Thursday, July 2, 2015

We Interrupt Your Current Program....

So I am sitting in the hospital bedside with Lily. Currently. Like right now. I thought hmm I have time I could do my next post from spinal fusion, but I thought nah. That would take way too much energy.

So I am going to write about this hospitalization. Like the one going on right now.

Yesterday when I came home from work Lily's caregiver Marrisha said she had a couple seizures and was shivering and wasn't eating. She wasn't Lily. I touched her head and she was on fire. She was running a fever of 103.2! Yikes! I gave her fever reducers and put her on the couch and she flinched whenever I touched her, even when I sat on the couch next to her. She obviously wasn't feeling well. We were conflicted with what to do. If it were our other kids we'd ride the fever out a little bit at least. With Lily we don't like to ride anything out at home. So I had to run the kids to karate and drop Andi off at church, then Andrew calls and says I think we need to take her to the ER, now. He says her tummy has a lump on it and it is obvious her pain is all localized in her tummy.
Thank the good Lord for our friends/neighbors who took the other 2 without a blink and we rushed Lily to a near by hospital, Mercy Gilbert, that just recently added a Phoenix Children's wing. ER was packed but they got her back and in a room quickly. She got X-Ray, cath for urine sample, an IV placed, blood drawn, a CT-Scan and diagnosed and treated for UTI within 3 hours. It was quite impressive.

All the while my most favorite night of the month was unfolding... book club. Waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
(that's my selfish toddler pouty self letting it all out)

And she got admitted. For a UTI. Ugh. She needed the big gun antibiotics and by 10pm her and I were once again shacking up in a hospital room.

This morning two sweet Doctors came in and said she was really constipated and has an impaction, that is probably why she got the UTI. It is a double edged sword. Poor girl. I had suspected possible UTI because her urine was strong smelling, but never showed any other symptoms so I was just trying to give her more fluids. But I was wrong. Should have called the Dr. sooner. Some times I feel like I should be fired. Life is so busy, I forget what day did Lily poop, how often did she pee? Drink? The parenting self doubt party bus sure does strike and hard when you are already feeling down doesn't it. I should have done better. All I can do is try better from here. And here I am getting non judgmental (at least I hope so) support and help with this messy process and I am taking it and just accepting this hospital stay (that had me missing my book club and leaves 4th of July in Greer up in the air) as God's interruptions. I'm busy. As much as I vow to slow down, I don't. Every day I'm hustlin. Really maybe less gansta as some hustlers, but I really feel like I'm always hustlin. I want every day be cuddlin. Not hustlin.

Don't get me wrong. I started this day GRUMPY McGrumpy Pants! For sure! I actually was 2 seconds short of posting this status "Can I just not have to deal with people today" I was not feeling anything devine about this cold room, enemas, miralax, poop everywhere, alarms beeping, IV's flowing day. Not at all. But I'm here regardless how I feel about it. Andrew took the kids up to Greer, we will hopefully join tomorrow (??), I already set up a dog sitter for us so I don't have to worry too much about the animals at home. It's OK. It's OK. It's OK. Breathing that in and out. Sometimes this life can really wear on me. OK a lot of times it can. I feel like a martyr at times just giving up all I have to everyone and when I do it with a bad attitude what is it all for?

Lily was given to us, God knitted her in my womb. He knew every seizure she would ever have. He knew we'd be sitting here right now. He knows all and he knows me and for some reason he thought this precious girl would belong to me because he knew me too. He knows the selfish, grumpy, I don't want to deal with any people, me, but I guess he also knows the me that could see his interruptions in my life and recognize them and find goodness in them and I know he is telling me I am doing the best I can for her and I will continue to do so.

Currently she is sleeping after a seizure, fever has stayed away, tummy is still tender, swollen and full even after 2 enemas, but I have been reassured she isn't so bad she will require surgery, so that is good. I don't know what the plans are for tomorrow, I know what I want those plans to be, but that doesn't matter. I am trusting this is where she needs to be and will take the advice and care here they have for her and we will go from there.


Monday, June 29, 2015

Spinal Fusion Post 3


My Facebook status post 4/7/2015 sometime late into the night:


They say she won't remember these days. I wish they could say the same for us. After a successful surgery things post op took us for a loop. After multiple complications they realized Lily was rejecting her own blood they gave back to her in surgery. That caused a whole lot of problems all leading up to her being ventilated. We thought she'd be off the vent by now but seizures came fast and hard and then a plethora of medications that weren't doing anything for the seizures. I think I can safely say she is resting peacefully now and we might get a little rest but because she is so sedated she can't come off the vent. I am clinging to my knowledge that joy comes in the morning. I am clinging to knowing this needed to be done and knowing we are not alone. And I am praying she has an uneventful night and we make a plan and all goes well tomorrow. Thanks for praying. Trying to keep folks updated but it's hard. This is hard. Parenting can be the most heartbreaking job on the planet.

