Merry Christmas from our family to yours!!! Thank you so much for holding us so closely in prayer!!! Wishing you the joy of the Lord, and the gifts of His abundant grace and perfect peace in the coming year!!! ❤
Merry Christmas to you all who have continued to hold our family closely in your hearts and prayers ❤️ Words cannot express our gratitude.
Praying you experience God’s most precious gift this Christmas…the gift of His Son Jesus. As we remember His birth, may it remind us the whole year through of His perfect love for us and forgiveness of our sins for all who believe and take Him as their Savior. He is not only the reason for the Christmas season, He is the reason for each and every moment of our being. To God be the glory 🙏🏻
Poppy recovered incredibly well from getting her tonsils and adenoids out and ear tubes put in! And in the weeks since, she has completely weaned off of oxygen for sleeping (at least here at sea level, we will see if the same goes for MT when we get home). She is noticeably more comfortable when she sleeps and is even more interested in trying food!! Thank you Jesus!! This is all we could have hoped for. It makes me wonder if she’s able to smell and taste a little better now that she can breathe! What an answer to prayer! Hallelujah! No doubt this is a major contributor to her successes in the intensive feeding program!!
On Tuesday morning, Poppy started the long anticipated Intensive Feeding Program!! The program is just that….intense. We (Poppy, Crosby, Brad, and I) go to the hospital for eating sessions at 8:30, 11:00, and 1:30. Each session is 1 hour long…we do this for 2 weeks. We pack food for everyone and eat together. The frequency is what makes it the most intense on top of having 2 kids under the age of 3 to wrangle and keep ‘happy.’ 😉 But so far, Poppy is doing beautifully! It seems to be a great dynamic when we all go and eat together. Since eating is such a social part of life, it’s definitely been a blessing to have all of us there to encourage eating for her. Crosby is doing a fabulous job supporting her in this! He is the best big brother she could have ever asked for. We are already exhausted and we’re only 3 days into the program! And I’ll have to find a way to keep up this frequency once we are home, which with her already busy therapy schedule and Crosby’s preschool schedule, it will be a challenge…but don’t get me wrong…a good challenge to have…a challenge I’ve prayed so hard to come for her. I’m praying the Lord continues to grant us endurance…the days are long and short all at the same time. 😉
I know it may sound crazy, but when kids are on a feeding tube, their intake is so closely monitored due to medical reasons, that most really never have a chance to get hungry, as their feedings are a certain amounts of, in Poppy’s case, medical grade formula, given at specific times. The problem with doing a hunger based wean without medical supervision for someone like Poppy, is the risk of damage to her kidneys and too high or too low anti rejection drug levels which can imact the health of her transplanted heart. Anti rejection drug absorption can really fluctuate when intake is not consistent.
The idea is a medically supervised hunger-based wean where kids and their families are well supported and monitored as the child learns to associate eating with hunger. We eat with Karen 3 times a day, and also visit frequently with the nutritionist to ensure Poppy is getting the nutrients and fluid volume she needs to survive. Poppy also has frequent labs to check her kidney function as well as anti rejection med levels. These tests tell us how well her kidneys are affected by her decrease in fluids, as well as the level of anti rejection medication in her system. Poor kidney function can damage the kidneys and anyone on anti rejection medication is already at great risk of kidney damage over the long term, as the medications are literally hazardous and hard on the kidneys. Too low of anti rejection drug level can cause greater risk of rejection of her transplanted heart, and too high of level can cause her to be over suppressed and a further increase her risk of cancer. In order to get an anti rejection drug level result in Montana, it’s an at least 4 day turn around. In Seattle, it’s overnight. So far, her labs are looking good and at her last weigh in, she had only lost .2kg in 5 days!! We also watch her urine and stool output, as some kids tend to become constipated with the drastic reduction, but so far that has not been the case for Poppy! Woohoo!!
The Friday before starting, the nutritionist started slowly cutting her calories, gradually reaching an 80% calorie reduction. Poppy has been getting just 20% of her typical daily calories since Monday, and her fluid intake has also been decreased slightly and replaced with water. She is finally experiencing real hunger, and it’s turning out to be a great motivator for Poppy to eat!
Since starting the reduction, Poppy has definitely become more interested in food, even leaning forward to take a spoonful of food offered to her!! Since starting the program on Tuesday, Poppy is doing amazing!! It is absolutely incredible how far she has come in the last month! She is taking to solids very well, quantity seems to be more and more each meal. Drinking fluids is more of a challenge, but she’s still trying! It’s so obvious the Lord’s hand in this. His timing, His provision, His working in her, this quality time here doing this as a family…all of it is such a tremendous gift. Thank you Lord!! We are just giddy and goose bumped and beyond excited this is happening for our girl. She is doing so awesome!! 🙂
We are noticing some redness and bumps on her cheeks and neck with every meal, so we are exploring the possibilities food allergies. We would love your prayer for wisdom with that. I’m hoping it’s just a new food exposure ‘break in’ period, because she’s never eaten this much before, and the formula she is on is hypoallergenic and already broken down..her body’s never really had break food down much before. I’m really hoping and praying this is just her body’s way of getting used to working the way it was designed to work.
After the Intensive Feeding Program is over, she is scheduled to finally have her annual cardiac cath with biopsy and MRI (the one she’s been trying to get since April, but keeps spiking fever beforehand prompting them to cancel and reschedule multiple times!!!!) on July 29th. It’s way over due and really really needs to happen, so we would love your prayers that she is able to stay healthy enough to be ready to go under anesthesia for that.
Your prayers mean so much to us. We can feel them for sure! 🙂
Poppy had a great night Thursday night, only requiring around .5L of O2 which was a great improvement from Wednesday night!! She was discharged from the PICU Friday afternoon, and so far seems to be recovering really well! Woohoo!!! Hallelujah!!!
