Dear Hospital Mom,
I see you, hospital mom.
I see you and your freshly birthed body, being wheeled down to the NICU to see your unexpected journey for the first time.
I see your tired eyes from watching numbers all day long.
I see you here, again, for the 8351st appointment for your toddler and your frustration that ‘they just can’t figure out what’s wrong’ with your sweet baby.
I see you coming in and out of the Oncology department, trying to give every ounce of joy left in you, to your bald and sick 7 year old.
I see your tears and your anger and your thankfulness mixed with frustration and your moments of joy amidst the trial.
I see you sitting by the bedside of your 16 year old in palliative care- where you’ve been for the last 8 years.
I see you changing your paralyzed toddler’s position every 2 hours in ICU, just to give her the best spot to breathe.
I see you making friends with nurses and therapists and specialists- these angels that care for our babies.
I see you snuggling your 10 year old boy, in his little bed, singing for him again.
I see you, fighting for your kid’s very life- fighting for your own life too.
I see you hospital mom, and can I just say- YOU’RE MY HERO.
You’re my hero because you got out of bed this morning.
You’re my hero because you do ALL THESE THINGS, and so much more.
You’re my hero because you are your kid’s biggest and best advocate.
You’re my hero because at the same time of being a hospital mom, you’re a soccer mom and a ballet mom and a school drop off mom and a teenaged-drama mom and a cheerios-on-the-floor mom. You’re a wife and a sister and a friend and a co-worker that misses working. You’re so much more too.
You’re my hero because you aren’t doing it ‘right’, you aren’t doing it ‘wrong’, you’re just doing IT. You’re going through the motions because that’s all you can do.
You’re my hero because you have given SO MUCH of yourself and put your life on hold.
I see you, hospital mom.
And I champion you. I encourage you to keep it up. Get up AGAIN. Push hard AGAIN. Show up AGAIN. Choose joy AGAIN. Do another appointment, give another med, challenge another diagnosis.
I say ‘KEEP GOING, KEEP GOING, KEEP GOING, KEEP GOING, KEEP GOING….’.
I see you, hospital mom. You’re OUR hero, and I wish I could buy you a coffee (make it a Venti), AND a massage today ❤ May you know how amazing you are XO
I felt like this week, our family life went to a ‘whole nutha level’- between appointments for Judah, a speaking engagement for Koby, a speaking engagement for me, and attending a conference that is very dear to my heart- life was FULL.
But I realized something so amazing amongst the craziness of it all- my marriage is actually AWESOME. HA! Confession- I don’t always realize this fact… sorry Koby… but I was so in awe of my husband this week, and I felt to BRAG ON HIM a bit over here in the blogosphere… so here we go-
3 of the (MANY) reasons why I love my hubster:
1- He leads our family
If you know anything about Koby, you know that he’s a leader, and he’s passionate about leadership. I see this daily in our family life- he leads our schedule, he leads our spiritual life, he leads our finances, he leads our direction. OF COURSE he leads by God’s grace, and God’s leading, and YES he gives me huge input- we are a TEAM, but its so amazing how I can fully FULLY lean on him and into him to lead. I love it.
2- He celebrates the WOMAN in me
Koby often refers to me as a SUPERHERO, with SUPERPOWERS (and ladies… I might just do a post on this!!!)- and reminds me how great of a mom I am, especially in those moments where I sure as heck don’t feel like one. He values my nature to nuture, and encourages it. He realizes what I contribute to our household and our marriage and he does a really good job at fanning that into flame. I feel empowered by him, to do all that I am called to do- I realized this when I asked him last week to help me with the messages I was preparing to speak. The guy is CRAZY talented and could have just written up his own messages and told me how to preach them, but he ENCOURAGED ME, TO BE ME (and helped me ‘land the plane’).
3- He works HARD- in the ‘field’ and in our home
This last season of our lives has been so interesting to say the least, and having Koby at home full time on paternity leave has been a blessing, when I was prepared for it to be so tough. He works so hard to provide for our family wherever and whenever he can and is working hard for our next step as a family. He also works so hard in our home- some people that we’ve had visit are so shocked when they see how involved Koby is with our kids, especially with Judah. This man of mine can change a Gtube like no one.
So to wrap this first #MarriageMonday post, can I just say a HUGE thank you to my man? I adore you Koby Liesch. I can’t believe all that we have accomplished and gone through in our little almost-8-year-old marriage… it makes me so excited for MORE.
