I'm Not Okay

 

Debbie Altman visiting us and she actually put Everly to sleep!

I had a visit from my pastor's wife a couple of weeks ago. During our time together she said she felt like she needed to tell me that it is okay to not be "okay" and that being a believer and having faith didn't exempt me from the emotions that go along with our circumstances. I'm not sure why but just hearing that somehow gave me permission to open up a bit more. So, here I sit, vulnerable and ready to let you in.

I'm not doing okay. I mean really not okay. Sometimes.

Some days the reality of Everly's health overtakes me. Some days the heaviness of it all consumes me. The emotional toll that it takes wears me down until I have no mental energy left. My mind has been laden with worry, my body sleep-deprived, I'm not thinking as clearly as I once did. The mental fatigue that has been building since the day of the diagnosis some 200+ days ago eventually catches up. (Even longer honestly if you go back to our prenatal story at the beginning.)

This is where it gets hard. From the outside, it looks like Everly is doing well...she's "healthy" and growing and thriving. And she is.

 

At the pumpkin patch on a nice 70 degree day in FL

But it's the other stuff that takes its toll. I have withheld discussing this for the most part because she IS here, she IS with me. I feel so incredibly guilty for that when other mamas have had to say goodbye to their precious angels. How can I possibly even verbalize my feelings when I sit holding my daughter?

I have no superhero strength. No special power to shield me from the pain. I feel it. I feel it everyday. I hurt for my daughter. I fear for her because I can't protect her. I worry because I don't know what the end will look like. I'm sad because she's uncomfortable. I'm depressed because our time may be short. I'm angry because the world doesn't stop to marvel at how far she's come. I'm confused because there's so many decisions to make for her, about her and concerning her. Are they right ones? Is the doctor telling us from the perspective of what he/she would recommend for a typical child or is it because of this label of T18 that seems to have legs and a body of its own? In this foreign world of medicine and physicians, I feel abundantly inadequate, not sure what questions to ask and what answers to accept. The emotions, feelings and strain that go hand in hand with living with this diagnosis overwhelm and consume me 24 hours a day.

 

Her 7 month birthday trip to the zoo.

Yes, I'm a believer and I trust in His sovereign plan. Yes, my faith lies in knowing that there's a better place, one that we can't even begin to imagine. I get comfort and peace from that.

But, here in my mortal, earthly body, I'm not okay. Sometimes.

The dichotomy of being joyful and celebrating the moment while mourning the reality of what is to come is excruciating.

Excruciating.

Living with this prolonged grief has taken its toll. I'm scattered. I'm forgetful. I'm all over the place. I start one task and then within a matter of time, I have three going simultaneously of which none get completed. I walk into a room completely not remembering the purpose. (Truth be told, I did this even before.) Food is my friend again. I lean on it when my heart hurts and I can't turn off the scary thoughts that find their way in. I'm completely disorganized. (A terrible pet peeve but one at this juncture seems to have no fix.) It takes every ounce of mental brainpower to pack what we need (which is plentiful) to head to a doctor's appointment or an outing, keep up with due dates and other things relating to the boys, then all the extra other stuff that, in all honesty, I can't even remember right now. This new me is not the norm. Or maybe it is the new norm?

 

Little bro playing with Everly

I live in two worlds. Thoughts of joy and happiness are just as present as those of sadness and despair. Smiles and cheers are common. But just as common are those thoughts of what is to come. Maybe not now, maybe not next year, but there is no escaping the damage done by the extra 18th chromosome. Thoughts of how she struggles and her severe and life-threatening reflux which is so awful to watch. The color changes that happen as her body convulses and tries to control the inevitable choking. Thoughts of how cardio has told us how the end will be if her heart/lung balance changes. Thoughts of liquid flooding her lungs. Thoughts of living life without her. I try, I try, to keep my thoughts on the positive, on the here and now, but everyday challenges are a stark reminder of what Trisomy 18 does to a body. How can I not think of it? I see it manifest itself in Everly day in and day out. But, alas, I must continue to try to win this turmoil of good over evil in my mind.

