The following is an account of the life of our beautiful daughter, Kamri Blaire Thomas. As you will read, Kamri was born on December 28, 2016 and was welcomed into Jesus’ arms on January 20, 2017. All throughout our pregnancy, Kamri was perfectly healthy and passed every test and exam with flying colors. She was born via C-Section and upon her birth, she was not able to breathe on her own. All that anyone knew was that for some reason, her major organs were not functioning and she was in immediate critical condition.
Unbeknownst to anyone (us or our doctors), she had a rare abnormality in the development of her lungs. We now know that Kamri was 1 in 10 cases ever reported in the world with what is called Congenital Acinar Dysplasia. Simply put, this means underdevelopment of the lungs. The medical experts believe that her lungs stopped developing somewhere between 8 and 16 weeks of gestation. After a month of fighting for her life and looking for answers, it was determined that her lungs were too small to ever be able to breathe on their own.
Kamri is the most beautiful little girl with dark brown hair, dark eyes, and a tiny 6.5 ish pound body. We love her with everything we are and could not be more proud of her life, her fight, and her witness to thousands of the deep love of Jesus Christ. Below, you will find the day-by-day, sometimes hour-by-hour updates we posted of her story, as they were happening in real time. To all of you who have walked with us at any point in this journey, thank you.
We love you, Kam Fam… and so does our sweet girl.
KAMRI'S LIFE & MEDICAL JOURNEY
our day-by-day, "real time" record of her fight to live
12/29/16, 5:00pm: Mitch and I are so blessed to say that our beautiful daughter, Kamri Blaire Thomas, was born on Wednesday, December 28, 2016 at 4:41pm. We love her more than she’ll ever know. Since her birth, Kamri has been in critical condition and not able to breathe or function on her own. Besides small signs here and there, things are not looking good. She needs a miracle. Your prayers have been overwhelmingly powerful so far and we can only ask that you continue to boldly ask God to heal her in the name of Jesus Christ. Thank you for all of the ways you are loving and supporting us through the most difficult thing we’ve ever faced. We love you all and continue to trust that God has a plan for Kamri and our family.
12/29/16, 6:35pm: Friends and family, THANK YOU for all of the love and support you have poured over us. Kamri’s condition will be ever-changing, so we will do our best to update with specifics here. Mitch and I were just able to see her, touch, and kiss her. We also had a quick meeting with her doctors. Earlier today, Kamri was not doing any kind of moving on her own. This afternoon, she began to have reflexes to touch, light, and blinked her eyes on her own a few times. The biggest concern and prayer request on the table is NO BRAIN BLEEDS. She is currently on a system that is keeping her alive and should a hemorrhage (brain bleed) occur, they’d have to take her off. Every day she makes it without a bleed (her scan came back clear today) is a step closer to her being able to survive with less machine assistance. So that is our prayer tonight- another day with no bleeding. Thank you for your prayers… our girl is such a fighter and keeps proving to the doctors that she wants to be here.
12/30/16, 3:35pm: At this morning’s meeting with the doctors, we learned that Kamri is continuing to make slow progress. Today is better than yesterday. Her heart is strengthening and she moves more frequently. Last night, as Mitch and I said goodnight to her, she opened her eyes really wide and looked right into ours. The current prayer request is for today’s ultrasound (happening today, between 4-5pm), which will cover her brain and tell us if there is any bleeding happening. Again, we are asking God for NO BRAIN BLEEDS so Kamri can remain attach to the machine that is keeping her alive. We will post another update as soon as we possibly can and we are working on creating a page (this one) on the blog that will have all of the updates to date (plus, hopefully a picture or two of our beautiful girl!). Your prayers are powerful and we cannot express how much they have been holding us up through this process and making a tangible difference in her healing.
12/30/16, 11:15pm:
We know that many of you are waiting to hear about the results of today’s EEG testing on Kamri’s brain. After talking to the doctors, the news is not positive. The test picked up seizure activity in Kamri’s brain today. She is currently on medication to put a stop to them. We are learning that as her brain activity begins to pick up, we will also start seeing the extent of the damage that it has experienced (so far, no brain bleeding). The doctors were expecting this at some point, but the news comes as a big blow to us. Other than this, Kamri had a fairly uneventful day, which is exactly what the machines she is hooked up to are designed to provide for her so her heart and lungs can continue to strengthen. Mitch and I hit a major low point mentally and emotionally tonight. We were feeling extremely defeated and immensely sad at the prospects for our little girl. This experience is something we do not wish on anyone. HOWEVER, you should also know that God is hard at work in our hearts too. For some reason, as devastated as we felt, God pulled us out of that low point and we are very much at peace as we head for sleep tonight. We have a very strong sense that God has a plan and the bottom line is that we just don’t know it yet. As terrifying as this is, God is so so good. We are choosing to trust that He knows exactly what He’s doing with Kamri and all He wants from us is to follow His lead. So that’s what we’re doing. Prayers-wise, tonight we’re asking that God would continue to protect us mentally and emotionally. Also, that Kamri’s seizures stop and she has a completely uneventful day of healing tomorrow. Thank you in advance for praying protection over our family.
12/31/16, 2:40pm
We are thrilled to be able to deliver some happy news today and would like to encourage you… God answers specific prayers and all of you who have been so diligent in praying for Kamri… He is hearing you and you ARE making a difference in her recovery process.
This morning, Mitch and I spoke with the doctors and they are encouraged because Kamri’s EEG (brain scan) has improved. Before, the brain activity was intermittent and kept starting and stopping. Now it is consistent and stronger than yesterday. For this reason, we will start seeing the brain give us signs of the extent of the damage, which is the reason for the seizures last night. The doctors are happy to report that all of her seizures were short- under 2 minutes each and she responded beautifully to the medicine that was supposed to stop them. They have since stopped. In the grand scheme, the doctors are not super concerned with the seizures because they are normal for infants and her body is recovering very successfully from them. We were also told that swelling of the brain and lack of oxygen is what we want to watch out for, maybe even more than brain bleeding right now.
In other news, her movements have increased and are happening voluntarily and responsively- both good things. She opens her eyes more, squeezes her hands, and for the first time, she has responded with mouth movements! No sucking yet, but similar movements that they were not seeing yesterday, but are seeing today. She has a long way to go, but a lot of victories happened last night. In the doctor’s exact words, “THIS is hope, she is doing great”.
Today’s specific prayers are for the following:
-continued consistent EEG scans that gradually get stronger
– continued increase in movements
-no swelling or lack of oxygen to brain
Whew! Big update, but overall a very encouraging morning.
12/31/16, 9:10pm
Today was a great day! Completely uneventful, which is the best possible day for little Kam. For those of you asking about the “machine” she is on, it’s called ECMO and is designed to remove her blood, add oxygen to it, and return it to her body. Right now, it is acting as both her heart and her lungs so that her own can rest and recover for when she comes off ECMO and needs to be able to breath and pump blood on her own again.
Kamri had another ultrasound on her brain tonight around 8:30pm. We will hear the results of that tomorrow. The other major upcoming procedure will occur at 3:00am tomorrow morning and is something called “rewarming”. Up until this point, Kamri has been attached to a cooling blanket that is designed to calm and cool down her body. Tomorrow, she gets to start the rewarming process, which should result in an increase in body movements and a higher heart rate. We are so excited to see how her little body responds to finally getting to be warm!
Tonight’s specific prayer requests are:
-No brain bleeds, inflammation or lack of oxygen to her brain on tonight’s ultrasound
-A positive reaction to rewarming tomorrow!
As this year comes to a close, we want to thank every single one of you that has prayed for and passed along our baby’s story. We are humbled and overwhelmed with gratitude when we think about how many people have shown so much love to our little girl. Happy New Year to you and your families!
1/1/17, 12:00pm
This morning at 3:00am, Kamri began the rewarming process and was toasty warm at 36.5 C when Mitch and I went to say good morning today! Her heart rate has increased from around 90 to about 125 (thanks to her body temperature increasing). Today, Kamri will have an Echo procedure to monitor the strength of her heart beat. In neurology news, Kamri’s EEG scans are even stronger than yesterday, which was one of our specific prayer requests! The doctor even said multiple times that our neurologist kept saying that her results were better than they expected and they are “surprised at her status”. This is amazing, as Mitch’s specific prayer request yesterday was that God would surprise the doctors with His ability to heal Kamri. We have also seen an increase in movements!
