Honeyed Heart

8 years ago today, Scott asked me to be his girlfriend. We actually dated for a few weeks in 2010 but then he broke up with me (we all make mistakes!). So when he wanted to get back together in March of 2011, I made him wait a while to make sure he knew what he wanted.

I remember him asking me. I was staying at my moms for the weekend home from college and he came down with me. We were laying in bed staring at the ceiling and he asked me to be his girlfriend. It was an infinite yes.

He moved to Canada 2 weeks later because he was drafted to the CFL and we did long distance until I moved there after graduation in December.

About 2 weeks into dating him (the first time) I told him I was going to marry him. I told him how much he scared me because before him I NEVER wanted to get married. I swore up and down I wouldn’t do it. Well, that all changed for him.

He was an incredible husband and made my life easy. I was happy every single day with him. That isn’t a line and it isn’t a lie. I was happy everyday. I am not saying we didn’t disagree or argue but we rarely fought. He was just my best friend.

We did everything together and there isn’t a single thing in my life that doesn’t remind me of him.

I still can’t believe he is gone. I feel like I have known him my whole life and so the fact that it’s only been 8.5 years since we met. I feel like that’s my whole life. I met him a few weeks after my 22nd birthday and that’s when my life began.

I would say my world ended the day he left this earth but in a way a new life began when our son was born just 4 days later.

I have spent a lot of the last 11 months hating the hand I was given but watching Maxley almost join his dad in heaven, I have a new appreciation for this life I’ve been given.

I wish I could say that I’ve loved Maxley with my whole heart everyday since he has been born but I haven’t. I spent a lot of time resenting the fact that I have to do this alone or the fact that I don’t have Scott. It isn’t Maxley’s fault his dad isn’t here, losing him had nothing to do with our son but it happened too soon for my mind to wrap my head around the difference.

Subconsciously, having a baby meant I had to give up Scott. I didn’t want that.

A few months after he passed, good friends of mine told me they were pregnant and I sobbed. I cried so hard for hours and I couldn’t figure out why. I realized later that it was because my brain was telling me that my friend’s husband would die. That my friend wouldn’t get to meet his son. I cried so hard over imaging them in my situation and I couldn’t handle it. I realize that it’s not true but it was heartbreaking.

I am so thankful that 8 years ago Scott picked me. Despite everything, I would do it all over again. I was meant to be Kelsey Ferguson. I was meant to be Scott’s wife.

I will always be Scott’s wife.

I love you, Scott. Forever.

Cute little Maxley fighting sleep.

The only big thing that happened today is we got moved… again.

They have so many post-ops and kids coming in that they had to move us up a floor to the overflow rooms. We are technically in the pediatric ICU floor but they have some rooms set aside for cardio patients.

This is a HUGE step to going home!!! It says, “you are so low priority that you can go to a totally different floor of the hospital because we don’t need to see you anymore!” This is a very good thing. Although, I already miss our nurse friends downstairs. 🙁

We went for another long walk around both units today. All the nurses just love on him and can’t believe how well he is doing. I got pictures of him with some of our main nurses and they just love holding him.

I have said this before but I know there was a lot of people who weren’t sure we would ever walk out of here with him. The alternative makes me physically sick.

There were so many days I thought the same thing.

I am so lucky he is here.

Walking around by all the other families still on ECMO, the ECMO nurses tell us this is why they do what they do. That is the coolest thing to hear.

He is a miracle. He really is.

Someone said to me the other day that they were so scared reading my posts from those days. My response was that if they weren’t scared, I wasn’t doing a good job writing the posts. I was scared. I was so scared and I guess I hope that it came out in my writing. I just tried to be honest and write what was happening.

I also compared it childbirth for the fact that your brain doesn’t let you remember it all or you wouldn’t do it again. I don’t think your brain allows you to remember all of of the trauma or I wouldn’t be able to continue living with the PTSD of it all.

It sounds like we could be going home in the next couple weeks. We are just waiting on word from from the nursing agency that they are fully staffed. The hospital said they are officially ready to discharge us!!!!

That is unreal. They said they could have actually discharged us today but we want to wait until we have nursing at home.

I can’t believe we could be home soon!!! 🙂

Maxley is 11 moths old today. I can’t believe it. I think I will cry on his birthday. I am ready for this year to be over because it hasn’t been good to me but on the other hand, I am devistated that the first year of his life was spent like this. I will never get that time back.

Today was a wonderful mother’s day. I spent the morning here with just me and Maxley. This afternoon my mom, sisters, brother and law and niece and nephew came up to the hospital to see Maxley and spend time together.

My sister and brother and law new that I would get to take Maxley to the park with them (the park is on the hospital campus) but I wanted to surprise Brooklyn. She turned 6 last weekend and she hasn’t seen Maxley since before his surgery in January.

Later Brooklyn asked me if the doctors knew that I took him out of his room. I laughed out loud. She is so cute!

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I posted 2 different times today to my Instagram about Mother’s day and I wanted to share them here to make sure people saw them! One about being a mom…

And then of course one about my mom…

A woman who has been following my story dropped off a very sweet mother’s day gift for me yesterday. It included the onesie Maxley is wearing above. It says, “you’re doing a great job, mommy, Happy Mother’s day, Love Maxley- 2019!”

So thoughtful!! Thank you Louise, that was so kind!!!! I love it!!

To finish off, after my family left, I was taking the elevator back to our floor and this woman sighs and rests her head against the wall. She says something to the guy she is with about maybe they can go home soon. She turns her head and looks at me and says, “we have been here since 11.” I turned back and looked at her and said, “I have been here since January.”

BOOM!!!

I mean maybe it was rude and she wasn’t trying to be either but trying to find sympathy in a hospital is just the wrong place. I truly hope everything is ok with her family but I mean, I feel like that was a one liner Scott would have been proud of!

Goodnight!

Maxley and I had a fun day.