Now we watch her closely this week for bleeding and drainage. God is so good- He continues to provide in every way, and she’s such a brave trooper! Thank you all for your unending prayers- we really do feel them and they mean so much to us ❤️
We would love prayers that she stay well so that she is healthy enough to finally go under anesthesia for her annual cardiac cath with biopsy coming up!! This has been scheduled and rescheduled due to illness numerous times, so we would love for this next attempt to happen. It is one of the best ways to measure rejection, so it’s really important that it gets done soon.
A couple of months ago, in hopes of addressing her ongoing GI issues, Poppy was switched from one of her antirejection meds, Cellcept/MMF to Imuran/Azathiaprine. Cellcept is a very good antirejection drug, but it’s downfall is that it can be really hard on the gut. After Poppy’s endoscopy and colonoscopy, the results showed that it was likely the Cellcept that was to blame for her tummy troubles, her transplant team decided since she has not yet had any rejection on her current Cyclosporine and Cellcept regimens, that it was worth it to switch from Cellcept to Imuran. The drawback of the Imuran, however, is that it’s not as great of an antirejection drug as the Cellcept, which makes this years biopsy that much more anticipated. The exciting news, is that she really seems to be liking the Imuran, as her GI issues have improved drastically since the switch!! Our prayer is that she can stay on her current antirejection regimen of cyclosporine and Imuran, so she can continue to move forward with the Intensive Feeding program in July, since her GI issues finally allow for some feeding interest and hopefully progress!
As a transplant mom, rejection is always in the back of my mind, just because it can act so mysteriously. Some kids can look bad and not be in rejection, and some kids can look amazing and be in rejection. Every time the heart goes through a bout of rejection, the heart takes a beating- depending on the degree of rejection, the heart has the potential to become damaged. Bad or numerous bouts of rejection can make the need to be relisted for a second transplant very real. So, while we really try not to think about it, it’s just a reality of having a kid with a heart transplant- it just is. So needless to say, these biopsies and check ups are always a little nerve racking 😉
Even though we hadn’t really planned to spend such an extended amount of time in Seattle this summer, our time together as a family has been such a beautiful blessing. We are forced to be in close quarters and get creative in our down time away from home…yes challenging at times, it’s been such a gift. Thank you Lord for this special time together ❤️
Poppy went in to the OR around 7:45pm last night and was tucked in tight to her room in the PICU by 10:30pm! She was the last case yesterday, and things just ran behind, (she was supposed to start at 4:00pm) but we are beyond thankful Dr. ‘C’ and team were still willing to go for it!! Thank you for all your prayers- it was truly Spirit filled and a miracle it even happened. We both were secretly anxious about even checking into the surgery center, as the past 2 times they’ve cancelled the case because of her respiratory status, but we were praying constantly and could feel your prayers, the Holy Spirit totally took it on and that was obvious. Thank you Jesus!! So much depended on this surgery happening in this time frame…we’re blown away….
The Neurosurgeon resident tapped her cyst shunt right off the bat and was pleased with what he saw! At this point, the shunt appears to be working, as the csf (cerebral spinal fluid) he pulled out looked great and had no pressure built up behind it. He says the results are what he hoped to see, but they don’t necessarily completely mean we won’t see the cyst continue to grow in the future. It means that right now, the shunt is working adequately enough to be safe, even though the cyst appears to be growing at a very slow rate. If pressure would have been built up, and csf came gushing out, we’d likely be looking at brain surgery to replace the shunt. We can’t even express what a relief this is!! Phew!!! Thank you Lord!!! She will follow up with them again in 3 months.
So far her recovery has been really pretty decent considering…Initially we are to expect more obstruction, as the area worked on temporarily swells as it begins to heal. That seems to be true so far, as she came out snoring much much louder than before and desatted more frequently overnight. She’s got 3.5L O2 through her nasal cannula and high flow blow by for her mouth (she’s still a mouth breather at this point, that should improve as she heals). Since she can’t have ibuprofen (because it’s processed through the kidneys which already take a big hit from her antirejection medications it’s a no-no), she is on Tylenol and morphine for now, and it seems to be working well. She’s super groggy and has been pretty much napping most of the day so far. She will stay another night in the PICU because of her desatting, and just see how she does tonight and go from there.
Thank you all again so much for praying. We can really feel it. God’s grace is incredible and such a comfort. We would love your continued prayers for a smooth and speedy recovery!
A week ago, we made the trek over to Seattle planning for a week full of appointments. Poppy was to have her annual heart cath with biopsy as well as a sedated MRI on Monday. The cath/biopsy is one of the best ways to check her heart for rejection, and the MRI to get a better idea of where her seizures are originating from (knowing this could help her doctor prescribe the antiseizure med that’s most appropriate for treating them). Other appointments consisted of Otolaryngology to hopefully get her scheduled for tonsillectomy, adenoids, and tubes. Neurosurgery follow up, Neurology to discuss her MRI results and seizure medications, Transplant Cardiology, and a sleep study to address her de-satting during sleep and oxygen needs.
Everything was looking alright for her cath. We had kept her out of public a week prior in hopes of keeping her healthy, as the last time we tried to get it done, she had come down with a fever and a cold the night before 😞Things were looking good until the night before….and then girl spiked a fever 101.7 😩Ahhhhhhhh!!! Please no 😩 Ugh it was frustrating, and completely out of our hands…why?!?!! Then I was actually hoping it could be explained somehow by an ear infection…We showed up the next morning hoping for the best. Because she had been up in the night with a fever and high heart rate, she looked bad 😁 The anesthesiologist almost wanted to try and then she got irritable and started desatting…case cancelled 😞 To be rescheduled for 4-6 weeks 😩 So bummed this had to be cancelled and rescheduled yet again, but knew God had it all. Bad things can happen when you go under anesthesia while fighting an infection, so while it was not what we had hoped, at the same time, we are so thankful for everyone erring on the side of caution. Labs and urine came back looking like a UTI, which was a huge relief in some ways..a treatable explanation!! Hallelujah!!
