It's quiet. The kids are {finally} asleep. My mind has been thinking on this the last few days. I had it all written out in my head during my shower the other day, but alas, no time to write this down. It's been a bit of a crazy week. Just a bit. A tiny world-sized bit. And I guess I've been procrastinating a bit because it's almost too good to be true, that our girl is FINALLY coming home. Which she would not be doing without you and all you've done to heal her, breathe life into her (literally), and carry us along this journey. So since the rest of this last week before she comes home will be chaos, now is my chance to say...
Thank you.
I thought through idea after idea of what can we give you as a token of our appreciation, as a momento to remember Chloe, as something to wrap up the last five months, but you deserve so much more that something that will sit upon the shelf and gather dust...
Dr. Mc~You deserve a brand new pair of pointe shoes. Because Chloe is a "delicate dance" as you so often said. You were the first to meet our Chloe girl and not take your eyes off of her. You showed such compassion for her. We are forever grateful. You also deserve some sort of medal for the way you sailed through her first week of test after test after test, then led Chloe's first care conference, complete with 14+ nurses, doctors, and specialists. Thank you for fighting for us since Day 1. Thank you for crying with us. It showed us how much you care for your patients and their families, and that tiny act meant the world to us. A simple thank you isn't enough. It never will be.
Dr. P~You deserve a certification from Mike Rowe of Dirty Jobs for inspecting Chloe's stooly (new word, not in your medical dictionary yet) diapers. You also deserve your own light up question mark because Chloe seemed to have the most questions on your shift. But you never failed to mix humor with reality. To agree that she is a gray zone baby, but to make the most of this situation as well and bring laughter to her bedside. It's because of you that she tore down that tower! Thank you. And our cat is still alive ;).
To all of the NICU Neonatologists who had Chloe~You've ALL been amazing. It's not the easiest breaking the news to parents that, well, you've "just never seen a baby like Chloe before." Well, then let her pave the way. And with that, you have paved the way as well to know how to address babies like her in the future. Give yourselves a pat on the back. And Dr. O~Nothing gave me more joy than to suddenly see a smile burst across your face at the end of the pre-discharge meeting. In that simple gesture, I knew that you were saying it's HOME time. We still have a long road ahead, but that smile alone made us feel so excited at what all Chloe has accomplished because of doctors like you. Thank you.
PACT~You deserve a gift certificate to your favorite shoe store because you wore out your current pair chasing us down, always coming back to find us if you hadn't caught us by the bedside. Always checking in on us regardless of your crazy day and schedule. I cannot thank you enough for the encouragement, insight, laughter, and espresso, even if the latter only happened once and I'm still not convinced that you really have a machine in your office. Do you even have an office? Because you're EVERYwhere. And we're thankful for that. And thankful for the day you announced during rounds that, "Hey, you did your hair today! Good for you!" ;). And to L for the chocolate and ears to listen. Thank you so much for your encouragement when I sobbed into my notes as reality hit after this last meeting. Anyone who willingly encourages me to drink coffee and shop at IKEA is dandy in my book ;). Thank you.
To the night shift Charge Nurses~You are amazing. You made me feel so comfortable being one of few late night owl parents in the NICU. You never made me feel weird for staying so late. You reminded me that this is my baby, my child, and to stay and rock as late into the night as I needed. Saying you missed me last week was the sweetest thing ever because it showed that you're not in this job for the income, you're here to save lives, sweet, precious little lives, and to care for them and take charge over the sweetest and most tender floor in the hospital. You talked me through coding events. You made sure we understood everything that was happening. You stopped in to check on her often after that. You remembered us, there, back in the corner at D39 and always said hello.
To the front desk staff~You all deserve the best coffee and chocolate around!! You didn't just sign us in, you asked about our child. You supported us. You loved on our other littles. You smiled when we smiled, and you ran with me to the elevator when I ran out of the NICU in tears and was practically hyperventilating just to make sure I'd be OK. You checked in on Chloe. You made sure I didn't text-walk myself into the wall. You are all so amazing and we cannot thank you enough that each and every single time we walked through those doors on 3 Henson, you greeted us with love. Even if you did watch me through the camera and laugh when the door got stuck on me. Thank you.
To Child Life~You deserve an award for patience for all you did for our other littles on the day you taught them about their Chloe dolls. You patiently went over each piece of tubing, wires, IV's that Chloe had with our littles and taught them why and what and how and answered a MILLION questions. You made an impact on them. Our son still is saying he wants to be a doctor. And I noticed it the minute you handed him his first set of gloves and you were going to help him put an IV in his baby Chloe doll. You checked in often to ask about them and to discuss how they were coping. Thank you.
To each of our nurses~If there wasn't a rule that said we couldn't have 50 primaries, then we would! We were touched and blessed by so, so many of you. Each of you brought love and support to her bedside. We sat for hours watching how you interacted with Chloe and your other babies. Your skill is above and beyond. Your knowledge and wisdom and the way you advocate for our daughter during rounds never ceased to amaze us. You took extra shifts just to have Chloe. You knew she'd met her primary max, but still requested her if and when you could. You stopped us in the halls on surgery days to ask how she did. You said you were praying for her and thinking of us. You shared with us things that Chloe has taught you and it made our parent hearts swell with joy.
To the NICU janitor~I still don't know your name, but you are the sweetest. You always made sure to not disturb Chloe or us as you worked. You won the best scrub award time and time again ;).
To her nurse practitioners including cardiac team~You amaze us. You kept it real, but never gave up.You were her #1 fans. You coined the phrase, "But it's Chloe..." and knew that meant that she doesn't exactly follow a well beaten path. And even if you call us ten years from now, I'll still know your voice and probably freak out a bit ;). Might I suggest texting if it's a non-emergency ;).
To NICU RT's~Cannot thank you enough for your wisdom and expertise. For talking us and our shaky hands through our first trach care attempts. For answering so, so, SO many questions time and time again, even if you'd just explained it fifty times to us the hour before. For being calm and patient during extubation attempts. For allowing me to help soothe her during it and reminding me that a mama's touch is so, so important. For simply being a familiar face in such a scary world and thus thankful that our paths crossed again. For encouraging us that we can do this when we get her home.
Finally, to her Primaries...
{Pause for tears...no not yours, mine. I can't type through tears.}
You deserve the medal of bravery. Of honor. Of valor. I'm having trouble even summing up all that you've all meant to us. You were the ones that checked her pulse, and ours. That listened to her heart, and ours. That fought for her, and us. That loved on her, and us. That bought her clothes ;), even if they were wayyyy too big and after all your experience with petite babies should have known better than to think she was that big ;). That welcomed us each bright new day, and stayed up with us sharing stories and talking by her bedside late into the night so she could learn the sound of laughter. That held our hands. That got our sense of humor, and had some of your own. That we watched an engagement proposal unfold before our eyes and got to discuss the fun wedding details with. That we heard stories of your own kiddos happenings and birthday parties. That shared about your weekends spent on the ball diamond. That bought and spoiled Chloe with gifts. That made her first official bow on her first hat and helped the day she was delivered. That made her her own special blankets. That prayed with her. That bought her bows and slippers.
That fought for her. That bagged her. That stayed by her side as she coded. That helped intubate her. That made eye contact with me far across the room, over the heads of multiple nurses and doctors as you breathed for her by bagging until her tube was in. Whose eyes conveyed, "She's OK," and thus allowed us to breathe. That prayed with us. That cried with us. That wrapped your arms around me as I sobbed.That cringed a little each time you took her blood gasses constantly every couple of hours as you watched her vent settings and tried to help figure out her desats. That skipped your lunch break to do urine cultures, blood cultures, and trach cultures. That carefully charted each and every desat every fifteen minutes for an entire night, then miraculously got me a parent room so that I'd be close and tucked me at 3am. That helped us ask the hardest questions parents should never have to ask. That held her hand. That stayed an hour late on more than one occasion to chart. That missed lunch and took breaks late and nearly peed yourself because you didn't want to leave her side when she was unstable and made us threaten to get you a catheter and feeding tube so you wouldn't need to leave her side. That made sure she was warm when her little body was cold and having trouble maintaining heat.