He was incredibly happy all day. I got him giggling more than I every have before and it was from tickling his tummy. I am not sure if it was a one time thing but it was by far the cutest thing I have ever seen.

I got to take Maxley for another walk today. We walked around the unit and then I got to take him OUTSIDE!!!!

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It was pretty bright out so he didn’t last very long because it was hurting his eyes. But we walked outside and sat on a park bench. Who knew such a simple thing could quite literally make my week. I can’t believe I was sitting outside with him. Unreal.

We went back inside and walked around the hospital some more but then he started to get fussy so I had to pick him up and carry him and pull the wagon. Easier said than done. He is dead weight and doensn’t hold his head up very well when you are moving walking around and also he ha cords and an oxygen tube that were short and kept getting caught.

All in all, it was really good. I will be doing that more often hopefully!

Today was my niece, Brooklyn’s birthday party. I ran home and was able to get some clothes for Maxley. Anyone want to guess what size he is wearing in this picture below?

Everyone keeps saying how big he is and they don’t believe me when I say he is small, etc. Well… this outfit is a 0-3 month. 🙂

I wouldn’t lie about that. I even called my mom to tell her. ha ha

Anyway. Overall we had a really nice day. We played a lot and he took really good naps and was just so happy. I am ready to spend my first official mother’s day as a mom with him.

Happy mother’s day to all the mom’s of children on earth and happy mother’s day to the mom’s of children in heaven.

To the women trying to become a mom, I am sorry, I have been there and I know this day sucks. I am sorry.

We had the perfect day. Maxley was so good today. He layed by himself for a long time and played so I could work and so that I didn’t have to get to close to him since I am still sick.

We got to take him on his first walk!!!!! He has been on a walk in his stroller last fall twice but this was just in the hospital. He got to sit in a wagon and walk the halls. He didn’t know what to think. He stared a lot and gave a few smiles to some nurses but seemed content to just watch. I hope he likes strolling around Target this much!! 🙂

It was so fun to go to the other end of the hall and see so many of our nurses who saved Maxley’s life. It is like PTSD walking down there though. The hall has a different smell. There are so many kids post-op and so so many kids and babies on ECMO. It is so scary and so real for my mom and I to see.

I can hear the bubbling sound of what sounds like a fish tank but is the chest tubes draining from post surgery drainage. I can hear the beeps of all the monitors and the hum of the life support machines keeping so many babies alive and giving those families a second chance to find the answer, like we got.

We told one of the nurses how hard it was to walk down to the other end and she said that we were the success story though. We are the why.

Crazy to think about.

I am so thankful to be on the other end of the hallway. It is quiet and we are so thankful he is here with us to keep fighting.

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We are down to 1/4 liter of oxygen. It is really just a wiff of oxygen but he needs it. We tried to take him off and his sats drop so we are just parking him here.

Another big event today is that he got fitted for a helmet!

The cranial people came and talked to me yesterday and said that his case is pretty mild and so they are leaving it up to me if I would like it corrected or not. They aren’t sure how much it will help because he is older but I would like to try!

They put that white cap on and scan is head with what looks like a blow dryer and then come up with this 3D image of his head.

As you can see it really isn’t that bad but there is a large flat spot on the left side of his head toward the top. It is flat. You can feel it with your hand and it is a pretty large flat spot across the whole back of his head. It is from being intubated and sedated for 12 weeks.

The cranial doctor who came yesterday actually said that she could tell how perfect his head was before this because of how minor his flat spot was for being on it for 12 weeks straight. Sigh. Another reason I wanted to do it. It was perfect!! We have been through so much, what is a helmet for the next 3-6 months!

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He is just the cutest sleeper in the history of forever.

And also, how cute is he waking up?

I woke up today unable to swallow. My throat is swollen and I have a cough. Sucks. I stayed at the hospital today instead of going to work but I can’t be around Maxley much.

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I tried to stay away from him as much as possible and when I needed to be by him I have to wear a mask.

It is not fun being sick in a hospital. You just want to take a bath, crawl in your own bed and sleep for a long time. Not what happens here.

I get to spend another night on a futon with the beeps and quiet noise of 24 other patients on the floor and nurses milling about.

I can’t wait to go home, can you tell?

They are starting to talk about maybe in the next week or two. He could be ready!!! It is crazy to think that we could be home that soon!!

He went back to the oxygen on the wall instead of the vent which is exciting! He is still on 1 Liter of oxygen and doing really well.

Other than that, not much going on around here. I am going to try and sleep and get better!

100 days… wow. I can’t believe it.

Last time when we were getting discharged, I was telling the doctor that it was 99 days. She joked that they could keep us there 1 more day to make it an even 100. We all laughed and I remember being so thankful that we got to leave at 99 days. That we never had to spend that hundredth day here.

I really can’t believe we have been back 100 days.

Wow.

Today Maxley got his PICC line taken out which was on his left arm (as seen in pictures below). It was one of his IV ports. He had 4 at one point and is now down to 1. His broviac line which we will go home with. He FINALLY got to take this out because he is off his LAST IV MED!!!! OMG!! This is huge. He actually got off on Monday but they give it 48 hours before they pull the IV to make sure that he doesn’t need to go back on.

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It was a bad placement and then had these big plastic IV lines and caps (light blue and white in pic) so it made it hard to swaddle or put on his side because it was always in the way.

He will go home with the broviac because of the bone drug he is on. It has to go into his bloodstream and he will get that once a week for 3 months. It helps strengthen his bones so they aren’t so brittle. So we will get lessons on how to keep it clean, how to change the dressings and the caps.

It feels so good to get another thing off of him. I joked a while ago that I wish I would have done one of those paper chains with the number of meds he is on and ports he had and things he had to accomplish and that way when we check something off the list, I could take a paper circle off, but I didn’t.

The other big news of the day is that we moved rooms… again! Our new room is on my Instagram story!