Our nurse that night was Amy and she was in our room AROUND the clock. I don’t know if she even had another patient. Lily was top priority and because of her I was able to close my eyes and sleep.
Many people would say “try to get some sleep” or “I know it is hard but you need your rest”, kind words somewhere along those lines but here is the truth. I slept. I pretty much slept every night we were in the PICU. It may have not been 8 hours resting on luxurious 1000 count Egyptian cotton, but there were at least 5 - 6 hours each night where I was rolled into a fetal ball and I slept.  I don’t know if it was God’s sweet mercy on me, I don’t know if it was pure exhaustion, maybe it was the amazing nursing staff I was comfortable leaving in charge, whatever it was, I slept. So that night when I finally laid down, I slept.
I was up early of course, found myself the coffee machine in that big nice waiting room we neglected to find on the day we needed it, but it took me several days to find the cream (IN THE REFRIGERATOR!) seriously, that was a huge stress for me. That first morning I had to wait for Andrew to get there (which was early) so I could go down to the hospital coffee shop. Eventually (a couple days later) I found the creamer and that made life easier for me on the 6th floor. But geeze. Maybe a black sharpie saying CREAMER HERE IN THIS DRAWER IN THE FRIDGE would have been more helpful.
But again these memories are probably not necessary for our story. And I realize some of you are planning an intervention with my coffee addiction. You are wasting your time. I will flee.


Here we are Wednesday the 8th:
I am relying heavily on Facebook and Instagram for these details. I can tell you we had visitors but unless those photos are posted I won’t know what day it was or what we talked about. I probably won’t mention the visits for the most part because I will for sure forget someone and I’d rather not hurt any feelings by making visits seem forgettable because they weren’t. We were so loved on during this time I know it is what kept us afloat. We were carried through this time by friends and family. If anyone asked me to visit I would pretty much say not today, but others just came anyway and it was refreshing and re-energizing. So thank you friends and family. Facebook posts, private messages, texts, calls, visits, gift baskets, gift cards, food drop offs, those were all life savers, we were told to keep on swimming and we did, but those things held us up like a life boat when we couldn’t muster the energy to keep on swimming.

OK back to Wednesday the 8th, Andrew came back early and never left. Lily was intubated and during those morning rounds we looked at her x-rays which I already shared in last post, reminding us why we did this, and our plan was for her to wake up, get the vent out and manage her pain. New nurse, Gina, came and we were blessed with for 3 days. She was amazing and funny and another shining moment from those dark days. Throughout the day the Respiratory Therapist would come in and check on her and do coughing tests with her. His name was Jamie and we saw him a lot over those two weeks. He was opinionated and a true expert in his field. 

And he pissed me off.

Let me say Lily has never had respiratory issues ever, OK well she had gotten RSV as a baby while on vacation in Colorado where they threatened to air flight her Children’s but we talked them out of that and she recovered just fine with treatments and steroids and then in November 2013 she developed pneumonia but we caught it so quick she didn’t even require hospitalization so her past behaviors were our best indicators for the present, right? So I kept saying, she can breath on her own, she is a healthy kid. I was sure she wouldn’t wake up because she hated the tube in her throat and was for certain she would wake up once we got the tube out.
Jamie disagreed. He tried these cough tests and kept saying she was failing. So he said she could not be extubated on Wednesday. I was so annoyed with Jamie.

That day Lily slept. Andrew would pace the room, touch her feet and see no reaction and go back to pacing. His worry wore on his face and on his feet. He should have worn one of those things that track how far you walk in a day. I realize those things have a name but at the current moment it has not come yet to me so I am saying a whole bunch of words to fill the space of one tiny word. 

Sweet. 

Fitbit! Yes! Fitbit, thank you brain, you can be slow, but you do show up. Eventually. (editor note: I was almost done with writing this when it came to me)

Andrew paced and I am not sure what I did. Watched him? Look at magazines. Yeah.. not sure. I  think a therapy dog came by that day. And sweet friends, sweet friends came by and we prayed. Our moms were there and I am sure we walked to the cafeteria for something to eat. I don’t really know.
Andrew would play Slumber by Needtobreathe on repeat and we prayed some how those words would sink in.
Wake on up from your slumber
Baby, open up your eyes
Wake on up from your slumber
Baby, open up your eyes

Come on
Sing like we used to
Dance when you want to
Taste of the breakthrough
And open wide


April 8th nighttime post:

Sweet girl is resting too hard still for vent to come out. Trusting in his timing even though it's hard. Not much to report. She's sleeping hard and stable. — with Andrew Nothdurft at Phoenix Children's Hospital.