That snuck me pumpkin spice coffee by her bedside on surgery day. That made her a little matching trach on her tiny elephant. That kept a watchful eye on her from afar on days that you didn't get her, but went into protective mama mode for us anyway. That didn't mind that we called in seven times a day when we weren't there with her, and never got upset if we forgot and called in during shift changes or trach care.
That taught us how to take her temperature. That taught us how to change her tiny diaper with so, so many wires to dance around. That decorated her NICU bed and made banners with her name so all the floor could see who she was and announce her arrival to the world. That carefully and strategically handed us our daughter and all her ensemble of cords and tubes to hold. That reassured us she was ok as we rocked her and listened to the monitors. That taught us trach care and g-tube care and wipe baths. That still don't make fun of me for how many Q-tips I use. That provided Alan with XL gloves even though it was probably a challenge to even find them. That danced for us! That sang to Chloe girl. That called her by her middle name when she was naughty. That gave her pep talks. That gave us pep talks. That washed her laundry for us when we weren't there. That always made sure her elephant taggie was comforting her. That made sure she wasn't in any pain. That read to her. That had morning sunrise playtime with her. That introduced her to her boppy even if she gave you the stink eye. That made her hand prints and feet prints and scrapbooked the pages of her baby book each month for the last five months. That let me do even the smallest acts, like weighing her diaper, so that I could feel more involved as her mommy. That scrapbooked Father's day and birthday cards from her to us. That always remembered to tell us her weight in pounds and ounces, and never hesitated to look it up each time we asked. That made sure she was dressed exactly as I wished on picture day since I couldn't be there.
That ALWAYS made sure her bow was on.
That got us through this. That reminded us we can do this. That reminded us He's got this.
That loved on Chloe.
That loved on us.
That loved on our littles.
That became a part of our family, as we became a part of the NICU family.
What once was such a scary and frightening place so soon after her birth soon became such a tender place, and will FOREVER stay in our hearts. And it's thanks to all of you. Do not ever think you just come to work and help babies. Because it's more than that. You save lives. And not just the babies...
THANK YOU.
Sunday, September 21, 2014
Chloe Home Q&A
As our other post announced, Chloe is getting ready to come home.
What does this mean? So, so many things.
Discharge date is one week from this Monday. We will have a nurse driven to KC, then ride home with us.
Chloe is currently working on building resistance and strength for her trip home. This means she is using what is called an inline HME{slang for heat and moisture exchanged} as a "humidifier" of sorts to moisten and warm the air in her vent for the ride home. This is because her real little humidifier on her vent is too big for travel, so she must use this piece attached to her vent for any trips outside of the home. This tiny piece of plastic means a lot to her. It means travel is possible. But not without hard work. This tiny piece creates resistance on Chloe and thus she is working daily to build strength to stay on it for at least 3 hours (our trip home is just over 2).
Chloe is also working on gaining a consistent weight. This is crucial that she gain in time for her next heart surgery {possibly spring or whenever she outgrows her new shunt}. Currently she is 7lbs 9oz. She has been gaining, but on Lasix day she tends to lose a lot and have to start back over the next day on weight gain.
These are our two main prayer requests: To be able to hand the HME, and to gain weight.
Along with that is the fact that our other daughter has a cough. We are praying so hard that she would heal from this cough quickly. Praise that so far the rest of us are healthy and no fevers and that Abi's fever is now gone for 24+ hours. Please, please pray because if any one of us gets even a cold, she cannot come home on schedule.
Other prayer requests:
-For our insurance(s) to get all sorted out because private insurance, in cases like this, do not cover all that much. We're grateful for it, and it's meant we haven't paid hardly a dime on over $2 million in hospital bills, however, it will not cover a lot of things, like adequate nursing, some important and expensive supplies, etc.
-For nursing. Currently the company we have chosen has 11 nurses that have said yes to caring for Chloe. We'll have a couple observe her this coming week to get a better idea of what this tiny bundle is like and what it'll be like to care for her.
-Travel. Alan heads over Monday thru Wed, then comes back home, then we both head over together on Thursday.
Questions:
1. What does discharge look like? What has to be lined up?
We've already had our home assessment by the medical equipment company. They will return this coming Wed afternoon with all of Chloe's equipment so that we can complete equipment training (please pray for knowledge, wisdom, skill as we learn this). We'll stay Thursday through Monday in KC. Friday and Saturday nights will be in the parent room on the NICU floor as we parent and care for Chloe all by ourselves under observation. They give us a day of rest on Sunday at RMcD house, then on Monday morning the adventure begins. We have people lined up in MHK to care for our kiddos over these days. We're trying to get nursing lined up and schedules decided and ready.
2. What does nursing care look like?
We will be Chloe's primary nurses and care team. We, the parents. We are the leaders, the nurses will follow because God is amazing and has a sense of humor and thinks we're equipped to do this. In other words, we were told that while we are beyond blessed by trained registered nurses in critical care NICU setting, we're about to venture out into the world and will most likely have licensed nurses vs. registered nurses. Although many of them have trach and vent experience, we know our girl and what makes her tick and how to suction her per her specific desires.
We will have nursing care most likely 24/7 for the first two weeks. At some point we'll reevaluate, and as we begin to be more comfortable on our own with Chloe, then we'll taper down on nursing care. That means we'll begin to only do 16 hours with nursing care/8 hours on our own. Then 12...then 10...then eventually we'll get to only 8 hours of care per day (and we can decide when this is, be it night so we can get rest, or day so that I have extra help while also taking care of our other littles while Alan is at work).
It's still unclear the requirements for who is with her, meaning at the beginning we need 2 trained people with her at any given time. This means appointments in KC will require either both parents, or one parent and one nurse, but we no longer will have a nurse traveling with us if we both would like to go. This means if our nurse's shift is done and it's just the two of us and errands need run, or a child needs taken to urgent care, or the mommy needs a coffee break....well...then we'll hope and pray that some people will come forward who are willing to be trained to be with Chloe so that we can do that from time to time. This person/these people will be required to learn infant and trach CPR, to learn to be suctioned, learn her numbers and what to watch for, learn feeding pumps and gtubes...it's asking so, so, so much of our friends. But without this, we'll never leave our home...
3. How will you go on a date night again?
Well...not sure...until we have others trained and learning Chloe, we cannot leave her. So much for the Rend Collective concert. Meaning, raising Chloe is about sacrifice, and we're willing to do that to make certain our daughter is in safe hands until we're comfortable leaving her. Date nights will get creative and will probably include lots of game nights, movie nights, making fun of furniture listings on craigslists again (fun pregnancy pastime), ordering delivery after kiddos are in bed, etc. One, someday, we'll get our date nights back.
4. Visitors Far & Wide {and Close}?
At the beginning at least, we'll greatly limit visitors. We'll ask you health questions and find out what color your snot was recently. We'll ask you to not only wash your hands, but use one of the 4 to-be-installed wall mount hand sanitizers. We'll ask you to not visit if you're a smoker. We'll ask you to possibly wear a gown if you were recently around someone else that had a cough or cold but are ok yourself. Or we might say sorry, now is not the time, nothing personal, just the state of well being of our open-heart-surgery-lung-diseased-daughter. Alan's got a great post coming on this for more details... And it means the visits we do have will probably be limited on time. Remember: Chloe's schedule of medicines, trach care, PT, OT, getting down for naps, baths, assessments wears us out, then add a 4.75yr old and a 3 yr old into that mix.
Family visits: Limit 2 people. We'll probably ask that you get a hotel because we're on lockdown here (remember, this is not just our home anymore, it's a hospital room, and just like in the hospital, we need to limit number of visitors at any given time). If it's only 1 person then we might be able to house you here but it will have to be discussed in advance.
Friends: Call first. Text first. Contact us first so we can make sure we're ready {i.e. hand sanitizer stocked?? Will they need a gown? Will they need gloves?? Are they delivering coffee or not? ;).
