Tara Bly Hackwelder added 2 new photos.
We had a very successful team meeting and have a solid plan of attack. How long we will be here will depend on what the testing shows, how she responds to some experimentation with changing up her feeds, etc. A successful meeting, a Buccos win, filled with hope at the plans in place, a private room this time and the amazing Child Life staff brought her a bubble machine, and so it's been a great day. She is totally mesmerized by the bubble machine, and truthfully so am I.
May 28 · Pittsburgh, PA ·
It's been a messy night to say the least... Between the prep for her scoping, her pulling her feeding pump tubing apart and Pedialyte soaking her and her bed, and already being on our second IV since 8:30 pm and the bloody mess from blowing the first IV, we have changed her and the bed four times now since 7:30 pm. She is tricky, for sure! So, desperate times call for desperate measures! A splint and a sock now cover her new IV, lots of snuggling and wiping tears, and a late night stroll finally put the warrior princess to sleep. #thisishowwedoit #workwithwhayyouhavegot #warriorprincess #teamelizabethjeanne — with Brian Jason.
May 29 · Pittsburgh, PA ·
I just left Elizabeth in the hands of an Anesthesia team for the 6th time since September. This is a pic that was before they took her out of my arms to put her under so that she is comfortable for her scoping. They blew the IV after giving her 1 ml of a med to help her relax before they put her completely under. Instead, it made her uncontrollably alternate between screaming, shaking and laughing. Now, they have to put in another IV, put her under and I'm waiting for the next approx 2 hours for her to be all done to snuggle her in recovery.
May 30 · Pittsburgh, PA ·
Mommy and Elizabeth fun during another rough night... Nasty cough (not sure whether it is from the increased feeding volume or from anesthesia... So let the process of elimination game begin), fever, trouble keeping blood sugar up... So, when its 3 a.m., we snuggle, jump, rip up magazines, talk, giggle, play with balloons, you know.... Fun stuff
May 30 · Pittsburgh, PA ·
Elizabeth is still fighting a fever and cough. Daddy and brother are here, and they brought gifts and cards that have been sent to the house. Thank you to everyone for your love, prayers and support. It means more to us than I can possibly express. Thank you to our special and secret angel who continues to shower us with generosity and words of encouragement. It brought tears to my eyes, as did the card from my friend, Jen. Although, Jen's card made me laugh, due to the message and added commentary, which was spot on...
May 31 ·
Elizabeth had a good night. She was up briefly saying , "mama," and holding her arms out for me, so we snuggled and she went back to sleep. The doctors agreed to test out my theory regarding her feed volume being too much for one time thus increasing aspiration and reflux, which therefore brought on the cough. So, she is getting feeds more frequently, but with less volume and at a slower rate, and since beginning the plan yesterday morning the cough is pretty much gone. We also started cough assist to help her clear her lungs, which she hates and its brutal to watch, but thank God for such technology to help her clear her lungs since she cannot do so effectively on her own. We both got some rest, too. I'm so grateful to have access to such an incredible medical team and the technology we have here to help Elizabeth. My heartaches for my daughter, and my son who is at home without us, but my heart also aches for the many children in the world who desperately need medical care, treatments and answers, but lack access to them. We still are not showing weight gain, but we are in the best place possible, and will figure this out because we have an amazing team that listens and are surrounded by love and support and prayer from all of you. This is a great article about special need parent struggles and being listened to... I've only had this problem a few times... But the struggle is real for too many others.
June 1 · Pittsburgh, PA ·
Update on Elizabeth: Elizabeth has developed a persistent cough during her feeds that is due to her reflux and issues with aspiration. She is receiving cough assist treatments to keep her lungs clear and to avoid pneumonia. Her heart murmur is back, and she isn't tolerating the increased feeds into her g tube very well. So, we are going to be having a different kind of feeding tube put in this week. It's called a g/j tube, and she will now be fed directly into her small intestine instead of her stomach. It will help to eliminate reflux and aspiration, or it should. But, she will be on continuous feeds pretty much all day and night. The small intestine can only handle small amounts of feeds at a slow rate, unlike the stomach which can handle larger volumes of feeds at a faster rate. She is not allowed to have anything by mouth and will not be allowed to eat by mouth for some time, and our hope is that once she grows and becomes stronger that the g/j can be reversed and she will be able to eat normally some day. It depends on her, and it's always a possibility that she will always have to be fed this way. Time and Elizabeth will tell us. It's looking like we will be here at least another week. Thanks for the love, prayers and support. We are on day 6 here, and she is being a real trooper. I'm so proud of how strong and tough she is being and has been through everything. Our favorite thing to do is cuddle and laugh, so we are keeping up with lots of that! Thank you to everyone who has sent cards, balloons, checked in on us, etc. It brightens our day for sure and we are very appreciative. We are truly surrounded by wonderful people.