Lily sleeping with her beautiful gift we were given before getting to the hospital. That gorgeous blanket was admired by everyone

Thursday April 9th
We slept the night before (did I say we? Oh yes I did, Andrew and I bunked up in the tiny couch and we slept like honeymooners all cuddled up as tight together and as comfortable as two very tall people can manage sleeping on the width of about 4 feet can sleep comfortably. Neither of us were leaving her and that was that). We had nurse Megan and we had her for 3 nights. Thank the Lord. She was wonderful. I said “Megan, we are really tired, we want to go to sleep, is that OK? Will you wake us if anything happens?” She assured us and we slept. We woke up with a heavy blanket lovingly tossed over us and I thought man Andrew’s mom is here early. She always covers those who sleep with a blanket. Then I rubbed my eyes are realized it wasn’t Cheryl, it was the X-Ray tech throwing a lead jacket on us and taking an X-Ray of Lily. My bad. I liked my initial thought better. They had to check her tube to make sure all was well. This was how we continued to wake up for many, many mornings. Except for the mornings they forgot to cover us and I am probably now sterile forever.

It was a new day. 

There is something us crazy Christians like to say and it is his mercies are new every morning and it is such a beautiful and comforting reality for me. Nighttime is dark and fearsome. At night I am weak and feel defeated, but each and every morning I wake up to his light and I am powerful and brave and ready for a new day. I am filled with Hope and the incredible thing about waking like this every morning from the 6th floor at the Children's Hospital was this is what we saw every time we looked out our window.
This is the reminder we had that we will all wake to a new day:

Our view right outside our window - Phoenix Fire Department
I feel like I should explain why Andrew and I were able to be with Lily around the clock. One simple answer, Grandma’s. My mom would sleep at our house get the kids to school and come to the hospital and then get back there before they got home from school. It was a great plan and we were able to get meals and walk around the hospital when needed because we always had Grandmas there. Grandpa would come too sometimes, but Grandpas aren’t super hospital people so it’s more Grandmas. We had it covered with support and were able to not have to worry about our little hearts beating away from us at home.

After rounds on Thursday morning we found out her hemoglobin was really low, she was on a low setting on the vent, she was still sleeping and still unresponsive.
The intensive team wanted her extubated and that was the day's goals.

I thought well damn, give her some blood. Then she’ll wake up. Right? Something. We had all the Doctors come in and check her. Dr. White always came in with a smile and told us to hang in there. The resident was so sweet and wonderful and always answering questions and had wonderful bedside manner. Dr. Nelly, the Fellow on Lily’s case was hard to read. She seemed a little tough at first but ended up being one of our most favorite people we looked forward to seeing every day.

We had a new respiratory therapist on this day, but she was sounding a lot like Jamie. I was not happy about that. I thought give her blood, take the tube out. You will all see, Lily will be back to Lily. This is where I realized my gut isn’t always 100% - hope all the while is a good thing most of the time, it can also block your brain from reality. It’s a side effect of parenting I think.

It was in the afternoon and our Pastor Palmer and his beautiful wife Veronica came to visit right when they decided to extubate. Great timing for them. We all stood and watched them remove the tube. I was nervous but thrilled, they’ll see I thought. She’ll be Lily again.

Andrew asked the RT if she thought it was OK to extubate her and she gave him a look and walked away. She was angry. She was so obviously angry that she was extuabting a child that was not ready for extubation she couldn’t formulate one word. RT was mad, Gina (RN) was mad and I thought what is happening. Fellow and Attendee said pull it out. They knew right? So then Palmer and Veronica put their hands on Lily and we all prayed.



Once Lily came off the vent we were able to close her door. I didn’t want her door closed but Gina said they were bringing in a patient from life flight and it will be a trauma situation and we won’t want to hear it so she closed the door. I don’t think she realized my favorite shows all have to do with Doctors. But whatever we closed the door. Trauma was unfolding next door and not before long trauma was unfolding behind our closed door.

Lily had on only a nasal cannula after being intubated for over 48 hours, it didn’t take long before we saw her shaking, and her nostrils were flailing and she was trying so hard to breath. I thought she is in pain, medicate her! She is in pain! She wasn’t breathing, it was chaos in the room as all the monitors were beeping. Her heart rate was in the 140’s and her breath rates were in the 40’s-50’s. We open the door, hit the nurses button and ran out to find Gina. Found her and then she was yelling to get an RT in our room, but it was shift change, no one was available, she said "Get someone in here now!", it was chaos. I don’t think I was breathing as I watched our baby girl struggle for each breath. Oh my heart aches remembering what I have tried so hard not to remember. She was fevered, she was trembling, nostrils were flaring, monitors were screaming and I thought one more step… I physically cannot take one more step emotionally. I cannot do this. I wanted to run from that room and write a wish you were here post card. Thank God he swept in and took the steps for me. I had lost any will left in me, he was in control. I was broken and my pieces were all over the floor. God held me and therefore I was able to stand there and watch our world come undone. Finally got an RT to put her on bipap, she got pain meds and seizure meds needed via NG tube. I am not even sure when that was placed. I think Tuesday night I am sure. Then again she was resting peacefully and we sat down.