Visitors bringing meals: Please know we are so, so, SO appreciative of the meals and extra help. Our hearts are swelling with joy and peace knowing you're all there to help us out. However, please know that dropping off a meal does not necessarily mean a visit with or getting to meet Chloe. This all depends on your health, our level of sanity, and where Chloe is at on her daily routine. Visits wear her out too because they throw her off her little schedule, so we have to be sensitive to her as well and not wear her out. Growing and breathing are her biggest goals, and that's hard if she's exhausted. This does not mean no visits or meeting new friends, just that you'll need to check with us first.
4a. Holidays?
It means we will not be traveling home to Iowa for months and months. Nope. Not with a baby who can barely be on the HME for 3 hours just to get home. Not chancing exposing to cold weather and the risk of sickness. It means we hermit-it-up and enjoy the holidays this year as just our tiny family of 5.5 (the nurse and cat will probably count as family on those days). Two words: Get Skype ;). We LOVE to skype family and friends. We need to know they're still there supporting us and cheering us on even though we can't always have them here. We'll encourage any family and friends to try setting up routine weekly skype dates.
Please know this does not mean we want to be left completely alone. We need and crave interaction. We pray this is for a short time and that we can continue regular visits and playdates soon. We pray that if it is a good day for all that we would be able to get out, to meet a new friend of Chloe's, to have little friends over for playdates with the kids, or to send our kids out for a playdate. Our hearts crave "normal", but there will be a transition from hospital to home, and for Chloe's health, we do not know how many days, weeks, months this will take, especially since this is cold and flu season upon us. Please do not leave us completely alone~text. Call. Check in. Email. Facebook us. Message us. Remind us you're there.
5. How is Chloe doing with everything else?
Eyes-follow up with eye clinic at some point. Doing good. Might need minor surgery in future. Will most likely mean glasses when she's a bit older.
Ears-Moderate to Severe hearing loss, mainly due to how she's fearfully and wonderfully made, although some of it could be caused by fluid in her ears due to her cleft palate. She might need tubes to help with this until her cleft palate is fixed (around 1 year old). Sometime this week we'll do molds for her hearing aids. She can hear, but it's like the teacher on Charlie Brown. It's muffled and cloudy and because she's a baby, our language is unknown. It's like Isaac shouting downstairs from upstairs that he needs more TP and me hearing him but can't understand what he's saying. Sometimes it startles her if we're talking by her and she is asleep and didn't know we're there. Music, however, soothes her. We this think is because she can understand that it's a repetitive melody vs. hearing our voices and not knowing what exactly we're saying. Need to get ipod and speakers for her bed so that she can have music throughout the day and with her naps. She'll be getting hearing aids in the next 3-6 weeks, and will wear them whenever she's awake (they come off for naps and nights).
Club Feet-the right foot is still only needing physical therapy (PT), while the left one will have a splint. She also wears a 'soft splint' on the right foot to keep it from being able to bend too far upward and back. She wears her splints at the same time-one for four hours, off for four hours, off at night. We're waiting to fix her left club foot until she's bigger and more stable from heart surgery as she needs off her blood thinners for that surgery (they slice the achilles tendon and then have it grow back and casting during this time).
Heart-stable enough to bring her home. Doing good. No more random desatting episodes. She still takes a tiny dip from time to time if she needs suctioned. Next surgery is the Glen and that is whenever she out-grows her shunt (hoping not till spring). She'll be closely monitored here at home by nurses and us and also by frequent (every 2 weeks-ish) appointments back in KC through their CHAMPS program.
Lungs/Respiratory/Trach-her lungs are still healing from all those months of desatting and lower oxygen to them. She's working hard to wean off her vent. She's a ROCKSTAR. She's currently so low on vent settings that all she needs is a tiny bit of positive pressure so that when she exhales her lung doesn't close in (think sucking air out of baggie), but enough pressure left to keep her lungs open when she exhales. This is mainly the ONLY thing she needs her vent for these days. She'll work on weaning off vent when she's home, which includes wearing a little piece of plastic similar to her HME that moistens the air (has filters on the end) but it literally is just a piece of plastic stump so to speak hooked on the end of her trach meaning no tubes. She'll gradually work toward being on this for minimal times throughout coming days and weeks until she weans off the vent and only needs those. To keep the air moist and not dry (think of how your body gets in the winter dry air and breathing issues it causes), she'll always wear that piece if she's off the vent but until she can no longer have her trach in, which will be around age 3 or 4 depending on when her last heart surgery is. In other words, she might not need her vent and tubes for much longer, but we need to keep that trach in place for a few years. It's what provides her stable airway for all her surgeries as well.
*A note on her trach and vent. Yes, technically it is life support. We have a baby on life support here in our home. Many are asking and concerned about how long she'll have to be on this "life support". But remember, she's not a vegetable. She's doing amazing. She's learning and growing and gaining strength and reaching her own set of milestones. She's barely on any settings for her vent, only enough to give her a bit of umph after she takes breaths. Her trisomy has given her a floppy airway, but that doesn't mean in time and growth it won't heal. We've had some refer to her vent as life support and it makes us feel uncomfortable, like we've made drastic and bad decisions to keep our daughter alive. Please know that it was not an easy decision to put her on the vent, but it was a very much prayed about and well informed decision, and for those that do not know or are not familiar, many, MANY babies and kiddos are on trachs and vents as they grow and to help them breathe and grow so that one day they can be off of them. You've seen her smile with it ;). You've seen her grasp it for comfort when she's trying to sleep. It's becoming her new security blanket or taggie. It's a part of her now, and it's not so scary to us. Learning the settings and controlling it-yes, very scary. But the actual idea of it is no longer as intimidating. And it's ok to stare, but ask questions while you do. Remember, it does not hurt her and her ties are not choking her. It's new and different and at times uncomfortable, but she is not in any pain with it. Please do not judge our decision, especially if you are unfamiliar with what a trach and vent are. We would love for you to learn beside us. We were intimidated by it at first as well, but we're learning and becoming more relaxed by asking questions. And saline bullets to flush the suction on it are like little mini squirt guns ;). I only speak from experience of accidentally shooting one of our primaries ;).
Kidney-so far, so good. She's on blood pressure meds as needed. She is on a diuretic to keep fluid off her (2x per week). This helps her pee off any extra fluids. Pray she never gets UTI's as any infection to her kidneys causes trouble and risks.
6. What's life like with a trach baby at home?
Yet to be figured out. However, it's surreal to hear that we need to have a 24hr pharmacy, that we need to inform our local ER of her condition, that we have to call local EMS and make sure they're aware of her, that we are asking various friends in different neighborhoods if in case of power outage, can we come crash any time day or night with her because she needs her ventilator and monitors plugged in {and because if not, then we camp out at the ER until our power is back on}, that we need to be getting a landline installed this week instead of just our cell phones, Gone are the days of just running an errand, going to Target, even just going to church will look different and present its own set of crazy logistics.
It's about being trained to know what to do in any circumstance. It's about knowing that it's ok to say no to visitors and help if they're sick. It's about asking for help when we need it. It's about relying on so many others other than ourselves to get us through this. It's about learning to play well with others {new nurses are intimidating and we're in mama/papa bear protection overdrive right now}. It's about being Chloe's biggest advocate in all of this.
I'm sure there are still many questions, and we'll try to address them in coming days and weeks, but these are the most popular asked and this helps us to not have to repeat ourselves because she's so complex and it's wearing. But also, don't be afraid to ask any questions. Just might help us if you email them or text them to make sure we have time to adequately answer them for you. Ask about her trach. Ask for pictures. Ask about ventilator. Ask about how she's doing each day. Ask about PT/OT. Ask whatever you'd like. We're open to discussion and are huge fans in helping others understand the uniqueness of Chloe. Just know we might not be able to respond immediately.
There are many unknowns and fears and worries and anxieties we still have surrounding all of this, but cannot all be addressed in one packaged blog post. We'll reveal those and how the Lord is taking us through them in future posts.
And in the meantime, we'll rest knowing He's got this. He's been with us this far. He's been with us since December when this all began. He was there the day He created her within me. We will continue to follow on this journey. We will continue to go wherever He leads.