June 2 · Edited ·
And, two years ago today, we brought our miracle, warrior Princess home from the NICU. That was such a victory for us... To finally have her home. We had no idea that we wouldn't see the last of hospitals and doctors and time away from each other. We were just so glad to have our newborn baby girl home... All 4 pounds 8 ounces of her. It was a struggle to get her here with lots of hospital admissions, watchful doctors and bed rest. I cannot thank the staff of Maternal Fetal Medicine at Magee and my longtime friend and former college roommate, Meredith Lynn, enough for safely delivering Elizabeth and for reassuring me when I could not hear her crying, letting me know that the neonatologist had successfully put in a breathing tube and that she was breathing, and for sitting by my side when I cried and sobbed at the hospital when I was finally discharged and had to leave her behind. Even despite continued struggles to keep her healthy, growing and thriving, the fact that we were chosen to have been given this beautiful baby girl is nothing short of incredible. I am so proud of her, and so grateful to have been chosen to be her mommy. We are getting a continuous 12 hour feed today, just see how she does being hooked up to lines and feed and a pump all day long. We will be having the new feeding tube put in later this week. For right now, I'm taking bets on how many times the nurses and I will have to untangle her today... 😋..I'll be sure to announce the winner later
June 2 · Pittsburgh, PA ·
Just an FYI: If you're at a pharmacy and need to buy a decongestant and don't have your driver's license, they will accept your carrying permit as acceptable photo ID. I found this out this morning. #1001usesforaconcealedweaponspermit
June 2 · Pittsburgh, PA ·
Update from today:
1. Elizabeth is a master at yoga. Her downward facing dog is pretty impressive. It's almost as good as mine. Maybe she watches and learns more from me than I realize.
2. The continuous daytime feed can suck it, and we will not be doing that again. A Yogi, Ninja, way- to-flexible-and-active-for -failure -to -thrive two-year old princess +being tube fed and attached to multiple lines all day= a tedious game of untangling called, "what line is this anyway?"
3. The residents clearly are not fluent with my level of sarcasm
4. I'm thankful that I do fully practice my right to bear arms, or I wouldn't have been able to purchase a decongestant by using my carrying permit as ID. It's the most American way I have ever cleared my sinus, and I can breathe again. Hospital air after 7 days and my allergies do not mix.
5. The Pop Stop and their mocha milkshakes are beyond divine. I finally broke down today and had one. I think I may be in love.
6. Elizabeth finally crashed and took a nap. She is so beautiful and peaceful and still when she sleeps. She melts my heart. It was the only hour and a half that I was not untangling her, cleaning up vomit or diarrhea since 6 am.
7. We are hoping to get on the schedule to get the g/j tube tomorrow or Thursday. If she does well, and we figure out a feeding schedule that she can tolerate and doesn't interfere with her acrobat and contortionist lifestyle or cause any nasty uncontrollable physical manifestations that she can conjure up with wizard-like precision, we could be home this weekend.
8. I have discovered a new talent as a meme creator. I laughed so hard at my work today that my sides hurt.
9. I love books and popcorn, preferably together. I also love running to very loud music and am thankful for the parent gym here at Children's. I'm not sure the others appreciated my impromptu dance moves between switching equipment or the singing that I didn't always realize I was doing, but really they should thank me for the free entertainment.
10. I'm still unsure why I can't order wine from the cafeteria. I have drafted a frequent flyer program for parents of patients at CHP that includes earning points towards pedicures, massages, couch/sleeping accommodation upgrades, bottles of wine, European beach vacations and a variety of other things. I fully intend to have my draft edited and submitted before we are discharged, and I'll be turning it in to the necessary parties before I leave. (Suggestions are welcomed and encouraged)
That is all. Thank you for the love, prayers and support
June 3 · Pittsburgh, PA ·
Three big updates on Elizabeth:
1. She had her G/J tube put in this morning. They were able to do so without surgery or putting her under, which was awesome. She is now being fed directly into her small intestine. It will mean quite a bit of changes for her, as she will now need to have slow/ continuous feeds. She is getting 15ml/ hour right now and is tolerating feeds so far. Her cough is also miraculously gone since she is no longer being fed through her stomach. I don't want to or like to say, "I told you so," but I did say days ago that the cough was a sign that she wasn't tolerating the increased feeds well. 😳 #notadoctorjustamom
2. Due to some medical issues that have come about since we have been admitted and due to her overall general well being at this time, there is some debate as to whether they will clear us for travel to see the specialists in San Francisco and Boston in the next few weeks. Obviously, her health and safety are most important, and we can always reschedule, but I'm frustrated because I've been telling them she wasn't well for a month now. I can't help but feel if all of this had be taken seriously a bit sooner (I.e. Her weight loss and other issues since getting the G-tube in March) that maybe travel wouldn't be an issue now.😐
3. I am super grateful to the amazing staff in all areas here at CHP. The guy in the cafeteria now knows exactly what I'll be having for breakfast. The nurses chat with me like we've been BFFs since elementary school. I can't even take a nap when Elizabeth does because there is a steady flow of staff coming to check in on us and asking if we need anything or if there is anything they can do or get for us. Her team of doctors are amazing, even though I've had a few minor frustrations. It's been a long 8 days, but I'm so glad we are here. She is where she needs to be for sure.