I don’t remember what night it was but I was talking with Megan (our night RN) and I was telling her how I can’t imagine working all night long and she probably believed me as she saw I am able to sleep no matter what area of space I am limited to and she was telling me how it isn’t that bad and I joked about how she probably doesn’t have to deal with parents as much during her shift  and she said that it was true and she said “I love the families but sometimes in there (PICU) it is hard because people don’t realize how sick their kids are”. And even as she said those words I thought oh yeah I bet you’re right. And she had to be so right because I had no idea she was referring to kids in Lily’s condition. There we sat in the most critical area of the PICU across the way from the nurses station and I was thinking she must be talking about some other poor chumps with sick kids. Because that is the reality of life. We don’t see what is right in front of our face because seeing that would mean believing it and that was something I wasn’t prepared to hear, see, nor believe. Our daughter wasn’t breathing on her own. Breathing is pretty much an essential of life. Therefore Lily was really really sick and Megan was right. We had no freaking clue.

April 9th evening Facebook post:

Sweet girl hasn't tolerated the vent out well and needs bi-pap to help her breathe. It's been a scary evening. Pray Lily will wake up. She is still pretty unresponsive.



I want to go into Friday the 10th, but that was her hardest day of all and I don’t want to keep going if I have a ton left to go with. So I promise to come back soon. And you all must admit this was a quicker turn around than last time. See doing IS proving!

Wednesday, June 24, 2015

Spinal Fusion Post 2

Tuesday April 7th: 4:15 am the alarm went off. I was already awake. Got dressed and packed the room up, lastly Andrew picked up a sleeping Lily and put her in her wheelchair. I was told not to give her anything to eat or drink, I asked about 80 times if I can give her meds and they said no. They said she would have enough in her to not need her seizure meds. This is one of my biggest regrets. I could have given her the tiniest bit of water with her seizure meds. I didn't and regret that. We loaded up and were out the door before 4:45 am, it took a mere 5 minutes to drive down the dark and deserted Thomas road (that never happens) and then there we sat and waited until 5 AM when the parking garage would open. We sat, Lily slept. I am not sure what we talked about, if anything, I don’t have the slightest memory of that morning expect for watching the car in front of us -another early bird- and wondering what kind of surgery were they there for. We all know no one is at the Children’s Hospital before 5 AM for anything else. And I should mention if this was all on my time, my schedule, my choice we would have been 5 minutes late and didn’t have to sit behind this car and just sit. I run on perpetual crazy. I like it that way. Too much time just leaves my mind reeling and for a person who lives in constant chaos in the brain it’s no good (PS the other day Oliver asked me if chaos was a bad word. What a funny word for him to think is bad. That had me thinking about what it is like to be a kid (my kid most especially) and wondering what words are bad. It must be like walking in a minefield. Sorry kids. I don’t like bad words. Dammit.). So basically sitting still time is not appreciated, nor desired. Thanks hubby. You and your darn instance for being early to everything.

So the gates open and we park. Best spot in the place. You will understand this was very important to us and you will notice at the time when I absolutely had to re-park it was way more devastating than anything ever should be. AND when you read why I had to re-park you will think I am an enormous butthead for even thinking about my parking space so we will just save that story for later.

Enter the completely empty eerie hospital. PCH is never empty. Well yes it is, at 5 AM it is. We go and check in. I leave Andrew and Lily to get a coffee AT THE CLOSED COFFEE SHOP… you make us come in at 5 AM and don’t even have the decency to have the coffee shop opened? Now this shouldn’t be a big deal, but I didn’t have any coffee yet. I was out of fingernails to chew and really needed some caffeine to give my nubs a break. But these details are really not that necessary. But it is funny what my memory can recall. A few other families check in at the unGodly hour and I sit and watch them all. I could have been less conspicuous but I had no caffeine. I am a watcher of people. It’s why I heart reality shows so much. People are fascinating and I love their stories so I sat and watched other people's stories unfold as I bit what was left of my last fingernail.

LilyAnna they call. We go back to the desk and get a stack of papers, we pre checked in the day before when she got her blood drawn so that was easy. And probably the last easy thing to happen for the next two weeks.