I got a call at work today from the hospital and of course I answer the phone and she says, “Maxley is fine.” But then she said that they needed to move us further down the hall because they got 6 new admits today. We are in the VERY last room. They call it the suite. It is very large. It is a corner room since it is at the end of the hall so we have windows on 2 walls and is probably bigger than some studio apartments!

Maxley can now do tummy time!! This is the first time I have seen him do this flat since surgery. He doesn’t last long but this is a huge step. What is normal for other babies is major jumps for us. It is a lot for him to be able to do these things just a couple months from a comatose state.

I am just so proud of all these steps. He will be walking before I know it!

Other then that, just working on weaning. That should be my catch phrase!

He is handling the weans pretty well. He was SO happy today and has been giggly and very little crying. He is easy to calm and so so happy!

..::99 Days::..

We have been admitted for 99 days. If you remember, we were admitted 99 days the first go round. Well, unless they kick us out in the next 2 hours, we will beat our last record. Not a record I ever cared to beat. That is 99 days and 99 nights I have called the hospital home, again.

Just for fun I wanted to show you what 99 days can do.

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Maxley is officially on the “normal” growth curve!! This is HUGE!!! They said he would never be on the curve, that his chromosomal abnormality would keep him from the normal curve. Well, he showed them!!

He is at .5%!!! Ha!! Hey, it is something! Maybe he will be above 1% soon!!

Not much has changed ((except him)) around here. Still weaning on the drugs. At this point that is all that is keeping us here. He had a little episode today so they decided to go back to high flow oxygen which is a little pump instead of an oxygen tank. A minor setback, no big deal.

The nurse came in and tried to explain that kids take steps back and don’t focus on it and keep your chin up, etc. I just looked at him and said, he was on life support less than 2 months ago, I could CARE LESS if he needs some extra O2 for a couple days. It doesn’t phase me. He has made leaps and bounds and I couldn’t be more proud of him.

We are so close I can taste it. I can’t wait to start dressing him again. I can’t wait to go for a walk outside and take him to see my friends!! He has only been 4 places other than my house and the hospital. He is almost 1 year old and hasn’t even seen the sun really! I can’t wait!!

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I am so thankful for the love and support and honest to God cheerleaders that I have in my corner. I feel like everyone wants him to succeed and wants me to be happy. I can’t tell you what those cheers mean to me. I think I am okay because of them. I am not curled in a corner for days on end because of that.

I can be happy. I can have good days and feel good about myself and about my life, considering. I can know that I have people that love me and are rooting for me.

I have the bad days don’t get me wrong. My car’s mirrors have seen a lot of tears and I have cried silently to myself more times than I can count.

I will just keeping looking at Maxley and know that if he can do it, so can I.

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Speaking of Maxley being a rock star….

We still have 9 spots to fill for Maxley’s Blood Drive this Saturday in Prior Lake!!
Sign up here!

Not much happened around here so I wanted to share my pictures that my friend Amy took this weekend!

A huge thank you to Amy Mullenmeister Photography for creating more amazing photos of my sweet man in our home for the last 98 days.

She is seriously incredible!!! If anyone in the cities is looking for an incredible outdoor or in home photographer, please reach out her!! She is so talented and I have never been disappointed!

She has done so many of Maxley’s pictures already!!
Below are some of my favorites.

It has been a fun and eventful weekend!

I went to the Garth Brooks concert with my mom and sisters. IT WAS SO FUN!!! He puts on a great show and it was fun to get out and do something fun with my family.

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While we were at the concert, my cousins came to play with Maxley. It seemed like they had fun playing with him!!

Maxley had a great weekend too! He is down to .5 liter of oxygen so the next step is off, that will maybe happen tomorrow? I have been saying that for a few days but we are just taking it slow. No need to rush.

We keep weaning his meds and that is going really well.

He is sitting more! I got him sitting for a second by himself. He slowly tips but the fact that just a few weeks ago he was lifeless on life support, this is amazing!!

We also got to do tummy time on Saturday for the first time!!! He seemed to like it!

We did more tasting tonight. This time he got squash! I don’t call it eating because it isn’t really, it is tiny bits on my knuckle or on his finger and the just sort of tries. He doesn’t not like it but he doesn’t care for more at a certain point too.

He has been incredibly happy. He is talking more and more and giggling a little too.

He has been sleeping through the night except maybe 2-3 times for just a minute or so. THIS IS A WIN!!!!! He used to sleep 45-60 minutes at a time, every time. No matter what. Mom and I were zombies!!!! If he is sleeping this well when we get home, that will make a big difference for me!

I met with neurology yesterday. When the doctor came in he said that basically the MRI didn’t tell them much. It is abnormal but it might be from being born early or it could be because of lack of oxygen. They can’t know for sure because we didn’t have one the first time he was here.

They said based on how interactive he is, that is a really good sign. He looks you in the eye, he grabs he uses both hands, he has good reflexes, he talks, mimics, good coordination, all of those things are really good signs.

There is no reason to believe he was massively affected by being on life support or everything he went through but there is no way to know.

I hate to keep saying it but doctors are wrong all the time anyway. The doctors here say it a lot. They are practicing medicine. That is all it is, practice. They don’t know how people do or why someone does this and another that with the same course of treatment. Maxley has been proving all the doctors wrong since he was in my tummy.

The doctors here couldn’t be happier that they were “wrong” about him. I don’t think any of them would have put a lot of money on Maxley ever leaving this hospital. The odds were not good and he was dying.

I am so incredibly proud to be the mom of such a fighter. I hope he looks back and can know how strong he was and how much he went through to be in this world.

I hope he knows how much everyone loves him. I hope he sees what a beautiful world and what a better world this is with him in it.

He is a bright light for me, for his daddy, and for a lot of people.