Yesterday, we mentioned that Kamri would be having an ultrasound on her head that would indicate if she had any bleeding, inflammation, or lack of oxygen. The test came back the same as before- so no bleeding, no inflammation, and no lack of oxygen that we can tell! Her urine output has increased from yesterday… another victory. From the start, Kamri has had 4 bubbles of air trapped around her lungs. She has chest tubes to suction out that air and as of today, all 4 air bubbles have been extracted and completely healed! She no longer needs her chest tubes, but they will not be taken out yet to avoid any internal or external bleeding.
Finally, Kamri’s pulse press from her blood pressure cuff has increased from 9 (yesterday) to 25. However, the strength of her pulse itself is something the doctors would like to see increase, as it is not yet detectable. The other concern on the table is that there are a few small blood clots in her ECMO machine that have grown in size a bit. She is currently getting medicine to minimize and hopefully remove these. Should they grow too big, her ECMO tubes would have to be changed out, which is not ideal and would set us back timing-wise.
Today’s prayer requests are:
-A positive Echo test today with a strong heart beat
-Increase in pulse strength
-No more clot development in ECMO circuit
-Continued increase in urine output
-Continued increase in movements
-No more seizures
How encouraging that God answered every single specific prayer request from yesterday! He is HEARING your prayers and you are making a huge difference in her day to day progress. God is so good and we are trusting Him with all aspects of this process.
1/2/17, 11:15am
Kamri’s recovery process has so many elements to it, as she has damage to virtually every major organ in her body. For ease of updates, we decided to break them into each major aspect of her body so we can give specific reports on each element and how things are developing. We’re also going to start including a brief update about how Mitch and I are doing day to day, as many of you have been asking about our own personal journey through this as well. At the end of every update, you’ll also find a list of specific prayer requests for each day.
BRAIN: Kamri had one small seizure last night that did not last long and did not do any damage. She will remain on the medicine that protects her from them. Apart from the small seizure, Kamri’s EEG (brain scan) remains stable and we continue to see her respond and react to light, touch, and sound. Her movements have decreased slightly from yesterday, so we’ll be looking for more movements throughout the day today. The doctors would also like to see her periods of brain “rest” become a little bit shorter. She will have another head ultrasound tomorrow.
HEART: Kamri’s Echo exam yesterday showed us that the left chamber of her heart (which pumps blood to the majority of the body) is functioning okay and maybe even a little bit better than they anticipated. The right chamber (which pumps blood to the lungs) is having to work extra hard because her lungs are in such bad shape and are not open.
LUNGS: Her lungs are completely collapsed and closed, making it much harder for the right side of her heart to function. A lot of this is due to the meconium (baby’s first poop) that she ingested during delivery and has damaged her lungs. We will pray boldly that God eventually heals and OPENS her lungs. On a positive note, the doctors said that there was a little bit of air in her lungs, which is a good thing. We’ll be looking for that air to INCREASE.
OTHER: This morning, there was a blood clot found in her ECMO machine (what is currently keeping her alive) that necessitated the tubes to be clamped, the clotted spot to be cut out, and the tubes fused back together. Kamri tolerated being off the machine for the less than a minute it took to remove the clot and her heart functioned enough, but did indicate that she is definitely not ready to be fully off ECMO yet, which we already knew. What a champ for hanging in there, though, Kam!
Kamri is also being checked today for any infections in her system and will be put on a broader antibiotics line up to fight off any potentials. On a happy note, Kamri had a full diaper this morning, answering yesterday’s prayer of increased urine output!
MITCH & LESLIE: Today we are going to be heading home to re-set and repack for the week. It will be the first time we are coming home since leaving for the delivery. Needless to say, this is not how we pictured the very first time coming home to be like. We never thought we’d be coming back without our baby and that is going to be hard, so we’ll be leaning heavily on God, each other, and our families all day today.
Today’s specific prayer requests are:
-NO INFECTIONS from the cultures
-No more ECMO blood clots
-Periods of brain rest to become shorter
-Increase of air in lungs
-Eventual healing in lungs from meconium
-Peace and strength as we come back to our house for he first time
1/2/16, 10:30pm
Mitch and I found out tonight that Kamri had a few more small seizures later this afternoon. Again, she is on medication that is protecting her from them and they didn’t seem to do her any damage. As the doctors say, while the seizures show us some brain activity, eventually we’ll need to determine if her brain activity is the right kind of activity. We know that this is common for situations like Kamri’s, but it is still scary for us. Mitch and I could also use your prayers tonight… both of us are feeling very angry. Angry that our little baby is the one that has to bear such a burden. We could use your prayers for peace, strength and confidence. In happier news, yesterday we got to put SOCKS on Kamri, thanks to the rewarming process! She is now fully decked out in pink stripes to go along with her bow. We love this girl!
Tonight’s prayer requests:
-A complete STOP to Kamri’s seizures
-Peace for Mitch and Leslie
We’ll also be working to get some more pictures up on the blog tomorrow!
1/3/17, 12:30pm
First and foremost, we’d like to thank you. Thank you for weathering through this storm with us. Mitch and I have been blown away by the constant stream of prayers that have been covering our family and our daughter. Please know that we are relying heavily on them. God is so faithful and so good and has been using YOU to help carry us through this. You are presenting requests to God on behalf of Kamri and He is listening and answering. Thank you to each church that prayed for us on Sunday, thank you to each person who knows us and is sharing our story, thank you to each person who had never met us and is choosing to love and pray for Kamri. We are honored and humbled to be so supported by each of you. Kamri is a FIGHTER, as I think you’ll see in today’s update… thank you for fighting alongside of her.
BRAIN: Kamri had another dose of medicine (called phenobarbital) to combat those seizures at 4:30pm yesterday. She had one small seizure right after it was administered that was very short and self resolved (which, if she’s going to have any, that would be the best kind to have). Since then, she has not had ANY. If you remember, our main prayer request last night was NO SEIZURES, so if you thought your prayers were not heard by God… please, think again. 🙂 Her head ultrasound from yesterday came back normal- no bleeding, lack of oxygen, or inflammation that they can detect. Praise God!
HEART: You may remember the Echo exam we talked about in a previous update, where we explained the left and right heart chambers. What we did not know at the time was the comparison in test results between her first Echo and the recent one. In her first test, her heart was VERY weak and barely pumping at all. This Echo showed definite improvements and more pumping in both sides, especially that left side. Such good news of progress! Her blood pressure was also on the low side before, so to help the heart with pumping and to raise the blood pressure, she was given Dopamine. However, her blood pressure has increased and is now “generous” enough (doctor’s words) that she does not need to be on the Dopamine right now. Way to go, Kam!
OTHER: Kamri’s urine output will continue to be watched and we will continue to look for increases each day. Also, we heard the other day officially how long our girl is! Kamri clocks in at 19 3/4 inches.
Today’s specific prayer requests are:
-NO MORE SEIZURES! This is the current priority on the table for the doctors. Keep praying boldly for this, friends!
Also, an invitation from one of our prayer warriors out there… there is a “Pray for Baby Kam” event happening tonight at 8pm… wherever you happen to be, if you’d like to join along. Again, we are overwhelmed with gratitude at the dedication you all have shown our little girl. You can find more info about it here: https://www.facebook.com/alleighriggs/posts/10207110932006606
1/3/17, 7:30pm
For all of you preparing to cover our baby in prayer tonight, we are praying for you specifically as you FIGHT for her in the name of Jesus Christ. We truly believe that prayer changes the world and is life- changing for our daughter.
Tonight’s specific prayer requests are:
-PRAISE for all of the miracles and goodness God has already blessed Kamri with
-That her brain would be SEIZURE FREE and that God would remove that obstacle from her recovery.
-A miraculous opening and filling of her lungs with air.
-Continued strengthening of her heart
-A bold prayer for complete healing of her brain
For more info about the team of prayer warriors that are gathering across the world from 8-9pm tonight, click here: https://www.facebook.com/alleighriggs/posts/10207110932006606
Just a little insight into Mitch, Kamri, and my nightly routine… we always read a book, sing our song (“You Are My Sunshine”), and say prayers before kissing her goodnight. Tonight, you get to join us in tucking her in and putting her to bed. The KamFam is growing and we are so thankful for each and every member.
1/4/17, 4:00pm: Update coming soon, but we have an urgent call to prayer right now. Kamri’s ECMO tubes need to be switched out in order for the next step of treatment to happen. We just received this news and they will be doing this within the hour. The specific prayer is that Kamri will be able to maintain her vitals long enough for the switch to happen. Thank you for your prayers.