June 4 · Pittsburgh, PA ·
She looks way better than I do as we begin Day 9 here at Children's! I'm a bit biased, but I think she is so beautiful, even if she's sticking her tongue out. Elizabeth is almost always laughing and smiling even in many situations when she has every right to cry or be angry. It's amazing how much you can learn and all of the beauty and laughter that can be found in someone so small. We will not be going home today, because we still need to establish a solid feeding plan and she lost weight today. In the meantime, I'm going to kiss, cuddle, and love on this little, miracle, warrior princess.
June 4 · Pittsburgh, PA ·
Today, Children's Hospital of Pittsburgh is celebrating their 125th birthday. They invited all of the patients with a hand delivered invitation to attend the party. They had music, dancing, lots of activities for the kids, and it was very fun. Elizabeth and I went down and joined in the party, and I'm so glad we did! We also had a nice visit from Alisha Hoover Cooper and Miss Avery Sue!!! The people that you meet along journeys like this are truly immeasurable treasures. I am so thankful for Children's Hospital of Pittsburgh, for all they have done for Elizabeth, for my newly formed network of strength found from my fellow special needs parents and their incredibly strong children, and for all of my family and friends (all of you!) who continue to pray and support us as we continue onward. I never imagined that Children's Hospital would become such a necessary and influential part of our lives when I became a parent, but I am eternally grateful for this amazing place. Happy Happy Birthday, Children's Hospital of Pittsburgh! Here's to many more years of you giving families like us help and hope to keep our complex kids going through the paths that they have been set upon
June 5 · Pittsburgh, PA ·
Congrats to all of my teacher friends at KC... You did it... You survived once again. A big congrats to all of the graduates!!!! Best wishes to you. Enjoy college and try to always make the best of the real world. I usually have an 8th grade, end of year, dance, karaoke, laughter, tearing up old essays party in my classroom today. I'm sad that I missed out on that. It's super fun! 😁
The reason I'm missing it is much more important, but I do miss my friends and students at school. We were hoping to go home soon, but soon is a relative term. Elizabeth didn't tolerate her increase in feeds well yesterday, and the cough came back. So, we had to decrease the rate. Elizabeth has always and will continue to be an extraordinary little girl who does things at her own pace. I take cues from her. What works for her isn't what works for other kids, and that's ok. We are having a vision test done today called a VEP, which will tell us how well her nerves and electrical impulses involved with her vision are functioning. We will also continue to monitor her health and well being and symptoms in response to her feeds, etc. Unless something big changes, we won't be home until probably next week sometime. Thanks for the love, prayers and support
June 5 ·
Update, thoughts, random items from Day 10:
1. One thing that you learn quickly from a journey like this one and from being the parent of a special needs or medically complex child is that information, answers and having to learn things that you never imagined you would have to learn are both a blessing and a curse. It's a wicked combination of peace and heartache that you can't really make sense of, but that you have to make sense of, and that you have to learn to live with and come to terms with no matter what.
2. When I graduated 15 years ago from high school, I knew that I wanted to help, work with, and be an advocate for children and their families who were experiencing difficulties of all kinds. I earned my Psych degree and two subsequent Master's Degrees to do just that: to counsel and educate and advocate for children, youth and families, especially those who have difficulty advocating for themselves. I never imagined that I would one day have to use those skills for a very personal reason: my daughter. You don't always realize why you're being set upon the paths that life sets before you, but it is clear to me now that all of my training, education, and love for knowledge and advocacy was to prepare me for this journey with Elizabeth.
3. Even if there are and have been numerous errors in communication during this journey and especially during our recent hospital stay, I still remain grateful for the world class care that we have access to right here in our backyard. Today, Elizabeth had a test done and had a consult with one of the world's leading experts in Genetic Ophthalmology that is a member of the staff right here at CHP. We see him in July for the results of the testing today, which measured Elizabeth's brain's ability to interpret visual stimuli and input. Our team of doctor's right here in Pittsburgh are some of the best in the world. Whenever I get frustrated, I meditate on that for a few minutes, and I sets my perception and irritation in the right direction again. They may be doctors, and world class doctors at that, but they are also humans. I make plenty of mistakes, all of the time, because I'm a human. I learn from them, or try to, and move on. I do the same thing with frustration... I just move on. It does no good to hold on to such things. In the words of Elsa, and from the movie Frozen that I now have memorized word for word, note for note, from beginning to end since we have seriously watched it at least 30 times since we have been here: Let it go!