I hope everyone knows what a difference they make in the world. Everyone deserves to be here and is making people happy with their presence. It isn’t just because Maxley has been through a lot. We all deserve to be here and be happy.

Today sucks.

Today is national widow day. How fitting that today my husband’s headstone was placed at his grave site. How fitting that today my story was featured on the site Love What Matters, you can read it here. (please read and share and repost)

Today sucks.

I am sure someday I will be thankful for this day. Maybe some day I will fee strong and so I will look at this day and acknowledge how far I’ve come at just under 11 months out from losing him, it is just another reminder that I am without him.

As far as Maxley goes, today was a very busy day!

Right away at 7:30 this morning he had a brain and spine MRI. They had to take him to the OR and intubate him so that he could be paralyzed for the MRI. This is standard practice after being on ECMO.

That took about 3 hours before he was back and he was chipper, smiley and happy!

Then music therapy came and he sat up for almost 40 minutes with very little help from me. He loves music therapy and is enthralled by her guitar. He loves to do anything that makes music! He is doing so well with his head control. You can tell he gets a little wobbly but corrects himself for the most part.

After music he took a 4 hour nap. He woke up just in time to go on another field trip back downstairs for a VCUG to look at his urinary tract. He has reflux in his urinary tract since he was 2 months old so this is just a follow up to that. He did really well and I got to go down with him and I actually got to carry him back up so that was fun.

He took another long nap when we got back and then tonight we got to play and cuddle and it was really nice.

I got some preliminary results back on the MRI. The imaging is abnormal but the NP said that the neurologist said he isn’t super concerned and it could be because he was born so prematurely. More to come on that. I will meet with the neurologist next week.

They weaned more on meds today with plans to wean more over the weekend.

I am lucky enough to be going to Garth Brooks tomorrow night with my mom and sisters so if I don’t post tomorrow, don’t be concerned!

Follow me on instagram to see pictures!!

Today was exciting because Maxley got to try his first food!!

We work with OT on trying to just give him tastes. Just putting a little on my finger or his finger or a toy. This really encourages positive oral experiences and helps with his sensory issues.

He wasn’t crazy about it when the OT was helping but when I took over, he seemed to respond a little better.

We just did a few minutes because we don’t want him to get sick of it, get annoyed or end on a bad note. After a few minutes, we stop and be done for the day.

She said we can try a couple times a day but I just did once today. Maybe tomorrow I will have more time to try twice.

Tomorrow is a big day. He has an MRI and he has to be sedated for it. The doctor ordered it when I wasn’t here but from what I understand they do an MRI with everyone before they go home to check the brain, his organs and a better picture of his heart.

He also has a sacral dimple which is a deep dimple just above your butt crack. We noticed it as we were getting discharged the first go round and so we couldn’t get it looked at. If you pull it apart, you can see the end which usually means that it is harmless but we have been meaning to look at it so they will look at that too.

I am sure I am missing more from today.

So much happened today but it was all random little things.

We went down to 3 on the vent.

We got off of one of the meds that we needed to get off to go home.

Weaned a couple more meds.

He sat (with help) on the mat on the floor and played with OT for a while.

He got his first taste of “food.” He got to suck on a sucker. While I don’t support my infant son eating candy, it is really good for his oral cares. It is like giving him glucose water which we do to help calm him sometimes. He just got a couple licks and they said it really does help. Putting something on his tongue and not gagging and having it be a pleasant experience is really great.

I posted this on my instagram and facebook but I wanted to share the post with you too.

This kid doesn’t even know how rough he has it. He has smiled through so much of this process. He was smiling while intubated, he was smiling on heavy drugs, smiling through life support. He is truly my hero. He doesn’t even know how much he has been through in his short life. 
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He is incredible.
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Side note: he is not actually as chubby as he looks in this picture. The video above was also from today and is a more accurate portrayal of his size.

Today was a big day.

A lot of updates!

We are officially moved to IMC status which means we are no longer ICU critical care!! We have a new nurse practitioner that will round on him now. I think they do this because this new NP specializes in getting you home. She works specifically on getting you ready to get out of here. They do this every day. They know the check list of things to conquer. This means we are getting closer.

Maxley got his cast taken off. He is moving his leg and doesn’t seem bothered by it at all.

He is holding his head up almost completely on his own. I should say, he is holding it up completely on his own but doesn’t last super long. After a bit he tips it forward to rest on his chin or he tips it backwards.

He is doing incredibly well. Now that he can hold his head up, we will consult on the helmet again and see if that is something he will need.

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He had a procedure this afternoon where he had to go NPO (not eat) for 3 hours and travel to the basement radiology lab and do a dye study on his urinary tract. When we got down there and they did the x-ray, they said they could see leftover dye in his bowels so we couldn’t do the test. Ugh. We aren’t even sure what that would be from.

They will try again for Thursday.

We went down on the vent again today. The doctors think we might be able to go home with little to no oxygen support!! That would be incredible!

We went down more on meds. Just baby steps!

I finally wet and combed his hair!!! They always wash it in the middle of the night and then the fan is on so it is always so crazy. Well it was driving me crazy today so I wet it and brushed it. The nurse wasn’t here so I didn’t wash it but looks so cute!!

Another day.

He hasn’t slept since this morning when he woke up at 8am. That is over 25 hours!!!! He is fighting it hard. He is cranky and overtired.

He got his last burst of steroids today for his lungs so that can contribute to being wired and not wanting to sleep. We went down more on meds today.

He has been sleeping through the night so hopefully he will sleep tonight. I got him to sleep a little bit ago but then he woke up gagging so my mom is currently singing to him and patting him.

Otherwise it was a good day. We got a play mat and PT and music therapy came in to play with him.

I hope you guys like the videos!! Sometimes those are more fun that pictures!

If you like them, check out my YouTube channel and subscribe! I posted more adorable videos from today!

I haven’t updated you on his stats recently.