6:00pm: Everything went well… thank you for praying! She was off ECMO for 34 seconds so they could completely change the circuit. This process was a huge step in buying her more time for her lungs to open. Very important procedure. “She is in a good place right now”… words from the doctor. PRAISE GOD! Full update (and an exciting picture!) for the day coming soon…
1/4/16, 7:30pm
We hope that last night’s time of prayer proved to be as uplifting and meaningful for you as it was for us. Please keep those prayers coming… Mitch and I are relying so heavily on the knowledge that when we don’t feel strong enough to continue to speak the words on behalf of Kamri, so many others are right alongside us to carry the burden. Thank you. Today’s update has both good and bad to it and you can find today’s specific prayer requests at the end of the post.
BRAIN: We heard today, that there was a negative change in yesterday’s ultrasound in an area of the brain called the Thalamus. This part of the brain is somewhat of a “relay station” and manages and processes information before it reaches the Cortex. Among other things, the Thalamus controls our alertness and wakefulness. As Kamri’s brain activity continues, she will start to indicate to us the extent of the damage that her brain sustained. This is the beginning of those indications. Eventually, an MRI will help to tell us the extent of the damage we are working with. This information is very hard for us to hear, but we believe in a big God who has Kamri in His hands. We know He has the capabilities to fully heal Kamri and we will continue to ask boldly for this. The MRI cannot happen until Kamri is off ECMO (more details about what needs to align for that to happen below).
In better news, God answered two very specific prayers we’ve had over the last couple of days: no brain bleeding and no seizures. As of today, Kamri is almost 48 hours SEIZURE FREE (remember that specific prayer we lifted last night?!) and because of this, she was able to be taken off the video EEG monitor! For the first time, we were able to see our baby without the wires and her hat on and she is BEAUTIFUL with the most incredible head of hair!
LUNGS: This is the next big step for Kamri… we really need her lungs to open. Once they open, the heart is expected to improve even more. At that point, we can begin the conversation of a timeframe for transitioning her off ECMO. There is also a pocket of air that has formed again between her lungs and chest wall that needs to be sucked out with a chest tube so it can seal itself back up. So the order of things that need to happen is: air pocket healed, lungs open, right side of heart improved, transition off ECMO, and finally, the MRI. On a positive note, Kamri’s urine output keeps increasing and the doctor said that this can often be a precursor to the lungs opening. We are praying for exactly that to happen! Otherwise, we’ll start talking about extra assistance we can give her lungs to help them open.
HEART: Again, the left side of Kamri’s heart is functioning better than doctors expected at this point, something we’re thankful for. The right side hinges on her lungs healing.
MITCH &LESLIE: We continue to take this one day at a time. It is not easy. There are good moments (the time of prayer last night) and hard ones (the urgent ECMO process from today). It is so encouraging, though, to think that God has answered nearly every single specific prayer request that has been lifted so far. So we will continue to trust Him.
Today’s specific prayer requests are:
-That the pocket of air between her lungs and chest wall would seal itself
-Opening of her lungs on their own
-Increase in productivity of the right side of her heart
1/5/17, 11:00am
Little victories are big victories when you’re only 6.5 lbs. 🙂 Today, we certainly have things to celebrate, as well as a few things to bring before the Lord in prayer.
BRAIN: This morning, Mitch and I arrived to find that Kam’s video EEG set-up was back on (it’s pretty easy to tell right away because of the hat that she wears to cover the wires attached to her head). Apparently, the team was noticing some abnormal movements last night and wanted to take precaution, just in case they were more seizures. While we are unsure if that specific incident was or was not a seizure (the EEG was reconnected after it had occurred), she has not had any seizures so far since it’s been up and running. It can be very hard, even for the doctors, to tell which movements are seizures and which are just exaggerated muscle movements, so the EEG is just a precaution and we are thankful that there is such advanced technology that can help with detecting them… even if it means her little head of hair is back in “hiding” for awhile.
ECMO: Yesterday, we put out an urgent call for prayer, as we heard via a phone call that the team had made a quick decision to completely change out the circuit. As time goes on, the ECMO system is susceptible to becoming less effective for the baby due to a number of variables. Some of the blood and platelets that would help with her recovery were no longer getting to Kamri, so the doctors wanted to give the circuit a “refresh” of sorts. In order to change everything out, she needed to be able to tolerate being off ECMO for at least a little bit. The procedure took 34 seconds and she definitely tolerated it, but also showed signs that she’s clearly not ready to be off totally (which we already knew). Thank you for your prayers- the entire procedure went beautifully and has actually bought Kamri more time for her lungs to continue to heal.
LUNGS: As we said yesterday, there are a series of steps that need to happen in order for Kam to get to the point of being ready to come off ECMO. The air pockets that had re-opened needed to heal, her lungs need to open, and her heart needs to have the chance to function fully and properly. Since yesterday, that air pocket has healed and the chest tubes are back to being on “water seal” (aka. not needed for suctioning air anymore). Prayer request answered…go God! The next step are those lungs OPENING. Originally, there was a test scheduled for today (it’s called the Bronch) that would involve a camera and suction system being sent into her lungs to see if there is anything (mucus, secretion, etc.) that can be sucked out to allow for easier opening of the lungs. HOWEVER, because we now have more time due to the circuit change, the team decided that right now, the Bronch test is not yet necessary. They want to give Kamri a little bit more time to see if she can heal and open her lungs on her own without needing assistance. If, in a few more days she needs some help, the Bronch will come back into play. We have so much confidence that God can and will open her lungs soon!
HEART: We cannot wait to see what Kamri’s heart will do once everything else is in line (aka. lungs have opened). With the circuit change, the doctors noticed that her heart was doing just fine with a lower assistance level, showing that it didn’t need as much “help” as they had been giving it before. The only reason that they did end up increasing the assistant after awhile was because they noticed that her oxygenation levels were a little low. At 4 pm today, they will monitor again to see if she can handle lower assistance for a more extended period of time.
OTHER: Kamri has been started on a small dose of medicine to help her urine output increase, which will help with the swelling in her body that often comes with being on ECMO…another prayer request for today!
Today’s specific prayer requests are:
-That Kamri’s LUNGS would fully OPEN on their own!
-No seizures
-Increased urine output
1/6/17, 11:30am
Little K had a good night last night and is having a good day so far today… something that Mommy and Daddy really appreciate. Specific prayer requests for the day are at the end of this post!
BRAIN: Kamri has now gone another full day and night without any seizures (PRAISE GOD for answered prayer!!!). The doctors feel comfortable and confident that they now know her movements enough to be able to take her back off the video EEG, hopefully for good. This means that little Miss Head-O-Hair should be rejoining us this afternoon! She also had another head ultrasound early this morning that came back the same as the last- still that damage to the Thalamus, but on the positive side… no bleeds, inflammation, or lack of oxygen that would put her in danger of needing to come off ECMO. In terms of the neurology team’s involvement from here on out, they will be taking more of a back seat until we work out things with her lungs, heart, and transitioning off ECMO.
LUNGS: Today begins some of the processes to help Kamri’s lungs begin to open. Yesterday, she was put on a medication (called “Lasix”) to help her urine output increase. She has been responding beautifully to the meds and has had full diapers ever since. This is important because the urination helps to flush out as much of that fluid that is in her lungs as possible, making it easier to open up. Sometimes, this medication can result in low blood pressure, but hers is just fine, so no meds needed to regulate that! The next step for her lungs will be to give her a dose of Surfactin, something our bodies produce naturally, but Kamri’s levels are lower due to the incident at birth. From what I understand, Surfactin acts as a lubricant of sorts and helps our lungs to function properly. They are going to give Kamri a supplement of this to see if they can break up anything that might need to be sucked out to allow for easier opening of her lungs. The team decided to do this process before the Bronch (from yesterday’s update)… a smaller step to see if we can move things along more naturally. The best way I can describe it is if the Bronch is the “plumber” in this story, the Surfactin is the “Drain-O”… the step you take before you call the plumber. This process will start today, so we’ll see how it goes. We’re praying that this less invasive technique works to get those lungs OPEN!
MITCH & LESLIE: Mitch and I are doing well… we’ve had a calmer last two days, something we’re thankful for. The less exciting days are the healthier ones for Kam. We definitely have hiccups of sadness here and there. It can be tough to sit around a children’s hospital all day… as you can imagine, there are a lot of, well, KIDS and all we want is to be able to hold ours. That’s part of the process, though, and we have every intention of taking Kamri home with us someday. That thought gets us through those tough moments.
