Honeyed Heart

Happy Halloween!

Did everyone see Maxley’s Halloween costume??

My incredible friend Cory took this picture and I can’t stop smiling!!! This sums up so much about him. Just the happiest kid in the world.

I hope everyone had a wonderful holiday! I took Maxley trick or treating for the first time with his cousins and it was a blast! I got to get out and meet some neighbors and it was nice to get Maxley out!

My work takes halloween very seriously and my department dressed up as fast food (check out my Instagram story today to see) so I was Chick-fil-a!

The incredible Amy Mullenmeister Photography has done it again! Thank you Amy for putting up with all my, “what if we…” and for always making photo shoots fun for Maxley and I!

I absolutely love my pictures from last weekend!

I did a more formal photo session a few weeks ago that I am using for my Shutterfly Christmas Cards so I will post those after I send my cards out! I did post several as a sneak peek a few weeks ago on my Instagram.

Local Friends: Amy is still booking fall sessions if you haven’t done fall pictures yet!

PS: I will be posting Maxley’s halloween picture tomorrow morning onto Instagram/ my Blog Facebook page so watch out for it!

It may periodically take your O2 away…

Maxley had an appointment this morning to get his monthly liver panel and electrolytes done. He handles needles ok but it hurts me every time.

He has been poked and prodded more than anyone and I can’t wait for these to end. Unfortunately some of the meds he is on are really hard on your liver so before they ship the meds to us each month, he has to get the liver panel.

The electrolyte panel is just to make sure all is good since we ended up in the hospital for a week in July for an imbalance.

We get results tomorrow but it should all be good.

After that we ran up to Minnetonka to his cranial appointment, his last one! He got officially discharged today from the helmet!

Not sure who is happier, me or him. He has already hit his head a few times and so he will learn but at least he doesn’t smell like a foot all the time.

We cleaned the helmet everyday during his one hour off that he got but it still absorbs the smell and it was potent.

He is still struggling with naps but sleeping well at night most of the time and so we pick our battles.

Now that he is crawling he is everywhere and I have no clue how I will keep up! Prayers welcome, as always!

I got to see his Halloween pictures today and I seriously can not wait to share them!!!! My friend Cory is so talented!! He did my wedding photos along with another friend and they are just the best!

Stay tuned on Halloween…

Too big of news not to share!

Tonight, Maxley crawled for the first time. He has been kinda close for a bit but now he is on the move and hasn’t stopped since.

https://youtu.be/fxTFi2alJBc

Check out the video. This was moments after his first time.

I was on the phone with my boss and I was sitting in the living room and he just got up on all 4s and crawled across the living room. I couldn’t believe my eyes!!

I am so incredibly proud of how far he has come!!

I know I never post anymore and I want to get back to it. Summer was tough and nursing coverage hasn’t been great either.

I hope you all enjoy your Maxley fix for today.

Some of you may know my Grandma, LeRae.

I have grown up knowing her as Grandma Weezie, not quite sure why to be honest.

My grandma has always been extremely close to our family. I grew up with her at every family get together and every family event. It’s not even an event unless she is there. She has always lived close to my family and don’t go long without seeing her.

She is an incredible mom to three kids, grandma to three kids and great grandma to three kids!

My grandma and Scott actually share a birthday, exactly 50 years apart. Scott would have been 32 this year but I won’t tell you how old Grandma will be. 😉

We got some pretty devastating news last week about grandma. She was diagnosed with stage 4 Lymphoma, a cancer they found because of a large tumor that has eaten away at her pelvic bone.

I don’t have to tell you all that this has been an very difficult time for my family. We are all trying to come to terms with the new reality of helping grandma fight this awful disease.

She is by far the strongest woman I know. She has been there for me and my sisters through everything and we are going to be here to help her fight.

You have all done incredible things for me and for Maxley through prayer, positive thoughts, positive vibes and love and I’m asking for a little bit more from you all for her.

She will get through this but she may need some help getting back up when the chemo has her really down.

It will be a long road but we will get there!

I added my PO Box address under contact me if you would like to send her a card or anything.

Thank you all,

Kelsey

I cant believe how much time goes by between my posts. Oof.