4. I've always been fascinated with PTSD, and I have a particularly strong interest in the treatment, care, screening and program efficacy as it relates to Veterans. In fact, my thesis for my Master's Degree focused on just that subject. Once again, life was preparing me in ways that I did not realize. Today, they had to place electrodes on Elizabeth's head for her VEP test. As soon as she saw the electrodes, she freaked out. My usually happy, sweet, giggly girl was screaming, thrashing and completely lost it when she saw the electrodes. They had not even put them on her head or even attempted to do that... They simply showed them to us. That was all that it took. It took three of us to hold this 19 pound child still so they could place the electrodes on her head and wrap them into place. Then, I had to hold her on my lap for an hour while they conducted the test, as she cried and thrashed and wiped snot and boogers all over my black shirt. It now has an obscene, a literally obscene, amount of white crusted spots all over it. Once they took the electrodes off, she was totally fine. PTSD is for real, and Elizabeth definitely has it. Betsy Daley, we talked about this today. I changed my shirt, but I cannot change or erase the memory of how terrified Elizabeth is when she sees electrodes for her scalp. It's a terribly heartbreaking experience to not be able to ease your child's worry or pain, to not be able to fix or solve things that are wrong, and the struggle is real and I live that every day.
5. I would like to thank my special needs mom friends. Some of you I have never met in person, but I hope to some day. Those of you that I have met in person, I knew we would be friends from the moment we were connected via mutual friends, on Facebook, or through support groups. Thank you all for your wisdom, friendship, love and support. The struggle is real, and you know it because you have lived it. I'd like to give a special bit of praise to Alisha Hoover Cooper, Betsy, and Sara Laverick Stewart. You are three of the most strong, beautiful, Warrior Queens that i know and I am so honored to call you my friends. Thank you for keeping me sane and in check so that I can stay the course instead of run away or stray from it.
6. The Child Life Staff has helped to make our stay here fun. I'll be posting pictures later from our time spent in the sensory room, which Elizabeth loved! And, they brought me a little care package today. I am so very thankful for them.
7. Elizabeth is improving, and she is gaining weight at approximately a rate of 30 grams a day. Slow and steady, just like her feeds. When we get to go home, she will be hooked up to her pump and will be fed for 20-24 hours per day through her G/J tube directly into her small intestine at a rate of 55 ml per hour. I wasn't joking about living in a metric system world now. Slow and steady is what she can tolerate that allows her to both grow and be healthy. It changes your life in big ways when your child has to be fed literally all day, with nothing by mouth, but it is what she needs. So, we gladly adjust accordingly.
8. I never thought that I would do laundry at a hospital. I can now cross that off of my bucket list.
9. I have lost weight during our stay here and I am wearing a pair of jeans right now that my ass hasn't fit into in 6 years. Miracles do happen...keep the skinny jeans, my friends.
10. I know that I'll jinx myself, so I won't say it, but the end is near. In no time, I will be home, taking a long and hot bubble bath, sipping or gulping wine or whiskey or both out of my favorite glass, cuddling with Celtan and sleeping in my king sized bed, and waking up to my peonies, hydrangeas and lilacs in the morning and greeting the dawn of these changes and this crazy, beautiful life with every fiber of my being.
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June 6 · Edited ·
The reasons why I sleep right in her room, literally feet from her crib, in the hospital are endless. Tonight's #1 reason: to sit her up, reassure her, calm her, hold her hair back, frantically call for the nurse, because she is profusely vomiting and choking on it. Another bath, another outfit, another cough and a chest x ray forthcoming to determine if any of that remains in her lungs, especially if she aspirated during that episode. Now, we are snuggling and watching Frozen, again. She is calm, but the effects linger with me..
June 6 at 3:22pm · Edited ·
Always begin with the good!! 😊An incredibly enormous thank you to the super sweet Dittman Family for totally making Elizabeth's (and my) day! They obviously have connections, and they were able to arrange for Elsa (Elizabeth's favorite!!) to come and visit Elizabeth. They hugged, and danced and Elizabeth smiled and was so excited. Elsa even gave Elizabeth her very own crown, which she is still wearing. Thank you so very much to the Dittman's for such a sweet and thoughtful surprise. It really meant a lot to us, and to the several other patients who saw Elsa, too. She stopped and visited and took pictures with the other patients who were watching her and Elizabeth.