Today is day 91. Officially been living back here for 3 months and 1 day. Maxley 321 days old and has spent 190 of those days admitted to the hospital.

He is 6.9kg or 15lbs 3oz and 26.75 inches.

That means he has gained 4.5 lbs and grown 4 inches. WOW!!

He is still on 25ml/ hour of 24 calorie formula. He has 4 broken bones, he is down to 2 IV’s. He is on 27 meds, some of which he gets several times a day. At 8am and 8pm he gets all of them.

Here his meds come delivered in a syringe. At home, we will be drawing up meds and washing syringes 24 hours a day.

We started our day by getting rid of the bulky ventilator!!!!!!

For the 2 pictures above: The picture on the top was the view from the hallway when he was on life support. The picture on the bottom shows all the machines at the head of the bed hid by the ECMO pump. I hope that makes sense.

He is now officially on high flow oxygen. It means he is still getting oxygen and it is pumping a good amount out to help expand his lungs and he is doing well. The next step toward going home is low flow. That is basically a nasal cannual with oxygen sort of slowly blowing out of it into his nose if that makes sense. No support just the actual oxygen.

That could be a slow process or a fast one. Hard to say. We will see how he does.

The last step ((in addition to the low flow)) is to wean more of these meds. He is doing ok most days but we can’t go too fast or he withdrawals super bad. It is baby steps but going well.

He is super smiley and chatty today. He is copying and super content. He follows you around the room and hates to miss out on anything.

He is sleeping through the night for the most part but getting up a few times when he wakes up gagging or wretching but goes right back down.

He randomly falls asleep which is odd for me. He used to NEVER do that. It would take him a while to fall asleep and always took coaxing.

Now, he will be in the middle of playing and just zonk out. Could be all the drugs.

The nurse told me this weekend that if I took his methadone, I would pass out in the corner for days. That is how much he is on. Your body gets used to it so they have to up the dose. But, for me, it would be a LOT!!

Maxley had a REALLY REALLY good day. He was happier than I have seen him in a long time. He was trying to talk which was so nice to hear!! He is imitating and it is adorable.

He is putting things in his mouth which I have never seen before. He is grabbing toys and hugging them and putting his hands in his mouth.

I took a few videos today so you can see just how adorable he is.

He spent time in the tumble form, had good poops and napped on me for a long time. I call it a success. He had an hour or so where he was very crabby but I think he was overtired.

He just feels like a different kid to me today. More himself.
I love hearing his voice and seeing his personality. He has a lot of it.

Today was a lot better than yesterday. He slept a lot of the day. Although he wasn’t smiley, he was super content to just lay in his crib while I worked and play or sleep.

He isn’t mad or crabby today, just straight faced which isn’t him. He gave a good smile when Auntie Codi held him tonight and one for the nurse. I got a couple smirks but no smiles. ((I already wrote this and he woke up and I went over to comfort him and he was super smiley… weird! Video proof.))

The weaned again today but a small amount and then weaned the vent down to 6. Once he gets to 5, they will take the vent out of the room and put him on a high flow oxygen tank. Hopefully this weekend!

Other than that it was a somewhat uneventful day.

Here are lots of pics from our day!

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I had a really nice work trip. I am truly lucky and love my job!

I was able to sneak in the famous Nashville pic!

Maxley has had an ok last couple of days. Pretty good for the most part and then he was up all last night crying. My poor mom. She gave me a quick update on the last few days before she high tailed it out of here for a few days. She deserves a few days off after being here without me for 3 days.

I think ultimately they just weaned some of his meds too fast. They thought maybe he broke another bone but the bone scan we did today didn’t show any more.

We went back up on some of the meds and he has been a little better tonight.

We are pretty sure he has thrush again so we are starting him back on meds for that.

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We started a medicine today to help strengthen his bones. There are a lot of negatives with it but really the positives out way them so we started it. His fractures aren’t getting better with time. He is on so many diuretics that he is peeing out his calcium and vitamin D that he is getting. This medicine should help strengthen his bones.

The endocrinologist we are working with thinks that maybe this is associated with his chromosomal abnormality. Because of course it is. Poor kid. Just needs a break. He already has missed out on so much and he doesn’t have a living dad. He just needs a break here.

Some family friends are hosting a blood drive in Prior Lake in honor of Maxley. There was an article about it today.

For an appointment, call 1-800-RED CROSS (733-2767) or click here.

If you aren’t local or can’t that day, feel free to sign up by visiting redcrossblood.org enter Sponsor Code: Maxley wherever you live!

Post a picture of you donating and use #donateformaxley on social media!! I can’t wait to see how much blood we can get for people like Maxley. He wouldn’t be alive today without the generosity of people like you. He has had 73 blood and platelet transfusions!

So much happened today while I was at work. Here is a summary of Maxley’s day in no particular order.

Music Therapy came in. The last few times he has actually been able to play and interact which is adorable. He helped play the guitar, played the chimes and the drum. I only saw this video but my mom said it was adorable.

I guess he was really interacting and playing with the drums and guitar a lot and just kept smiling.

Endocrinology stopped by and he may need new drug for bones. The down side of the med is that it can cause issues with his electrolytes and is really hard on his respiration which is the opposite of what we want.

He has only rolled once and it was just a week or so before surgery.

Both OT and PT came in today. One in the morning and one in the afternoon. He was so happy and is loving his therapies. He is laying on his back and reaching both arms SO far over, it looks like he wants to roll so bad. They both said that even with all the bone issues it is still so beneficial to hold him and that does more good that harm and we just have to be cautious.

Hematologist came in and we will reultrasound next week on the clot in the neck. He still had it last week so we are sure that he will still have it. This means another 6 weeks of blood thinners. These, unfortunately, are bad for the bones and they also are in a shot form. He is currently on an IV drip but they want to get off of as many IVs as possible to get the ports out of his body. They are all infection risks. And, since there is a TINY chance that we could go home before this round of 6 weeks is up, they need to switch it to shots that we will give twice a day. Huge bummer.