Since the sedated MRI didn’t happen, as they were going to do it while she was still under anesthesia from her heart cath, we just discussed medications with Poppy’s neurologist, Dr. Kollros. Poppy has had increased seizure activity since January. She had that major one that put her in a paralyzed state for 45 min back in January, and since they’ve been smaller, but she’s probably had around 6 this year. She has been on Keppra since she was 10 days old, and has finally maxed out on that dose- she has no room to go up on it. A couple weeks ago, as a result of another seizure, Dr. Kollros decided it was time to add an secondary medication over the phone. This becomes complicated in Poppy’s case, as many of the antiseizure meds can mess with her antirejection med levels, which are crucial to keeping her body from rejecting her heart. He chose the med that seems to do the best in her scenario, Lacosamide, also called Vimpat. So far, aside from the initial insomnia and spaciness that comes with antiseizure meds, she’s doing well. We are now at her target dose and it does seem she’s settled into it, as she’s sleeping again!! Thank you Jesus!! This girl needs her sleep!
Tuesday was the long awaited appointment with Otolarangology (ear/nose/throat). Poppy has been mouth breathing and fighting chronic ear infections for the past 6+months, even requiring oxygen at night. It was just as we (us and Poppy’s entire medical team) had hoped…they NEED to come out and she needs ear tubes. The sooner the better,and because we are here from MT, they are adding her in on Wednesday!!!!!! Hallelujah!! Such an answer to prayer!!!! Because of her complexity, she will be in ICU overnight and then to the floor for ideally just one night. They want her to stay close for a week or so to monitor for bleeding. We would love your prayers for a safe and successful procedure and speedy recovery!!
Neurosurgery had scheduled a follow up with a haste MRI (a super fast MRI of her head that requires no sedation, just a tight swaddle), even though it wasn’t quite time for a check up, and it was definitely divinely orchestrated. The haste MRI showed that the shunt that’s in her ventricle seems to be working well, as her ventricles look stable/same size as they’ve been. However, the shunt that is in her cyst is in question, as her cyst is noticeably larger than it was back in November. We discussed how Poppy’s been doing and overall, she’s been doing great, so we were honestly shocked to find this out. If the shunt is on its way to malfunctioning, then we are in the right place. Montana can’t help her with this, and should it become worse, it becomes an emergency situation fast. When shunts fail, it means that they no longer drain the cerebral spinal fluid off of the brain at the appropriate rate, causing fluid to accumulate and cause swelling in the brain. For people without Hydrocephalus, our body’s do this automatically. The brain bleeds and stroke that occurred when Poppy was her sickest and on ECMO are what injured her brain enough to cause Hydrocephalus. Since she’s 2, her fontenal has closed, a shunt malfunction that isn’t able to be addressed fast can quickly lead to more brain damage and if undetected and untreated, death. So, because of this change and Poppy’s track record of having numerous shunt revisions in the past (2013), they are going to tap her shunt while she’s under anesthesia for her tonsils. Tapping (inserting a tiny needle to check pressures etc.) the shunt can provide them with numbers that can help them determine how well the shunt is working. Praying praying she won’t need a revision…while they are life saving, brain surgery comes with its own set of issues neurologically and risk of infection is higher for Poppy because she is immune suppressed…Shunt revisions mean switching the shunt out in brain surgery. It’s all in Your hands God..it’s all in your hands. Just as we are hearing this news, Ronald McDonald house calls with a room for us!!! Thank you Jesus!!! This was a huge answer to fervent prayer!! He always provides…it’s overwhelming and so comforting to have a room so close to the hospital, as our trip is becoming a much longer one than we had planned. Thank you Lord, You have this…please calm my anxious heart.
Even though her cath hasn’t happened yet, she still got to check in with Transplant Cardiology. After her looking so terrible on Monday and coming back with questionable labs, it was so good to hear that her heart looks stable!! And because her chronic vomiting and diahrea have been much improved since her switch to Imuran from MMF/Cellcept, and she’s been bolus feeding for a few weeks now, they are excited for her to finally participate in the Intensive Feeding Program in July! Her cath/biopsy and MRI are scheduled now for July 9th. Praying she stays healthy so this can actually happen!!!!
Poppy has been on the waiting list for over a year for the Intensive Feeding Program, and in January, we optimistically signed her up for July. We agreed if she was ready and all of her providers agreed it was time to try, we needed to go for it! So far things are looking good for her to participate. The Intensive Feeding Program is very hard to get into. They only work with 2 kids per month and consists of 2 weeks of meeting the Feeding Therapist, Karen Quinn-Shea and team 3 times a day to practice eating. They also cut calories through what she typically gets through her gtube, so she actually gets hungry. This all needs to be medically supervised, especially in Poppy’s case, because of the affect her transplant meds have on her kidneys, she really needs to stay well hydrated to prevent kidney damage. They will do frequent labs to monitor this throughout the program. We are praying the timing is right, it’s been a long road even just getting her to this point with feeding, we are hopeful the program will help her get closer to getting off of her gtube!! Praying that if God has a different time in mind, that He would make it obvious.
Poppy’s sleep study went pretty well. She woke up a couple times throughout, but otherwise seemed to do pretty well. Otolarangology was interested in doing this, as was Neurology, as her seizures always occur around sleep. We are anxious to hear the results!
Somewhere in the meantime, she will see Opthalmology and Neurodevelopemental as well.
So just like that, we are spending most of the summer in Seattle! We knew we would be out a couple times for appts, but hadn’t really planned on a 7week stay. It is clear we are where we need to be for right now..God has clearly orchestrated this whole thing. He has provided a place to stay, divine timing for all of these appointments we’ve been praying to take place…we can be here and do this as a family now without Brad having to take time off of work (he’s a teacher)…it’s ALL in His hands.