I took part in this little book study once- the kind that had a work book to pair with the book itself… Long story short, I realized that my life had a theme (the book and work book was Storyline, by Donald Miller).
Back when I was growing up, I was your average small-town, Catholic, goodie-goodie. So naturally, I never thought I would end up in the lifestyle I did at just 19 years old (I’ll probably post about that sometime…).
I never thought I would move away from home at 19- let alone 4 provinces away.
I never thought I would work for a church or be involved in ministry.
I never thought I would marry a tattooed, metal-music-loving, dark-haired British-Columbian, who might I add, is 4 years younger than me!
I never thought I would fight for my baby’s life, more than once.
So there’s the theme- perhaps you can relate?
So much of life’s twists and turns are never what we thought. Maybe it’s who we never thought we’d be, or where we never thought we’d go, or say, or do.
This last one though, is throwing me for a loop. Sheesh I tell ya.
I always dreamt of having more than 3 kids. So when koby approached me about continuing our family, when Jed was about a year and a half, I was like YES SIR!!!! I was so excited for number 4!!!
I guess I forgot earlier, that I also never thought I would have a ‘late-term miscarriage’. I never thought I would be one of the many mama’s whose baby’s no longer had a heartbeat. I never thought I would get to go through labour, only to push forth death. I never thought I would experience that kind of gut-wrenching pain, this early in life.
And then we get pregnant again, and I can’t really seem to find that same joy that I had before. It was a bit buried under the cloud of worry and grief.
I never thought I would have 7 ER trips within a few months, and too-many-ultrasounds-to-count, before even hitting the halfway mark. I never thought I would be clinging to hope the way I had- the way I do. I never thought I would be placed on sort-of-bedrest (cause apparently they don’t really advise that anymore?), and I never thought I would cry the tears I did.
But all those unexpected things and moments and days, they somehow prepared me for the craziest ‘never-thoughts’ that I’ve had to date…
I never thought I would sit knee to knee with a Neonatologist, and have her tell me that if my baby’s heart stops, they won’t be able to do chest compressions cause he is ‘just too fragile’.
I never thought I would see my baby face to face, so early in his womb-life, and so thin-skinned and breathing only because of technology, and the grace of God.
I never thought I would be a NICU mom.
I never thought I would become friend’s with neonatologists and nurses and Respiratory Therapists.
I never thought I would shed so many tears for so many months, that the skin around my eyes literally changed.
I never thought I would make deep friendships with other mama’s that I have never even met face to face, who have experienced similar battles, who have experiened trauma.
I never thought I would be googling ‘symptoms of PTSD’, months after this miracle boy is home and in my arms.
You get the picture. Its been quite the un-expected season for us, and don’t even get me started on all the ‘I never thought I would’s’ when it comes to church life… that’ll be a whole NUTHA post in itself.
Here’s the ‘clincher’ if you will…
I never thought I would experience any of these things- I always thought I would be the one who prayed for those who went through these things. And now that I’m on the receiving end, there’s an even bigger ‘I never thought’…
I never thought I would experience SUCH GRACE.
I never thought I would witness a miracle, daily, right in front of my eyes.
I never thought I would know peace the way I know it now.
I never KNEW I could be this strong.
You see, one of the scriptures that has continued to roll around in my heart since this battle began with Judah, was this one here in 2 Corinthians 4:
7 We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure.[b] This makes it clear that our great power is from God, not from ourselves. 8 We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair.9 We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed.10 Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.
That’s what we get, when we walk through this life, hand-in-hand with Jesus! It ain’t easy, and some days are hard, yes, but READ THAT! I am feeling refined through this fire. I am noticing my fragility as a human- as a mom and a wife and a friend, and I’m leaning into Jesus like never before. His life- His grace and love and peace- is coming OUT. PREACH that.
I never thought it could be THIS GOOD- this life, these gifts. GRACE. OF. GOD.
We just celebrated a fantastic Easter weekend here in Vancouver and of course, it held a deeper meaning to us this year and we feel more thankful than ever! HELLO NEW (RESURRECTION) LIFE!
Judah’s first Easter was quite uneventful. We were able to bring him to his first church service- our friend has a new church plant in Vancouver so we knew it would be a smaller gathering and of course I kept Judah at the back… away from germs! He also got to attend his first extended-family gathering and needless to say, he was most definitely the centre of attention!