Isaiah 40:31 says “but those who hope in the Lord will renew their strength”… we are finding that having HOPE gives us new strength for everyday of this journey. Reading and hearing all of your hopeful encouragement has helped us more than you know.
Today’s specific prayer requests are:
-Continued increase in urine output
-That the Surfactin would do its job in little Kamri
-OPEN LUNGS today!!!
1/6/17, 7:00pm
As we mentioned in the previous update today, Kamri was given a dose of Surfactin in the hopes that it would break up anything in her lungs and assist them in opening. Earlier this evening, Kamri had an X-Ray done to see if any progress was made. While there was no night and day difference (ex. Lungs totally open), the doctors said that’s not what they were expecting anyway and they are happy with how the X-Ray turned out. Her lungs are looking clearer than before and these are the first steps to them hopefully opening soon! Also, it was noted that before, with each breath, her chest wall was not moving (up and down like when we breathe), but it seems to be now. Praise God! At any point in time, her lungs could open and we are so praying that it happens soon… in our book, TOMORROW seems like a good a day as any!
We were also encouraged to hear that she is now being given a lower dose of assistance from ECMO because her body seems to be able to pick up more of the slack on its own. Go, Kamri, go! Tonight we are praying specifically that God would open her lungs fully and we can consider that obstacle CONQUERED and in the past. Thank you, Lord, for such good progress today!
1/7/17, 4:30pm
Kamri’s lungs are OPENING!!! Mitch and I just got off the phone with the doctors and were told that her 3:00pm X-Ray showed definite improvement from the last one. Her lungs are starting to open, as the test showed some black (the color of AIR in an X-Ray as opposed to white, the color of fluid) in her results. From what we hear, the nurses are having lots of fun with her and she has accumulated another bow for her hair. 🙂 And to top it off, little Miss K pooped in her diaper!
We are praising God for His miraculous healing today; He has been so faithful to us. We are also praying for continued progress… that those little lungs would be FULLY open soon! Thank you so much for your diligence in praying… we cannot thank you enough.
1/8/17, 8:30pm
Today was a hard day. We heard this morning that Kamri’s scans actually looked a little worse than they did yesterday, lungs-wise. This sounds scarier than maybe it really is in doctor world, but to us it felt like a step in the wrong direction. After talking to a few of the nurses and doctors, none of them seem concerned at all and they all said that this can be a slow process. Kamri will have another X-Ray tomorrow at 4am and if nothing has progressed, they might try her on a different type of ventilator.
On a personal note, Mitch and I are taking this one day at a time… this day being tougher than others. I find myself asking God in these moments for just a glimmer of peace, of hope. He always seems to know when our spirits need to be lifted. Tonight, we had some special time with Kamri, who was wide awake and alert. I even got to comb her hair! Needless to say, she ended the night sporting a Mohawk, topped with her pink bow.
Kamri has this way of staring right into your eyes. Tonight, she cried real tears during her dressing change and although we want nothing more than to be able to pick her up and wipe them away, we are thankful that our daughter recognizes what we look like, how we sound, and can feel when Mommy and Daddy are right there with her. She fell asleep and we sang and said prayers before leaving for the night. God can answer even the smallest prayers for glimpses of hope.
Just as God knows when we’re vulnerable, we are learning that Satan knows too. We have to be careful to watch out for him because he has a way of taking our weakest moments and trying to twist our thoughts away from the goodness and faithfulness of God. After all, the Bible says that the devil “comes only to steal and kill and destroy” (John 10:10). If we’re not careful, Satan will steal our joy, kill our confidence in Christ, and destroy our peace. It is in these tough moments where we have been crying out to God, asking Him to stand between us and that kind of manipulation. As we have decided… there is NO ROOM for that here.
We will continue to have good and bad days. We will continue to love and fight for and pray over our daughter. We will continue to trust that the living God has a beautiful plan for Kamri and our family. Thank you, Jesus, for your fierce protection over us. And thank you for loving our little girl more than we ever can.
Tonight’s specific prayer requests are:
-That God would protect our minds and hearts during the harder days
-That Kamri’s lungs would fully open
-That through all of this, people would come to know the deep, deep love of God
1/9/17, 10:00am
Good morning, friends. We have another urgent call to prayer this morning. Kamri’s 4am X-Ray today showed no improvement for her lungs… if anything, it might have looked even worse. The doctors have decided to move her to another plan- instead of waiting for the Surfactant to help her lungs open naturally, they are going to put her on a different ventilator to try and open them that way. She is currently being put on an oscillator and in another couple of hours, she will have another X-Ray to see if there is any progress.
We believe in a big God, who is completely capable of opening Kamri’s lungs. Please pray that this new technique works for her and that in the next few hours, we see some progress. Thank you so much for brining our daughter before the Lord in prayer this morning!
9:00pm
Kamri has been on a low-level of the oscillator since early this morning in the hopes of pushing her lungs open. She had an X-ray at 4pm this afternoon and the results show that they are beginning to open! We are very happy to hear this, but they need to continue to open for her to eventually come off ECMO. She will stay on the oscillator overnight and another X-ray will happen early tomorrow morning to check on the progress. The doctors will also talk about increasing the level of ventilation from the oscillator tomorrow if necessary. For now, we do our best to rest and continue to cover Kamri in prayer. Please know that right now, Mitch and I are leaning very heavily on the army of support that God has surrounded us with… each of your prayers on behalf of our daughter mean so much to us.
Tonight’s specific prayer requests are:
-Fully opened lungs
-That Kamri will eventually be able to survive off ECMO
-A bold, confident prayer that God will FULLY heal Kamri’s brain, despite what any tests may indicate
1/10/17: 8:15am, URGENT Call to Prayer: The doctor just called us, saying that Kamri’s latest head ultrasound came in and they found what they’re calling an “extension”. They don’t know enough to be able to give us specifics, but at this point, they can’t rule out that it’s not a brain bleed. They will be calling within the hour with more information. If it is a brain bleed, she will need to come off ECMO and we will have to see what the plan is for that…
Honestly, we have no idea what is going on or what to expect. All we know is at this point, if this is a bleed, Kamri needs a miracle. If ever there was a time to pray, this is it.
Specific prayer requests:
-This is not a brain bleed
-If it is, by some miracle, Kamri will be able to survive off ECMO
9:40am
God is not done with Kamri yet. The extension from the test this morning was NOT a brain bleed. After further investigation into the results, the team believe me that what they are seeing is just an extension of some of the brain damage we are already aware of. But, praise be to God… it is NOT a brain bleed and Kamri has a green flag to continue on ECMO with no complications that we know of right now.
We also learned that Kamri’s X-ray from this morning came back and her lungs are even more open than last night’s. The team will be increasing her oscillator level today and will continue to monitor progress.
Mitch and I are completely overwhelmed by the mercy and grace of God. We are exhausted and humbled and so deeply grateful that we get another day with our daughter. He has a plan for her and we are consistently hearing Him say to us (even in the darkest moments) to “WAIT on me”.
Thank you to every single one of you that dropped to your knees and prayed as soon as you got the message this morning. We know that Kamri is a fighter, but we also know that we couldn’t do this without you fighting alongside of her. Thank you. 
More updates to come later today.
Today’s specific prayer requests are:
-PRAISE that Kamri has no brain bleeds!
-PRAISE that her lungs are continuing to open!
-Further opening of Kamri’s lungs
1/11/17, 7:00pm
Patience for God’s timing is so hard when your child’s life is what’s at stake. That’s what we’re finding to be the theme of the last couple of days… patience. Today’s update has positives and negatives… as always, our specific prayer requests are at the end of the update.
LUNGS: This is the big prayer request of the week… that Kamri’s lungs would fully open. As we’ve said before, her lungs need to open and both them and her heart need to be healthy and able to function on their own in order to start coming off ECMO, which is the number one priority right now. Kamri has had several X-Rays so far, each showing gradual improvements. This has been a very slow process. We are at the point where her lungs are not quite where they need to be, but there is still time and procedures left to try and get them there. While we are not under a strict time crunch yet, this week is definitely ideal for those lungs to open, while the current ECMO circuit is still in good shape. At this point, the RIGHT lung is further along than the LEFT. Kam has been on the oscillator for about a day now and they have been slowly turning up the frequency/pressure to try and get those lungs open. They are giving it one more night and if her 4am X-ray tomorrow morning does not show significant improvement, they will put her on a completely new ventilator tomorrow.