Well here is the latest:

Maxley has surgery yesterday. He got his broviac IV central line taken out. He needed to be sedated and intubated for the procedure.

He also had another procedure done at the same time but for the sake of respecting just a little of Maxley’s privacy, I won’t get into it. Unfortunately, that was the bigger part of the surgery. He has 3 large incisions that look incredibly painful but he has been a trooper.

He isn’t in a ton of pain and it’s been managed with Tylenol and one dose of oxycodone so far.

Maxley and I had to be downtown at childrens by 7:30, surgery was at 9:00. I was able to hold him again in his room by 12. It was a long long day and we ended up spending the night. We got discharged this afternoon.

He has been really happy all day. Just seems really tired. He had a pretty big surgery yesterday and that takes a lot out of you.

It takes a lot out of me too.

I’m so exhausted from the constant stress of what is next with him. This was surgery number 7 and it doesn’t get easier.

This was the first time I was able to walk him back to the operating room. They have never asked me to do that before. They had me hold his hands and sing to him while they put him to sleep. That was so hard. That was harder than them just taking him away for some reason.

It’s so hard to see your helpless child lying on an operating table in a cold, white, sterile room and just walking away. You don’t ever really know if he’ll be ok afterward.

It just doesn’t get easier.

Thank you to everyone who has supported my campaign this week.

The Moms We Love featured me this week. If you haven’t checked it out, please do!

If you can, please share! It’s going on through Friday! It’s been amazing and I’ll share at the end how incredible this campaign was.

They are sharing my story to get prayers, love and donations!

Pictures from Amy Mullenmeister Photography

Woke up this morning to my nurse calling my name from downstairs.

His GJ tube came out. The balloon that holds it in had popped.

Off to Children’s Emergency Department we went.

We spent the better part of the day there. We had to go down to fluoroscopy to get x-rays and make sure it was placed correctly. They replaced the whole tube and sent us on our way.

Tonight I took him to Target for his first real trip.

He liked it!!! He looked at everything and was so good!

Not much else to report.

Maxley and I are being featured on a page called The Moms We Love Club this week. Go and check them out! Be sure to share the posts to gain attention to the campaign.

Check back everyday for new pictures and posts of Maxley and I! Of course all the pictures were the amazing Amy Mullenmeister Photography.

—

Maxley got to go on his first boat ride last night!

He had a lot of fun and it was a beautiful night!

He got to go to the beach for the first time last week too.

It has been so fun to take him out and go places. The week before was the zoo with some friends.

He has been such a good boy and growing a lot. He was 16lbs 4oz at the doctor today. He still just has the 2 teeth. He wearing mostly 3-6 month clothes but some 0-3 still fit and his jammies are 6-9 month so he must be tall.

I am sure everyone thinks that something happened to Maxley and I.

The truth is, nothing has happened and I couldn’t be happier about that.

In the last 3 weeks since I have posted last:

-My Canadian family came in and we celebrated Maxley’s birthday with 70 of my closest friends and family.
– I quietly acknowledged the 1 year anniversary of Scott’s funeral.
-Maxley’s birthday pictures
-I spent a weekend at a vasculitis symposium and learned a lot about his terrible disease and I want to bring more awareness to it

I will work on posting more but I have SO much to share. This might get long.

Maxley has overall been really happy. He needs oxygen again at night. We aren’t sure why. We had a sleep study done last week and then we meet with his pulmonologist next week to see results and talk about next steps.

He is sitting really really well and even standing holding onto something for a minute or so.

He still hasn’t fully rolled over on his own but I know he can he just won’t.

Here are some pictures from his birthday party! My friend the amazing Amy Mullenmeister Photography took these.

I will post his one year photos later! Some are on my instagram if you want to see them!

I know so much more has happened since I posted last but it is hard to remember it all.

Thank you to so many of you for following along on my Facebook page too!

Lastly, I was selected for a Both Hands project happening this weekend.

Both hands is an organization to help a family raise money to adopt an orphan. This incredible local family and a team of their family and friends is coming to my house this weekend to do service projects around my house. You can help by sponsoring someone to come help or donating directly to their adoption.

Find out more here.

Thank you for considering a donation to bring their little boy home.

He has been so happy and sleeping through the night.

Check your my YouTube for some videos from tonight!