It’s been nice getting Judah out a little more here and there. We are slowly introducing him to public areas and crowds and small spaces with more people. We still need to be protective over his lungs, as a common cold could land him back in the hospital.
As I said in a few of my posts, we made it through the RSV (flu) season, without being re-hospitalized, which most Dr’s told us was next to impossible for a micro-Preemie like him… yay Judah!
Judah does get a horrible cough here and there, that lasts about 1-2 weeks. It sounds WAY worse than it actually is, so if we are ever with people who don’t know him, it’s usually quite shocking- picture an 87 year old man, whose been smoking for 50 years and has emphysema. THAT cough.
Judah will be re-admitted to the Children’s hospital at the end of May, for a 48 hour period so that they can monitor him OFF his CPAP machine, which he still wears every night. Our Paediatrician thinks that our Respirologist might just take him off ALL oxygen (😳) and see how he does! How crazy to think of summer with wayyyy less tubes!
We’ll see how he does.
We HAVE noticed that Judah has turned a corner with his oxygen requirements though. We have him in his little bouncy seat, and we’ll look over at him after a while and he is playing with his nasal prongs in his hands (monkey!). We don’t notice because his monitor hasn’t alarmed… these are all REALLY good things 🙂
Judah still sees a Physiotherapist once every 2 weeks and we are working on his neck strength and some muscle issues. I can feel my fears slipping away when I see him do simple developmental milestones… who would have thought I would cheer for my baby to bring his hands to his mouth! HA!
Judah is also up to 3-4 bottles per day, and up to 80ml’s of formula. The rest he gets all through his Gtube! Once he is off all respiratory support, we focus fully on his feeds. His team even mentioned trying solids (😳) within the next few months. It’s so crazy to me!!! I prayed for so long, many times in tears, for him to just be able to SWALLOW, and now this ❤
As for Judah’s ears, we still don’t have any clear plans. We went to an appointment last week which we thought he was going to be fitted with hearing aids, but instead they want to run more tests. He is still too young developmentally for some of the tests so it’s definitely a waiting game! I’ve decided to chill about it- I realized how I was sinking under the weight of worry but by the grace of God, we can so handle this! We should start sign language therapy with our whole family soon! And we are also starting to document a few moments here and there where Judah MAY be hearing things… prayer for these sweet ears is definitely appreciated!
So to sum it all up, it’s been so nice, yet so weird to feel like things are easing up. When you get so hunkered down in the fight, it’s hard to see that the fog has lifted, once it finally does. It’s definitely lifting folks. This kid blows me away.
I remember writing these words on his wall back in this hospital, and they still ring so true for him today…
Defy the odds…
Thanks for all your love and prayers for our boy and our family! We love and appreciate each and every one of you!
I’m so glad God created our bodies as women, to not only CARRY LIFE, but also to SUSTAIN IT. It’s miraculous really.
After exclusively and easily breastfeeding my first 3 babies, all for different lengths of time (cause each kid is different- #canigetanAMEN ), I was pretty heartbroken to hear that I obviously wouldn’t be able to breastfeed Judah when he was born, and perhaps never would be able to. So I began my pumping career on the hardest day of my life- the day he was born.
I STILL CLUNG TO HOPE, in this area too. I hoped to be able to breastfeed him one day, though his life hung in the balance. I pumped every 2 hours, 24 hours a day, for weeks. And then I went to every 3 hours for more weeks. Still, the chance of Judah being able to orally feed wasn’t coming anytime soon.
I even had to give Judah the ‘fatty-est’ milk at one point, called ‘hind milk’. It’s the milk that’s towards the end of your pumping/feeding session, and it has substantially more calories than the ‘fore milk’ that comes out first. So for 6 weeks (😳- just ask our ‘favourite’ Dr… I cried the day she told me I could stop doing this!!! HAPPY TEARS!!!)… for 6 weeks I would pump for 3 minutes, separate and label that as the ‘fore milk’ (and freeze it right away), and then pump out the rest for another 10-15 minutes and separate and label that as ‘hind milk’ (aka BUTTER/CREAM/🙌🏼🙌🏼🙌🏼). I ‘blame’ this BUTTER for my 17 pound ‘micro’-preemie. DA HECK!