“Take these up to the 4th floor and someone will meet you to take you back” and as sure as rain never is in Arizona there was someone there to take us back. Still fueled on nothing but fingernails and fear we walked back, weighed her, measured her, totally bothered her as she was still pretty much sleeping and then escorted to the pre op room we would stay until the fated moment they came to take her away.
This is the picture that breaks my heart. I sit with tears in my eyes as I write this. She was so happy pre surgery. Just laughing at her silly dad. And it has taken a long time to see this smile again.

So I may have forgotten to mention this but we decided to have her VNS battery replaced at the same time as spinal surgery, I said it was then or never because I wasn't going to put her through anything else for a long time and the Neuro Surgeon worked with the Ortho Surgeon and they said OK.

That is the back story to explain when the Anesthesiologist came in and changed things up. We had spoken briefly to an Anesthesiologist the day before with the lab draws but he was more easy going answering questions, this woman was the one doing it and came in to talk to us of course as they do before surgery and it took all we had to not go running out of the hospital with Lily in tow to never been heard from again. I want to preface this with we really did like her. She came in our room and said she really didn't think she should have the battery replaced before surgery, she shouldn't lay on a fresh incision for 3-4 hours, she was going to talk to the surgeons, she was in charge and took care of that. OK. Then she started to talk about the surgery, how serious it was, how regular anesthesia doesn't work with this because they have to continually check her reflexes. She talked a lot and I don't remember lots of the words she used. I remember the feeling Andrew and I had when she said them. Doom. Doomsday. Like seriously let's run now, we still have time. She talked about all the side effects and she could struggle breathing afterwards, may require extended intubation, etc. BUT this is Lily she was talking about. Things go wrong for her often but not that wrong. She is healthier than any of our other kids, she is like an ox. She won't have breathing problems, she never has breathing problems. So she leaves the room, our white faces just look at each other I am not sure if we even said anything, just looked at each other. I thought I was going to vomit.
Then Dr. White comes in and says let's do this! He was optimistic and confident and that helped a lot. But our stomachs were still turning. We told him what she said about doing the VNS last and he was like sure, what evs... Neuro Surgeon said sure I'm here all day and so that was the plan, spinal fusion then VNS battery replacement and she comes out and she heals quick and we are home on Sunday.

Boom.

And then God giggled a little.



They took her back sometime around 7 AM and my mom met us in the waiting room with COFFEE. And there we sat. Andrew took her wheelchair to the van and we sat. And sat. We didn't leave the waiting room. I went to the bathroom a few times to let some of my sob to escape. It just sat there in my throat and it was easier to excuse myself, let it out and go back to wait. Andrew's mom showed up after she got our kids to school and not much later my Aunt Gloria came and then our good friend Brian came. We sat and talked I guess. I don't really know. I got updates pretty often from surgical nurse on my phone and I would try to update my friends and family. At some point my Aunt Gloria spilled her entire cup of coffee on the floor and that made things interesting for awhile. Ha! Thanks Gloria. We really weren't allowed drinks or food in there. I wonder why they had that rule.
Then it was like I don't know 11 AM and we were in a room with Dr. White where he was excited to show us her before and after X Ray, surgery was successful!



pre surgery 70 degree curve
post surgery.. what curve?


Her pre surgery curve was 70 degrees sitting. She went from a 50 to a 70 in a short amount of time and was only getting worse. Surgery wasn't a cosmetic or really optional choice, she needed to be straightened to have a healthy body. She is now very straight.
Excited we left the room to tell everyone surgery was successful, now the hard part, recovery.
Not much later neuro surgeon comes to tell us all went well with the battery replacement. We go back to waiting room and volunteer tells us "she will be going straight to ICU and we can see her there."
And there we go to the ICU and sit and wait in a small waiting area. Unaware of the big one not to far down the way with a TV and coffee machine. We sat. Same crowd, different place.
I'm thinking it was about 2 pm when Andrew asked someone why we haven't been brought back to see her. Then there was a social worker and a Dr coming to talk to us. Things just got real right then and quick. Dr. Rosenberg (critical care MD) came to tell us Lily was struggling and had to be re-intubated and they were still working on her and will come and get us when the team is ready.

Crap.

It was getting late my mom needed to be going for the kids so I texted my friend and super neighbor Dana if she could get them and not to tell them anything so they wouldn't worry, just say grandma lost track of time - which is totally believable ;) love ya mom! So we waited some more and more. Finally we got brought back and I was scared. Scared to see our baby intubated. Our nurse - Super nurse Jordan was giving us the low down, her hair was a mess, her voice was shaky and I was wondering what all was happening to our baby girl while we were down the hallway talking about stupid stuff. My heart was in little pieces dispersed all through my body. I was crushed. I cried a little when I asked my mom and mother in law if I should let Andi facetime with us that night. She had wanted to so badly. I never thought though Lily would be on life support. We decided no.
Then I looked at Lily's urine bag. It was bright red. Nurse Jordan said they sent a sample to the lab. No that it wasn't OK. They really weren't sure what was going on. Lily's heart rate with SUPER low and blood pressure as well. Trying to remember what else was going on. I know she was totally unresponsive and no one knew why her urine was filled with blood and why she crashed after surgery.