I know a bunch of people got their Team Maxley shirts in the mail today!! Don’t forget to post a picture and tag @HoneyedHeart and #teammaxley

His eye is still infected so we had to bring him in again this morning and got another round of drops. Hoping this helps.

Today…

Today was so very bittersweet. Today I turned 31. Today I am older than Scott ever got to be. I’ve had a really hard time leading up to this day and was not sad at all to skip the day and spend it with Maxley in the hospital. I’ve cried a lot thinking about the fact that Scott never got to be 31. He died 3 months shy of his 31st birthday. At the eternal age of 30.

I will never get to watch him grow up. I will never get to see what a handsome older man he would be. He was so handsome, I know he would have been so cute as an older man.

30. That’s too young. His sister turned 30 a couple weeks ago and I can’t believe it. It’s so shocking to me that we all just keep growing old and he will never get the chance.

I normally love my birthday. I love celebrating me and having everyone I love surrounding me. Scott would spoil me and let me do whatever I wanted. His family calls it Birthday magic and you get it for a week. He will do anything you ask for the entire week. It’s the best. Last year I got a tattoo for him on my 30th since it was just a few weeks after I lost him.

This year I told all my friends and family to skip it. It’s just another day this year. It’s not about getting older, I don’t mind that. I had a really great life lined up for myself and aging is ok because we were growing our family and so damn happy. Now, I’m older than him.

On the good side, we got discharged today! We are home and I am writing this from my bed. I can’t tell you how happy I am to be in my bed. It was only 4 nights but without the mattress topper on the futon, it might as well be the ground it’s so hard.

The doctors said it was up to me if we were ready to leave today and my mom and I both basically got up and started packing while he was still in the room. If we wanted to stay another night we could but I was ready.

His numbers have been good and stable. He has been sleeping like a dream at night. He got up at 10am yesterday and is just such a sweetie. We will see if he sleeps for me tonight at home. I don’t have a nurse tonight so let’s all cross our fingers.

We have a new plan in place for venting his g-tube (the diaper you see hanging off him in all the pictures) that is a vent from his stomach. That way air can drain out or stomach acid. Well, since he has lost a pound since getting discharged in May, our new plan is to clip the diaper so it can’t drain.

It turns out that all the stuff that has been draining out is contributing to his high sodium and lack of growth. So, I hope that he will start growing now that we are being diligent about that.

I also met with the Dietition yesterday while admitted and we have a new plan to work on feeding orally. He is super interested so we are going to be better about that too. Maybe one day, we can get rid of his Jtube at least. The G was fine before surgery, it’s the J that is the root of the issues.

He had his first bath since surgery in January. He hasn’t been able to because of his broviac IV but I found a aqua guard cover online and I tried it tonight. He loved being able to play and splash! He needed a good bath. I will still keep doing sponge baths for the most part but it’s a nice option to have.

It feels like we were gone forever. I can’t believe it was only 5 days. We got home about 12:30 and he was pretty good this afternoon. He wouldn’t nap of course but my mom stayed and helped me around the house.

We left in a hurry so laundry needed to be done, food thrown out, dishes washed, etc.

Maxley’s birthday party is this coming weekend so I have a lot to do to get ready for that.

Thank you to everyone for the birthday love and to those who pretended to ignore it. I am truly lucky for what is here on earth with me, I’m just missing my other half in heaven.

Another boring day.

The only “big” thing that happened today was that he had a spell of throwing up bile and his GJ tube was oozing a lot. The doctors were getting a little concerned for a few reasons. All the ooze is electrolytes that he needs, it is annoying and the tube could be in the wrong place.

So, he went to radiology to get the tube placement checked, another procedure.

Luckily it is in the right place. The was potential of another surgery if it wasn’t.

Based on the test results, they thing he will just grow out of the oozing. Until then, it is annoying. He went through about 5 outfits in 15 minutes from the puking and oozing and pooping. Oh the joys.

I would just keep him naked except he pulls on his tube and he has already pulled it out before, we don’t need that to happen again!

His sodium levels are down to 147 which is within range. He is on full feeds and off of fluids. He is a lot less puffy but still having diarrhea. The are concerned about that. They really want that to stop before sending him home.