In church yesterday, we sang ‘Great is Thy Faithfulness’ and I found it hard to fight back tears…
Great is Thy faithfulness, O God my Father;
there is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
as Thou hast been Thou forever will be.
Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
all I have needed Thy hand hath provided;
great is Thy faithfulness, Lord, unto me!
Summer and winter and springtime and harvest,
sun, moon and stars in their courses above
join with all nature in manifold witness
to Thy great faithfulness, mercy and love. Refrain
Pardon for sin and a peace that endureth
Thy own dear presence to cheer and to guide;
strength for today and bright hope for tomorrow,
Two years ago on this very day, Poppy got her new heart! It is absolutely beyond words overwhelming to try and explain the feelings and emotions of that day two years ago, and even now…The life giving decision that a grieving family was willing to entertain, in what I imagine, was one of the darkest days of their life, mourning the loss of their own child, and somehow willing to consider donating life to another… I just don’t have words…except to humbly accept this precious priceless gift and attempt to express my deepest, fullest gratitude to God, the donor family, all who have prayed for us, family, friends, doctors, nurses, communities…it’s overwhelming.
This month has been emotional…just recalling the past 2 years and how God has truly, fully, sufficiently provided in every way imaginable has brought me to tears often, especially this month. Poppy’s complicated course was/is traumatic and life changing…it is heavy and a lot to even think about and recall…it is incredibly humbling and glorious. God has made Himself known to so many through her little life- it has been amazing to see His glory in the miraculous victories as well as the heart ache of the trials. We have changed…what we value has changed..our perspective has changed….God is so good..though her road is challenging, she is a miraculous, joyous delight…and right now we have the privilege of getting to know her well…thank you Jesus!! ❤
Praise God!! Poppy is finally feeling better enough to be discharged!! Her labs came back looking hugely improved from when we arrived!! Thank you Jesus!!
When we left, we knew we were dealing with the nasty adnovirus, but her high fevers, energy level, labs and a chest X-ray left much in question. It was such a great relief to see her labs so greatly improved, and to have rejection, shunt infection, and EBV ruled out!! After speaking with the docs and respiratory therapists at SCH, it sounds like it’s been a rough season for viruses, and apparently adnovirus has the potential to be pretty bad. We are beyond grateful for the Lord’s hand in orchestrating Poppy being right where she needed to be at the right time.
She seems to be regaining energy daily, and starting to get back to her spunky playful self!! Hallelujah!! She is still requiring oxygen while she sleeps, so she has been sent home on oxygen. It seems as though she’s is possibly having some obstruction when she sleeps, as her oxygen saturations while she sleeping have been dipping as low as the 40s and bouncing right back up to at least 95% (Most people’s oxygen saturations are 90-100%) Hence Poppy’s need for oxygen. She will also have a sleep study once she is well to better figure out what exactly is going on. Her tonsils are ‘massive’ as the ear, nose and throat doc put it. Since she was admitted, the floor docs were able to have ENT swing by and do a quick evaluation, instead of waiting until May. He is interested in seeing her well, and repeating her hearing test, as well has seeing what the sleep study shows before we plan anything.
This isn’t our first rodeo with oxygen…she was sent home on it last spring after spending a week in the hospital with RSV. Thankfully this time she is only requiring it for sleep. I have the utmost respect for those on oxygen constantly…it’s so cumbersome.
The pathology report from the biopsies taken at her endoscopy and colonoscopy also came back. So far, things are pointing to gastritis as well as some indicators of a possible drug allergy or infection. Dr. Geifer (GI doc) spoke with Dr. Hong (transplant doc) about the possible med allergy as well as having Infectious Disease weigh in and test for possible infections that could be wreaking havoc on her poor tummy. If it is in fact a drug allergy, Dr. Hong says it would be the MMF (Cellcept). It is one of the anti rejection meds that she’s on and it’s a nasty one. She is on the MMF and cyclosporine twice a day for antirejection, and by the grace of God, has had no rejection on this combination! If the team must switch her off of the MMF to help her tummy heal, they will, but first want to rule out other possible infections, as this kind of med switch is a big deal. There are other antirejection meds out there, all of which have the potential to have nasty side effects, and all work slightly differently.
While we were there, infectious disease came by and determined what tests to run. We should hear the results in the next weeks. It has been such a blessing to finally find possible reasons as to why her gut is so sick. Now just praying for a treatable answer.
Dr. Hong recommended Poppy to take it easy for the next week in order to continue to recover. Her annual cardiac cath/biopsy to check for rejection and MRI have once again been rescheduled for June, in hopes Poppy will be well enough to go under anesthesia by then. The girl has a busy summer of hopefully getting things figured out!! Praying she continues to feel better ❤️
Thank you all who continue to pray for us. It is such a roller coaster ride at times…it is such a comfort to know so many are praying for us. We can definitely feel the Lord’s hand in it, every step of the way…though we are weary and anxious, He is faithful to see us through. Though we were there because of Poppy’s illness, it was apparent we also were there for reasons beyond our understanding and comprehension….Thank you Lord for Your divine orchestration.❤️
Thank you so much for your prayers!! The power of prayer is undeniable, and the love outstretched to our family is beyond humbling. God is all over this in so many ways ❤️ Divine orchestration far too complicated and overwhelming to even express. Hallelujah!
At this point, after too many pokes to count and thoroughly exploring bacterial infection possibilities, it’s looking like Poppy is fighting a very nasty virus. There are still some labs pending that may reveal other things, but we should hear in the next day or two. We are still waiting on her biopsy results from her endoscopy/colonoscopy as well as her EBV labs. EBV (Epstein-Barr virus/mono) http://www.cdc.gov/epstein-barr/about-mono.html is something they check for regularly for transplant patients. It has the potential to cause big problems for those on immune suppression, so they keep a close eye on it. We should hopefully hear back soon! Anxiously awaiting…
Other than that, I am delighted to report that Poppy has been off of the IV antibiotic for nearly 24hrs and has had no fever!! Her severe lethargy is letting up some as well!! Thank you Lord!! She had a few good periods of playful interaction, complete with smiles and all!! Hallelujah!! Our girl is coming back!! Thank you Jesus!!
