Happy Easter Everyone! Alleluia, He is risen!

Megan here:  It has been too long since our last update. We have been in the trenches lately, which has certainly been an opportunity for us to learn to carry the crosses we've been given with a bit more trust and joy. For that reason, this past lent was the most fruitful and sacred I've personally ever experienced, and I am so grateful for that. 

As of today, we have been in the hospital for exactly 215 continuous, yet tumultuous, days in a row. 

March was especially busy due to sickness, the usual Rosie rollercoaster, and also the delight of Therese's birthday (now 5), Robert's birthday (now 3), and Easter. We survived the month and are ready to tackle April with a renewed spirit! On to our Rosie updates:

We left off back in February with the hope that Rosie could get her g-tube right away. The day after that post was made, she had a chest x-ray that showed suspected pneumatosis intestinalis (a rare and very dangerous buildup of gas in the walls of the abdomen as a result of intestinal infection). Rosie had no other symptoms, and the x-ray was randomly done to check her feeding tube placement, so it was caught early. She was placed on antibiotics and IV nutrition (called TPN), and we had an incredibly miserable almost 7 days of no food for Rosie (and no sleep for anyone). It was the longest period of not eating she has had to undergo, and as you can probably imagine, starving an 8 month old baby for a week straight was horrendous for everyone involved. She was thankfully just fine after that protocol, though. She recovered well and was finally able to receive her g-tube the following week, on February 22nd! 

Recovery from the g-tube was surprisingly a bit touch-and-go. She was more uncomfortable than we had anticipated, and had some trouble tolerating her feeds for a while after the surgery (and being 'NPO' - no food - and on antibiotics for a week messed with her tummy quite a bit). She finally started to tolerate her food again, and we were absolutely thrilled when she started to act like her normal self. It has also been so incredibly nice being able to see her whole, beautiful face once more, and not need to shove a tube down her nose and throat every time her feeding tube is accidentally dislodged (the g-tube in her belly is much, much more stable, and is very hard to dislodge, thankfully).  After the g-tube surgery, we had a fantastic short stint of just good things for Rosie: growing and playing and being a sweet, funny, sassy baby. 

Unfortunately, the good times didn't last too long. During the second week of March, Rosie started to rapidly decline once again, dropping in oxygen saturations, and throwing up absolutely everything that went into her tummy. The team acted quickly and ran a gauntlet of tests and scans. Our sweet girl ended up having a viral stomach infection called Astrovirus (we have absolutely no idea where she got this, but our best theory is that a toy of hers fell onto the floor and wasn't properly cleaned before she touched it), as well as not one, but TWO blood infections from a broken PICC line (the IV lines that are placed in her leg). She was made NPO (no food) because of the virus, given two antibiotics for the infections, and had to have her PICC line replaced (which is painful and not done lightly around here).  Thanks be to God, she made a full recovery from all of this after about a week. She is one tough little girl! It once again took her a while to start tolerating food in her tummy, but as of now, she is back to her full feeds without throwing up.  

All other Rosie updates are separated out into 'specialties' below:

Cardiology/Transplant Update:  

Rosie has had multiple echocardiograms, and just had a CT scan last week to check her heart. It remains stable and unchanged - no better, no worse. This is excellent news, as it means that right now, she does not need another catheterization procedure or any additional heart failure life-saving measures while we wait for a new heart. She remains on a 0.5 dose of the Milrinone heart failure medication, which continues to give her the very top 1a heart transplant waiting status.

She has also received two heart offers in the past few weeks. Both were not good matches for her (one had a strangely formed valve, and another had anatomical issues as well), so our team declined them. We continue to wait for her perfect match; a heart that will last. Right now, as she is in the 1a top category, the only factor regarding who gets a heart offer first is wait time on the list - whoever has been waiting the longest gets the heart offer first. A few weeks ago, when we got the call for the first heart offer, Rosie was the 22nd call in line, meaning she was 22nd in line for a heart at that time. Based on this, Rosie's beloved transplant cardiologist, Dr. Kirmani, believes that it will probably be another two months, closer to Memorial Day (she'll have been listed as status 1a for 8 months at that time), before we actually receive a very good heart offer that we can accept. And so, we hope, we pray, and we wait as patiently as we can. 