It was exhausting but I kept pumping- those Lactation Consultants in the NICU became my BIGGEST encouragers not to quit!!! I eventually decreased to every 4 hours, and stopped pumping at night, which was the BEST thing for me to do. I became SO thankful that I could still provide this gift to my baby, even if it meant having to do this work… it IS work! I won’t mention the times that my kids got into trouble while I was pumping in my room either 😳😳😳. All you mamas out there who pump- MASSIVE KUDOS TO YOU!!! My heros 🙂 I will never understand why people try to belittle pumping/bottle feeding/breastfeeding…. YOU DO YOU BOO BOO… and whatever you need to do to FEED YOUR SWEET BABY, then do it ❤ And all the power to ya! *end rant*
Here’s a photo of Judah getting fed my milk through an OG tube (the little tube going in his nose 💙)
When Judah’s condition turned serious and he was transferred to Children’s, he was almost 4 months old, and still, I kept pumping. But the commute, the stress (his life was again, hanging in the balance), the new environment we found ourselves in, and yes- my gut too- I felt it was time to finally quit my ‘pumping career’ 😉
So I pumped for just over 4 months, and then began around the 5 month mark to slowly start adding formula to my breast milk which Judah had been receiving since birth (which was already being fortified with a LOT of extra stuff… #NICUcocktails).
THIS PHOTO IS MY LAST BITS. I feel so sad that this is all over. The last time I will be physically giving Judah a part of me (in that way!). I can’t tell you how thankful I am, and how amazed I am at God’s timing. The natural properties in breast milk help to protect your baby from infection, and mine has lasted us right up until the end of RSV season- how amazing is that?!!! I’m feeling extra thankful tonight… for the fact that I could pump, and the fact that my baby is somewhat (?) ‘healthy’. This LIQUID GOLD- it really is, liquid gold 💛
When nothing in your life feels easy or comfortable, and when you feel so easily frustrated at the slightest of things, perhaps you are under a bit of pressure.
These days I find myself crying at least once a day- under pressure. I’m feeling the weight of it all… caring for a chronically ill baby, whose future health in all areas is so unknown. Then there’s the other 3- all at ‘needy’ ages and all of whom are high energy and high drama. Oh and then add the fact that my husband and I are praying about our next step- the next season in our life and ministry is still unknown, however the deadline of making an actual decision is quickly approaching.
It’s all heavy. Not one bit of it feels ‘easy’ right now, and I find myself craving easy, begging God for easy, and desiring something to be easy, more than ever.
A close friend of mine encouraged me through this season to keep my heart soft and remain open. It’s naturally who I am, but in seasons like this, you can feel yourself harden. And I fight against that with every bit of me. I want to remain who God has made me to be, but also develop the muscle He’s giving me through this.
So what’s the take away- where is the hope in all of this?
Without pressure, diamonds wouldn’t exist.
Without pressing, good wine wouldn’t come from grapes.
Without grit, there would be no pearl.
Without winter there can be no spring.
Without pushing, there would be no baby.
And without buffing or polishing, the surface remains rough.
There is pain in all this pressure and grinding and pushing, but there is also hope. There can always be hope.
‘Hope does not disappoint.’ (Romans 5). This season may last longer than I anticipate, but I can STILL HOPE for a new season to come… because it will, and it does.
There is an ebb and flow to grace in all of this- you feel it when you’re on the mountain top and you feel it in the valley. It goes with you. Hope is the same- when we reach the highest peak, its hope that brought us there and when we are in the trenches, we can hope to not stay there forever.
So I’m being ground to a pulp (HA!), but I’m stuck in hope too. I’m hoping for the diamond, I’m hoping for the wine and the pearl- I’m hoping for spring (literally AND figuratively).
The bible says there is a time and a season for EVERYTHING (Ecclesiastes 3), and also encourages us to BE CONTENT with everything we have (Philippians 4) . So I’m learning (😳😳😳) not to crave the easy season, but to embrace the pressure because the outcome is so much better.
I can feel it coming though… Cause God IS hope personified, and our hope- constant and steadfast- is in Him. He is our source of hope, our sustenance, our grace… our peace.
Time is flying by!
I have a hard time wrapping my head around the fact that Judah is 7 months old, and has already been home for 5 weeks! How we longed for these days ❤
I figured it has been a while since I gave a full update on Judah, so here we go! Overall, Judah has been thriving at home. Though it is loud and crazy over here with our brood, he seemed to settle a lot after being home. We noticed changes in him right away- his heart rate seemed to decrease (he has always had a higher-than-normal heart rate due to his Pulmonary Hypertension), and we also noticed that his muscles and stiffness that he had, seemed to limber up quite a bit- all good things.