It does not take much for me to be brought to my knees in a puddle of tears. For some odd reason last week when I was getting my teeth cleaned (finally after skipping my 6 month visit in the spring), the minute Dr. K walked in and asked how I was doing, it nearly brought the tears on the verge of pouring over the rim. Reading other families blogs, families who have already lived an unimaginable journey, write about their life and their beloved child. Learning about the experiences of others in our small Trisomy world, yes, but also now I've been made aware of other conditions that are just as horrible. Reading about their strength, yes, but also their heartache and pain. It is real and so raw. It shakes me to the core.

How can I live without my daughter? Is it even possible? See, I haven't written or spoken about it because I know that she's still here. I thank God a million times over for that so it seems not right to contemplate the what ifs.

But, I cannot escape the reminders that every doctor visit brings, the wear on Everly's little body, the eventual outcome of Trisomy 18. I am reminded every single time hospice is at our door. It is brought to the forefront with each tube insertion, echo, EKG, therapy session. It is there. So, you see, while I live in the day to day, I am unable to escape the reality of Trisomy 18.

I need my faith. I need my friends. I need my parents. I need fun times. I need stuff that I don't even know I need.

I've found a few simple things that I have realized I "need": playing dress-up with Everly in fancy clothes, swimsuits, etc., matching headbands to outfits, taking her picture, spending time laughing with the boys, homeschooling, meeting with friends, taking Everly outside for walks, "new to us" clothes and toys off our local swap, writing on here, Everly's Facebook page, checking things off her bucket list. These are so mundane really but have been lifesavers for me. I need them like I need air. Like I need Everly.

I had a moment (well, it actually turned into an all day moment but still) a few weeks ago where I "lost" a particular Christmas sleeper on our local swap to someone else. Long story short, it sent me into a tail spin of tears and anxiety I can't even begin to explain. I feel like I need to make this Oct/Nov/Dec just crazy special in all the ways I would over time if not in this current situation. But I need to do it at an accelerated pace. And somehow losing this article would preclude a special time from occurring. Did it make any logical sense? Of course not. But, logical or not, it was very real to me in that moment. (Thank you, friend, for talking me off the ledge that day AND heroically getting that sleeper!)

I'm really not okay. Sometimes.

I'm so thankful to have my faith. I know that God has Everly and our family in His hands. I do rely on Him and I do cry out to Him. Please know that while I am "not okay" sometimes, I always have Him and His promises to never forsake me.

What is the takeaway from all of this? I guess it's to remember those in a season of prolonged grief. That just because things look okay from the outside, doesn't mean they are and most likely, they aren't okay. At least sometimes. Love on them. Call them. Message them. Spend time with them. Give them grace. They have much on their mind that others simply can't grasp. Know that they won't be able at this time to offer much in return. Be understanding. Be flexible. Be compassionate. Really, just love them.

Oh, and by the way, I will be okay.

John 3:16 - For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.

With love and appreciation,

Crystal

How is Everly Doing?

Working on our crawling stance here

Well, I've written about this and that and figured it was time to give you a quick glimpse again at the overall picture with Everly.

Stats: She was recently at 11 pounds, 1 ounce but has since dropped to 10 pounds 14 ounces. Hoping this is temporary and she climbs right back there again soon. She's grown a bit, too. She's now 23 inches long. She just received her first of 6 or 7 Synagis shots for the yuck season to help fight upper respiratory infections. She also received the flu vaccine as did her brothers and now we (and my parents) will be getting them.

Cardio: No change since her 5 month visit. All is the same which means that her pulmonary hypertension is balanced by the hole in her heart (VSD). We go back again for our monthly check next week.

 

Happy 7 months birthday!

Feeding: She continues to play around with the special bottle we have for her as well as the pacifiers. She clearly does like them and responds immediately to them. However, we can't get her to suck them at all. She continues to take licks of baby food but nothing more than that. She still eats every three hours around the clock at 8, 11, 2, 5 and then repeats. Her feeds take a wee bit longer now because her volume has increased to 60 ml during the day and 55 ml at night. She also gets a quick flush of 5 ml of water after each feed.

Therapy: She has the Early Interventionist (Mary Ann) on Mondays, Physical Therapy (Gloria) on Wednesdays and starting today a Speech Therapist (Davina) on Mondays as well. Those days are light in the house and we make sure she naps well so that she is full of energy and she's not tuckered out before they even begin. I follow up with various exercises at home on the off days: tactile and visual stimulation, tummy time, head and neck control, reaching for toys, etc.