HEART: At 2:30pm today, Kamri had another Echo scan of her heart to make sure that anatomy-wise, all of the parts of the heart were looking normal (to rule out if that would have anything to do with her lungs having trouble opening) and to check in on the actual function of the heart again. The good news is that the doctors were able to see the necessary parts of the heart and they showed up normal in the test. In one of our previous updates, we mentioned that the LEFT chamber of her heart was doing ok and the RIGHT chamber of the heart was a little behind, mostly because of the issues with the lungs. In this Echo, the doctor said that the LEFT side is still functioning normally (hooray!) and the RIGHT side is still mildly diminished (which we knew), but better than before.
OTHER: Over the last 24 hours, the team was finding that Kamri was needing more support from the ECMO than previously. In order to rule out the chance of an infection being the reason for this, they have taken a number of cultures to be tested and have started her in antibiotics in order to fight off any potentials. We should know in 48 hours if any of the cultures come back positive and should that be the case, the team will narrow in on more specific antibiotics to stop the specific infection.
MITCH & LESLIE: Again, patience in all of this is so hard. All we want is to be able to be parents to our daughter in the ways we had always imagined, but that is not our reality right now. In other news, Leslie is currently fighting off a cold, which means that she is keeping her distance from the baby. Not being able to touch or kiss Kamri these last couple of days is torture, so we are praying that the cold goes away and we are both able to stay healthy throughout the remainder of our time in the hospital.
Whenever we start to get overwhelmed by this process, we always look at how far God has brought Kamri already. Below are three pictures- the night she was born, One Week old, and today (Two Weeks old). We know that God lives Kamri and that He has already done a miraculous work in her. We find rest in the hope and confidence that He WILL completely heal our girl!
Tonight’s specific prayer requests are:
-Kamri’s lungs would fully open soon and be healthy enough to function on their own
-No infections!
-Leslie’s cold would resolve and all visitors remain healthy
-Patience and trust that God is at work and will heal Kamri
1/12/17, 1:00pm
This morning has been really hard. It just feels that every time we take a step forward with Kamri’s lungs, we take two steps back.
LUNGS: This morning, Kamri’s X-ray showed that her lungs have worsened since the last one. The team is looking at a few different steps to take to see what might be keeping her lungs from opening. The first thing they’re doing is putting her back on the Lasix (the medicine that makes her pee) to see if more fluid needs to be drained. The second step are those antibiotics because if she has an infection, that could cause more fluid and inflammation. Kamri will also be getting an ultrasound on her chest to check if there is any fluid pooling. Finally, they are going to be bringing in the genetics team to take a look at her physically. There is a chance that Kamri’s lungs are just small in size, which could be the reason for her difficulty. If that is the case, she could have a harder time coming off ECMO at all. Kam will stay on the oscillator for now and her frequency/pressure has been reduced to what it was before while the doctors use this time to gather information.
MITCH & LESLIE: We are struggling today. Struggling to find hope amidst each negative update. This journey is nothing we asked for and nothing we would ever wish on anyone else. It is a very hard day to stay positive. We continue to trust God, but it’s harder than usual to do that today.
Tonight’s specific prayer requests are a lot like yesterday’s:
-Kamri’s lungs would fully open soon and be healthy enough to function on their own
-Kamri’s lung size would be healthy and not prohibit her from coming off ECMO
-No infections
-Leslie’s cold would resolve
-A glimmer of hope that we’ll be able to take Kamri home at the end of this
9:30pm
Tonight we prayed over Kamri and God has made it clear to us… we are being called to cover Kamri in prayer in the name of Jesus Christ. The God who created the world, split seas, raised people from the dead, and conquered death is the same God that LOVES Kamri.
The power of the living God is fighting for her and fighting for you… please, whatever your struggle is… know that you are LOVED so deeply by the King of the World. The song attached spoke such truth to us tonight. We cranked it up in the car and sang the lyrics as a promise to God in the darkest storm we’ve ever faced.
“Your strength is found at the end of my rope… Still through the tears and the questioning why… I will stand my ground, where hope can be found.”
So in the midst of a dark day, we are going to stand our ground in the hope of Christ. We are going to give Kamri over to God every chance we get… we will not stop hoping. We will not stop praying. Mitch and I have decided that we are going to STORM THE HEAVENS on behalf of Kamri and we’d love if you’d continue to join us in this. We will also be praying over all of you- that whatever season you find yourself in right now, the Lord would reveal Himself to you in a powerful way.
Father God, you are good and sovereign and we know you can heal Kamri. We turn her over to you. In the powerful name of Jesus Christ, breathe life into her lungs and make them whole. Carry her off ECMO. Blow us away with a miracle and give us the energy to tell the world that YOU healed our daughter. We love you. Amen.
LET’S GOOOOOO!
1/13/17, 1:00pm
Everyday is a new day and we are excited to see what the Lord has in store for Kamri today! This one’s a long one, so grab a snack and tuck in…
LUNGS: This morning, Kamri’s X-ray looked pretty much the same, if not a tiny bit better than yesterday. The chest ultrasound that she had yesterday showed no fluid pooling. The genetics test (also from yesterday) showed no abnormalities genetically. This basically means that Kamri’s condition is like lightening striking… a random occurrence and it’s not something we would ever need to expect of future pregnancies. The doctors believe that her lungs are still showing up as smaller in size in X-rays. Today’s plan has a few steps to it…
-Lasix will continue (the team is happy with the urine output since being back on Lasix)
-Kamri has been moved from the oscillator to a different ventilator system (called VDR) in an attempt to remove any secretion that may still be prohibiting the lungs
-Kam will be given a dose of a medicine this afternoon called Dexamethasone, which is a steroid to help reduce inflammation
-next X-ray is happening at 3pm today to see if any short term progress has been made since switching to VDR (we’ll have a better overall idea at tomorrow morning’s X-ray)
ECMO: Yesterday, we talked about how Kamri was needing a little bit more help from ECMO to get oxygen and expend Co2. Co2-wise, she’s in better shape today and not needing as much ECMO help. She’s been getting more help with O2 levels, but her numbers have gone up since yesterday… yesterday, her O2 levels were in the 50s, today they are in the 70s. The goal will be to wean her off the ECMO assistance once the lungs and heart are working together.
BRAIN: Kamri’s blood pressure was higher last night, so the team is trying to figure out why that may be. High blood pressure can often be a side effect of being on ECMO, so we’re hoping that’s all it is. They added to her sedation medicine (she’s currently on morphine)… a low dose of Versed, which helps with agitation and pain. Kamri also had and additional dosage of phenobarbital (seizure medicine) and is currently on the EEG (brain scan) machine for just a short amount of time… probably about an hour or so. The goal of this is to get a quick snapshot of her brain activity right now to compare it to her previous EEG scans so they can determine if last night’s activity was seizures or not.
OTHER: Kamri is now off antibiotics and no positive cultures have come back yet, regarding infections. Final test results will be in this afternoon.
MITCH & LESLIE: God has been telling us over the last day that we are to stand firm in the confidence and hope that He can and WILL heal her, so that’s what we’re doing until He tells us otherwise. We are praying continuously over Kamri and putting her in the arms of God every chance we get.
Today’s specific prayer requests are:
-New ventilator would be the switch that Kamri needs for her lungs to fully open and be healthy enough to function on their own
-That Kamri’s brain activity would continue to show NO SEIZURES!
-That her high blood pressure would just be because of the normal ECMO side effects
-No infections come back in cultures
-Leslie’s cold would resolve
As always, THANK YOU for your prayers… our inspiration for “storming the heavens” on Kamri’s behalf? This sign we saw yesterday morning on the window of the building across from CHOP.
As of 3pm today, Kamri had been on the new ventilator (called the VDR) for 4 hours. An X-ray was taken to check in to make sure her vitals were all good after the switch and to see if any preliminary progress has been made. As she had only been on it for a short amount of time, we really were not expecting to see anything. The X-ray came back showing more progress than we expected! The right side is definitely improving and there was even a dark spot on the left side (remember- white indicates fluid, black indicates air on these X-rays)… something we’ve never seen before. We are praying with all of our might that the next X-ray (4am) shows even more progress!
It’s a little scary, sometimes, to get our hopes up when we feel like we’ve made progress or we’re coming up on what could be a very telling update. But again, God calls us to be BOLD and CONFIDENT in our faith and our prayers. So we are praying BIG things tonight… that God would continue those lungs opening and that the 4am X-ray shows some great progress!
Keep fighting, Kamri Blaire! Mommy and Daddy love you! And by the way, you wouldn’t believe how many people across the world are fighting alongside you… you are so loved, baby girl. 