She is still on 2L of oxygen, lots of thick goopy snot, irritable at times, and super tired, but overall, it really seems like she may be turning the corner!! Praise God!
She will get a surveillance echo at some point to just take a peak at her heart. If she has a good night, there is small talk of leaving the CICU and moving to the recovery floor tomorrow (just don’t tell Poppy that 😉)!! The girl is a wild card!! Everyone has said these viruses can be really nasty and can take a long time to clear, so I really don’t know a ‘plan.’ We are here until we don’t need to be anymore.
Being in the CICU brings back a lot of memories…just being the the CICU with a baby who can cry (not intubated) and well enough to be held (heart rate doesn’t sky rocket to a dangerously high rate or require extra sedation on board to even attempt holding) is a blessing and a privilege. I remember wanting so badly just to hold my baby, even just be able to hear her cry….ugh it’s such a milestone that I never even thought twice about before we had Poppy. Of course you can hold your baby right? And of course they cry!!? Actually, not always..it’s real and humbling and I pray I never take it for granted.
I see ‘us’ all around…to be kind of on the other side of things is really mind blowing. I look around, and as much as I know how that was once us, a part of me can’t even believe that was us. How did we even do that? And all I can even grab hold of to explain is that it was God’s grace. It’s all very hard for many reasons…but looking back..being back here now in this place…seeing ‘us’ all around…God’s grace. God’s grace IS sufficient, always, if we ask for it. It truly takes my breath away..it’s been emotional for us and I think it always will be..I hope it always will be- it’s a special place with very special people where the Lord and His abundance of grace abounds.
Thank you again for all your prayers ❤️ They truly mean so much to us. To be so prayerfully encouraged through this roller coaster ride is such a tremendous blessing. God is here, in ways that I can’t even fully explain…
So…some wonderful news! Poppy was well enough on Monday to have her endoscopy and colonoscopy! Hallelujah!! This is what we’ve been anxiously waiting for!! Dr. Geifer found some mild abnormalalitites, but no ulcers and no visible cause for deep concern. He biopsied many areas along her GI tract in hopes of finding something treatable of which to attribute Poppy’s tummy troubles. We are still anxiously awaiting those results.
And then the not so great news…just as we were heading home, Poppy awoke with a 102 temp, and proceeded to fever for the next 2 days. She still has ger nasty upper respiratory gunk that she’s had, but a temp that high for a kid on immunosuppression is concerning. All the while, Poppy kept her same playful smiley attitude with a little more fatigue than usual. The girl’s a trooper, so we were encouraged to head home, given how she looked. Even when she’s sick, she’s pretty playful and happy! We came home to see Dr. Idzerda. Dr. Idzerda ordered tests to try to pin point the cause of the fevers. After 3 days of Poppy continuing to deteriorate, despite testing and antibiotic efforts, Dr. Idzerda and Dr. Albers (transplant) made the call to life flight her out to Seattle, where further testing and support is readily available.
Poppy is droopy and lethargic, pale and needing a little oxygen via nasal cannula. She has mouth breathing with lots of gunk in her poor nose. Her eyes and demeanor just look sick 😞
Her chest X-Rays have shown a rapid change, however still looking ‘virally.’ She did not tolerate feeds well yesterday and was clearly not feeling well, and her oxygen saturations while sleeping were in the mid 80s. Hers are usually 90s even while sick. In the past, when she had RSV last year, I remember satting in the 80s was enough to be admitted. I just sat down on he floor in her room and stared. Her resting heart rate, usually 100-115 was 155. She was satting 83-87% 😞 Even the night before her sats were beautiful….I just sat there and sat there…silencing the obnoxiously loud alarm the pulse ox sounds when something is out of range, trying not to break down. Why? Please Lord, why?
I had just hung up the phone an hour ago with Dr. Idzerda. Informing her that Poppy had spiked another 102 and thrown up again…and now this…I had to call her back, knowing admission was indeed happening….this is the life we lead…The Lord is teaching me great patience and perseverance…I am such a planner by nature and unreliability kills me. I used to not understand people who were unreliable…just be reliable…just do what you say you’re going to do, show up when you say you’re going to show up, let’s make a plan and all follow through….well, I am now tremendously humbled…my life is unreliable…I have become unreliable. It’s all out of my control. Thankfully God is in control and His hands are the best hands to be in. He is sovereign and things can change in an instant..they really can. He is always here, always faithful. Get over yourself, and give it to God! Easier said than done, but always so freeing. Please Lord, help me give it over to You.
Thankfully, my bag was already packed. It’s not like you want the worst to happen by any means, but you start to plan for it, and pack bags when things seem off, just in case. And once admitted, you really don’t know when you’ll be back. It probably sounds crazy but it’s the life we lead, like so many others here. It’s the unspoken reality of health and morbidity…Lord it’s in your hands!
So as her lethargy and sickness became more apparent. Some labs came back out of range, so the best thing was to get her to Seattle where she could be supported best should she need more support than MT can offer. I cannot say enough amazing things about Dr. Idzerda and the whole crew at Acorn Pediatrics. Their commitment to superb patient care is phenomenal. What a tremendous blessing to have such incredible care in MT!!
She and I arrived around 6:00 this morning. Poppy has been lethargic and has completely slept the day away. It could just be that she has a nasty virus and just needs supported through it. It could also be that a secondary bacterial infection is brewing, so more labs and antibiotics for today. Hoping to hear something soon. Even nurses who know her well are convinced something is not quite right. 😞
Also hoping to hear back about her endoscopy/colonoscopy biopsy results…I’m also curious if her sick gut has anything to do with the sudden down turn. Praying praying something will become clear to the team.