I think it is just from his antibiotic he was on but he is off now and will hopefully run the course soon enough.

His diaper rash looks really good so that is a relief.

Everyone else on our floor got discharged today so we are the only people up on the 5th floor in this unit.

SO weird. The nice thing is we have 1 to 1 nursing so Maxley gets all the attention.

I took him on another walk around the 4th floor today and everyone wanted to hold him and cuddle him and just kept talking about how good he looks. It is so nice to hear, they of all people know how far he has come and what a miracle he is.

I made an album on Shutterfly tonight of his 2nd hospital stay. I have one from his first and it was a trip to go through the pictures of him on ECMO and the days he was so sick. I forgot that I had gone 2.5 months without holding him. That sounds unbearable now.

I think the whole experience seems surreal now. I can’t believe how far we have come in 2019 and it is only half over.

Happy 4th of July.

I hope everyone had a nice, safe day today. Maxley and I had a nice day. My friend Kalie showed up and surprised me with an iced coffee, my friend Jaime surprise me with this amazing 4th of July gift basket with everything I need to have the perfect indoor picnic!! It was so sweet.

My grandpa is visiting from Walker and so he finally got to meet Maxley!

All in all it was nice. We are back in the pediatric ICU where we were when we got discharged because it is overflow from the cardiac unit but we still have cardiac nurses and the same doctors. So, we went for a walk downstairs in the actually CV unit. We wanted to see all our friends and show off his USA pride.

I also put him in the same onesie he wore last year. It fit pretty well actually.

The rest of the day he napped and we just hung out.

His sodium is down to 147 on half feeds so hopefully tomorrow they will turn him up to full feeds and then he will need to maintain his sodium levels for at least 24 hours. So it would be Saturday at the earliest. They want his sodium between 135-145 so he is really close!

Still in the hospital. It looks like we will be here a few more days at least.

His sodium levels are dropping which is good but they actually dropped a little too fast which is dangerous too. They are bringing them back up a little and then slowly lowering them.

They might slowly start him back on feeds tomorrow and then he needs to be on full feeds for a couple days before we can go home.

It sucks.

In the grand scheme, who cares? He is healthy and it’s a short visit. I do feel that way but laying here alone in the hospital room, the night before my favorite holiday, I’m feeling sorry for myself.

I hate being stuck in here. This will be the 2nd 4th of July I’ve spent here. It just sucks.

I will be spending the day alone with Maxley. It is fine because I need to get used to it but it sucks. It sucks that everyone else gets to go about their day and spend this holiday with their partner or their family or their friends. I don’t get to do that. I am stuck here. I don’t want to leave him alone and go off and do something without him.

It’s not fair. I should be here with Scott. Everything was fun with him. Sitting in a quiet, dark hospital room on my favorite holiday would be ok because he would make it fun.

I try not to pity myself but sometimes I can’t help but feel overwhelming jealousy for everyone who isn’t me. Everyone who didn’t lose their best friend this year or everyone who gets to spend this day with their healthy kids.

I’ll just be here, alone.

On Monday’s Maxley gets labs drawn by a nurse from Children’s who comes to the house. Well after his labs yesterday I got a call from his cardiologist that his sodium was high. They told us to stop his sodium supplements and get his labs checked again in the morning.

We took him in this morning to get his labs checked and they called a couple hours later that they were even higher. Dangerously high. It is called hypernatremia which is just high sodium in the blood. It is dangerous because it can cause seizures. They told us to come to Children’s as soon as possible and we would be getting admitted.

I was at work and so I left immediately to run home and grab Maxley. I threw a couple things in a bag but forgot essentials and rushed up here.

We are back in our old Cardiology Unit and have seen many of our friends. We took a walk and everyone was so happy to see him. They just can’t believe he is off oxygen and doing so well at home.

Tomorrow is his last day if Valium and he will officially be off all of his sedation meds. He just has Gabapentin to get off but that’s an easier one to wean.

Sounds like we will be here a few days but his sodium levels have already come down a few points so we are headed in the right direction.

They always worry it’s something bigger. I think it was the perfect storm of stopping one of his diuretics last week, continuing to give him sodium, he has had diarrhea and then we were giving him pedialyte which is all sodium.

I am hopeful we will get this sorted out and it’s not something bigger like his kidneys.