What does this mean? So, so many things.
Discharge date is one week from this Monday. We will have a nurse driven to KC, then ride home with us.
Chloe is currently working on building resistance and strength for her trip home. This means she is using what is called an inline HME{slang for heat and moisture exchanged} as a "humidifier" of sorts to moisten and warm the air in her vent for the ride home. This is because her real little humidifier on her vent is too big for travel, so she must use this piece attached to her vent for any trips outside of the home. This tiny piece of plastic means a lot to her. It means travel is possible. But not without hard work. This tiny piece creates resistance on Chloe and thus she is working daily to build strength to stay on it for at least 3 hours (our trip home is just over 2).
Chloe is also working on gaining a consistent weight. This is crucial that she gain in time for her next heart surgery {possibly spring or whenever she outgrows her new shunt}. Currently she is 7lbs 9oz. She has been gaining, but on Lasix day she tends to lose a lot and have to start back over the next day on weight gain.
These are our two main prayer requests: To be able to hand the HME, and to gain weight.
Along with that is the fact that our other daughter has a cough. We are praying so hard that she would heal from this cough quickly. Praise that so far the rest of us are healthy and no fevers and that Abi's fever is now gone for 24+ hours. Please, please pray because if any one of us gets even a cold, she cannot come home on schedule.
Other prayer requests:
-For our insurance(s) to get all sorted out because private insurance, in cases like this, do not cover all that much. We're grateful for it, and it's meant we haven't paid hardly a dime on over $2 million in hospital bills, however, it will not cover a lot of things, like adequate nursing, some important and expensive supplies, etc.
-For nursing. Currently the company we have chosen has 11 nurses that have said yes to caring for Chloe. We'll have a couple observe her this coming week to get a better idea of what this tiny bundle is like and what it'll be like to care for her.
-Travel. Alan heads over Monday thru Wed, then comes back home, then we both head over together on Thursday.
Questions:
1. What does discharge look like? What has to be lined up?
We've already had our home assessment by the medical equipment company. They will return this coming Wed afternoon with all of Chloe's equipment so that we can complete equipment training (please pray for knowledge, wisdom, skill as we learn this). We'll stay Thursday through Monday in KC. Friday and Saturday nights will be in the parent room on the NICU floor as we parent and care for Chloe all by ourselves under observation. They give us a day of rest on Sunday at RMcD house, then on Monday morning the adventure begins. We have people lined up in MHK to care for our kiddos over these days. We're trying to get nursing lined up and schedules decided and ready.
2. What does nursing care look like?
We will be Chloe's primary nurses and care team. We, the parents. We are the leaders, the nurses will follow because God is amazing and has a sense of humor and thinks we're equipped to do this. In other words, we were told that while we are beyond blessed by trained registered nurses in critical care NICU setting, we're about to venture out into the world and will most likely have licensed nurses vs. registered nurses. Although many of them have trach and vent experience, we know our girl and what makes her tick and how to suction her per her specific desires.
We will have nursing care most likely 24/7 for the first two weeks. At some point we'll reevaluate, and as we begin to be more comfortable on our own with Chloe, then we'll taper down on nursing care. That means we'll begin to only do 16 hours with nursing care/8 hours on our own. Then 12...then 10...then eventually we'll get to only 8 hours of care per day (and we can decide when this is, be it night so we can get rest, or day so that I have extra help while also taking care of our other littles while Alan is at work).
It's still unclear the requirements for who is with her, meaning at the beginning we need 2 trained people with her at any given time. This means appointments in KC will require either both parents, or one parent and one nurse, but we no longer will have a nurse traveling with us if we both would like to go. This means if our nurse's shift is done and it's just the two of us and errands need run, or a child needs taken to urgent care, or the mommy needs a coffee break....well...then we'll hope and pray that some people will come forward who are willing to be trained to be with Chloe so that we can do that from time to time. This person/these people will be required to learn infant and trach CPR, to learn to be suctioned, learn her numbers and what to watch for, learn feeding pumps and gtubes...it's asking so, so, so much of our friends. But without this, we'll never leave our home...
3. How will you go on a date night again?
Well...not sure...until we have others trained and learning Chloe, we cannot leave her. So much for the Rend Collective concert. Meaning, raising Chloe is about sacrifice, and we're willing to do that to make certain our daughter is in safe hands until we're comfortable leaving her. Date nights will get creative and will probably include lots of game nights, movie nights, making fun of furniture listings on craigslists again (fun pregnancy pastime), ordering delivery after kiddos are in bed, etc. One, someday, we'll get our date nights back.
4. Visitors Far & Wide {and Close}?
At the beginning at least, we'll greatly limit visitors. We'll ask you health questions and find out what color your snot was recently. We'll ask you to not only wash your hands, but use one of the 4 to-be-installed wall mount hand sanitizers. We'll ask you to not visit if you're a smoker. We'll ask you to possibly wear a gown if you were recently around someone else that had a cough or cold but are ok yourself. Or we might say sorry, now is not the time, nothing personal, just the state of well being of our open-heart-surgery-lung-diseased-daughter. Alan's got a great post coming on this for more details... And it means the visits we do have will probably be limited on time. Remember: Chloe's schedule of medicines, trach care, PT, OT, getting down for naps, baths, assessments wears us out, then add a 4.75yr old and a 3 yr old into that mix.
Family visits: Limit 2 people. We'll probably ask that you get a hotel because we're on lockdown here (remember, this is not just our home anymore, it's a hospital room, and just like in the hospital, we need to limit number of visitors at any given time). If it's only 1 person then we might be able to house you here but it will have to be discussed in advance.
Friends: Call first. Text first. Contact us first so we can make sure we're ready {i.e. hand sanitizer stocked?? Will they need a gown? Will they need gloves?? Are they delivering coffee or not? ;).
Visitors bringing meals: Please know we are so, so, SO appreciative of the meals and extra help. Our hearts are swelling with joy and peace knowing you're all there to help us out. However, please know that dropping off a meal does not necessarily mean a visit with or getting to meet Chloe. This all depends on your health, our level of sanity, and where Chloe is at on her daily routine. Visits wear her out too because they throw her off her little schedule, so we have to be sensitive to her as well and not wear her out. Growing and breathing are her biggest goals, and that's hard if she's exhausted. This does not mean no visits or meeting new friends, just that you'll need to check with us first.
4a. Holidays?
It means we will not be traveling home to Iowa for months and months. Nope. Not with a baby who can barely be on the HME for 3 hours just to get home. Not chancing exposing to cold weather and the risk of sickness. It means we hermit-it-up and enjoy the holidays this year as just our tiny family of 5.5 (the nurse and cat will probably count as family on those days). Two words: Get Skype ;). We LOVE to skype family and friends. We need to know they're still there supporting us and cheering us on even though we can't always have them here. We'll encourage any family and friends to try setting up routine weekly skype dates.
Please know this does not mean we want to be left completely alone. We need and crave interaction. We pray this is for a short time and that we can continue regular visits and playdates soon. We pray that if it is a good day for all that we would be able to get out, to meet a new friend of Chloe's, to have little friends over for playdates with the kids, or to send our kids out for a playdate. Our hearts crave "normal", but there will be a transition from hospital to home, and for Chloe's health, we do not know how many days, weeks, months this will take, especially since this is cold and flu season upon us. Please do not leave us completely alone~text. Call. Check in. Email. Facebook us. Message us. Remind us you're there.
5. How is Chloe doing with everything else?
Eyes-follow up with eye clinic at some point. Doing good. Might need minor surgery in future. Will most likely mean glasses when she's a bit older.