We are here, in our home away from home. Brad and Crosby are on their way. The ‘floor’ is full, so Poppy is in the CICU. As much as you don’t really want what being in the CICU means, they are like family. God has surrounded us with amazing people to pray, care, and support us along the way and it’s overhelmingly humbling. It’s inexplainable and yet so divine and obvious the Lord’s divine orchestration…We are praying for answers. Lord hear our prayers ❤️
Photos taken by Loni Judisch Fine Art
Photos taken by: Carlie Breen Photography
What a difference a couple of years makes…! This time of year is super emotional for us for many reasons..it’s like our bodies ‘know’ or ‘remember’ what life was like 2 years ago when Poppy was critical in the CICU, and even last year when was admitted over Easter for RSV. It’s like our ‘fight or flight’ automatically turns on…our nerves are shot…feeling like we’re operating on 1/4 brain power (and we are…just ask anyone around us…we are complete zombies), teary eyed, sentimental, emotional, overhelmed by all that’s happened…overhelmed by God’s grace, peace, and provision..the people and prayers He continues to surround us with..the gracious servant hearted people who just love on us.. It’s absolutely humbling. We look at our family and just feel God’s sovereignty and faithful goodness.
This Easter, we are in Seattle. Poppy had appointments Thursday, Friday, and Monday.
She saw audiology on Thursday. She is followed by audiology as part of ECMO protocol. Any kid who has been on ECMO is at risk for hearing loss, so it’s part of protocol that audiology follow them for a couple years. She’s been fighting an upper respiratory virus for a month or so and just finished up a round of antibiotics for a double ear infection. The audiologist wasn’t overly impressed by Poppy’s hearing test. Her left ear was normal but right ear really struggled. She said it’s very likely due to the fact that she’s been fighting a cold and just getting over an ear infection, but because of her history and mouth breathing etc, she referred Poppy to see ‘oto’/ ear, nose, and throat doctor for further investigation.
Friday, Poppy had her annual cardiac cath with biopsy scheduled to check for rejection and while she was still under anesthesia, she would have an MRI done of her head to better understand her brain injury and seizure origination in hopes to effectively treat her seizures. But, Poppy woke up with a 100.5 temp and the cardiac anesthesiologist, who knows her well, heard junk in her lungs and did not feel it was in Poppy’s best interest to be put under in her current state. Soo bummed but ultimately know it’s what is best and safest. And honestly, Poppy doesn’t have the reputation for ‘most common, best, most predicable outcome’ kid, and they all know it, and I don’t blame them a bit! I don’t trust her either. So while I’m bummed at the inconvenience of having to reschedule for another time, I have a peace about it and am honestly thankful she/we have such an amazing team that truly does what is best for her. He made it sound like if she improves over the weekend, no fever and clear lungs, that she’d be ready for her procedure on Monday.
Monday, Poppy is hopefully going in for an endoscopy/colonoscopy. Poppy has been seeing a new pediatric GI doc in Billings, Dr. Flass, and he has been such a blessing. He is the first doctor to actually order stool samples and a gastric emptying study in hopes of trying to figure out what is up with her gut?! She has been on a better probiotic, VSL #3 for the last 2 months, as well as a super high dose of prevacid and that’s helped but not enough. One of the stool samples he ran was her calprotectin, which is an inflammatory marker within the GI tract. A high number for a kid her age is 100, hers came back at 600. He decided she needed to be scoped, but just to be sure of the result, he repeated it. Her second result came back at 500. The need for a scope was confirmed!! The poor girls tummy is so sick 😞 Praying praying she is well enough to get scoped… So ready for some answers!! This feeding intolerance and diahrea issues are wearing on all of us…We are just so thankful to have a doc onboard who is as anxious as we are to find some relief for our girl.
Poppy also saw her neurologist, Dr. Kollros last week when he was in Missoula from Seattle Children’s. Poppy has had a few more seizure like episodes since her big one in January, and as a result, her antiseizure med, Keppra, has been increased to a high dose. So far it seems to be working. He explained that the MRI will provide valuable information when discerning what type and where the seizures are coming from and that will be helpful when trying to treat with the most effective antiseizure medication. Her cath/biopsy and MRI are rescheduled for May.
Despite the increase in seizure activity, Poppy is making some really nice improvements in her therapies!! She is now all about peek a boo and is waving again!! She is realizing cause and effect with her toys that do things if she presses the right button!! It’s pretty amazing!! She also just got her first set of braces that help support her ankles! She is really working hard on getting strong through her trunk and core. She is trying so hard to crawl by pretty much doing the crawl stroke- it is so cool!! She is even taking steps with support!! Soo exciting!! 😊 Hallelujah!!
We would love your prayer for healing…that she would be well enough to go under on Monday…or even better, that her gut would be healed and that she would eat and drink by mouth!! God can do anything!!
Happy Easter!! May we daily remember the joy of our salvation through Christ and what He has done on the cross for us all ❤️
It is beyond words amazing and overwhelming to recall 2 years ago today, when we got to meet our girl for the first time. So much anticipation and worry and hope and more prayer than I’ve ever experienced over our newest addition, born with HLHS. We dreamed of being able to celebrate birthdays and major milestones, but were cautiously optimistic to entertain those hopes and dreams for the fear of them not ever happening…
Poppy has been through a lot in her short 2 years….She is many miracles. Countless times she could have easily gone home to be with Jesus….countless times…I don’t know why she was spared and others were not…all we can do is pray for those families…pray for God’s peace to overwhelm them and carry them…and cherish…cherish this time together.. tomorrow is not guaranteed for anyone…it just isn’t.
God has revealed Himself and continues to reveal Himself in so many ways to us through her little life…it’s humbling and life changing and hard and overwhelming and amazing…and at the same time, indescribable…Our family is still trying to find a sense of normalcy, but through the trials and joys of this life, we know it is purely by the grace of God alone, through prayer and loving support, that we are able to enjoy this time as a family. Never will we take for granted this time with both of our precious babes, as we know and mourn with so many whose sweet babes have gone on to be with Jesus.