Details get a little foggy from here. I know we let everyone there see her. She got kisses and love from everyone. Mom went home to take care of the kids. We sat by her side.

Finally they said it wasn't blood in her urine, well it was blood but not red cells? Ack sorry this isn't a medical journal, this is my blog. I didn't graduate college. And even if I did it wouldn't be to write medical journals. What happened was they recycled her blood during surgery but when the blood comes out they wash it in a citrate formula and then put the blood back into her body. They realized what happened with Lily was she rejected or was allergic to the citrate so the blood just came out where ever it could and in her case it came out in her urine. They think that was the reason for her crashing and why everything went so bad. Oh Lily. Gotta be so unique. It was one of those yeah we really haven't seen that before scenarios. Anesthesiologist came by worried and wanted to see Lily. Said she was in the middle of a surgery with another patient wondering what happened to Lily and had a light bulb moment and realized it was the citrate. So while she was doom and gloom we liked her because she is a wonderful Anesthesiologist and is exactly whom I would want caring for my child again if God forbid we had to do surgery again. She cares and is intense and knows her stuff. Top doc in my books for sure.

And more sitting bedside. She would make subtle hints of waking up but then would go back to sleep. I was confident it was the tube in her throat frustrating her so she wouldn't wake up. Lily has a tendency to check out when things aren't going her way so I figured that was the problem. In most cases my gut is right but in this case it wasn't. It will be proved wrong later.

I have no idea around what time it was but Lily started to wake and would have a seizure each time she would wake up. They gave her ativan in her IV. I said she needs her home meds and now, it finally dawned on me she had gone 24 hours with out her home meds. They were running to get them for me. And she would seize again and again and again and then she just wouldn't stop. They weren't seizures like at home and I was scared. The most scared I had been all day long. And that is saying something. They kept giving her Ativan, they even gave her something that they said she would not be able to seize with and as they gave it she continued to seize. It was awful. Absolutely awful. Eventually they stopped, after enough drugs to knock an elephant out, she was out. And she would remain out for quite some time.

It had to have been about 9 pm when Andrew and his mom went to sleep at the Ronald McDonald house, reluctant to leave I sent him off with a promise to call if anything happened and then I sat on the couch/bed and sobbed myself dry.



I'm tired. Will continue again later. I will try not to take so long the next time. Although we all know trying is lying, doing is proving. Yup tuck that little motto in your hat. You'll use it again. You're welcome.

Wednesday, June 10, 2015

Spinal Fusion Surgery Post 1

So here it is June 10th… 2 months post op and I sit with the keyboard under my fingers and I type and think do I want to go back there? Do I have the energy? Do I have the memory? No, no and no. But I am going to do it anyway.
I have decided this is for me. This is for my memory that is fading as each day passes. I don’t remember much of Lily’s brain surgery back in 2005 and reading my blog from that time is hard, but also important and I feel this will be the same way.
I will break this up in a few parts for myself and for you few dear readers I have left.
I don’t know how this is going to look and how readable it will be, but it is hanging over my head in an invisible to do list that I am just ready to check off.


April 5th Easter Sunday:


We were riding the high from having family in town, we had a super fun pre Easter celebration weekend with a portion of Andrew’s side of the family and woke up ready for some more Easter fun. Baskets, egg finding, church and family in our home, it was a perfect day. Sunny, not too hot, and although I didn’t offer not much more than a store bought ham and our house to congregate in, I was happy to have my crew there to take my mind off the impending doom sensation I had in my stomach since November when Dr. White said it’s time for surgery. As contractions slowly come upon a mama about to give birth that was how this gut feeling was hitting me. Slow at first but as the days came closer and closer to April 7th it was ever present and consistent and I was about to give birth to all my fears and anticipation. Just writing about it brings it back.
Later that evening we had our life group and other close friends (as well as some family stayed) to pray over Lily. On Easter Sunday we had a house full of people to pray over Lily. I say that again because people left company at their home, left get togethers to come to our house to pray over Lily, and our family. I was hardly able to muster my gratitude's as we humbly accepted the love our friends and family were pouring over us. We stood, held hands and prayed that Lily would make it through, that her pain would be taken away and Andrew and I as well as Andi and Oliver and grandparents and aunts and uncles could all remain strong for Lily. When the last guest left our home I sighed and thought how lucky we are. How blessed we are. How grateful we are to have brought Christ into the center of our home and with him came a team of people who love us so. I think of all those years he stood knocking and I would half-heartedly let him in and then kick him out again when he didn’t bring all that I expected him to bring, all that I thought I deserved he bring in his arms as he came into our home. I was selfish and silly. But I know better now and thankful for growing up. Thankful for the continual knocking on my door and thankful I finally opened the door and let him in to stay.
So that night I tucked in all the kids and went to bed feeling loved and yet still scared out of my mind.