Ears-Moderate to Severe hearing loss, mainly due to how she's fearfully and wonderfully made, although some of it could be caused by fluid in her ears due to her cleft palate. She might need tubes to help with this until her cleft palate is fixed (around 1 year old). Sometime this week we'll do molds for her hearing aids. She can hear, but it's like the teacher on Charlie Brown. It's muffled and cloudy and because she's a baby, our language is unknown. It's like Isaac shouting downstairs from upstairs that he needs more TP and me hearing him but can't understand what he's saying. Sometimes it startles her if we're talking by her and she is asleep and didn't know we're there. Music, however, soothes her. We this think is because she can understand that it's a repetitive melody vs. hearing our voices and not knowing what exactly we're saying. Need to get ipod and speakers for her bed so that she can have music throughout the day and with her naps. She'll be getting hearing aids in the next 3-6 weeks, and will wear them whenever she's awake (they come off for naps and nights).
Club Feet-the right foot is still only needing physical therapy (PT), while the left one will have a splint. She also wears a 'soft splint' on the right foot to keep it from being able to bend too far upward and back. She wears her splints at the same time-one for four hours, off for four hours, off at night. We're waiting to fix her left club foot until she's bigger and more stable from heart surgery as she needs off her blood thinners for that surgery (they slice the achilles tendon and then have it grow back and casting during this time).
Heart-stable enough to bring her home. Doing good. No more random desatting episodes. She still takes a tiny dip from time to time if she needs suctioned. Next surgery is the Glen and that is whenever she out-grows her shunt (hoping not till spring). She'll be closely monitored here at home by nurses and us and also by frequent (every 2 weeks-ish) appointments back in KC through their CHAMPS program.
Lungs/Respiratory/Trach-her lungs are still healing from all those months of desatting and lower oxygen to them. She's working hard to wean off her vent. She's a ROCKSTAR. She's currently so low on vent settings that all she needs is a tiny bit of positive pressure so that when she exhales her lung doesn't close in (think sucking air out of baggie), but enough pressure left to keep her lungs open when she exhales. This is mainly the ONLY thing she needs her vent for these days. She'll work on weaning off vent when she's home, which includes wearing a little piece of plastic similar to her HME that moistens the air (has filters on the end) but it literally is just a piece of plastic stump so to speak hooked on the end of her trach meaning no tubes. She'll gradually work toward being on this for minimal times throughout coming days and weeks until she weans off the vent and only needs those. To keep the air moist and not dry (think of how your body gets in the winter dry air and breathing issues it causes), she'll always wear that piece if she's off the vent but until she can no longer have her trach in, which will be around age 3 or 4 depending on when her last heart surgery is. In other words, she might not need her vent and tubes for much longer, but we need to keep that trach in place for a few years. It's what provides her stable airway for all her surgeries as well.
*A note on her trach and vent. Yes, technically it is life support. We have a baby on life support here in our home. Many are asking and concerned about how long she'll have to be on this "life support". But remember, she's not a vegetable. She's doing amazing. She's learning and growing and gaining strength and reaching her own set of milestones. She's barely on any settings for her vent, only enough to give her a bit of umph after she takes breaths. Her trisomy has given her a floppy airway, but that doesn't mean in time and growth it won't heal. We've had some refer to her vent as life support and it makes us feel uncomfortable, like we've made drastic and bad decisions to keep our daughter alive. Please know that it was not an easy decision to put her on the vent, but it was a very much prayed about and well informed decision, and for those that do not know or are not familiar, many, MANY babies and kiddos are on trachs and vents as they grow and to help them breathe and grow so that one day they can be off of them. You've seen her smile with it ;). You've seen her grasp it for comfort when she's trying to sleep. It's becoming her new security blanket or taggie. It's a part of her now, and it's not so scary to us. Learning the settings and controlling it-yes, very scary. But the actual idea of it is no longer as intimidating. And it's ok to stare, but ask questions while you do. Remember, it does not hurt her and her ties are not choking her. It's new and different and at times uncomfortable, but she is not in any pain with it. Please do not judge our decision, especially if you are unfamiliar with what a trach and vent are. We would love for you to learn beside us. We were intimidated by it at first as well, but we're learning and becoming more relaxed by asking questions. And saline bullets to flush the suction on it are like little mini squirt guns ;). I only speak from experience of accidentally shooting one of our primaries ;).
Kidney-so far, so good. She's on blood pressure meds as needed. She is on a diuretic to keep fluid off her (2x per week). This helps her pee off any extra fluids. Pray she never gets UTI's as any infection to her kidneys causes trouble and risks.
6. What's life like with a trach baby at home?
Yet to be figured out. However, it's surreal to hear that we need to have a 24hr pharmacy, that we need to inform our local ER of her condition, that we have to call local EMS and make sure they're aware of her, that we are asking various friends in different neighborhoods if in case of power outage, can we come crash any time day or night with her because she needs her ventilator and monitors plugged in {and because if not, then we camp out at the ER until our power is back on}, that we need to be getting a landline installed this week instead of just our cell phones, Gone are the days of just running an errand, going to Target, even just going to church will look different and present its own set of crazy logistics.
It's about being trained to know what to do in any circumstance. It's about knowing that it's ok to say no to visitors and help if they're sick. It's about asking for help when we need it. It's about relying on so many others other than ourselves to get us through this. It's about learning to play well with others {new nurses are intimidating and we're in mama/papa bear protection overdrive right now}. It's about being Chloe's biggest advocate in all of this.
I'm sure there are still many questions, and we'll try to address them in coming days and weeks, but these are the most popular asked and this helps us to not have to repeat ourselves because she's so complex and it's wearing. But also, don't be afraid to ask any questions. Just might help us if you email them or text them to make sure we have time to adequately answer them for you. Ask about her trach. Ask for pictures. Ask about ventilator. Ask about how she's doing each day. Ask about PT/OT. Ask whatever you'd like. We're open to discussion and are huge fans in helping others understand the uniqueness of Chloe. Just know we might not be able to respond immediately.
There are many unknowns and fears and worries and anxieties we still have surrounding all of this, but cannot all be addressed in one packaged blog post. We'll reveal those and how the Lord is taking us through them in future posts.
And in the meantime, we'll rest knowing He's got this. He's been with us this far. He's been with us since December when this all began. He was there the day He created her within me. We will continue to follow on this journey. We will continue to go wherever He leads.
Saturday, September 20, 2014
CHLOE is COMING HOME!!!!!!
Chloe is COMING HOME!!!!
Incase you haven't heard the news, we had our pre-discharge meeting last Wednesday, and then a whirlwind began when the home vent team decided on September 29th, 2014 at 11:30am that our sweet girl will breathe in earthly air, listen to the birds tweet, and feel the warmth of the sun on her precious and delicate skin.
The last few days have been crazy, and our minds are reeling with information and planning. Because of that we haven't posted in a while. So consider this the first of many posts though, including what we'll expect bringing her home, becoming hermits (our attempt to be germ free for Chloe), and a list of most asked questions and our attempts at answers.
But for now, let's just celebrate. We'll worry about those questions and thoughts and fears and concerns tomorrow. Tonight, we'll just celebrate that we're bringing our baby girl HOME.
And that means I've been nesting. Just a bit. Ok, a lot. A ton. This house can't be perfect enough for our sweet pea. We've been busy trying to get everything set up so that one week from this coming Monday we can walk through the doors, change her diaper, check her settings, and sink into our big comfy chair with our baby in our arms and. just. be.
With our other two children, I greatly enjoyed nesting and setting up the nursery. This, however, will be a bit different. It's not a nursery; it's a living room. It's not a baby's room; it's a NICU room set up in our home. It's not all plush stuffed elephants and soft rugs anchored under big cribs; it's a a feeding pump on a hospital pole, a ventilator, an apnea monitor, a pulse ox machine...
But here's our attempt to make it feel as much like home for her (and us) as possible.
Incase you haven't heard the news, we had our pre-discharge meeting last Wednesday, and then a whirlwind began when the home vent team decided on September 29th, 2014 at 11:30am that our sweet girl will breathe in earthly air, listen to the birds tweet, and feel the warmth of the sun on her precious and delicate skin.
The last few days have been crazy, and our minds are reeling with information and planning. Because of that we haven't posted in a while. So consider this the first of many posts though, including what we'll expect bringing her home, becoming hermits (our attempt to be germ free for Chloe), and a list of most asked questions and our attempts at answers.