Neuro:

The neuro team is thrilled with how Rosie is doing, and frequently call her the 'Million Dollar Miracle Baby.' She has recovered from her three neuro surgeries, and is doing fantastic. They will continue to keep a close eye on her, though, as she does still have some transient cerebrospinal fluid buildup on her head, making it look poofy still. The shunt that was placed to deal with this issue is at its lowest resistance setting right now (meaning that the most fluid possible is able to flow and drain through it), so they are currently not able to adjust that any further. The team said that as long as the fluid buildup remains 'squishy' and isn't causing massive pressure in her head, and her neuro exams look good, then they are completely comfortable leaving this as-is for now. They believe that when Rosie receives her new heart, it will change the venous pressures in her body and massively reduce the pressure and cerebrospinal fluid buildup in her head as well. So again, we wait and pray that this remains stable for now too. 

General:

At the same time Rosie needed her PICC line changed, the team found that she had a clot in her left leg. This is concerning for a few reasons, mostly because right now, her heart issues and neuro issues are in conflict with one another. We need the clot gone because we need that access for her heart transplant, but the anticoagulants used to break up the clot put her at higher risk for another stroke and brain bleed. It is an extremely delicate balancing act that the cardio and neuro teams are in constant communication about. The teams decided to put her on a therapeutic dose of Heparin to try and resolve the clot. This past Wednesday was two weeks into treatment, and unfortunately, the clot looks completely unchanged on the ultrasound. The team will check the clot again in one week. We are praying that she remains stable with the anticoagulants to dissolve the clot, and that the clot is resolved soon.  

(It should be noted that the clot does not impact Rosie's transplant listing, thankfully.)

Physical Therapy:

Rosie is doing fantastic in physical therapy. She now sits up by herself unassisted and has rolled a few times when especially motivated. It is very hard for her to roll, though, as all of her wires and IV's keep her accidentally tethered sometimes, and it becomes frustrating for her to try. We have no doubt that once she is no longer attached to so many things at home, she'll be scooting all over the place on her own. She has also been loving placing weight on her feet and showing signs that she might be wanting to pull herself up and stand soon, which will be so exciting. Her favorite way to do this is by singing the 'Ants Go Marching' song with her therapist, Nicole, while stomping her sweet, chubby little feet. 

Occupational Therapy:

She is also doing excellently in occupational therapy. One perk to having been here a long time is that her therapists know her very well, and notice tiny nuances that normally would probably be missed. For example, her primary OT, Liz, noticed that when she smiles, she has the most minute lag on the right side of her mouth. Or when she is sleepy, it takes her an extra half of a second to move her right side after she moves her left. This indicates that - while she miraculously has complete function on her right side - she does need to continue strengthening it while her brain continues to create new neuropathways after her stroke. To assist her in this, Tom and I spend our days here diligently practicing everything her therapists teach us. 

Speech/Food Therapy:

Rosie still has a pretty severe oral aversion right now. While she absolutely loves trying new solid foods and purees, she cannot stand any liquids in her mouth, or she gags and makes herself throw up. We continue to diligently and patiently work on this with her, making sure to aways keep it a very positive experience, in the hopes that once she is home she will take off in eating alongside her siblings. Our theory seems to be proving correct, as both Therese and Matilda came to visit for full days this past week and Rosie had her best food therapy sessions ever with them having a 'sister brunch' with her. It was a beautiful glimpse into what life will be like once our miracle girl is home again someday.

Rosie has really taken off with speech, though! She is an incredibly social baby and loves trying to mimic both motions and sounds. She understands and nods her head 'yes' and 'no,' and says 'uh oh' as she gleefully throws things out of her crib for us to fetch. She also thinks it's hilarious to howl at night because we once made the mistake of pretending to howl at the moon one evening, and now she thinks howling at night like a tiny wolf pup is obligatory before bedtime. Finally, her favorite thing to do is say 'woof woof' and pretend to be a puppy dog. She especially likes barking at people in her sweet, tiny voice as they walk past her room. Tom and I are currently in a classic parental contest to see if she will see 'Momma' of 'Dadda' first. 

Life Updates:

While the 'big kids' were unable to visit Rosie for a few weeks due to them exchanging a truly impressive array of viruses at home, they video call multiple times a day, and have all finally been able to visit a few times this past week, including on Easter. They had a fabulous time helping Rosie participate in her first ever Easter egg hunt at the hospital (read: boxing Rosie out for all the good eggs - leave it to siblings to make you feel like a normal little sister and not take any mercy on the heart-failure miracle baby). They also love to feed her and then give her a bath, which they find hilarious because Rosie loves to splash and soak anyone brave enough to walk into the room during bath time. It is so perfectly delightful to watch them all fall into such an easy cadence of play and silliness with one another. Over 7 months of Rosie in the hospital, and they are still the best of friends with one another. Sibling bonds are an absolute treasure. God so perfectly good. 