I posted the other day how I realized the perfect summary of life with Judah- it’s like having a (very) high-maintenance newborn, for months on end!!
Here’s some more details… Judah’s lung ‘help’ hasn’t changed since we got home. He is on a low amount of oxygen through his little nasal prongs during the day, and then he is on his CPAP machine at night. The CPAP is just helping his lungs to stay expanded- it’s not breathing for him which has been a frequent question posed to us. We see his lung Dr’s at children’s once a month, and when we saw them at the end of January, they were very pleased with how well his lungs are doing, especially since we are in the throws of flu season over here!
Judah does have a nasty cough. He sounds like an old man with emphysema – it’s actually the saddest sound, but we are so used to it! It’s partially because of his Chronic Lung Disease, which he is growing out of, but also because he is still getting used to bottle feeds (we are up to 40-60ml’s, 3 times a day- which his team says is really amazing!), which can cause a lot of ‘pooling’ at the back of his throat and inside his nasal passages, which creates a cough! He also deals with a bit of reflux and since we have never had a ‘puker’, this is all so new to us! #ALLLLLLthelaundry We have to set up Judah’s feeds (via a feeding pump through his Gtube) every 3 hours. His feeds take just over an hour, so we can’t move him too much during a feed- hence one of the reasons why we are so home-bound! We had switched him to feeding every 4 hours (its crazy how much difference that 1 extra hour makes- hello TIME TO SHOWER!), but just recently had to go back to every 3 to see if it helps with his reflux issues. I’m FULLY throwing a huge party on the day where we get this Gtube out! HA! Judah’s eyes are another miraculous part of his story- he will have his LAST (!!!) follow up with his Ophthalmologist this week, and if anything, she said he may be a little near-sighted. After hearing the fact that a lot of micro-preemies end up with severe vision loss, this is so amazing. He also has the sweetest big brown eyes and basically looks deep into your SOUL when he looks at you, so we are all melting all the time over here ❤ Judah’s hearing is something we are believing God for right now, and we would value your prayers for our boy in this area too. I remember in the first few weeks of Judah’s life, I would sing by his bedside and staff would comment on how his sats would be higher when I sing. So this has all been a surprise to us that we have noticed in the past few weeks that he doesn’t seem to be very responsive when it comes to sound. He has been tested this week, and there is some form of hearing taking place, but the test results were inconclusive which just means we have to test again in a couple of weeks (which to me means more time to pray!). We have always prayed for wholeness for Judah, and that nothing would ever hinder him from having a full and satisfying life. His Audiologist said that he has so many ‘qualifying’ reasons why he would have hearing loss- his ‘extreme prematurity’, his brain bleeds, and the fact that he was on high oxygen support for so long. I also know that he has a God that has already done so so many crazy miracles, so what’s one more??!!!
Judah’s only other ‘issues’ are a little bit of muscle tension, which is not only due to his ‘extreme prematurity’, but also because he was basically on bedrest for the first 6 months of his life. So we are doing some more exercises to get his back and neck (and ankles!) stronger! In due time ☺️
As you can see, life with Judah IS a lot of work (HA!), but we are so thankful for him and for the fact that we GET him! Koby reminds me a lot about how there was a time where we didn’t know if we would EVER get to hold him and here we are… and yes we do a LOT of snuggling!
We see Dr’s and specialists every week with this boy- at least one appointment every week but most weeks it’s 2 or 3. Thankfully there is a lot that is local and close to us, and occasionally we are making the trek to children’s. This is life for us right now!
So yes, Judah is amazing, and we are blown away DAILY at how far he has come. And yes, we are also tired! Haha. Caring for him around the clock, especially on nights where our home care nurses can’t come, is a little tiring. Thankfully we have only had 3 nights in a row with no nurses and though it wasn’t fun, we made it! We now have most nights of the week covered by home care nurses- YAY!!! So between Judah’s needs, and caring for the other 3, it’s a little tiring being a parent these days.. haha! But we push through- this is what the grace of God (and copious amounts of coffee) is for!!!
We really are thriving as a family and it’s just miraculous. Koby is home full time, as he is now on Paternity leave and I am SO THANKFUL- there is no way I could swing this on my own! The older 3 are all so enthralled with Judah too- it’s just the BEST being together so much.
Thank you ALL for your continued prayers for Judah and for us as a family! I know I say it a lot, but we really are so so grateful!!!