 

My little fashion diva!!

Progress: We've noticed a huge growth in Everly's progress. She's now starting to rub our arms and play with things next to her hands. She was wearing a tutu the other day and she just kept playing with the frill on the tutu. She is very curious and does like stimulation like walking around looking, playing with toys, listening to Baby Einstein and such. We've also noticed that she is starting to become a homebody which isn't a bad thing in this season. She's not too happy when we take her anywhere suddenly. Thankfully, while it's still hot, we don't have many places to go but periodically the doctors. Hoping once the weather is cooler for her, our walks can begin again. It's still in the 90's here which is WAY to hot for her to be out long. She is now beginning to put pressure down on her whole legs for a good minute or so. They are completely stiff leg and a bit angled but it's progress nonetheless and I couldn't be any prouder of my girl! She's readying herself for walking one day!

MISC: We've had many God stories that I'm working on writing to share. More just for my own recollection years down the line. But I will share them with you, too. The ways God shows up continue to astound me!

 

One of her many bathing suit photos. This is one of my favorites!

At Home: The boys are full steam ahead in school and I'm still trying to catch up. Honestly, I needed a whole week of an empty house, no responsibilities and an extra 8 hours in each day to be fully prepped for school. I vow to make this a great year and am working hard to stay ahead of the game. Burning the midnight oil and teaching the boys new responsibilities as a part of our plan for success this school year! Okay, the burning of the midnight oil isn't really a part of the plan but has since become a part of reality and it gets figured in!

Reflux: This has been really bad for a long time. For some reason, though, this last week (now 7 full days) she has not had but a small, very tiny, amount of choking episodes for which we are thankful. The only change has been that our prescription has come from a different pharmacy but I'm not sure if it has anything to do with it. Either way, we are happy and so relieved for her.

 

The dentist!

Dentist: The boys both had cleaning appointments last week and while there our wonderful dentist, Dr. Lesser, offered to peek in Everly's mouth to see if there were any teeth coming. Well, lo and behold, yes, there were on the top and on the bottom! Much like poor Kendan's, the teeth look about as far the Great Wall from here so we won't be preparing for teething yet. She loved Dr. Lesser rubbing her gums and couldn't have been happier to lay back in the boys' laps (they took turns) and get a gum massage. It was quite fun to watch!

Tube: Ugh! Not my favorite topic by a long shot but it's necessary. She has become a Houdini at tube removal and seems to be able to do it in a split second. We've been having lots of tube reinsertions which is concerning because we are still not wanting to do the Gtube surgery. This past Friday, her tube actually split for some odd reason and we had to reinsert. However, for some reason it didn't want to go in easily and therefore, it took us 6 attempts! It was the most awful day ever. Two times it hit resistance, one time it went into her lungs, another time out her mouth, another time it hit resistance again and then on #6 it went in correctly. That was as hard for us, I think, as it was for her.

Birthday: Everly celebrated her 7 month birthday quietly at home with family with movie, pizza and cake. She slept during the celebration actually. True story.

I think that about covers most of the updates since my last one with just all the stats on her and how she's doing. Please continue to check in on Facebook for quick every day updates and pictures frequently. It's a public page so feel free to invite people to her website and to her Facebook page.

Prayer Requests: Now we are approaching the cold and flu season, plus there's now the new strain of Enterovirus to be concerned with as well. I am asking for prayers for her good health and to stay protected (and our family) from the yuck that is out there. It can be deadly for her should she catch it. Please pray for other Trisomy babies and children as well to stay healthy and free from sickness. Thank you!

With love and appreciation,

Crystal

The Wingbo Story

I have always believed in God’s faithfulness but now in this season, I’m more aware of it now than ever.

In Lamentations 3:23, Jeremiah writes this reminder after Jerusalem was destroyed by the Babylonians:
“Because of the Lord’s great l ovewe are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”

I am so excited to share with you one of many experiences in our journey of His faithfulness.

A few months ago I started researching therapies and items that can assist Everly in her development. So, I stumbled across something called a Wingbo that encourages a baby in the prone position to use muscles that are involved with balance and coordination and for Everly, this gives her an opportunity to put weight on her feet strengthening her legs. It’s a very unique piece.