If someone knows how we can catch a break, I am all ears.

Amy Arends made some Team Maxley shirts and she is giving 50% of the proceeds to Maxley and I!!

Get your shirts here.

I am also selling Honeyed Heart Apparel too! Shop Adults & Kids or check our my Shop page above!

Tons of color and size options.

This is an incredible way to show your support for Maxley and I! Proceeds from both shops go directly to Maxley & I.

I can’t thank everyone enough for the love and support I have been shown.

I can’t wait to run into someone wearing my logo!

This week has been busy busy.

Saturday morning me and some friends did the Walk for Amazing to raise money for Children’s Hospital. It was at US Bank Stadium and a fun event.

Saturday night I caught what I assumed was an infection near his GJ tube. I called the nurse line and ended up bringing him in first thing Sunday morning. We only had to stay a few hours and ended up getting some antibiotics and a cream and it’s already looking better today.

After the walk I went to a picnic for NICU families. It was with all his doctors that rounded on him in the NICU/ ICC from his first hospital stay so that was cool. Then my friend Ariana who I met when I was in antipartum trying to stay pregnant with Maxley. We ended up having them 52 minutes apart on the same day. So she brought her daughter, Mikeala! It was so fun for them to meet and for me to get to hold Mikeala and her to hold and meet Maxley!

—————–

Along with the antibiotic comes tons and tons, did I mention tons of diarrhea. His diaper rash is open again and bleeding profusely. It got so good there for a while because he didn’t poop for so many weeks when he was on ECMO but the skin specialist at the wound clinic we took him to last year said that skin cells grow back at like 60% of the normal strength so once you get diaper rash it’s really easy to get it again and again and again.

Today my mom, Maxley and I headed downtown for a huge chunk of his follow up visits. Most of his specialists wanted to see him 1 month after discharge. We got to see lots of his friends who helped save his life over and over again. It was fun to see people that were there in his darkest times. All of the appointments went well and we finally got the O.K. from the endocrinologist to pick him up normally!!!!! Basically, since he was 7 months old, I haven’t been able to pick him up under his arm pits like a normal baby!

Typically after open heart surgery it’s a 6 week period where they tell you not to so that you don’t crack his chest back open. Well, because his bones were so week we were still on the osteopenia protocol which is not to pick him up like that at all. I have to scoop one hand under his butt and one under his back to pick him up. One time, I got him stuck in a bumbo seat because I couldn’t pick him up like that. I had to tip the whole chair over and slowly let him sort of fall out.

So anyway, it’s so exciting that I can hold him and pick him up like that again. It’s a big step and feels so wrong when I do it now.

Everyone else was happy with his progress and excited he is off oxygen.

The only not so good news is he has lost 1lb since discharge. It’s very concerning and a huge issue with tubie kiddos. We will work with our nutritionist to get him growing again. He is down to 14lbs.

He is off of methadone as of 1am last night so that’s exciting! Just 2 meds left!! These are the 2 hardest to come off and so it’s a huge win!

He has gotten 2 teeth FINALLY to pop through yesterday!!

And everyone has been asking so I will deliver… here is Maxley’s hair in a ponytail!! He looks like a lady!

He didn’t sleep a wink last night, maybe an hour or so. So I’m hoping tonight is a little better!

This week has been busy busy.

Saturday morning me and some friends did the Walk for Amazing to raise money for Children’s Hospital. It was at US Bank Stadium and a fun event.

Saturday night I caught what I assumed was an infection near his GJ tube. I called the nurse line and ended up bringing him in first thing Sunday morning. We only had to stay a few hours and ended up getting some antibiotics and a cream and it’s already looking better today.

After the walk I went to a picnic for NICU families. It was with all his doctors that rounded on him in the NICU/ ICC from his first hospital stay so that was cool. Then my friend Ariana who I met when I was in antipartum trying to stay pregnant with Maxley. We ended up having them 52 minutes apart on the same day. So she brought her daughter, Mikeala! It was so fun for them to meet and for me to get to hold Mikeala and her to hold and meet Maxley!