Neurology also came in. This is a new OLOGY for us. They came in because we got results back from his bone scan and he has 2 fractures in his spine. It is compression of disks in two parts/areas of his back; lumbar and thoracic discs. Supposedly, this shouldn’t hurt him and it is just something to watch. He should grow out of them. Mom and I can’t understand how it wouldn’t hurt though. They will re-xray in 6 weeks to see if better, worse, or same. Pretty disappointed.

They are trying to wean him off the Precedex which is an IV sedative. Like I mentioned, they want to get him off all the IVs as soon as it makes sense. They are transitioning him to Clonidine. Every 6 hours we will lower the Precedex by .1 mic until it is off. Should be by Thursday or so.

I am sure that I am forgetting something.

I am off to Nashville in the morning for work so I won’t be posting until Thursday. If I can somehow get my mom to take some decent pictures, I will post them on Instagram. Otherwise, wish me luck on leaving him! 🙁

Happy Easter.

I have the cutest Easter bunny ever!!

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Thank you to Kyelene and Tyler Hammer for the adorable Easter basket, bunny, book and outfit. I couldn’t get the pants on because of the leg but I LOVE the onesie!! He has been snuggling and trying to eat the bunny. I have never seen him try to put anything in his mouth or cuddle anything but he just loves the bunny.

The outfit is a 3 month size and pretty big on him. Not sure if that helps anyone see how big he is, or should I say small? The crotch of the onesie went down to his knees but it is pretty bunched underneath him.

This is the first clothing item he has had on since January 28th. It was hard to get on because we are so afraid of breaking another bone but it was so cute. We left it on all day.

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Today was actually a really good day. He was so happy all day!! We went down to 9 on the peep pressure of his vent support. The peep needs to be at 5 to move down to the high flow cannula.

We tried going down to 8 last week but it was the same day we tried weaning meds and he wasn’t having it. But, we also found out a couple days later he had the broken leg, so who knows what was what.

We found out today that the cast has to stay on 6-8 weeks. Pretty unfortunate.

I ran home for a few hours today to pack for my trip. I have a trip for work this week. My best friend, Kaitlin, got home from her honeymoon yesterday so she came over to help me pack and we talked about her honeymoon and how fun the wedding was.

By the time I got back up the hospital my sisters, brother in law, niece and nephew, grandma and uncle were coming in. We hung out at Ronald McDonald and ate dinner together. They took turns coming up to see Maxley since we can’t bring the kids into the unit. I love seeing them and I can’t wait for the 3 of them to spend time together.

He hasn’t even met his other cousin, Lotus yet. She was here to visit in July but she couldn’t come into the hospital so she hasn’t met him. She is just over a year older than him.

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I wanted to say thank you to the incredibly kind anonymous Easter Bunny who brought me am Easter basket yesterday. You know who you are. That was a complete shock and more than I deserve. Thank you again. I would like to repay the kindness in some way. Since I don’t know who you are, I hope to pay it forward someday.

Today marks one year of my daily posts. It started a year ago today with getting transferred to Abbott/ Children’s Hospital.

That day, a year ago. Scott and I had our first appointment here with our team. I would have bet a lot of money that my life would be completely different a year from then. If I had to guess, I would have thought I was going to lose our baby. They told us we would lose our baby.

But, I knew, no matter what, I had Scott.

He was my everything. He was literally my everything.

I feel so lost some days. I still can’t believe I will never see him again. God, I can’t even explain to you all how my body physically aches for him. His memory is still so real, I feel like he could walk in the door at any minute. I can’t breathe when I realize he never will.

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Today was very relaxing. There wasn’t any changes and not much happened. We spent almost all day just cuddling and he slept on me for a long time. It was magical.

He is still in a lot of pain and is hard to maneuver. He cries a lot and holds his breath when he cries so he turns purple and de-sats.

The night nurse didn’t pass on to keep up with tylenol so he didn’t get any of that this morning. Then at 1:30, he was crying so hard he was inconsolable.

I asked the nurse when he can have tylenol again and he said he hasn’t given any. Ugh. So, we had to give him a PRN (as needed) dose of fentanyl and then gave him tylenol too. He was too far behind on his meds for the tylenol to help. We needed to give the harder stuff to relax him so he would calm down and breathe.

It is nice though that the nurses ask us what to do in regards to his pain meds. They trusy us and ask us what to do.

I hate that he is on so many meds but I can’t watch him lay there and cry in pain. It is one thing if he is crying because because he wants to be held or needs his diaper changed but he has been so drugged that this is really the first thing he has cried about being in pain. ((or I have just been SO out of it)). I was so sad for him I cried. I couldn’t help it.

It all just hit me, everything he has to go through and he doesn’t understand. My heart breaks for him. As an adult, when you are in pain at least you can comprehend why or what happened but he is so small and so helpless.

He deserves a break.

I am so thankful he is alive and doing so well but regardless of how thankful I am, I am still so sad for him. Big picture, I try and think about at least he is here. We can get through anything because he is here.

Happy Easter everyone. Do me a favor and be thankful for what you have tomorrow. Hug your loved ones tight and be thankful for something, for anything. I would give anything to be home with Maxley and sitting next to Scott. There are so many things I will never have.

I want everyone to be so thankful for what they have.

This morning we had a care conference where we get together with all of the doctors and try to put a plan in place for his care and what we need to do to get out of here.

Right before the care conference the came and did another x-ray on his leg.

We talk about where we have come from and where we need to go. We go through the medications he needs to come off of to go home. We talk about his vent support and what we need to do with that.

It was productive and we all agreed on where we need to go. The social worker, case manager, pain and paliative, the intensivist, our primary cardiologist, the rounding cardiologist and the pulmonologist were all there.