So, Day 11 began with a rough night here. Thankfully, the X-ray showed no signs of aspiration from all of the vomiting, but it did show that her J tube that she is fed from has come out of the small intestine and is coiled up into her stomach. This could be part of the reason why she was so sick last night. We also have other theories that we are ruling out, as well. In the meantime, the g/j tube needs to be replaced and retuned to the small intestine, which they will be doing any minute now. Good luck if they try to take her crown that Elsa gave her. They will get the "princess stink eye" for sure. At this point, it's unclear when we will get home. Again, soon is a relative term. It depends on how she tolerates having the tube replaced, and feeds, and the additional testing and the results to rule in/out these new theories for the vomiting and feed tolerance issues, and as always we operate on Elizabeth time. We were hoping to go home tonight, but that is totally out of the question now. So, we remain here and are watching Frozen... Again... 😋
Seriously, thank you to the Dittman family. I will never be able to say that enough. The smile on Elizabeth's face when she saw Elsa was priceless, and I will never forget it!
June 7 at 5:51pm · Pittsburgh, PA ·
Elizabeth Update: On day 12 here at Children's. Last night, she continued to have vomiting and choking episodes. So, we turned her rate of feeding down yet again hoping that would be the answer indicating she was being fed too much too fast. Sadly, this isn't the answer and in the past hour, she has had had two more vomiting and subsequent choking episodes that have brought up a significant amount of fluid. The GI team was just here. They said she needs to have additional testing done, hopefully tomorrow, to evaluate her for motility issues in her digestive tract. They are also going to be changing up her reflux meds, and we are going to be starting her on different fluids to reduce irritation and prevent dehydration so we can hopefully keep the IV team away. Elizabeth has finally calmed down, and she is resting peacefully. I am sitting beside her with watchful eyes. For two years, I have watched her cough, choke, and vomit with feeds, and it never, NEVER, gets any easier. It's terrifying, and it literally takes years off of my life every single time. It's a nasty combination of panic and terror every single time this happens to her for both of us. So, day 13, tomorrow, will not be the lucky day for us. We will be here until they can figure out what is causing this and how to stop it. In the meantime, I'm hoping that she doesn't aspirate any of this vomit into her lungs, causing another mess of issues and concerns. In happier news, Elizabeth has finally surpassed the 20 pound mark, and she now weighs in at 21.5 pounds. She is also much more alert, active, making new speech sounds, and is being much more interactive with toys and people. Nutrition is the building block for wellness. Now, if we could just get her body to realize that it's ok to be fed and to tolerate nutrition. As always, thank you for the love prayers and support. She's still in love with her Elsa crown (Thanks again, Dittman's). I continue to fall in love with her strength and happiness despite her many setbacks. Always the warrior princess ... #teamelizabethjeanne
June 9 at 3:53pm · Pittsburgh, PA ·
14 Updates, thoughts, etc. on Day 14:
1. It's day 14, and we remain in 747 on 7c at CHP. Unfortunately, it's not a 747 taking us to some delightful destination, unless you consider progress delightful like I do. However, I wouldn't turn down a trip to a beach or forest, just sayin.
2. For the past several days, Elizabeth has battled some serious vomiting related to her reflux not being properly controlled. I'm happy to report that the vomiting seems to have subsided, and Elizabeth is pleased about that, as well. There is nothing more terrifying than choking on your own vomit or watching your child choke on their own vomit. The amount of years I have left on this earth are quite questionable after the numerous times I've had to jump up, and suction and help her cough out vomit and stop her from turning various hues of blue, red and purple in the past few days. She is now on a nice cocktail of Reflux and nausea meds, which seem to be doing the trick. I'm hopeful that we will continue to see progress with the magical medicine cocktail, and the doctors are, too.
3. One thing always leads to another. This is always true. Now that the vomiting is under control, we are now having too many things come out of the other end. Now, we are battling rapid, explosive diarrhea. The current count is 33 diapers, many of them total blowouts, since 3 pm yesterday. In true Elizabeth fashion, she often laughs as she is uncontrollably pooping, and she found it especially hilarious at 2 am when she pooped all over my arm. I guess I have effectively passed on the "find humor in all things" lesson to her. So, numerous and frequent bed changes and baths are still part of the routine.
4. With all of the vomiting and diarrhea, she is now struggling with dehydration, and we have a date with the IV team later. She is clearly feeling the effects. She is very tired, cranky, and she has every right to be. Every damn right to be.
5. Elizabeth doesn't fit into any specific diagnostic box. She's definitely carving her own path, and I couldn't be more proud. I want my children to carve their own path. The doctors struggle with that a bit, and we had a discussion yesterday that involved me asking them to stop using the words normally or typically or usually when discussing symptoms and failed plans. She isn't typical or usual and what in the hell is normal anyway. Kids like Elizabeth move at their own pace, continually redefining medicine and progress and knowledge, and you have to think outside of the box to make progress with kids like her. We also had to have the "what's the harm in trying discussion?" When something isn't working, you need to try something else, right? My philosophy is: you never know until you try. This certainly applies in her case. Part of the reason we are still here comes from unwillingness and hesitation to try something different, something that defies what is written on page 350 of the Pediatrics 101 text book, trying things that usually don't have to be tried because they normally work, and hesitation to think outside of the box. The other part of the reason that we are still here is that Elizabeth herself is leading us to answers and solutions at her own pace. As always, at her slow and steady and miraculous and own beautiful pace.