But for now, let's just celebrate. We'll worry about those questions and thoughts and fears and concerns tomorrow. Tonight, we'll just celebrate that we're bringing our baby girl HOME.
And that means I've been nesting. Just a bit. Ok, a lot. A ton. This house can't be perfect enough for our sweet pea. We've been busy trying to get everything set up so that one week from this coming Monday we can walk through the doors, change her diaper, check her settings, and sink into our big comfy chair with our baby in our arms and. just. be.
With our other two children, I greatly enjoyed nesting and setting up the nursery. This, however, will be a bit different. It's not a nursery; it's a living room. It's not a baby's room; it's a NICU room set up in our home. It's not all plush stuffed elephants and soft rugs anchored under big cribs; it's a a feeding pump on a hospital pole, a ventilator, an apnea monitor, a pulse ox machine...
But here's our attempt to make it feel as much like home for her (and us) as possible.
Friday, September 5, 2014
The Joy of the Lord is Our Strength
Tonight my heart transitions from the joy and laughter of the day with my oldest littles, filled with playing and birthday donuts and trip to the store and wrestling and tickling and book reading and playtime and snack time and failed mini golf attemps and lego building and princess playing...
...to tomorrow. It transitions to the day a year ago when I saw two pink lines and knew we were expecting for the fourth time. I tested so much that week that I had made my husband nervous about how much money we'd spent on plastic sticks. I convinced myself there was a faint line four days before I should have actually tested. I just knew. And yet, I was still in shock that it was for real.
A year ago tomorrow, I went to the doctor for a blood test and had that nerve wracking moment where you wonder if they'll look at you like an idiot and tell you it's negative. But it was positive. And I was in shock. We've always wanted a big family, but our dreams were rocked after our first, Canaan, was a miscarriage. But we were here again...growing our family...and I couldn't stop smiling on my way home to tell Alan.
Oh the joy that surrounded that day...we skyped my mom that afternoon, and had written on the chalkboard behind on the wall each child's name and birthday, and by Chloe's put Baby 3 Due May 18. But we didn't tell my mom. We waited until she noticed. It didn't take her long, but she was shocked and elated.
But for some reason...I'm having a hard time with this tonight. And there are tears.
Is it because we didn't get what we thought we would in the end? A perfect pink bundle to bring home? Because that's exactly what we got, she's just not home yet. It's just that our idea of perfect and society's idea of perfect isn't the same, because the world told us to abort, but we knew she was worth it.
Am I grieving the loss of what I thought life would be like with three kids? Because if I am, then I'm not being thankful for this amazing, gentle, quiet gift He's placed in our lives, and the awe of what life with three littles, one of which with special needs, will be like. And that it'll be good. Most likely, better than we ever could imagine.
Am I crying because I'm scared-because when I originally saw those two pink lines I knew what to expect, what it would be like, what another c-section would entail, what sleepless nights and nursing attempts would again be like, but now to not know what any of this bringing her home stuff will look like and doing it on our own and with nurses here...am I that scared? Terrified is a better word. Because if so, then I'm not trusting in His amazingness. New word: Amazingness. I'm not trusting that Jesus is going to bless us with the knowledge we'll need, the medical skill we'll aquire, the wisdom to know how to care for her, the discernment to choose the right nurses.
But would I do it again? Would I do all of this again if I knew the outcome? If I knew the worries, the anxiety, the scary pregnancy, the fear every single day that I might lose her after that 19 week ultrasound, the many weekly ultrasounds where I held my breath waiting to know if she was still ok, the sleepless tear filled nights, the hard questions, choosing to give her life even though we knew the risk of stillbirth, the days of stress eating me away so that I felt as if I wasn't fully there and present for my littles and my husband that needed me, the specialists, the trips to KC, the childcare, the roller coasters, the three coding events, the chest compressions, the tiny hand gripping my pinkie, the smiles, the diaper changes around numerous wires, the surgery consents and risks, the raised eyebrows in great approval of us stroking her fine and delicate hair, the tiny sigh of comfort during trach care, the creation of a nursery within our living room, the backaches from NICU rocking chairs and PICU couches, the amazing nurses, the intelligent doctors that make me feel pint sized and in awe of their extreme knowledge and skill, the question marks, the snuggles, and oh my word the elephants...
the not knowing what every tomorrow holds for her in our lives...
Yes.
In a heartbeat.
"Taste and see that the Lord is good." Psalm 34:8
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." James 1:2-4
"Take, my soul, thy full salvation;
Rise o're sin and fear and care;
Joy to find in every station.
Something still to do or bear."
Henry Francis Lyte "Jesus I My Cross Have Taken" {vs. 5}
So through writing my thoughts out here tonight, and praying my way through this, the tears have faded, and once again I am joyful and hopeful and blessed. The video below came to mind. It's a favorite and one I know we've posted before, but begs to be remembered and watched again.
I am thankful for those two pink lines. Will I still struggle tomorrow though...I don't know. But now, right now, I'm filled with joy and hope. Not happiness. Joy. Not sorrow, but hope.
"We must wrestle for our blessing. We must fight for our joy."~Rend Collective
Praise God from Whom all blessings flow.
Wednesday, September 3, 2014
Though I Walk Through The Valley
We arrived in the PICU {Pediatric Intensive Care Unit} last Wednesday because Chloe finally got her designer heart {aka shunt put in}. We were originally told about 2 weeks healing time here, then back up to the NICU. But the NICU is on overload these days, so even though she's been ready to go back up since last Sunday {a surprising 5 days after surgery as opposed to 2 weeks}, here we still are.
But that's ok. Because she's gotten fiesty on us again. Just like she was fiesty a week ago on us...
Because with Chloe, nothing is easy...
I'm not even sure how to process the events of one week ago today. I held her sweet little warm body against mine just hours before her heart surgery. I took a picture of her so I'd have one last image of her perfectly pink skin before another scar is added. I delicately helped with her trach care and I cut a cute Mepilex heart to go around her g-tube. I cried after we walked away and left her in the care of her team for surgery.
We waited in the Ronald McDonald room here at the hospital. I sketched and listened to music. Alan read, because that's what he does to destress. He reads. He endlessly upon endlessly reads. And I feel less scholarly beside him and finally ask what he's reading so intently and he responds, "Calvin and Hobbes."
We watched her cardiac nurse practitioner, whom we grown to love and joke with and fear with and rejoice with, walk through the doors, a tired, weary face, and our hearts drop to our feet, only for her to then sigh and say all is going well. That they've gotten the lines in and made their incision. We wait again, and 45minutes later, she returned and sighed again and said all is well, let's get us to the PICU waiting room because they're closing her up and she's almost done.
We were ushered by her down to the PICU waiting room, took a seat, and I fell asleep in the chair, the adrenaline from the morning wearing quickly now that I knew all was ok. After what seemed like forever, our nurse came rushing in, not to tell us Chloe was back in her room, but to tell us that she just got a call that they needed her back asap. She left. That was that. No additional information. Praise the Lord that when we sent out a prayer request, some dear saints saw and came by immediately because, by the Lord's provision, they were only twenty minutes away. We prayed. We waited. We worried. We decided to try the heart lung bypass while they moved the shunt. It was either that option, or lose her.
By God's healing hand and grace, she survived and was off the bypass almost as soon as she was on it. Her surgery started at about 10:15am. It was after 4pm by the time we were able to be with her. A nurse took us back into the PICU, and a whole new world was before our eyes. More beeping, more monitors, new hallways, more doctors and nurses and equipment. At first glance, it felt like an emergency room with all the busyness. It scared me. It intimidated us both. And for the first time ever, we both missed the NICU. We didn't leave her room. Alan went back to sleep at the house while I slept on the couch in her new room.
Sleep is a heavy word. More like gently awake, or nearly alert. Whatever sleep I got between the hours of midnight when I finally laid my head down and closed my eyes to the bright lights still on, till about two am when I woke up and, only moving my eyes but not my body yet thanks to fatigue, watched Chloe's nurse assessing her. I noticed her sats getting low (low for her these days/post surgery is 70). I watched the monitor up on the wall from my nest on the couch. I watched the sats linger around 70....71....69...68...72. Her nurse was making sure it wasn't that the oxygen sat probe was in the wrong place or not picking up readings well.