By the time we got out of the conference, the results were back that there was a broken leg. It is another fracture, this time right above the right knee.

There is no why. Because of his osteopenia, he is at risk of broken bones. It is just because he has layed in bed for so long. His bones will strengthen as he moves more and as he grows. Until then, we have to be so careful. This could have happened when changing his diaper, when lifting him to hold him, anything.

Ugh.

Poor guy. He honestly can’t catch a break.

To be honest, this was a little bit of a relief. I was worried yesterday when they didn’t see a fracture in the x-ray and then he was swollen and hot and then his CVP was up too. An infection would be way worse at this point so a break was sort of a relief if that makes sense.

Could always be worse.

Because this is his second break in such a short period of time, they call in the orthopedic team. They came in this afternoon and tried to fit him for a brace but because he wouldn’t straighten his leg, they couldn’t do that.

They ended up wrapping it with a splint. Seems like that has already helped a lot.

Later today they came back and did a full bone scan. We will see if they find any more fractures.

He slept in his crib most of the afternoon while I worked which was nice.

Then, tonight, Maxley and I cuddled and he slept in my arms for about 4 hours while I watched Dateline. Pretty perfect Friday night. Just missing Scott and my own couch.

He was overall really happy today and I got a few giggles out too.

Here are a bunch of pics and a video from our day.

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Another rough day for the strongest guy I know.

He is still really tachycardic (high heart rate) and has really high blood pressure. They aren’t sure if this is his withdrawal or if he is in pain. He has really been wincing with his right leg.

This afternoon it actually looked a pretty swollen and was warm. He cries when you touch it and so it seems to be either the hip or the knee. They came and did an x-ray this afternoon which didn’t have any obvious or large fractures which is good but because the doctor isn’t a radiologist, she has to wait for the radiologist to read the results before they can tell us anything.

They actually need to come back tomorrow to take more x-rays because there might be something with his growth plate in his hip.

We did run labs for his CVP which is an inflammatory marker which was elevated. That doesn’t necessarily mean an infection but for sure means inflammation.

They also did an ultrasound on his entire body to look for clots. They started on his legs thinking maybe there was a clot where he had his cath procedure done a couple weeks ago but nothing there.

The nurse had to give him 2 PRN doses of fentanyl to keep him comfortable today. PRN means as needed. He has a lot of medicines that are PRN in the nurses back pocket just in case. He has a laxative, a diuretic and some other paid meds too. The nurse can only use to many as appropriate off of weight and within a certain period of time or the system won’t allow them to give the med when they scan it.

But, tonight he was able to fall asleep without any additional meds. This is a good sign to the nurses that he could relax and fall asleep without more meds.

It is stange because it feels like we are so close to getting out of here but the doctors won’t even allow us to downgrade to IMC status (non critical). We have a long way to go with his meds. It is going to take a long time to get him off these meds. After such a looong week of crying and struggling (mostly on his part), it just feels like we made no progress this week and maybe even went backwards.

Weird considering if felt like we go off ECMO quickly (even though it wasn’t) and then we got extubated quickly (again, not quick). But, this, it just seems like a long process. Getting him off of ECMO or off of the vent enough to get extubated were very methodical. It was every couple days we could turn the vent down. Now, we turn the meds down and have to go back up because he doesn’t like it or doesn’t tolerate.

Just trying to stay hopeful that we will get out of here before he turns one.

He is 15.2 pounds. BIG!! We walked in the day of surgery just under 11 pounds at 7.5 months old.

My mom talked with the dietitian today and she said that a lot of that could still be fluid. Because he didn’t eat for so long he was on TPN (liquid nutrition) a lot of what kids gain is fluid. It will be a while before we know his true weight.

Today was a little better of a day. He slept most the night in 2 hour chunks. He actually slept some today which is good too.

He is really having withdrawals and so those cause him to be wired and not be able to sleep. He is also more agitated because we had gone down on the vent yesterday making him work a little harder.

We ended up going back up on the vent today to give him a break. I think that is why today has been a little better.

Other than that, there hasn’t been much of an update.

It will be a while before we can go down on the vent again. We will still try and keep weaning the meds because he will have to get through it.

He was more giggly tonight too.

Today was rough.

He is having really awful withdrawals. He goes from smiling and giggling to inconsolable pretty quickly. Every 4 hours they give him a number on a scale of how bad his withdrawals have been. Up until yesterday his scores were pretty low. Today, they are high.

They look at if they are consolable, sweaty (he is drenched ALL the time), shaky, jerky, yawning, sneezing, and several other things. He pretty much checks all the boxes. He was up all night last night crying and then didn’t nap at all today.

I got “home” about 6pm and I have since then been just trying to get him to close his eyes and sleep. The only thing I could get was between 3-5 minutes. Then he was up and crying constantly.

It is hard.

When he cries he holds his breath, bears down and turns purple. Back to his old ways. He did this at home too. You have to do something to distract and calm him to get him to take a breath. He dips down really really low in his oxygen when he does that.

Lucky, he recovers after a little bit. It has been a very very LONG 11 weeks. 78 and counting.

As always, he has an easy smile. No matter what I can get a smile out of him. You can even hear a little giggle from him. I heard it yesterday for the first time since surgery. He has giggles since but he had no sound.

It is days like this where my wrists hurt from patting and my forearms hurt from shaking that I am reminded at how hard this is.

Being hard mentally when your kid is fighting to survive is I guess something I am better at than the lack of sleep and the crying baby.
Who would have known.

I think it is because days like this I am reminded at how defeated I feel. I feel like I will never be able to do this alone. I feel like this is too much for me to handle as a solo parent. I feel like it isn’t fair and I wish I had Scott to unload some of the burden on to.

I guess we all have strength for different things. I don’t thrive in that area.

I had a really good, productive day at work and driving home I felt good. I miss Scott all the time but sometimes I just feel like I can do this. I can get through another day. Some days are like that. Some days are just ok days. But then I get back to the hospital and the evening is hard. Then, I am defeated.