#kamfam
1/14/17, 11:00am
Moments like these are when it’s easy to get frustrated with God. This morning, we are feeling a little defeated, but we are reminding ourselves that God’s timing is different than ours and He is still in control here.
Kamri’s 4am X-ray came back looking worse than her afternoon scan yesterday. Her lungs are mostly whited out again (aka. fluid) and another air pocket (the technical term is “pneumothorax”) was found between her lung and chest wall. She has had a few of these so far, all of which have resolved themselves, so we are praying that the same will happen for this one. She will have another X-ray at 4pm today to see if the pneumothorax goes away and to check in on any progress with lung inflation.
The team has brought up the Bronch test (camera to see and suction down into smaller veins of lungs to remove any secretion) again and that may be on the table in the next few days. For now, she will stay on the Dexamethasone steroid (helps with inflammation) and the VDR ventilator and hopefully with more time, we will see some improvement.
We also asked about the possibility of some physical therapy to help get her more mobile (lying on the back is probably the worst position for lung improvement). Because her ECMO tubes are so sensitive, they cannot move her very much. Once she is able to rely less on the ECMO assistance, more movement may be more of a possibility. For now, the ventilator does that movement for her.
Forward and backward steps seem to be our theme here and it can be really draining. However, our hope and strength and peace and joy does not lie in a test result or a doctor… we are simply clinging to Christ and believing that He will heal Kamri in His time.
Today’s specific prayer requests are:
-Kamri’s pneumothorax will resolve itself
-God would show us some progress in her lungs in the 4pm X-ray
-Possibility of mobility and physical therapy would open up for Kam
7:00pm
We are knee deep in the biggest spiritual battle we’ve ever faced. With a situation like this, not only is every day different, but every hour is too. God is clearly at work here. But Satan is too. It has been amazing to see the battle grounds and the ways that both are working. Mitch and I have noticed that ANYTIME we catch a moment of God’s peace, strength, and hope, Satan has something up his sleeve to bring us down and confuse us with lies… and it’s incredible how quick he is to pounce. PLEASE start looking for the battle grounds in your own life and call out Satan when you see him at work. He hates that. The best news in all of this is that God has already won the war for all and we rest in the confidence and power of that. Satan will try, but he’s got nothing on our God.
Kamri’s 4pm X-ray came back better than this morning’s, which we were happy about. Her pneumothorax has begun to resolve itself. Two prayer requests very clearly answered from the list earlier today! God is good. Next on the agenda is another X-ray at 4am tomorrow morning… story sound familiar? Again, we will never stop praying BOLD prayers that God will take Kamri leaps and bounds tonight and that her progress would shock us all. KamFam, please join us in prayer again tonight.
We saw God very clearly a few times today… our nurses were some of the very best we’ve had so far and the only ones to acknowledge the deep spiritual aspect of all of this. In a world filled with so much emphasis on science and machines, we often feel like we are carrying the hope of Christ on our own. Our nurses told us that they will be praying for Kamri all night tonight. We asked for a glimmer of hope earlier today… God sent us a pair of angels.
The other thing we were reminded of today is the importance of reading Scripture to Kamri. The Word of the Lord is so powerful and we committed to teaching her about God ever since we knew she existed all those months ago. All throughout the day, we’ve been reading Scripture to her- verses of life and God’s promises to her. That she WILL make it and that her Lord is FIGHTING for her. We’d love to read her some of your favorites… leave any that come to mind in the comments and we will make sure she hears them.
Tonight’s specific prayer requests are:
-Kamri’s pneumothorax will totally resolve itself and NOT return
-BIG progress in tomorrow’s X-ray
-PRAISE that God has already won the battle for us (and you!) and prayers that Satan gets no foothold here
1/15/17, 8:00am
Kamri had a GREAT night last night! We spoke with the nurse this morning, who was able to give us some preliminary information. The doctors will be doing “rounds” later this morning where they will discuss the progress made last night and what that means for today’s plan. We’ll touch base with another update after hear back about how rounds went.
Last night, apparently Kamri’s biggest issue was sedation… from what the nurse said, she was quite active! She was really screaming/crying (which you can’t hear because of the tubes between her vocal cords… but she tells you with her facial expressions and can open her mouth as she would if there was sound coming out) when they changed her diaper and even batting at her tubes throughout the night. All things you’d expect from a normal baby! The issue with this is that the agitation can tighten up her body and make it harder for the machines to do their jobs. Her nurses are staying on top of her sedation medication so we are not concerned… more so entertained by the fact that our little fighter is clearly ready to be done with all of this! Apparently the peaceful sweetheart in the picture below has been replaced with a feisty firecracker… and we couldn’t be happier. GO, KAMRI, GO!
The 4am X-ray came back better than yesterday afternoon’s! Apparently BOTH lungs made improvement, for which we are so thankful. The way the lungs are measured size-wise in terms of how “inflated” they are is by “rib count”, or how many ribs the inflated lung expands across. The right side has ever been more than 7-8 ribs and this morning’s X-ray showed it at 10 ribs. The left side hasn’t really ever been inflated at all, maybe only a few ribs, and this morning it showed at 8 ribs. In terms of the pneumothorax, apparently it is even more resolved than yesterday… we will know for sure if it’s completely healed later today. Finally, Kamri’s ability to expend Co2 on her own (due to her lungs being more open) has improved and they have been able to pull back a bit on the help she’s getting from the ventilator. We are thrilled with this progress and are SO thankful for a positive update! God answered so many of the specific prayers last night… thank you for your endurance and faithfulness in praying through the hard moments with us.
Today’s specific prayer requests are:
-Kamri’s pneumothorax will complete its healing and NOT return
-Continued progress in the next X-ray
-That Kamri’s lungs get to the point where she can begin doing more of the work herself and they can wean her off of the ventilator
1/15/17, 9:30pm
The NIICU roller coaster is a bumpy ride and today was full of ups and downs, both in Kamri’s lung situation and in her state of agitation. The team is working hard to get her sedation levels where they need to be, as she has gotten used to the VDR (ventilator) and has decided that she does NOT like it. This is normal, but agitation does not lend itself to opening lungs. Also on the table for early next week are the possibility of the Bronch and a biopsy of the lungs to see if there are any outliers or rare situations at foot that are making it so hard for her lungs to open. The next progress report we’ll get will be the 4am X-ray, which will show us how the lungs are doing. The pneumothorax has completely resolved itself, so we will also be praying that NONE of those return because it affects how much they can push her on the VDR.
Overall, we had a positive day, with a few hiccups here and there. Even so, this journey is pure torture. The unknown can drive you crazy and the ups and downs are exhausting. We want nothing more than to take our baby girl home and start life with her, but for now, this is our story. Lord, please PLEASE show Kamri mercy and heal her. Heal her fully and completely. Amen.
Today’s specific prayer requests are:
-Forward progress in the next X-ray
-That Kamri’s lungs get to the point where she can begin doing more of the work herself and they can wean her off of ECMO
-Peace for Mitch and I tonight
1/16/17, 5:00pm
Wow. In a way, it feels as if God is leading us to the edge of a cliff and calling us to trust in Him with every ounce of our being and every aspect of our daughter’s life.
There are a few small updates regarding sedation (they’ve switched Kamri from Morphine to a medicine called Dilauid because they think she’s built up a tolerance to the morphine… she has responded great to the Dilauid), this morning’s head ultrasound (no more changes…which is a good place to hang for now), and the ECMO assistance (they have lowered the rate of her flow a bit from what it was… a slight wean of assistance).
The big news is that the team has scheduled three major things to happen tomorrow in the early afternoon. They will be doing a Bronch, a Biopsy, and most likely a circuit change. The Bronch is the camera/suction procedure into the lungs themselves. The biopsy is a surgery to remove some lung tissue and send it in for testing. They want to know if there are any abnormalities or rare situations that can explain why Kamri’s lungs are having such a hard time opening (and if it’s something they can do anything to help her with or not). Finally, the chances of the ECMO needing a circuit change after all of this is high. Kamri has been on a blood thinner medication because it’s a necessity for being on ECMO. As the biopsy is a surgery, there is a very high chance of bleeding. They will be adding some clotting medicine to counteract this, but the clotting meds mess with the ECMO machine. It’s a very thin balance and the whole procedure comes with some pretty high risks. The doctors have not sugar coated it… tomorrow is a big deal and something they are taking very seriously.