The 'big kids' have finally all become very comfortable in the hospital too, which is bittersweet. They no longer nervously tiptoe through the hallways like they once did, and now confidently strut to Rosie's room, stealing pudding cups out of the fridge along the way. They are also very used to all of the medical equipment, terminology, and other kids in the PICU; the beeping and alarms don't make them nervous like they once did, and kiddos with tubes, wires, and bandages everywhere are no longer met with nervous, wide eyes, but genuine smiles and waves as they make PICU friends in each doorway they pass. They now call our favorite staff members family, and nurses are met with 'Auntie Anna,' 'Auntie Shelby,' and so on. They pretend to play 'PICU' at home constantly, and honestly, Matilda could probably hold a rounds meeting better than most residents these days, and Therese can definitely work a g-tube more efficiently than half of staff. 

Part of me wishes they never had to experience the kind of transformative heartbreak they have gone through this past year; the other part of me is glowing with pride at how they have adapted with such pure love and and grown in such sweet confidence.  I am in awe of their ability to take all of this in stride, living joyfully in the present, and showing us how to truly live out Saint Padre Pio's words of 'pray, hope, and don't worry.' I often stare at them in wonder and feel that I have so much to learn from these little sunshine souls. I am so grateful to be their Momma. 

Finally, a few happy Rosie updates, in a complete jumble, and in no particular order:

She did get to see the eclipse yesterday, but was much more interested in crinkling her glasses than the main event. Just today she clapped for the first time, and also oinked like a piggy when singing a song; she surprised herself and gleefully cackled when she realized what she did. She is absolutely, completely, hopelessly obsessed with 'horsey rides,' in which you bounce her up and down, click-clack like a horse's hooves and then throw her into the air and neigh loudly; she is going to be an adrenaline seeker, and I am already nervous about the kind of trouble she'll get herself into with rollercoasters and sky diving someday. She loves wind, whether it be from a breeze outside, madly running her stroller down an empty hallway, or waiving something above her, she goes absolutely wild for it. If she is mad at you or wants someone to leave her room, she will get a very stern face and firmly wave 'goodbye' to you as a not-so-subtle hint for you to get out (she is very feisty). Alternatively, she gives the greatest smiles on planet earth when she sees or hears someone she loves.

We were given the okay to take solo walks with her whenever we want! We have been loving the freedom of getting to pop her in the stroller or baby carrier and wheel the IV pole out whenever we want. Rosie is incredibly social and adores going around seeing all of her beloved people. Lately she has been enjoying taking her maracas with her so that she can have an impromptu dance party with whoever she wants in the hallway. She continues to enjoy books more than any baby I have ever met in my life, and adores dancing and singing. She is joy. She is spoiled with snuggles, and takes 99% of her naps in the familiar comfort of Momma or Daddys arms. 

When we were first diagnosed with Rosie's condition, well over a year ago, Tom and I made a promise to one another and to her: she would never fight alone. She would never be left in a room alone in the hospital without a loved one beside her, and she and her siblings would not go one moment of their lives without knowing - beyond a shadow of a doubt - that they were wanted, prayed for, and loved beyond measure. That their lives are not only irrevocably precious to us, but that we find such complete joy and value in our vocation of marriage to one another, and parenthood to them. Hospital life is hard. Navigating all of this with our 'big kids' is emotionally excruciating sometimes. But, over 9 months in to this insane journey, we have kept that original promise. I write these words as the girls are nestled in their cozy beds and Robbie is asleep beside me, after spending an afternoon playing in the sunshine, with dizzy laughter and stories and prayer and dancing while brushing teeth before bed. Rosie is currently asleep in Tom's arms as he most likely whispers another rosary over her fuzzy little head. Our life is chaos right now, and we miss being home with each other in an achingly deep way that I find hard to even put into words; but all four of our kids undoubtedly feel loved, content, safe, and truly happy. Somehow, we do too. So if we need to stick it out a few more months in the hospital, living on faith, hope, and and the grace and love of God, I know we will be okay. And that might turn out to be the biggest miracle of all in this story of ours. 

Thank you for all of your love and prayers. We feel them all. Thanks be to God for each and every one of you. 

Love and God Bless,

Megan & the Wangards

P.S. I promise to write more often. 

P.P.S. I am sorely disappointed that Caring Bridge only allows 5 pictures! There are so many cute ones from the past month. Feel free to follow me on Facebook or Instagram (meganqwangard) for more frequent pictures of daily Rosie life if you'd like.