Today we celebrate this sweet sunshine girl who is sweet and feisty…who doesn’t like having her hair brushed, hands touched, or diaper changed..loves teasing Crosby, and playing peek a boo, loves loud music and dancing in momma’s arms..loves stimulation and loud banging noises..loves books and chewing and blowing bubbles in the bath, clapping, bouncing, swinging, and I believe her all time fave…smiling. She is truly a delight..pure joy. Thank you Jesus for this precious time. May we not take for granted what You have given us ❤️
After receiving the full work up to check her heart- her heart looks great! The event likely caused her BNP to spike initially, but is back within normal limits!! Hallelujah!! Her echo was stable from when we were here 10 days ago and still looks beautiful!! No rejection detected either!!! Thank you Jesus for protecting her precious heart!! ❤️ This news is such an incredible relief- like we can breathe again. Whew!
After visiting at length with Neurology, which by the way, God blessed us greatly with who he sent. The doctor he sent actually knew Poppy from when she was so sick on ECMO, and remembers when her brain injury occurred and her seizures first started. He was also very thorough and detailed!!! I mean, direct answer to prayers!! God you are soo good!!
He was able to explain what likely happened and also visited about what we should do if it ever happens again.
Most likely, Poppy seized while laying in her bed, unbeknownst to us. When I found her, she was in a ‘postictal phase.’ A phase after the seizure where the brain is recovering from the seizure. The longer this phase, the more severe the seizure likely was. Her 45+minutes when she was lifeless, barely able to breathe, unresponsive…this was when her brain was recovering from the seizure she had. Followed by vomiting, being super lethargic and sleeping the rest of the day away, all points to seizure.
He explained how Poppy is already at risk for seizures because she’s had them in the past, her EEG shows abnormal activity (due to brain injury) that also puts her at risk for seizure, and also her age. Apparently kids ages 1-3 are at slightly greater risk than other ages to seize. Often the triggers can be: fever, gastroenteritis, flu, cold, and changes in or lack of sleep. So, because Poppy is recovering from gastroenteritis (tummy troubles), had a cold, and really doesn’t sleep well, he believes her seizure was likely ‘provoked’ and doesn’t feel seizures will become an issue. But when she’s sick or not sleeping well or vomiting, we are to watch her very closely, as it could really send her into seizure.
He is increasing her Keppra (anti-seizure med) dose again, which was last done in November, and since we are so rural, he is sending us home with a rescue dose to be delivered after calling 911, should it ever happen again. The rescue dose can usually stop a seizure pretty quickly by slowing down the brain, however with that also comes slowing of breathing, so it’s important we have trained paramedics on their way with breathing support just in case upon administration.
This stuff is so unnerving, because the ‘triggers’ are common things for Poppy. He even said the scary part is that we don’t know if this has happened before, or when it will happen again, but the reassuring thing is that she was able to break through on her own, though her breathing was rapid and shallow, she never stopped breathing and turned blue, which can happen. She didn’t end up aspirating to the point of pneumonia or drowning… Very true…I’ve heard horror stories about what kinds of things can happen during seizure and what can be permanent damage as a result. The Lord protected her greatly from what could have been. I don’t even have words, grateful just doesn’t even begin to cover it.
Besides being tired, Poppy is appropriate!!! Thank you Lord!!! Her reflexes and motor movements seem to be unchanged!! She really looks pretty good! Thank you all so much for praying ❤️ Neurology would like to get a thorough MRI the next time she is under anesthesia, so that will likely be in April before her heart cath/biopsy. It should help them better determine where her seizures would likely start and where they may spread in the brain, perhaps helping us to understand what her seizures would look like.
Oh this has been such a roller coaster ride, but we are so thankful for an explanation and a plan. Thank you for all your love and prayers. Your kind words and just knowing you are praying helps us tremendously. To all who reached out to help and offer of yourselves, we are so incredibly humbled. This life is not what we planned, but God is faithful, never leaving us on our own, but always walking alongside us every step of the way, through the trials and joys. Thank you Lord loving us so fully…so perfectly. ❤️
Yesterday, after Poppy’s quiet night in the ICU the EEG preliminary results told us that there were no active seizures occurring during the EEG. She was really starting to perk up, and I was really thinking they would send us home, as they had exhausted every test that could be done in MT and she looked so good.
However, I should know better, I should know Poppy better than to ‘plan’ on going home. It turned out that one of her lab results became concerning enough for her pediatrician to feel it was in her best interest to be transported to Seattle Children’s.
This lab test is a test that the Transplant team monitors every month, as it can be a decent indicator for heart failure. It’s called a BNP. There are two different ways to run this lab. There is an ‘actual’ BNP (which is how Seattle Children’s runs it), or a proBNP (which is how MT runs it). When we are in Seattle for labs, her ‘actual’ BNP is always phenomenal, ranging from 50-80-really good for someone with a heart transplant. When we do labs in Bozeman, her proBNP is usually in the 300s. Still good, but the problem is, you can’t compare an actual BNP to a proBNP, as they are run differently. You can obviously compare an actual to actual and pro to pro.
So…all that being said. Poppy’s typical proBNP in Bozeman on a monthly basis is in the 300s and that is acceptable. The other morning in the ER in Bozeman, it was 900. Yesterday morning in the ICU in Bozeman it was 2064!! This was alarming to everyone. Dr. Daniels decided it was best for her to be transported to Seattle to be throughly checked out by the specialty teams who know her best.
As shocked as I was to hear about this lab result, they had prepared us for this possibility of being shipped out the day we took her to the ER. Poppy has never had a life flight before. Before she was even born, all the doctors told us to just accept that it would happen at some point, it’s just the way of how things go when you’ve got a complex medical history and you live in a state with no children’s hospital. We’ve been incredibly blessed and fortunate to have avoided one this far. And the fact that she is stable made it a whole lot less stressful than it could have been.