Needless to say, we have many reasons to be afraid and if we let it, the fear can be crippling. Mitch and I have been calling upon the name of the Lord all day today… it’s all we have. God is speaking three things over us in all of this:
1. Joshua 1:9… “do not be terrified, do not be discouraged”.
2. Pray BOLDLY tonight for a miracle… we have this crazy idea in our heads that “what if her lungs were so open and functional tomorrow at her 4am X-ray that the doctors would be stunned and she would need NONE of the procedures they have lined up”? Crazy? Yes. Might God have something else in mind? Of course. But we are being called to continue to ASK the Lord for what we want… so we are going to storm those heavens again and pray for a MIRACLE. Open, fully healed lungs.
3. God is NOT finished with Kamri yet… we just need to wait on Him.
Tonight’s specific prayer requests are:
-A MIRACLE in Kamri’s lungs tonight… full and complete healing Lord!
-Safety for Kamri tomorrow and blessing over the doctors/surgeons, should all of those procedures occur
-Rest for Mitch and Leslie…physically and mentally
1/17/17, 9:00am
It’s a big day for Kamri…
This morning’s X-rays showed the same results as yesterday’s (a few steps back from the good read on Sunday), so we are gearing up for a big day of procedures. There are more details in yesterday’s update about what all is happening. The lung biopsy is a definite (and top priority) and it sounds like the Bronch is still being decided on. The circuit change will happen if necessary after all of this goes down. Surgery is scheduled sometime in the 10am-10:30am time frame.
Last night, Mitch and I stayed at the hospital, sitting bedside with Kamri and praying over her. We both just felt the nudging that we needed to be here. Turns out, that was a good thing… we found out this morning that her surgery time (which had originally been 12pm) had been moved up to 10-10:30am. Please don’t ever forget… God is concerned and a part of even the smallest details of your life.
Like we said before, today is a big deal and the doctors and surgical team are not taking the procedure lightly. Mitch and I are at peace, though. We know that God is holding Kamri in His hands and will be guiding the team as they care for her today.
God tells us pretty clearly NOT to operate out of fear (2 Timothy 1:7), but to cling to Him with everything that we have (Proverbs 3:5-6)… so that’s what we’re going to do. If you would join us in prayer over Kamri today, we would so appreciate it. Thank you, KamFam.
Today’s specific prayer requests are:
-Safety for Kamri in surgery (no bleeding dangers)
-Skill and speed for the doctors/surgeons working on her
-Results and answers that give the team a better idea of how to treat Kamri and help these lungs open! (Mitch and I are praying hard that the answer to all of this lies in the Bronch… that it could just be a matter of needing to suction out secretion that is deeper in her lungs to allow them to open)
4:30pm
Kamri’s surgery today was successful and she is napping peacefully through her recovery. Thank you so much for your prayers over her! From here, the lung tissue will be sent to the lab, where they will test for any abnormalities. The biggest prayer request for the next couple of days is that they would find NO ABNORMALITIES in her test results. If this is the case, the team will probably opt to do the Bronch (which did not happen today) and will feel more comfortable pushing her a little harder to come off ECMO. In other lung news, Kamri was switched back to the the conventional ventilator (from the VDR) for the procedure. Her X-ray this afternoon indicated that the lungs are all whited out again. While the team expected something like this to happen, being back at “square one” is a very frustrating place to be. In order to let her recover, no changes to her treatment will be made for the next couple of days until we get the biopsy test results back. It seems as though everything now hinges on those results.
Thankfully, the ECMO circuit has not had to be changed yet, but the team will continue to monitor things, as the clotting medication she was on for the surgery will remain in the picture for 24 hours and may affect the machine. They will also be monitoring Kamri closely as she recovers to make sure no bleeding happens in her body.
We are so thankful for a successful surgery and will celebrate that victory today. However, our minds are already heavy with the next steps… what will the test results reveal and what lies ahead for Kamri? God tells us to rest in Him and for now, that’s what we’ll do. Rest and go to God in prayer for the steps.
Tonight’s specific prayer requests are:
-Praise for a successful surgery and prayers for continued recovery for Kamri (no bleeding)
-Biopsy results that indicate no abnormalities in Kamri’s lungs
-Patience as we wait for test results
1/18/17, 2:30pm
Last night, I sent the following message to our family text chain:
Hey KamFam… I just thought of something. This won’t go on FB…just to you all. Right now, Kamri’s on the conventional ventilator, on the lowest “rest” setting. Her lungs are completely whited out and not one doctor is expecting them to open with this scenario. Not only are they not expecting it, but that’s not really their aim… they’re just letting her rest while we wait for test results. In tonight’s update, we asked for prayers about the test results, but I have this whisper in my head that we need to pray specifically for a miracle and for God to be glorified through it. Can you imagine a better platform for people to witness the power of God? When there is no other person or machine that can possibly get the credit these next two days? And we’d get to say… it was all GOD. I think we, as a family, are being called to pray for that miracle.
Lord, give us strength to imagine the unimaginable. To invite the work of the Holy Spirit into Kamri’s body to totally and completely heal her lungs. To BELIEVE with all of our hearts that you are able to do such a thing. To be the first ones to be able to give an account of WHY and say “because God is good and faithful and powerful” when it comes to pass. We are asking for your miracle in her body… open those lungs and breathe the breath of life into her. We love you and we trust you. Amen.
This morning, we walked into the hospital and saw the X-ray and her right lung has opened up a little bit! The doctor said that the team was surprised to see that this morning and that they were not expecting it, as Kamri had only been on the rest setting on the vent. For this reason, they upped her ventilation settings to see if they could continue to “wake up the lungs”, as she put it. Next X-ray will be at 4am.
If you’ve been watching and waiting with us throughout this process, wondering about this “God” we keep clinging to… we hope you are seeing what we are. The God of the universe is AMAZING. He loves Kamri, but not only does He love her, He loves YOU. He is powerful and miraculous and so much bigger than anything else we will ever experience. And yet, He loves US. We hope your faith is ignited as we walk this road together and if you ever want to know more about this God we’re always talking about, we’d love to tell you. Just ask.
Today’s specific prayer requests are:
-PRAISE for the miracles that God continues to show us through all of this
-That God would keep opening those lungs! Amaze us, God, with your power and strength.
-NO BLEEDING for Kamri as she continues to recover from surgery
-Biopsy results that indicate no abnormalities in Kamri’s lungs
Urgent Prayer Request (1/18/17, 9:30pm): Kamri is currently in recovery from her surgery yesterday and is losing blood through her left chest tube and her arterial line (where her blood pressure was being monitored). The team is trying to find a balance between the blood thinning medication that she needs to be on ECMO and the coagulation needed to stop the bleeding. Please pray that they find this balance and that the bleeding would STOP. This is the top priority for the night.
Other prayer requests for tonight are:
-More opening of lungs in tomorrow’s X-ray
-Biopsy test results come back tomorrow showing no abnormalities in her lungs
1/19/17, 10:30am
This morning, Mitch and I got a phone call from the hospital saying that the test results are in. We will be sitting down with our parents and the team at 1pm to discuss them. All we know is that the circumstances are negative and we will be talking about next steps.
Our world has been turned upside down by something we never could have predicted and never would have asked for. But this is our story. We are terrified and preparing for the worst. We are also held by God and we know that. We will never give up hope that God can and will heal Kamri. Right now, it’s hard to see what His plan is, so we are just begging Him to speak to us through this. To give us the direction and wisdom we need to make decisions.
The only thing I know for sure is that God is telling me to open that meeting… with all of the doctors, family, and hospital staff… in prayer and call on the name of Jesus Christ. So that’s what we’re going to do.
In terms of prayer requests, words are failing us right now. It just comes down to a miracle. That in the name of Jesus Christ, by the power of the Holy Spirit, and the love and mercy of God, Kamri would breathe the breath of life and be fully healed.
1/19/17, 7:00pm
We were told today that in terms of treatment, we are out of options for Kamri. According to doctors, her lungs stopped growing during gestation, probably at around 20 weeks. The words out of the doctor’s mouth were “I wish there was a miracle I could do for her, but there are none”. The doctors that read the biopsy results said that they were surprised she’s even alive right now and have no idea how she made it through the helicopter trip from Chester County Hospital to CHOP three weeks ago. We have reached the end in terms of what any medical professionals have to offer. She is too little for a lung transplant and her lungs are too small to ever be able to operate on their own. In their mind, she has no hope of healing.
The thing is, humans are not capable of miracles. That’s up to God. We promised Kamri from night one that we would never give up on her. We would never stop asking God for a miracle. We have reached the point where ONLY GOD will ever be able to get the credit, get the glory for a miraculous healing. Somehow, we always knew it would come to this.