 

It's here!!

However, it was $250 and even if I could afford it, it was out of stock and honestly, I prefer not to buy new when I canhelp it. (You know all her swimsuits?…most of them were given to us or were bought used.) I searched for this special item for sale used but came up empty.

So, I continued to pray for a way to get this Wingbo for Everly.

Completely out of the blue, I run across a post on FB that a Wingbo had just been donated to a medical supply exchange.

I’m ecstatic and immediately see God’s hand in this!

 

Gentleman from the local packing store disassembling and packaging our special Wingbo. His daughter is special needs and uses one, too.

While trying to apply for this, I see that the equipment is given to families with special needs children at no fee! But in the same instance then I see that it’s first come first serve...local pick up IN Illinois.

We live in Florida.

I continued to pray that there was a way this could happen.

I decided to put a note out on Everly’s FB page just to see if anyone was near that area and might be willing to help us out.

Jerry helping from Helping from Heaven...love the name, right??

A sweet college student named Ally (shout out to her for opening her heart and for her future career with special needs kiddos as a teacher. Yay!!) responded immediately that she would help. She later told me that a friend and her mother who actually live closer offered to pick up and then ship it to us for FREE!

A week later we received the package that Debbie and her daughters, Julia and Vanessa, sent to us. And, boy, were we just thrilled! They included a beautiful card as well with such a perfect sentiment. My mom, husband and therapist were all three at the house when the box arrived so there was lots of excitement as we opened it up! In an email to me, Debbie explained that the gentleman who took the Wingbo apart said that he knew how to take it apart because he had a special needs daughter who also had one and it helped her a lot. How cool is that? I'm thankful to Ally, Debbie, Julia and Vanessa for having a servant's heart. Thank you, ladies!

Sweet Ally and Julie (one of Debbie's daughters)

I am in awe of how God provides. His faithfulness is sure. That doesn’t mean that everything we ask or even pray for is given to us but it does mean that God hears us each and every time we petition Him. Only He knows what is best for us and sometimes we can’t understand why our requests aren’t answered. I, along with many other people, have prayed and continue to pray for Everly’s body to be fully healed. While that hasn’t happened, I don’t doubt God’s faithfulness in my life. But, you see, He does answer us but sometimes not in the way we expect or in the time we think we need it. Even if my prayer had not been answered, I know that God is faithful and that He will bring us through this storm. Keep praying and keep your eyes upward for He is the answer and He is the only thing you truly need.

With love and appreciation,

Crystal

 

Somebody worked so hard that she fell asleep on it!

Hospice Update

Little tongue!

 

Praise report...
 

If you read my post here over the weekend venting a bit about hospice, then you'll know how big this is...
 

Pharmacy change went well. Refills fine AND refrigerated! We've had an additional issue over the past... 6 months I forget to mention Friday with connecting her feed pump to to her NG without it leaking since we came home from the hospital. We've tried different solutions on out own but to no avail. Thanks to lots of suggestions and one given to us by sweet Melanie's mommy to try, we found a true solution. Called hospice and told them, gave them the item description and like magic it was ordered today and will be supplied to us monthly as well as everything else. I can rest so much easier now

6 months

But here's the biggest news...

The manager I spoke with in Friday asked me today if she could come over to meet and talk with me on Monday. THEN she said that she appreciated the opportunity to make things better for all peds patients (there's 10, I think she said) for now and in the future!!! Wow! Talk about fantastic! I love that! I'm so glad that they understood my concerns and really heard me and then are going a step further to take it better for all little pediatric patients. My heart swells with thanks because I KNOW firsthand how hard it is to have your child in hospice. I almost have to say it out loud just to still believe it. But to have someone really want to listen and work to make the journey just a little easier, just great!

6 months

Thank you for the prayers and your support! Also, it just uplifts me (and the family) SO much to read your comments and encouragement! I thank you for your part in this journey and how you all have helped to make our days just that much brighter! Blessings!

With love and appreciation,

Crystal

 LOVE!!!

Hospice

Studying mommy's face. 

Well, it's been a couple of weeks since my last post so it's definitely time to update! Nothing deep or even philosophical in this post, just a basic update on hospice and our walk with them over the past 6 months.