70....68....69...68....blinking red numbers...
After assessing the situation, our nurse called in the resident to assess her. She looked her over, listened to her, considered all of the readings on the many monitors, taking careful consideration of every number in this room, then reached for her phone to call the attending.
70...71...68...69...68....67....68....
By now I was on the edge of the couch sitting up and taking everything in, with my phone in hand ready to dail Alan, but holding off because I knew he was in a deep sleep and we'd agreed I wouldn't call unless emergency.
The attending looked her over and during her assessment Chloe began to drop more...
65....66...66...65...64...63...60...56...54...
It didn't make sense. It was 2:30am when I called Alan and tried to explain to him through his weariness that I'd like him to just come sit with me till her sats came back up.
But 2 minutes later, they plummeted into the thirties and danced at 33. By now many people were in the room. I was beginning to shake. My view from the couch meant I could see and hear every single detail. Where was Alan?? Why wasn't he here yet? It felt like an eternity since I called him. It'd been two minutes.
The words I dreaded escaped the lips of the attending, "Ok, make sure we document what time the code started. Ok, start compressions..." Apparently what was happening, and is often the case in bypass patients, is that the blood vessels in her lungs were freaking out and clamping down.
I sat and shook. I watched. I recognized one of the hospital chaplains making his way through the crowd over to me. He knelt beside me, introduced himself, asked if there was anything he could do to help. I said pray. He said, "Ok, how would you like me to pray or what would you like me to pray for?" Bless his heart...he must have been blind.
After he prayed, I tried calling Alan, but no answer. I texted but no response. Surely he would be there soon...and finally, after an eternal 15minutes, he was there, groggily by my side.
I sat and shook. I watched the monitors. I was on high alert. I know enough now to listen well and know exactly what they were doing when, or at least pay enough attention to know what they were doing when far before the doctor had time to come talk to me. They were giving her a treatment through her vent to help her lungs relaxed and breathe. Her sats were up and staying up. Her heart rate never changed.
I knew this was the third time in her tiny life she'd coded and needed compressions. I knew this could be her last breath. I prayed that His will be done, but if possible, could this cup pass; would the Great Physician please heal her now...I wasn't ready to let her go. Not by a long shot. But I knew it was a possibility...
But the Lord stood with me and strengthened me. ~2 Timothy 4:17
He saved her. Again. She fought and won. But it scared us. To the core.
In the days that have followed...I'm not exactly sure how to sum them up. Weary. Tired. Worn. People keep saying we look tired and to get sleep, but we have been. We've actually been getting 8+ hours of sleep since Friday night. We haven't had a full nights sleep in nearly a month. We take naps. We rest. We get out a bit for an hour or two. This isn't lack of sleep; it's 130 days in the NICU. Throw in prenatal testing and diagnosis, and this is what we look like after 36 weeks of this journey. This life. This road. This new road of sorts, where it hasn't even been paved yet because there aren't many like Chloe. This road where, right now, it's still dirt and pebbles and rocks that tear up our shoes because not many others have blazed this trail ahead of us yet...
By Sunday she was doing so good that they really wanted to get her back up to the NICU, but there were no beds available. By Monday, same story. I got to hold her. I cuddled her broken body, gently and ever so carefully. I was terrified that my touch would hurt her, and yet so anxious for her skin to be next to mine, and her chest rising and falling next to mine. Her tower was coming down. Her feeds were coming up. She was doing amazing and smiling and grasping our hands and making more motions/movements. When I left last night, my friend and I were playing with her, talking to her, making eye contact with her.
I felt entirely comfortable leaving her for the night. So comfortable that I stayed up till 2am cleaning out our room at the Ronald McDonald house because she's so close to coming home that we're trying to move out everything from the last 18.5 weeks. We've lived here longer than a semester. It's like cleaning out a dorm room, but more like a dorm room that housed little ones as well. It's as if we're moving our family out of a one bedroom apartment. We didn't even have enough totes or bags because we left that at home, not thinking we'd be taking anymore long weekends home where we'd need to give up our room because surgery wasn't supposed to be scheduled till September. But at this point, we're aiming for 3 day weekends at home now until she comes home, so time to start living out of suitcases. We ended up running to Target yesterday to purchase totes. I cleaned until I dropped. We moved the beds back from when the kids were falling out of them and we created the monster-king-sized-bed while they were with us. Now there are two separate beds again. The furniture is all back in place. It feels bare...and weird...and exciting to be moving forward...and bittersweet at what this tiny room held...
...It's where I healed from childbirth.
...It's where we cried in each other's arms.
...It's where I hid in the shower in the middle of the night on week 4 to cry so that my sobs wouldn't wake the kids.
...It's where we played games and colored and watched movies and told stories.
...It's where we complained that there was never enough room in the bathroom for 2 adults and 2 little creatures at one time.
...It's where we gave thanks for the space He provided.
...It's where we hung scripture verses on the wall and taped a calendar up to mark off the days.
...It's where we consoled our children's weariness.
...It's where we hugged and tickled and played.
...It's where we were a family through the heart of all of this.
...It's our second home, or our "other home, the McDonald House" as Abi called it.
...It's where little fingers pushed Floor 3, and then raced off the elevator to room #36, tripping and skinny toddler knees along the way.
And then there's today. When we were woken up at 7am to a call saying her heart rate kept dropping and they weren't sure why. That there's a possible clot in her PICC line. That she needs a blood transfusion. And I wonder why I even bothered cleaning and packing up our so-called apartment because I knew this was Chloe and this was too good to be true that she was doing so well, and I'm remembering that I'll need to talk to the house manager, the one I spoke with last night telling her our room would be available as of Thursday and I'd need a different one when I get back on Monday, and realizing that now...that most likely won't be the case. But they say they're working on it and they'll look at the PICC line and decide how to best break up the clot and then possibly remove the line. And she's satting good. And her HR is better. And the doctor said hopefully we'll have her back to how she was 24hrs ago soon. And we pray that's the case.
All of this is a journey. A roller coaster. A whirlwind.
And the leaves are about to turn. And it's coming on fall. And soon there will be a brisk morning chill.
And I wonder how much longer...
And we start trading off weeks...one of us here with Chloe, the other home with the kids for a shot at consistency with them...
And I pray she continues to fight.
And I pray for wisdom and knowledge for her doctors. And I pray we stay healthy through all of this. And I beg the Lord to let me know if we're doing ok in all of this--is this how He planned we'd get through this?? Have we honored Him? Have we obeyed?? Have we trusted each step of the way??
And I rest knowing that He is in control.
But that's ok. Because she's gotten fiesty on us again. Just like she was fiesty a week ago on us...
Because with Chloe, nothing is easy...
I'm not even sure how to process the events of one week ago today. I held her sweet little warm body against mine just hours before her heart surgery. I took a picture of her so I'd have one last image of her perfectly pink skin before another scar is added. I delicately helped with her trach care and I cut a cute Mepilex heart to go around her g-tube. I cried after we walked away and left her in the care of her team for surgery.
We waited in the Ronald McDonald room here at the hospital. I sketched and listened to music. Alan read, because that's what he does to destress. He reads. He endlessly upon endlessly reads. And I feel less scholarly beside him and finally ask what he's reading so intently and he responds, "Calvin and Hobbes."
We watched her cardiac nurse practitioner, whom we grown to love and joke with and fear with and rejoice with, walk through the doors, a tired, weary face, and our hearts drop to our feet, only for her to then sigh and say all is going well. That they've gotten the lines in and made their incision. We wait again, and 45minutes later, she returned and sighed again and said all is well, let's get us to the PICU waiting room because they're closing her up and she's almost done.