We asked the doctor… what would you need to see in the next X-ray for a miracle to happen? She said “aeration”. That means improvement in the next X-ray: black in her lungs on the screen. We have decided that that’s what we’re going to pray for tonight. When you reach the very bottom, the darkest moment, you just call even louder on the name of God. Why would we stop now?
We know God has a plan. We know He has been sustaining Kamri all of this time… there is absolutely no reason to believe that He can’t or won’t heal her now. If that’s not His will, we will cross that bridge and lean on Him when we get to that point. For now, we fight. As we held Kamri tonight (a beautiful first for us), we promised her that we would fight all night for her. We will continue to beg and plead God for a miracle. All night, we will pray. If you feel like joining us, we’d love to do this alongside you.
Father, Kamri is yours before she’s ours. She always has been. We lay her at your feet and ask that you would heal her- 100%- fully and completely. Do what no one else thinks is possible. No matter what, we will love you and trust you. You know the deepest desires of our hearts. That people would come to know you and that we’d be able to take our daughter home. At her next X-ray, please show the doctors more aeration in her lungs than ever before, so that you alone may get the glory. Please honor the prayers that have been lifted on her behalf. Amen.
1/20/17, 5:00pm
This morning’s X-ray showed some more air in Kamri’s lungs, but not enough (and not in the right places) to change anything about the doctors’ game plan… which is essentially to keep her alive on ECMO so we can be with her for as long as we want, but not for further improvement.
This has been the longest day of our lives, filled with more trials and tests of our faith than we ever could have imagined. We are weary from this long, unexpected journey we’ve been on. We are deeply saddened at the thought that this could be the end of the road here on Earth for our baby. But God has been with us in every single step of the way today. We have experienced unexplainable peace and determination. Peace that God is in control. Determination in the fact that God ALWAYS gets the last word.
The battle belongs to the Lord and He is fighting for her and always has been. For that reason, we have promised her from the very beginning that we will fight for her too. Until the very last moment.
After a lot of consideration, Mitch and I have made a decision regarding the next steps for Kamri. One option was to keep her on ECMO until the circuit fails. When this happens, though, it is not peaceful for anyone. Lights, alarms, and panic are how it was described to us. That is not how we want to remember any last moments with our daughter. Her circuit is already showing signs that it is on its way out. The other option is to choose to remove her from ECMO on our own terms. This is the decision we have made and we will be doing this tonight at 8pm. We will be holding Kamri and she will know how deeply and fiercely we love her.
But we are not finished fighting. We promised her. The Lord says SEEK and you shall find, ASK and it will be given, KNOCK and the door will be opened. The beautiful thing about God is that He never tells us to stop asking for what is in our hearts. And we want to take Kamri home. Against all of the odds, against every single medical professional that has talked about “when Kamri dies” today, against everything that makes sense in this logical world. We are going to ask, beg, seek, knock, petition, and plead for God to show mercy on our daughter and when that ECMO circuit is removed, that He will breathe the breath of life into her and she will live. We will never stop storming the gates of Heaven on behalf of our baby. Until God leads us down a different path, we will never stop believing in His ability and willingness to heal her, fully and completely. We serve a mighty God and would be so honored if you would join us one last time in prayer over our sweet baby girl.
Either way, we have had a beautiful day with Kamri and our family. We got to bathe her, dress her up in a beautiful dress, and have her baptized. We have footprints, hand prints, and locks of hair. God will bring us through this, no matter what. He will walk with us, every step of the way. Either way, we will celebrate Kamri’s life today.
Father, thank you for the blessing that Kamri has been in our lives. Thank you for the blessing she has been on this world- leading so many toward you in the three short weeks she’s been on Earth. Lord, we are pleading for mercy. Honor her faithfulness to you, give her life. Do what seems impossible in the eyes of man. If it’s her time to be with her Savior, please fill us with the deepest peace and comfort, knowing she’s resting in the arms of Jesus. No matter what, we will love you and praise you all the days of our lives. Amen
6:45pm
Kamri’s oxygen levels are decreasing… God is telling us to prepare for battle earlier. 7pm is when we are doing it and when she will need to breath on her own off ECMO. Please be praying now as we fight for her together. The battle belongs to the Lord!
1/20/17, 9:00pm
At 7:25pm on January 20, 2017, Kamri Blaire Thomas danced her way into the arms of Jesus. We (and you) prayed for a miracle… God gave her life apart from ECMO for a full 25 minutes before she passed away. Our God is amazing and can do immeasurably more than anything we ask or imagine.
We prayed fiercely and worshipped joyfully as a family over our sweet baby girl tonight. Mitch and I are at peace. As much as we wanted to spend all of the rest of our days with our girl, our miracle is that she got to meet Jesus before any of us did. What a beautiful day. God is so, so good.
“For God so loved the world that He gave His only son so that whoever believes in Him will not perish, but have eternal life.” (John 3:16) Because of the deep love of Jesus, someday we will get to spend eternity with our baby girl.
Father, thank you for your love. Thank you for your peace. Thank you for our daughter. We love you and praise you, for you are good. Protect and guard our hearts as we grieve our baby in the coming days and weeks. Amen
Kamri, our sweet, sweet girl. You have changed our lives and changed our world. God has used His littlest warrior for such big things and we could not be more proud of you for being faithful to Him. You make us so happy, little sunshine. It’s been an honor being your parents here on Earth. We turn you over to God… you were His before you were ever ours. We love you, sweet girl, and we can’t wait to be with you again. Love, Mommy &Daddy 
1/24/17, 12:00pm
Kamri Blaire Thomas was welcomed into the world on Wednesday, December 28, 2016 at 4:41pm, weighing 6.5 pounds and measuring 19 3/4 inches long.
Kamri’s short time on Earth was spent listening to Mommy and Daddy read books, sing songs, and fall head over heels for her as she battled for her life against many medical conditions. Our sweet girl changed our world and showed us the deepest understanding of love we’ve ever known. Returning to the loving arms of Jesus, Kamri passed away on Friday, January 20, 2017 at 7:25pm. We could not be prouder or more in love with our beautiful daughter. We would like to invite you to celebrate her life with us, as her life has changed so many others who grew to love her too.
A memorial service will be held on Saturday, January 28, 2017 at the First Presbyterian Church of Ambler. A time of visitation will be held from 1:00-3:00pm and the service will start at 3:15pm, with a reception of light refreshments to follow.
2/4/17, 4:00pm
One week ago today, we celebrated the life of our beautiful daughter, Kamri Blaire Thomas. For those of you who have been following along on our journey and were unable to make the service, we’ve put together a post with some of the details from the day: the reflections that Mitch and I gave, Kamri’s video, and a snapshot of all of us singing her song. You can find the post HERE.
Also, we have heard from so many of you that Kamri has made a significant impact on you and that her story has changed your life. We are honored that God has chosen to use our daughter for His purposes. It makes the pain of not having her with us anymore a little lighter, knowing that she brought so many closer to Christ.
We just learned that our cousin is compiling a collection of these stories and making them into a keepsake for us to remember Kamri by. We are overwhelmed by gratefulness at the thought of having such a thing to read through in our darkest moments… something that can help us to remember that God’s plan for Kamri’s life is and has always been bigger than ours. If you are one of those people and would consider sending your own “Kamri story”, we would be honored to have it to remember how her little life made a difference in so many others’. You can email it to: mitchandleslie921@gmail.com
KAMRI'S MEMORIAL SERVICE
On January 28, 2020, we celebrated Kamri’s life with a memorial service. Since so many of those who had been praying for her and supporting us along the way were doing so from such great distances, we put a post together with some of the details of the service. We included the reflections we each gave, a video of her life, and a video of the congregation singing one of the songs that became “her song”, as we found ourselves singing it on our drives to and from seeing her and to her, while she was alive.
IN THE MONTHS THAT FOLLOWED...
Over the next several months leading up to Kamri’s first birthday, we shared some special things about her, unrelated to her medical journey. As her parents, it was such a breath of fresh air to be able to share our daughter just as she was: our daughter… the things that made her her, the unique things about her, and some of the memories we had with her over her short life.
GRIEF IS A FOREVER JOURNEY
As you can imagine, our journey as Kamri’s parents, the grief that comes with losing a child, and learning how to continue living here without her is an ongoing one. We have shared quite a bit of it on this blog over the years. Here is a collection of all of the grief-related posts we have shared since Kamri died.