—————–

Along with the antibiotic comes tons and tons, did I mention tons of diarrhea. His diaper rash is open again and bleeding profusely. It got so good there for a while because he didn’t poop for so many weeks when he was on ECMO but the skin specialist at the wound clinic we took him to last year said that skin cells grow back at like 60% of the normal strength so once you get diaper rash it’s really easy to get it again and again and again.

Today my mom, Maxley and I headed downtown for a huge chunk of his follow up visits. Most of his specialists wanted to see him 1 month after discharge. We got to see lots of his friends who helped save his life over and over again. It was fun to see people that were there in his darkest times. All of the appointments went well and we finally got the O.K. from the endocrinologist to pick him up normally!!!!! Basically, since he was 7 months old, I haven’t been able to pick him up under his arm pits like a normal baby!

Typically after open heart surgery it’s a 6 week period where they tell you not to so that you don’t crack his chest back open. Well, because his bones were so week we were still on the osteopenia protocol which is not to pick him up like that at all. I have to scoop one hand under his butt and one under his back to pick him up. One time, I got him stuck in a bumbo seat because I couldn’t pick him up like that. I had to tip the whole chair over and slowly let him sort of fall out.

So anyway, it’s so exciting that I can hold him and pick him up like that again. It’s a big step and feels so wrong when I do it now.

Everyone else was happy with his progress and excited he is off oxygen.

The only not so good news is he has lost 1lb since discharge. It’s very concerning and a huge issue with tubie kiddos. We will work with our nutritionist to get him growing again. He is down to 14lbs.

He is off of methadone as of 1am last night so that’s exciting! Just 2 meds left!! These are the 2 hardest to come off and so it’s a huge win!

He has gotten 2 teeth FINALLY to pop through yesterday!!

And everyone has been asking so I will deliver… here is Maxley’s hair in a ponytail!! He looks like a lady!

He didn’t sleep a wink last night, maybe an hour or so. So I’m hoping tonight is a little better!

A lot has happened since I posted last.

First things first… sorry for not posting! My blog was down and ((hopefully)) it is back up and running.

I couldn’t possibly write about everything that has happened over the last 3 weeks but I will post some pictures so you can see some of what Maxley and I have been up to and try to give you the highlights.

Some big milestones happened the first week of June.

June 8th, 2019 was 1 year since losing my best friend. I truly can not believe it has been a year. Oh what a year it has been. It has been rough. It is getting harder. I thought it would get easier as time went on but it turns out I am more broken than ever.

I should be having more good days but instead I have more bad. I cry without warning and miss him at the most random of times.

I scream to myself a lot and take every advantage of being alone to let out some loud angry sobs. Maxley just looks up and smiles at me. I think he is trying to make me feel better and also, I am probably a funny looking cryer.

I spent the day alone and out of the house. That evening, I took Maxley to go see his daddy for the first time since the headstone went in. We sat on a blanket and I told him about his daddy. I told Maxley that this was daddy’s heaven day.

In my widow group they talk about what you want to call it. That it should have a name so you don’t have to say the day he passed or whatever. So, June 8 will forever be Scott’s heaven day. It sounds nice. It sounds like something ok happened that day instead of the worst day in the history of forever.

Then, 4 days later, Maxley’s first birthday!! Still ugly crying but for a totally different reason now.

ONE.

ONE YEAR OLD.

I can’t believe it.

I didn’t do much on his birthday. My best friend came over and he tried frosting from a cupcake and didn’t care for it and then tried ice cream and loved it. It was cute.

I somehow (not sure how) found a 3 month birthday boy shirt without even trying. He is in 3 month clothes and so it fit perfectly.

He will be having a birthday party in July to celebrate with family and friends. I planned it late because I wasn’t sure we would be out of the hospital yet and I wanted my Canadian family to be able to come for it.

Then, to add insult to injury, just a few days after that is fathers day.

I brought Maxley back to see his daddy on Father’s day. I gave Scott the #1 dad hat and Maxley the #1 Kid hat. Both true.

_________________

The other big things that have happened. Maxley is officially off of oxygen. He has been weaning for a couple weeks and I officially took his cannula stickers off last night. So far, so good!!! It is so crazy! Just 3 months ago he was coming off of life support and now he is breathing on his own.

He has found this really incredible little giggle.