Nordy Family pre Easter fun
Us
Diepstraten Family Easter

April 6th Monday - the day before surgery

Lily was due at the hospital on Monday the 6th at 12:30 pm for pre-labs and because we live exactly 35 miles from the hospital we qualified to stay at the Ronald McDonald House right near Phoenix Children’s. So Monday morning the kids knew this was good-bye for awhile and it was a tough morning. I took the kids to school in the golf cart as we usually do on lazy mornings and I gave them huge hugs and tears were filled in Andi Jane’s eyes as she says good-bye, she told me to tell Lily to be strong and I had to watch them walk away wiping away their tears as my heart felt like it was about to implode. The silver lining was I watched Andi literally walk straight from my arms to her youth pastor and our neighbor/good friend who knew why she was sad and gave her a big hug. Relief filled my imploded heart that helped it enough to start beating again. Some may say I am dramatic. So what. What I am saying is it sucked to say good bye. Heart breakingly so. This surgery was so hard on each member of our family. So freaking hard.
After the kids went to school I let myself cry. Then packed up all our bags and loaded up the van. Dozer (our English Bulldog who loves Lily more than anyone else) was really upset that we were leaving with bags and he wasn’t allowed to go.
"Don't you even think of leaving without me" Dozer
"I'm going with you" Dozer








Lily and I went to Costco for dog food (Dozer should have not been so annoyed, I was doing that errand for him) and then her and I sat at Kneaders and had lunch. I struggled to eat, although she certainly did not. A peanut butter and jelly sandwich, applesauce, chocolate milk and a cookie, she obviously wasn’t struggling as much as I was that day. Then we were off to the hospital where we met daddy and labs were drawn. Then we went around Phoenix for a bit before heading to the Ronald McDonald House. While we waited for our room we started thinking home isn’t too far. We should just go home. Then we were taken back to our room and we literally had a two bedroom apartment to stay in. It was furnished by the Arizona Coyotes and was quite amazing. We were able to relax, hang out, eat dinner and snuggle Lily. Later Marrisha (Lily’s caregiver of many years) came by to help me with her bath and to braid her hair before surgery, something recommended by the parents who had done this surgery before us, and besides Marrisha can braid her hair way better than I could ever pretend to. And then off to bed, we were due at the hospital by 5 am. It was a restless night for me, kept thinking I was going to miss the alarm, but Lily slept beautifully and my heart ached knowing this was her last night for a long time of her "normal".


I’m gonna stop before I even start with surgery. That post will be much longer and I will need to go back to facebook and instagram to help me remember those days so this is where I leave you.

Saturday, April 4, 2015

Time is Ticking Away.. Tick Tock

Packing, shopping, waking up at 5 am every morning to get work done so you can be gone for a week, loads of laundry so we can pack, preparing schedules for the kids while we are away sounds a whole lot like vacation. But it is not. We are preparing for the zombie apocalypse, oh I mean Lily’s surgery. The one where they cut all the way down her perfect skin and straighten her spine with rods and pins, bolts and metal in her precious untouched, unblemished body. The one where we are told pain management is number one priority and pain will be very prevalent. In our sweet girl, who knows little pain and doesn’t have the ability to say mama.. it’s at a 6, it’s an 8, God forbid, it’s a 10. We have to guess at how we help her going off instincts and her cues. Obviously something we’ve done for 12 years and I am fairly confident in, yet can you ever be 100% confident in something you never hear confirmation on?


I have been at peace. Until now. My mama heart is racing. My mama tummy is in knots and my mama brain is so full it is hard to remind myself that where my focus needs to lie. It seems the only things I am finding comfort in is Starbucks and Target. I am not kidding.
But thankfully this morning I found my verse. And I read my verse and I am reminded that I don’t have to rely on myself (nor Target or Starbucks) for the strength to get through this. I am coveted by a good God who loves Lily even more than we do. Hard to imagine but I know this is true. And I know he wants to see her in less in pain than we do. Hard to imagine but I know this is true. And he will see her through this. He will see me through this. He will see us all through this. He has given me the skills I need to be here at this place now. He has supplied us with incredible support of family and friends that hold us high and pray with us and cover us and I am finding myself coming down off the edge a little bit. This is my breathing in a bag. Writing, reading, breathing in him.
Philippians 4: 6-9  6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
Thank you to those praying, supporting us via iheartlily.com and just asking how can we help. You are my heart just by being here. I may be absent, obnoxious, a space cake and all knowing all in the same moment and none of those things in the next, but you all love me thru it and thank you for continuing to do so.
I will keep you all posted on this. Probably mostly via facebook. But if you know me, you already knew that.