5. I am so thankful for the family, friends and people near and far and some that we've never met, but that love and support us all of the same. You are all beautiful, lovely and wonderful humans, and you make my heart glad from the kindness, generosity, love, support, and prayers that you have showered us with along the journey. We appreciate you, and you make our hearts happy.
6. These long nights awake have enabled me to find solace and develop a very hot love affair with coffee. I mean, I always knew that I was a fan of coffee, but we've taken our relationship to a whole new level. We may have to have a talk soon, because I feel that maybe we are dangerously bridging towards co-dependency. It's clear to see that coffee understands my needs and is an excellent provider. I'm thankful for this recent relationship building time together over these past few weeks, and I'm pretty sure that we're both in it for the long run.
7. A huge thank you to my mom, Amy Kepple Bly, for coming to my aid, allowing me to get a little sleep, and for being a huge piece of moral support for me the other night, and always, at the peak of Elizabeth's sickness. You are never too old to need your mom, even if you don't want to admit it.
8. The theme of the past two weeks is clearly: you never know unless you try. Actually, it's one of the major themes of life. If something isn't working, then try something new. If that doesn't work, then try something else. You don't know if you like it, don't like it, or if it works or it doesn't until you try. End of story. We don't make progress by standing still and being hesitant or unwilling to try. Whether it's finding answers for your medically complex child, or finding what truly makes you happy and your heart tick, or trying to figure out if you like vegetables or beer, you'll never know until you try. When we stop trying, then there is no progress, or hope, or growth.
9. Speaking of hope, this whole situation sucks. I'm a fixer, a problem solver, and I just want the people in my life to be happy and healthy, even if it costs me personally. This sucks, because I can't fix this. I can't take this away from Elizabeth or make it better. It's a constant can't eat, can't sleep, full of worry heartache. It sucks. However, no matter where this journey leads us, no matter how poor the prognosis, no matter how tedious or tiring the care she requires, I will continue to be hopeful. Losing hope means that we have lost this battle. I refuse to lose. I refuse to believe that this is as good as it gets for her. I refuse to lose hope that she will thrive, grow and continue to amaze. I just refuse to lose hope. Despite of how much this just sucks, we have a lot to be thankful for and be hopeful about, and hopeful we will remain.
10. I put face cream in my hair this morning. I have no idea why I did that. I will say that I'm having a good hair day, so maybe I'm on to something. I also really enjoyed the group text between my cousins and sisters that ensued after I shared this mishap with them. Unfortunately, I am unable to share the contents of it with you due to the level of sheer inappropriateness that took place. Just know, that I got a good laugh in before 8 a.m. for sure.
11. Elizabeth has lost all of the weight that she has gained since admission. So, we are continuing to explore other options like changes in formula, additional testing, etc. to try to promote tolerance of feeds and weight gain. We are going to be here until they can figure it out. So, instead of targeting an anticipated discharge date, we are just going to let that be a surprise. Elizabeth and I both love surprises, and so we look forward to it.
12. I am so thankful for old school nurses who do no harm but take no shit. They make our time here very entertaining and productive. They also are fluent in my level of sarcasm, which is always a plus.
13. I am writing an alternative script to Frozen for adults only. I'm pretty pleased with my work.
14. I have to really hold back, but eventually I won't be able to any longer. So, be warned that at some point if you ask me if there is anything that we need, or anything you can do, or anything that you can bring, please do not be shocked if my response is, "Lawyers, Guns and Money." (You can thank Warren Zevon for that.)
We are, always...
#teamelizabetjeanne
June 10 at 9:00am · Pittsburgh, PA · Edited ·
Tears wiped away, screaming stopped, but the Princess stink eye still remains in full effect after already being stuck twice with a needle today on Day 15. She's chilling, and you guessed it, watching Frozen
June 11 at 2:08pm · Pittsburgh, PA ·
Day 16:
1. All you need is a diaper, or underwear in my case, and a crown. Unfortunately, only Elizabeth can get away with that here. 😁
2. There is nothing worse than holding your child as they cry and scream and shed tears of discomfort and pain. Nothing worse. No matter the time of day or night. The feeling of helplessness that I feel during those times literally hurts my heart so much that I feel like my chest is going to explode. It shreds apart hopes and dreams and just totally wrecks me. We've had way to many of those times. That's part of the journey, especially when you have a medically complex or special needs child. It sucks. It totally sucks, even when your typical child is having a bad day, but experiencing it over and over again with the same child just isn't fair. Life isn't fair. I get that. I just hate the universe for times like those that you can't take away. Hope always returns, and when the tears and screaming end, it is hope that brings peace. The memory remains, though, always.