And a new dance move…

Sorry for all of the videos. It is easier than explaining it. So, I haven’t been posting but it doesn’t mean I wasn’t documenting!

He got to swing with his cousins and LOVED it. Hence my almost a cry screaching voice!

We have been taking him on walks and trying to get him out.

We have gone out to eat twice.

He has been so happy. He is off one of his medications. So, 3 more to go!!

That was a lot. I am sure I am missing some really important things but that is enough for tonight.

Thank you for sticking with me through this journey. It has been a crap year and you have all been so wonderful. Thank you!

Not much new around here. Just the usual stuff. Trying to get him to sleep, trying to get him to laugh.

We have OT coming twice a week, PT coming, a nurse from Children’s comes twice a week for his broviac line.

He has been so happy. So giggly. It is just so fun to see him like this.

I have been trying to take him on walks and get out of the house.

I have been posting pictures to my instagram story and Instagram feed so follow me there!

I will keep posting but not everyday like before!

Things have been really good around here. We are getting into a routine and he is sleeping!

Thursday night he slept in 2, 2 hour chunks and took good naps yesterday and then last night he slept 5 hours in a row! I think it might have been longer but the nurse had to wake him at 11 when she got here to take his temperature.

He has been so much happier and it’s so nice to see. We are getting smiles although they don’t last long and are harder to come by. He has been so easy.

He just lays there and plays or falls asleep in his chair. This kid is glorious.

It’s shocking when he doesn’t just scream or cry 94% of the time.

I took him on a walk tonight around my neighborhood and it was so nice to get out. He has never been in his stroller without the car seat and only then he only went on a couple walks.

Mom and I are still trying to get the med thing down. He gets 15 different meds and some are every 4 hours, some are every 6 and some are every 8. We have 2 that are twice a day and some that are pills you crush and others have to stay in the fridge.

We are trying to stay organized and figure out the best solution for the meds. We aren’t quite there but are working on it. Inevitably we will go up to his room to give his meds during his nap and will have forgotten the connector piece or forgot to turn his feeds back on so the minute you get to the bottom of the stairs, it beeps and you and you have to run up to turn it back on before it wakes him.

There is a large learning curve with the mom job. I have a long way to go.

I am looking forward to spending some time outside and getting some stuff done around the house this long weekend.

I hope everyone is safe and has a wonderful holiday weekend.

Maxley has still got it rough. He is really struggling. Still no smiles. He looks like he is in pain all the time. I feel so bad for him.

He is normally so happy and still no smiles no laughs. It sucks. I miss my boy.

He slept in 2 one hour stretches last night and that’s the most we have gotten out of him in weeks. He is sleeping about 30 minutes at a time for the most part.

When Maxley has it rough, everybody has it rough.

I feel like my life is in shambles. I have so much to do and no time to do it. My house is chaos from living in a hospital for 16 weeks.

Everything from the hospital, anything I ordered or was sent to me is in a pile in my kitchen or in my bedroom and we can’t find anything we need.

We got a truck load of medical equipment but I haven’t had any time to organize or put anything away. I need 10 arms to get everything done. So, we dig and dig when the nurses or I need anything.

It’s overwhelming.

The list is never ending.

I am incredibly overwhelmed at the prospect of ever running my house alone. My mom helps so much with cooking and laundry and organizing.

I can be good at it too but it’s all just so much. And then trying to spend time with Maxley before he goes to bed.

I know this is normal parenting but his medical needs make it seem exemplified.

Maybe one day it will be easier.

I have so much more to say and so many more pictures to post but all I can say is that…

.

.

.

𝕨𝕖 𝕒𝕣𝕖 𝕙𝕠𝕞𝕖

.

.

.

After 16 weeks, Maxley is home from the hospital. Today has been a whirlwind and I have so much to say. More to come tomorrow.

Today was rough. Today was (another) one of those days where he cried for hours on end. Today was one of those days where it sucks to have nurses and staff in and out of your room all day because all I want to do is curl up in the corner and cry right along side Maxley. He cries endlessly and there is nothing I can do except cry too.

But, because nurses and staff are always around, I go into the bathroom and have a good cry before coming out and facing the world again. I hide my tears and my anger because I am ashamed. I have all this help here with the nurses and with my mom and yet I can’t be alone for 1 day without help.