Thursday, March 19, 2015

To the One Who is Stuck in the Middle

Dear my Andi (stuck in the middle) Jane,

Hey there my girl! I’m writing this the day after you turned 10 (10?! When did that happen?) Some things really made me think a lot about you and they made me think about me as a mama and I felt like these feelings should be put on paper before they are just a vapor of thoughts that were here and then gone. Did you know you are quite amazing? Wonderful in fact!  I probably don’t tell you that nearly enough. But you are a one of a kind person who changed my life totally and completely.

On your birthday we sat and watched old movies. We laughed at what a cute silly baby you were. But I watched you watch the videos and watched you watch as we (your parents) would scan the camera from you to Lily and we’d say how beautiful Lily was and what a good girl she was and what a wonderful girl she was, then we would scan back to you and say things like what a silly girl you were, crazy girl, wild girl, even bad girl. And I don’t know what you were experiencing while watching, but I cringed. I cringed for you because you were doing all those things I had hoped for Lily to do and you were so advanced, so smart, so funny and I felt bad Lily couldn't do those things and I could see that I parented you both so differently. I saw it with my own eyes. You grew up in a shadow you never could get out from under. I knew it, but I didn't see it like I did on Tuesday as we watched those videos. I guess my brain said Andi is tough, Andi is independent and she didn't need me to coddle her like I felt Lily needed. Still needs. And I try not to live with regrets but I do wish I had done things differently for you at times. I wanted so badly to go back in time to the place of that video and pick you up, snuggle you and whisper to you that you are so good, so special to us, so smart, so beautiful, and so sweet. I loved on you as a baby, I nursed you until you were 2 (sorry, I know so embarrassing) so I am not saying you were neglected, you were loved, you were cuddled, and I don’t think I can put into words what I saw on the screen as I watched those movies, I just know it was different. I was a different mom to you both and I know that it would be impossible to not do that, I just wish I gave you more. And back then there wasn't much more of me to give, but I should have found it and gave it to you.

Oh my Andi. The thing about you though is you never showed any resentment towards Lily. You always have and always do for her. Love on her, care for her. You are the best sister Lily could ever have and while I know that, I had to watch those videos to really KNOW it. It isn't easy being you. And then we added a little brother to the mix and honey I understand it isn't fair for you a lot of the time.

When you asked if it could just be you and I on your birthday, no Lily, no Oliver, just you and I, I know you felt bad saying that, you told me so, but I am glad you were able to say it. If you want your special day spent shopping with your mama you can have that. And what a fun day that was! That’s allowed every once and awhile.

You were not given an easy place in this world. You have had to grow up faster than most kids your age. You see your parents put your sister’s needs before yours and you somehow “get it”.  It doesn't even seem fair for you to have to get it, but you do.

There may be days that just seem hard, that you just want to lie around and not talk to us and that’s OK. Every once in a while, that is OK, but thank you for not staying in those moods. Thank you for your smiles, your dances, your songs, and your awesome friends you chose. Andi Jane, you are a good person. I am not just saying that as your mom, you are a person I am happy to know and love to be around. Sometimes I push you to do things better and bug you to try harder but I hope you know it is because you are meant for awesome things. I don’t want you ever shorting yourself on all you can be.

I think we do better now, but there were many years I admit were not my best and you witnessed those years and you grew up as your parents grew up. We are all growing together. And I pray we are growing better and stronger and I am sorry for things and I am grateful for things and I am a better mother and better person because of you three kids who give me life.

God placed you in our lives when he did and made you exactly who you were meant to be. He knitted you in my womb… isn't that awesome?! He knows every hair on your head. I used to say this verse over and over for Lily and I believe it 100% for her BUT I believe it 100% for you too. And even that little brother of yours ;) You are exactly who God meant for you to be and you are exactly the person to have your place in this family and in this world.

We cherish you and celebrate you! As much as it saddens me for you to grow up, it also excites me seeing who you are becoming and I know as challenging as those first 10 years were at times, I know the next 10 will have many more and different challenges, I pray you always know God is walking side by side with you. Look to him in all your life choices he will never lead you astray. 

Happy 10th Birthday Andi Jane! Continue to shine his light! Thank you for staying true to yourself and always continue to do just that!





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