Everly & Hospice: This is probably the most significant change right now. There was a whisper about discharging Everly from the hospice program but nothing as of yet has come of it. With her diagnosis, our hospice nurse has assured us that the doctor would be less likely to discharge because he knows that her health can turn on a dime. So, while I love the idea of being discharged and pray she is one day, the fear of having no resource to call upon after business hours is somewhat frightening. The ER is really not a viable option for us in our opinion, though each family chooses for themselves. But even hospice has limitations.

 Gorgeous girl!

In addition, our hospice nurse went on medical leave starting last week and isn't due back until Thanksgiving. While I have been optimistic about the transition to the nurse covering for ours, my worst fears were realized this week with the new nurse. Truth be told, there's been a few areas of concern for us over the past 6 months with hospice. I haven't discussed them, haven't written about them and haven't even addressed them officially with hospice management until yesterday. The crux of the program is to provide support and comfort to patients and their families in the end days of their loved ones life. But what happens when the patient doesn't respond the way everyone had expected?

Trying out our blooming flower bath. She liked it and a plus is that she can eat while she's taking the bath!

In an effort to be honest, transparent and real, I'll share with you all a few of our ongoing struggles. I would like to preface my explanation by saying that I believe that after yesterday's incident, we might be on the right track now. I could very easily make this pages long so to avoid doing so, I will bullet list some of the issues we've had:

Hospice pharmacy has given us the most cause for concern time and time again. Once by doubling her dose of albuterol at 3 1/2 weeks when she had pneumonia. We didn't catch it until 3 days into her receiving the albuterol treatment. Then repeatedly delivering meds that are supposed to be refrigerated that were warm and clearly not refrigerated. And then if I do not accept one part of the delivery of meds (say, for instance, the unrefrigerated med) then they must return the entire order, not even allowing us to keep the correct parts. In addition, they do not want to dose out more than a mere week at a time of meds having us to continually for 6 months need weekly refills. Not providing more than 1 or 2 syringes with each refill to last a week and sometimes providing none, keeping in mind that ALL food and meds must go through Everly's NG tube with a syringe. A few other smaller issues that just compounded the whole pharmacy issue as a whole.

On Call: If I need to contact a hospice nurse to check on Everly, it is entirely possible they will not have a pediatric RN on call. It has happened to us before. It is also entirely possible for them to need medicine for your infant and the doctor on call is not a pediatrician either. It has also happened to us before. See, hospice mainly, as you can guess, is geared to the elderly sector of the population. So, when Everly had her seizure that lasted all night when she was four months old, the nurse who was on call that night didn't know that rhythmic tongue thrusting could be seizure related. Therefore no meds were prescribed to stop the seizures. Come to find out, there is a "hospice kit" with emergency meds like those that stop seizures placed in the home when they are on hospice. Only we didn't have one and didn't even know it existed. Why? Because they don't have them for Everly's size. Plus, nurses that came to our house when Everly had pneumonia weren't all experienced in pediatrics at all. It's hit or miss depending on the day and who is working.

Doctors: There is one pediatric doctor for hospice (tells you how many ped patients there are, right:). Yesterday was the first time he ever came to visit Everly. He did happen to be touring St. Joe's right before we came home from NICU but that was because he had just become employed with them and was getting the lay of the land. But we don't have any regular doctor visits or check ups, except with our private pediatrician. I also believe we are one of the few private insurance families with hospice. We were told that if we were Medicaid that we couldn't go to the mountains without withdrawing from hospice.

 

Cute baby sandals my friend Dana's mom crocheted for Everly.