3. I want to throat punch Hans in Frozen. He's a jackass. But, I've been in Ana's shoes, way more times than I would care to admit, and I totally get why she fell for him on so many levels. However, I still want to throat punch him, and this may or may not be part of my adult alternative script for Frozen. No spoilers, sorry.
3. I want to throat punch Hans in Frozen. He's a jackass. But, I've been in Ana's shoes, way more times than I would care to admit, and I totally get why she fell for him on so many levels. However, I still want to throat punch him, and this may or may not be part of my adult alternative script for Frozen. No spoilers, sorry.
4. Again with the "you don't know until you try." After two hours in the middle of the night of Elizabeth screaming and crying in pain, big tears rolling down her cheek, her staring into my eyes pleading for help, and her passing more gas than I thought was humanly possible for a human, let alone a human her size, I had the doctors paged. I very calmly but firmly said that they needed to do and try something. They agreed, and behold, we started a new formula and are already seeing improvement. I'm hopeful this is the ticket for her and will be our ticket to home.
5. I'm supposed to run in the Dirty Girl Mud run with my sisters and mom on Saturday. I'm hoping that happens. If not, as soon as I get home and can get away I have full intentions of rolling in the mud, getting way more than dirty, hopefully shredding a few whiffle ball bats off of some trees, firing several rounds of a weapon at some kind of target, possibly blowing up some things, and adding a few (or more) adult beverages in there once I'm done with weapons and explosives of course. I'll gladly take offers to arrange such an expedition, as I'm sure it would only add to the entertainment value. I'm way overdue for a day in a field or in or under a tree. Some call it being a redneck, I call it therapy.
6. I've really developed an effective leg workout while in the hospital. You sit on a chair and push your child's stroller with your legs. All over toning, for real. You should try it.
7. Elizabeth gained a significant amount of weight. Like 300 grams in a 24 hour period. That's really quite incredible, especially for her. She is obviously rare, as most girls want to keep weight off.
8. The doctors admitted today that Elizabeth is one of a kind, a miracle and she has them quite stumped on many levels. That's my girl. I want her to never settle, to always amaze, to keep fighting. She will, and my hope for her future is great. It's just a slower path, but it's her path. She owns it. She controls it. She is a fighter and has been from the start. I fought so hard to get her here and to keep her here, and I will never stop doing that. Can't stop, won't stop, for real. (There's your old school rap reference for the day. You're welcome.)
9. I could not be anywhere else but by her side. However, the importance of figuring this all out not only benefits her, it benefits our family. Time spent here with her is time spent away from Celtan. It's not fair to him. God, do I love that kid. I love both of my children more than I can express to you in words. I thought I knew what it meant to be in love until the moment that I first laid eyes upon them, and then I knew that I had never really known love. Every day, I talk to him on the phone. Every day it's a string of "I love you," and "I miss you," and "I can't wait to see you, mommy." We say those things back and forth and over and over again, but it doesn't fill the void of being there. The heartache that I feel for Elizabeth and everything she has fought and continues to fight is compounded and multiplied by the heartache that I feel because I'm also away from Celtan. It's a terrible thing to have your heart torn in two directions. So, the other reason why answers and solutions and progress are so important is that they are important for all of us, as a family.
10. I know that I say this a lot, but I can't say it enough. I am so thankful for my family and friends. I'm so blessed to be a part of your circle of love and support. Truly blessed.
11. I have developed a new form of under eye circle previously unknown to mankind. I'm hoping that they fade away once things start to settle and I can sleep in a bed again.
12. Speaking of being in bed, I cannot wait to crawl into my king sized bed and lay diagonally across it and enter into a furiously refreshing sleep. I fully intend to take the whole bed for myself. That bed and I have been together for a long time. It knows my soul. Bed hogging habits die hard, especially when you slept in a giant bed, alone for some time. Sorry, Brian Jason.
13. I'm not sure anyone can truly grasp the impact that having a child hooked up to a pump that feeds them directly into their intestine 24 hours a day has on their life or will have on our life, unless you are one of my fellow tubie parents that get it. It's a constant struggle with untangling tangled lines, pushing a pump on a pole around after your child, or carrying your child's pump in a backpack on the occasions when you leave the house or have to leave the house. However real the struggle may be, it is one that we welcome as it brings and bears fruits of growth and progress. It does however change things. It puts things into perspective, but it gives us what we have always desired for Elizabeth: growth and health and progress.