It is hard.

It is so hard.

I am tired. I am tired of being in the hospital. I am tired of Maxley feeling like crap. He is sick from weaning the drugs and he is withdrawing. We are taking away drugs and narcotics that we forced him to get addicted to. It is torture. He is shaky and cries uncontrollably.

It isn’t his fault. I know it isn’t his fault but I am still mad. I am mad that I am in this situation and I am mad I am here alone.

As always I have my mom but I just want Scott. I want him to call and cry to. I want him to come and relieve me so I don’t feel bad for asking for the help. I want him to be here and to experience the hard right along with me.

I am tired of being in the hospital. I am tired of sleeping on a futon and from hospital food and of living out of a duffel bag for the last 111 days.

I am so tired of this life. Tired of knowing this is my forever.

I am just tired.

I feel so bad for Maxley. I stare at his tiny little body covered in scars. He has 15-20 large visable scars on his tiny chest, tummy and both sides of his neck. He has tubes implanted in his body. He has bandages and wires coming out everywhere. He doesn’t know any different and I understand but I do.

I know what he “should” look like without all of that. He was robbed of so many things and I am mad for him. I am mad he doesn’t have his perfect little baby tummy without any scars like many of my friends kids. He will forever be covered in scars that will remind him of the shit he had to endure just to be here.

I am thankful for every one of those scars because they saved his life but he shouldn’t have needed to be saved in the first place.

I am just having a bad day and I guess you all get to hear my sorrow.

How pathetic do I sound.

I am thankful that he is here to fight another day and ultimately I know he will get through this drug wean and the scars are superficial.

He is here and so am I.

Maxley had another ok night. I was up quite a bit with him but he did seem to calm easily.

He was supposed to wear the helmet for 8 hours today but my mom said she barely got 2.

I was gone most of the day at my friend Shannon’s bachelorette party!! It was so fun! We had a party bus and went to wineries.

It was chilly out but it was so nice to get out of the hospital and have some fun with my friends. Shannon and I met in college in our sorority and so there was a group of Kappa’s there today and that always means a good time!

It was the perfect day to celebrate Shannon before her big day!!

I got back to the hospital around dinner time and played with Maxley for a bit before putting him to bed.

Sorry about no post last night. I got home from work about 7:30 and then he was in bed about 8. There wasn’t much to write about so I decided to skip it.

I know people were concerned, there is no need to be scared anymore.

Unless you’re scared for my sanity. Maxley screamed for about 3 hours straight today. There was nothing I could do to calm him. He was inconsolable. I am not sure if it is withdrawls or food or his bones or overtired or meds or what. But, I was losing my mind.

He screams so loud and so hard he stops breathing or holds his breath and nothing I do stops the screaming. Anyone who has had a child understands the incessant crying. It just eats at your nerves.

He finally ended up falling asleep unswaddled, just sort of hap hazard in his bed and slept for over 3 hours.

This was also the first time he napped in the helmet! He did ok actually. He was so irritated today but it didn’t seem to have to do with the helmet.

We got to play with OT today and he got to drink out of a sippy cup for the first time!!

We just put ice water in there but he seemed to really like it!

Maxley also had a great time playing with Erin the music therapist!

Today was a better day. He seems to be handling the withdrawl a little better today but we have a long way to go on them. The good news is that it won’t keep us in the hospital. We can wean the meds at home.

He is sleeping a little better but he is back to his ways of 45-60 minutes sleeps at a time. Everytime.

He naps for an hour, he wakes up, you pat him back to sleep for another hour. UGH.

It is exhausting.

He does it all night long too. This is what my mom and I did for 4 months. We only had 3 overnight nurses so it was us, everynight, every hour.

He slept a few hours about 4 -5 times. That was it.

I hope it is the meds and that it gets better.

I took him on a couple walks today! A couple around the unit…

… and then after his afternoon nap, we got to go around the unit again and then go outside!! I laid a blanket down and we laid on the blanket and enjoyed the beautiful day.

I can’t even stand how beautiful he is.

The other exciting news is that he got his helmet today!!

He only had to wear it for an hour today and then we ramp up to the 23 hours a day that he has to wear it.

He didn’t like it all that much but was easily distracted when he wasn’t happy.