Supplies: Okay, this is probably the MOST stressful of all things. There are certain items, as you can imagine, that Evelry must have just to survive, NG tubes, various size syringes, specialty (not on shelf) formula, cannulas, oxygen regulators, etc. The last time I checked they aren't your ordinary Target items making us dependent on hospice to provide them for us. However, again everything is doled out on a weekly basis. The assumption being that if a hospice patient passes then the supplies and such are unusable then. I'm okay with things being given once a week BUT if the person who visits you each week a) gets sick herself and can't make it to you or b) comes on a Monday week 1 but then Friday week 2 and so on, there's a period of time where you could be without. I can only feed Everly via her NG tube by using syringes (called a bolus feed) or the feed pump which we usually reserve for middle of the night feedings with her supplemental formula. So, time and time again we were left waiting with baited breath for our delivery and yes, once our nurse was out sick and we were in a panic because we had no more feed bags for the pump left and a couple of prescriptions were due asap. The syringe issue is one all on it's own, let me tell you. The syringes are actually single use only but we have to use and reuse each time we feed her. They become stuck and pop when they've been worn too much. Because we are only handed a few at a time, we are VERY careful with them. They have their own bin, place on the counter and never go in the dishwasher. We baby those things. We have been left before with only one "good" to use and it is scary. I know you all with typical kids (like me before) might not get the enormity of that but it's equivalent to you having a spoon for your child but only one jar of food to last a week and a frequent traveler is the only person who can get you more. You worry each day. You know it won't last. And you can't get it anywhere else. Another big concern is that they don't carry many pediatric supplies so when Everly needed continuous oxygen they only had an concentrator with an adult regulator. It wouldn't go as low as her oxygen requirements were. We didn't know that at the time as this was all new to us. We were even delivered adult nasal cannulas for a two week old baby that weighed 4 lbs. Hmmm...really? We did get that corrected BUT it was just one more worry at a time when it was the last thing we needed to be dealing with.

All this to say, this all lead to what came to a head for me yesterday. I contacted hospice yesterday because I still hadn't heard from the new nurse and since we need them weekly, needed her to order Everly's meds and bring her other supplies. I won't get into all the details but let's just say when she arrived yesterday, things went downhill QUICKLY. No assessment of Everly was done, no supplies were received and no meds were delivered and it was Friday.

I was worn out from dealing with all of this week after week with hospice so I called my mom, aka The Bulldog, to take over. She had been past the point of frustration with it over the past 6 months and was ready to make the call. I hadn't called at all about it because I kept thinking it would get better, be patient, offer grace, on and on. So, not once did I call and complain or speak to anyone outside of our regular nurse about the issues. But I was done yesterday. Just done. I knew I had 3 more months without our main nurse and there was NO way I could continue this way. In addition to the stress of having a medically fragile baby and the care she needs, the day to day worries about her health and future, I did not need the additional stress of worrying if we had supplies, begging to get this or that and counting to the last little drop of a med for fear we wouldn't get the next refill in time.

So, there was one more glaring hiccup later in the afternoon, my mom had already called and spoken to a supervisor and was then at an appointment, so I had to call. I finally after all these months shared my concerns, my tribulations and my wishes with the supervisor. It felt good to get it out, voice my concerns and then to know finally that some resolve might come of it. By last night, I had been delivered a bag of 100 3ml syringes, a bag of 100 1 ml syringes and a box of 100 10 ml syringes. The decision was made by the supervisor to transfer all of Everly's prescriptions to my favorite local pharmacy (shout out to Beth and Jeff) and hospice/my insurance would continue to be billed but we were more in control now. The last issue of the new nurse has not yet been resolved and there's still three months left. So, at this point, I am thankful for the solutions and pray for peace and patience for the last remaining challenge.

I have chosen to write about this one because these updates are my way of documenting our journey and two because I hope that we can see some changes in the pediatric hospice program. Look, it isn't right that there is EVEN a program meant for babies, infants and children in hospice. It's not the natural order of things. I KNOW. I GET IT. My daughter is their youngest patient. No other baby with Trisomy 18 has been born at St. Joe's since Everly in February. I verified with NICU and with the hospice doctor yesterday. However, since they do have a patient this young and was 14 days old when she was admitted to their program, we would like to see that it is appropriate for her. There's so much more I could have written and I have held in for 6 MONTHS but I just couldn't anymore. I hope that in the future, they take into consideration the needs of the youngest patients and what enormous stresses their families are under and how they can make things just a tad easier on them. This post isn't A person. It's about making the program fit for pediatric patients better.

Please join me in prayer for our peace in this situation. Please pray for resolution and guidance. Pray for the nurses and doctors who take on this difficult assignment of caring for babies with a life limiting diagnosis. Their hearts must break. Please pray for our sweet Everly as she continues to thrive, grow and defy the odds.

With love and appreciation,

Crystal