We arrived Seattle around 7:00pm Seattle time. The life flight guys were great. What a blessing they are. Poppy then proceeded to get poked and prodded again. Sooo hard to watch 😞 after such a long day, but I mean, that’s why we are here, right? – to figure out what happened the other morning and be sure it isn’t heart related somehow.
She got fresh labs, nasal swab (she’s got a cold), and EKG. She will get an echo today to look at her heart. We just have to be patient and see what they say at rounds.
Can I just say my sweet girl is such a trooper. I mean, she is so brave and so strong. She obviously gets upset when she has to get poked, but she’s smiling 5 minutes later. She is totally covered in grace and it’s obvious. Life is not easy for her. There are so many times I find myself pleading…please Lord, can she just have one thing that comes easy to her? Please? Just one thing? 😩 It’s so easy for me to watch how she struggles and just hurt for her. But when I take a step back and look at what does come easy to her, she smiles. There was a long time when she was very sick with shunt revision after shunt revision where she had no expression. But now her smile comes so easy and so often for her. It is truly a gift- the thing that comes easy to her, is something we take for granted and definitely don’t do enough of in our world. Her smile is pure joy, in the midst of the challenges in her life, she has pure honest joy. She works so hard to do everything and she’s joyous. God’s grace overwhelms her. How convicting…how inspiring to be her momma. Humbling.
And Crosby…he is amazing. He is such a sweet servant hearted boy. He is such a sweetheart and a giver. He is exceptional when it comes to constantly having his routine shift when these things happen. But he’s social and happy to be a helper, he is such a blessing. God continues to teach me so much through my kids. It’s so cool ❤️ It’s truly an honor to be their momma.
Brad and Crosby are on their way out today, and we can’t wait to see them!! When you’ve had the luxury of not being admitted for a long stretch, it really hits hard when stuff like this happens. We miss our boys 😞 Praying for safe travels. Praying for answers and explanations. Thank you all so much for keeping us in your prayers ❤️ The outpouring of love and prayers truly means so much to us. ❤️
So our day today was really not something we saw coming. Poppy was up for parts of last night vomiting. She’d had about 10 days of not vomiting at night, so this kind of caught us off guard, but was not alarming. But it was different…usually when she vomits, she coughs and that cough usually gives us time to jump out of bed, run into her room, sit her up and catch her vomit. Last night, we heard a cry and found her face covered in vomit. We did a midnight bath and didn’t think too much of it, because she’s done it before, even though it was weird she didn’t warn us. She proceeded to heave and retch in her sleep throughout the night. At 3:30 she had finally had enough volume for me to feel ok about turning her feeds off, hoping we could all get some rest before getting up again at 5:30 to give her meds.
At 5:30 I show up to give her meds. I just knew…something was wrong. She’s laying there, eyes wide open, breathing super shallow and fast….she’s unresponsive…a rag doll. I call Brad in to see what he thinks. In the meantime I take her vitals and check her O2. O2 90% heart rate was elevated around 145- I immediately started thinking…’oh no, I wonder if she aspirated earlier in the night, and now she’s drowning on us.’ I remember reading those tragic articles of the kids who take on too much water at swimming lessons, are fine when they go to bed, and end up drowning in their sleep. I immediately called her peds office and we prepared to race to Bozeman ER. I checked her head circumference trying to see if it was growing ( shunt failure?), her pupils were reactive but we could not get her to track or hold her head up. I don’t think we’ve ever been so scared of losing her….right before our eyes, on our watch….of all the things she’s been through, to lose her to something so mysterious and out of the blue…it was awful…we were hysterical. I cry my fair share, but since she was born, through all of it, I can count on one hand the number of times I couldn’t hold my tears back in front of people…today was one of them. We seriously thought she was going to die on us.
Just as we got into Bozeman, at about 6:15, she started breaking through and moving her limbs a little and finally crying. It was like she had been stuck 😞 She was finally able to break through… oh it’s so hard to watch 😞 we’ve never felt so helpless… Praise God she broke through!!
Her teams in Seattle were notified and consulted. She got a slew of tests: blood work, head CT, chest and shunt series x-Ray, and finally an EEG. We were sure it was a shunt failure, the way she’d been retching and vomiting in her sleep, the way her eyes got stuck, just everything, but neurosurgery met and really liked how her head CT looked. Blessed news. Thank you Jesus!! Amazing news, on many fronts. But then what happened?
Poppy’s neurologist was consulted, and so far the consensus is that she had a seizure. At least a 45 minute long one at that. They got the EEG and so far, at least at the time of the EEG, she was having no active seizures. Again, amazing news….but then what happened? What do we do now? I have many questions for him. He’s out at Seattle Children’s, but I’m hoping once he is able to read the EEG himself, we can talk and get some answers. We would love prayer for that. At times it can be challenging to talk to neurologists. You really have to ask the exact right question to get any kind of detailed answer. It’s no ones fault, it just seems to be a neurologist thing. If you could describe in one word. Vague. Pray that I ask my questions in a way that yields good answers. Thank you. We so appreciate your prayers and concern.
So here is the current: It still could have likely been a seizure, and that’s what we’re going with until something else tells us otherwise. For now, we are spending the night in the ICU for monitoring. She’s also requiring a small amount of oxygen. She is on full cardiac monitors, which is always a comfort to me. Can’t help it. Now just pray I don’t stay up all night watching the monitors lol. She does seem better. Besides sleeping the day away (which I hear is very common after a huge seizure), we actually got some smiles this evening. Sooo encouraging!!! Thank you Lord, we sure needed that.
Praying that tomorrow brings some kind of explanation and game plan, should this ever happen again. Lord you have this. Lord I pray for peace. Lord I pray for my babies 😞 May they know and feel how much they are loved, especially on hard days such as these. ❤️
‘Be joyful in hope, patient in affliction, faithful in prayer.’ Romans 12:12