14. We have cancelled the trips to Boston and San Francisco and will reschedule them for a later time. Elizabeth needs time to recover and adjust, and her doctors and we too agree that now is not the time to travel. It would not be in her best interest, nor is she healthy enough at this time, and so be it. We look forward to going in the future.
15. I am so incredibly grateful for her team of doctors, the amazing nurses and the other incredible staff for everything that they have done for Elizabeth, but for everything they do day in and day out for many other children and their families. This is a wonderful place, and I'm so incredibly grateful for everything that they have done for my sweet Elizabeth.
16. Life is always what you make of it. It is always about perspective. Some days, I throw my hands up in the air, say "F this" and want to run as far and as fast as I can in the opposite direction. But, most days, I look around and can't help but smile at this life that I have been given that is full of so many beautiful, amazing and incredible blessings.
Here's to hoping and praying and wishing upon a million falling stars that tomorrow or soon that we can go home. Thanks for all of the love, prayers and support. Thank you for being a part of #teamelizabethjeanne
June 11 at 10:56pm · Pittsburgh, PA · Edited ·
All good things 💗
1. First, and foremost, we seem to have reached the ultimate cocktail of medicines, formula and feeding rate for Elizabeth. She has had an excellent day. In all honesty, it is the best I have seen her feel and look in a very long time. I won't say it and bring the curse upon us, but if we have a good night, and she shows weight gain at her morning weigh in, well.... 👯
2. I am so very blessed to not only have attended, grown up in the community and to now be a member of the KCHS faculty. It is truly not a group of colleagues, but a family. You all have given Brian Jason and I and our family so much unwavering support and have been so incredibly generous during this journey with Elizabeth. I would like to thank my friend and co-teacher of 8th grade English, Jen Hefferan Kramm, for coming down to visit today and for bringing a bag of goodies. You have been so thoughtful, kind and a big support in and out of the classroom to me. I appreciate your friendship and generosity more thank you know. Also, we have an incredible English department that I am proud to be a member of, and that have also been very supportive and generous and full of kindness and understanding throughout everything with Elizabeth. Jen delivered a card from the department that was filled with generosity and kind words. You all are near and dear to my heart, and I cannot thank you enough. I would especially like to thank Megan Bernstein Slaugenhoup and Joy Kinnard Heilman for being an added branch of support to me through all of this. You are all amazing.
3. There is something to be said about girlfriends that have been there to laugh and cry and do everything in between with you, no matter how much time, space, kids, careers, etc. distance you from each other. When you have known someone since elementary school, and after 20+ years you are all still friends, it speaks volumes. Thank you to Rachel Wilson and Jen Ozdinec for coming down to visit and bringing a bag of goodies, for your laughter, love, friendship, and for the selfie stick. You are both beautiful, lovely, and I'm so glad that after all of these years, and that even though we don't get to see each other as often or as much as we would like, that we can always pick right up like we have never missed a second. 😘
4. My family is the best. Thank you to my mom and grandmAmy Kepple BlyBly aShirley Keppleple, for staying with Elizabeth so that my dad and sisteEmily Rekichich, could take me out for dinner.
5. So..My dad and sister took me out to dinner. I ended up hiding in a bathroom in a restaurant, because the guy sitting beside me wouldn't leave me alone and kept telling me that I was gorgeous and lovely. While it was funny, I really just wanted to eat my giant cheeseburger at Tessaro's and drink my Summer Shandy. FYI, I was pretty sure I was going to have to pull the time tested and trusty diversion card, which in those situations requires my name to be Roxanne and my phone number to be 867-5309 #masterofaliases #workseverytime #jennyistooobvious #beergogglesinfulleffect #beeninahosptialfor16days
6.We passed a bar while walking down Main Street called "Tea Bags." The slogan on their sign said, "Tea Bags: Where you are always in hot water." The irony of the situation is that the adjacent business is the "Keep it Klean Barber Shop." I shit you not. I had to take a picture. To all
June 12 at 12:09pm · Millvale, PA ·
We are headed north... And will be listening to our traditional jailbreak song as we go... The link is below if you care to join in with us in spirit 😁 thanks for all of the love, prayers and support!
http://youtu.be/g3QO6_rz21k
June 12 at 1:19pm · Butler, PA ·
I'm pretty sure this picture says it all. But, just in case it doesn't... Celtan is marching around playing me an original composition on his kazoo, Elizabeth is on the floor giggling, Jason has the house all cleaned and has pizza already on the way (my favorite), and my heart is full of love. Thank you, everyone! We are home. Cheers to the next part of our journey as #teamelizabethjeanne!
This was one of my favorite photos that my cousin, Katie Callihan made while we were in the hospital. This is a picture of Elizabeth, Katie's daughter Jade, and my sister Emily's daughter (my niece) Aubrie on Memorial Day. The captions are priceless:
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