for tiny babies to rip out and Margaret has had 3 placed already. Little stinker! 

The best news so far is that Margaret is keeping her O2 levels above 80 which means she doesn't have to wear the nasal cannula anymore! Bill and I are learning fast that monitoring her O2 levels, breathing rate, blood pressure, pulses, etc are all going to be part of our "normal" even when we bring her home. Our normal keeps getting farther and farther from what we expected it would be when we first decided to start our family but God clearly believes we can handle it even if we sometimes aren't sure that we can. Plus, we are pretty smitten with this little lady and continue to be grateful that God chose us to be her parents. 

The biggest hurdle we are facing for now is feeding...say an extra prayer that Margaret figures out the whole breathing and eating at the same time thing so we can bring her home! 

For now, the plan moving forward is to continue to monitor all of her levels (breathing, heart rate, etc) check on a blood clot she has in her leg (hopefully it's gone soon!), work on oral feedings, wean off pain meds and get in as much snuggle time as possible - thank God this girl loves mom and dad snuggles!😍

We are still technically in an ICU room, but Margaret's status has been changed to intermediate. 🎉 The doctors are all very cautious with Margaret as they now don't fully trust her to "behave" because of her history so we will probably stay in our current room until she proves she has no more surprises for us. 😊

Thank you for all of your support and prayers! Mighty Margaret is making progress as a direct result of our family having the amazing support of each of you!  😍😘 Hopefully more good news soon!