We were ushered by her down to the PICU waiting room, took a seat, and I fell asleep in the chair, the adrenaline from the morning wearing quickly now that I knew all was ok. After what seemed like forever, our nurse came rushing in, not to tell us Chloe was back in her room, but to tell us that she just got a call that they needed her back asap. She left. That was that. No additional information. Praise the Lord that when we sent out a prayer request, some dear saints saw and came by immediately because, by the Lord's provision, they were only twenty minutes away. We prayed. We waited. We worried. We decided to try the heart lung bypass while they moved the shunt. It was either that option, or lose her.
By God's healing hand and grace, she survived and was off the bypass almost as soon as she was on it. Her surgery started at about 10:15am. It was after 4pm by the time we were able to be with her. A nurse took us back into the PICU, and a whole new world was before our eyes. More beeping, more monitors, new hallways, more doctors and nurses and equipment. At first glance, it felt like an emergency room with all the busyness. It scared me. It intimidated us both. And for the first time ever, we both missed the NICU. We didn't leave her room. Alan went back to sleep at the house while I slept on the couch in her new room.
Sleep is a heavy word. More like gently awake, or nearly alert. Whatever sleep I got between the hours of midnight when I finally laid my head down and closed my eyes to the bright lights still on, till about two am when I woke up and, only moving my eyes but not my body yet thanks to fatigue, watched Chloe's nurse assessing her. I noticed her sats getting low (low for her these days/post surgery is 70). I watched the monitor up on the wall from my nest on the couch. I watched the sats linger around 70....71....69...68...72. Her nurse was making sure it wasn't that the oxygen sat probe was in the wrong place or not picking up readings well.
70....68....69...68....blinking red numbers...
After assessing the situation, our nurse called in the resident to assess her. She looked her over, listened to her, considered all of the readings on the many monitors, taking careful consideration of every number in this room, then reached for her phone to call the attending.
70...71...68...69...68....67....68....
By now I was on the edge of the couch sitting up and taking everything in, with my phone in hand ready to dail Alan, but holding off because I knew he was in a deep sleep and we'd agreed I wouldn't call unless emergency.
The attending looked her over and during her assessment Chloe began to drop more...
65....66...66...65...64...63...60...56...54...
It didn't make sense. It was 2:30am when I called Alan and tried to explain to him through his weariness that I'd like him to just come sit with me till her sats came back up.
But 2 minutes later, they plummeted into the thirties and danced at 33. By now many people were in the room. I was beginning to shake. My view from the couch meant I could see and hear every single detail. Where was Alan?? Why wasn't he here yet? It felt like an eternity since I called him. It'd been two minutes.
The words I dreaded escaped the lips of the attending, "Ok, make sure we document what time the code started. Ok, start compressions..." Apparently what was happening, and is often the case in bypass patients, is that the blood vessels in her lungs were freaking out and clamping down.
I sat and shook. I watched. I recognized one of the hospital chaplains making his way through the crowd over to me. He knelt beside me, introduced himself, asked if there was anything he could do to help. I said pray. He said, "Ok, how would you like me to pray or what would you like me to pray for?" Bless his heart...he must have been blind.
After he prayed, I tried calling Alan, but no answer. I texted but no response. Surely he would be there soon...and finally, after an eternal 15minutes, he was there, groggily by my side.
I sat and shook. I watched the monitors. I was on high alert. I know enough now to listen well and know exactly what they were doing when, or at least pay enough attention to know what they were doing when far before the doctor had time to come talk to me. They were giving her a treatment through her vent to help her lungs relaxed and breathe. Her sats were up and staying up. Her heart rate never changed.
their view...
...my view. not only could i see what was going on, but worried faces of the physician and nurses...
I knew this was the third time in her tiny life she'd coded and needed compressions. I knew this could be her last breath. I prayed that His will be done, but if possible, could this cup pass; would the Great Physician please heal her now...I wasn't ready to let her go. Not by a long shot. But I knew it was a possibility...
But the Lord stood with me and strengthened me. ~2 Timothy 4:17
He saved her. Again. She fought and won. But it scared us. To the core.
In the days that have followed...I'm not exactly sure how to sum them up. Weary. Tired. Worn. People keep saying we look tired and to get sleep, but we have been. We've actually been getting 8+ hours of sleep since Friday night. We haven't had a full nights sleep in nearly a month. We take naps. We rest. We get out a bit for an hour or two. This isn't lack of sleep; it's 130 days in the NICU. Throw in prenatal testing and diagnosis, and this is what we look like after 36 weeks of this journey. This life. This road. This new road of sorts, where it hasn't even been paved yet because there aren't many like Chloe. This road where, right now, it's still dirt and pebbles and rocks that tear up our shoes because not many others have blazed this trail ahead of us yet...
By Sunday she was doing so good that they really wanted to get her back up to the NICU, but there were no beds available. By Monday, same story. I got to hold her. I cuddled her broken body, gently and ever so carefully. I was terrified that my touch would hurt her, and yet so anxious for her skin to be next to mine, and her chest rising and falling next to mine. Her tower was coming down. Her feeds were coming up. She was doing amazing and smiling and grasping our hands and making more motions/movements. When I left last night, my friend and I were playing with her, talking to her, making eye contact with her.
I felt entirely comfortable leaving her for the night. So comfortable that I stayed up till 2am cleaning out our room at the Ronald McDonald house because she's so close to coming home that we're trying to move out everything from the last 18.5 weeks. We've lived here longer than a semester. It's like cleaning out a dorm room, but more like a dorm room that housed little ones as well. It's as if we're moving our family out of a one bedroom apartment. We didn't even have enough totes or bags because we left that at home, not thinking we'd be taking anymore long weekends home where we'd need to give up our room because surgery wasn't supposed to be scheduled till September. But at this point, we're aiming for 3 day weekends at home now until she comes home, so time to start living out of suitcases. We ended up running to Target yesterday to purchase totes. I cleaned until I dropped. We moved the beds back from when the kids were falling out of them and we created the monster-king-sized-bed while they were with us. Now there are two separate beds again. The furniture is all back in place. It feels bare...and weird...and exciting to be moving forward...and bittersweet at what this tiny room held...
...It's where I healed from childbirth.
...It's where we cried in each other's arms.
...It's where I hid in the shower in the middle of the night on week 4 to cry so that my sobs wouldn't wake the kids.
...It's where we played games and colored and watched movies and told stories.
...It's where we complained that there was never enough room in the bathroom for 2 adults and 2 little creatures at one time.
...It's where we gave thanks for the space He provided.
...It's where we hung scripture verses on the wall and taped a calendar up to mark off the days.
...It's where we consoled our children's weariness.
...It's where we hugged and tickled and played.
...It's where we were a family through the heart of all of this.
...It's our second home, or our "other home, the McDonald House" as Abi called it.
...It's where little fingers pushed Floor 3, and then raced off the elevator to room #36, tripping and skinny toddler knees along the way.
And then there's today. When we were woken up at 7am to a call saying her heart rate kept dropping and they weren't sure why. That there's a possible clot in her PICC line. That she needs a blood transfusion. And I wonder why I even bothered cleaning and packing up our so-called apartment because I knew this was Chloe and this was too good to be true that she was doing so well, and I'm remembering that I'll need to talk to the house manager, the one I spoke with last night telling her our room would be available as of Thursday and I'd need a different one when I get back on Monday, and realizing that now...that most likely won't be the case. But they say they're working on it and they'll look at the PICC line and decide how to best break up the clot and then possibly remove the line. And she's satting good. And her HR is better. And the doctor said hopefully we'll have her back to how she was 24hrs ago soon. And we pray that's the case.
All of this is a journey. A roller coaster. A whirlwind.
And the leaves are about to turn. And it's coming on fall. And soon there will be a brisk morning chill.
And I wonder how much longer...
And we start trading off weeks...one of us here with Chloe, the other home with the kids for a shot at consistency with them...
And I pray she continues to fight.
And I pray for wisdom and knowledge for her doctors. And I pray we stay healthy through all of this. And I beg the Lord to let me know if we're doing ok in all of this--is this how He planned we'd get through this?? Have we honored Him? Have we obeyed?? Have we trusted each step of the way??
And I rest knowing that He is in control.
{2 days post op design while resting by her bedside}
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