My bad days are the opposite. If I have a rough day where I feel like I am physically drowning in my feelings and my loss, I will come home to Maxley and he will make it all better.

I miss the uneventful days.

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What happens when you start to get better around here, you get boring.  I love boring.  After 3 days of not posting, I really don’t have too many updates, other then Maxley is getting stronger and stronger each day.

His throat seems to be much better and he is starting to get some squeaks out and some little scratchy cries.  However, he doesn’t really cry much.  He is SO happy and smiles and giggles a lot. 

His cheeks have gotten so big, that his smile is very different than it used to be, but his eyes are the same beautiful,  twinkly, that they have always been. 

He loves to swat at his toys, look in the mirror and listen to books.  He gets tired very fast and then is ready for a nap.  He will either fall asleep on his own in his bed, or mom or I snuggle and rock him.  He is like a different baby, much more content.  We do keep reminding ourselves though that he is still on quite a few drugs yet. 

He has also laid in bed for the last 10 weeks so he is bound to be more content just lying there.

We have been weaning meds since Thursday and he is handling the weans really well.  Today he was really sweaty and a little more cranky. Hard to know if that is him being a baby or if he is withdrawaling.

The toughest part right now is coughing.  It hurts, but he is coughing hard enough to get the secretions out mostly on his own.  They have to suction him about 2 times a day when he gets really rough sounding, but for the most part they are very happy with how well he can cough on his own. 

It is normal but he has a lot of secretions in his lungs and he needs to get them out. They used to be able to easily suction the tube in his throat but now that it is gone, he has to cough.

He has mastered the canula removal game!  He constantly pulls the canula out of his nose and he is very quick.  Even with mitts on yesterday, he pulled it right off. We think he smiles so much that he loosen’s the tape. They have to retape the dots a few times a day. Could be worse!

Our big excitement yesterday was we moved him to a crib.  He has been in a regular hospital bed since surgery and we finally get to put him in a crib!  It is a big step here. They wanted to do it Saturday but because I was at the wedding, my mom made them wait. They did it pretty quick on Sunday after I got home.

Then today, we moved rooms!!!! We moved down the hall to the less intense hallway. We are still considered ICU status for a while but it still feels good to make such a nice big step.

His oxygen support is CPAP and they have reduced the flow over the last few days and he is now down to FI02 of 25% (room air is 21%).  The rate is still at a pressure 10 and that will have to get down to 5 before we can move him to the next lower stage of oxygen called High-Flow.

We will continue to chip away at the meds and the oxygen support as he continues to get stronger and can breathe more and more on his own. 

We are now the “happy” room and the doctors and nurses that we have come to love and so appreciate for saving Maxley’s life continue to stop in and they can’t get over all of his smiles.  He is definitely charming them all!

We had several visitors tonight who hadn’t seen him since he was extubated and they just can’t get over how smiley he is. We also got to FaceTime with Maxley’s Nana and Grandpa in Canada tonight!

He got to try his swing tonight for the first time. He was never a huge fan of it at home because he just wanted to be held. He actually lasted about 45 minutes tonight. I thought that was pretty good!

I haven’t done a bead count for a while. He is at 582 beads. He has had 74 blood and platelet transfusions so that is 74 red beads.

I am sure I am missing a ton of stuff so PLEASE ask questions. Sometimes I breeze over things because I don’t want to repeat myself a ton but then I know sometimes it doesn’t make sense.

Here is a bunch of pictures from yesterday and today.

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I want to send a huge thank you to The Hoffman Collection for this amazing family portrait of Scott, Maxley and I. As you all know, I will never have a real picture of the 3 of us together.

This is so special to me. I finally got it back today and I can’t wait to hang it in my house and walk past it everyday and think of my amazing little family of 3.

I want to start off by saying that Maxley is doing incredible. He has surpassed everyone’s expectations and is making everyone fall in love with him. There is so much more to say about him and all the changes that went on this weekend.

But…

I want to dedicate this post to my best friend,
Kaitlin Grunseth and her new husband Cole.

My best friend got married this weekend. They had the best wedding, ever!! It was a beautiful ceremony with an amazing party afterward. We stayed all night dancing until our feet hurt.

One of our other best friends officiated the ceremony. It was so personal and spoke to who they are as a couple.

Being a maid of honor, I got to watch Cole for the ceremony. I got to see his face light up as she walked to him. I saw the look in his eyes when he said “I Do!”

You could feel the love in the room and see it in both of their eyes as they vowed to love each other for the rest of their lives. It was so beautiful and I was so honored to be a part of their day.

Weddings take a whole new meaning when your a widow. It isn’t until death do us part, it is until eternity and forever. It isn’t death that parts us, nothing ever will. When you love someone with your whole self, losing them won’t change that. You could see how much they meant every word and it was such a joy to watch them.

Anyone who has ever met either Kaitlin or Cole would say they deserved the best wedding imaginable. I would say that was a success.

I was lucky enough to be asked to be maid of honor and I gave a speech at the reception. I hope Kaitlin doesn’t mind but I wanted to post my speech on here as they are honest words that I feel describe our friendship and the love I have for her and Cole.

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My name is Kelsey Ferguson, I am Kaitlin’s long time best friend. We met in 3^rd grade when we were in the same class. Who would have known that the awkward girl in the superman footie pajamas (me) would meet the friend of her dreams at 7 years old!? I am honored to be one of your maids of honor, as you were mine.

I did actually share Kaitlin as a best friend because Kaitlin and I were a part of a best friend trio and we called ourselves the tripod. She even has a tripod tattoo on her wrist in our honor. It was me, my husband Scott and Kaitlin. We did everything together BC (before Cole). You could find Kaitlin at our house the majority of evenings eating dinner, (and dairy queen) with us and watching bad reality TV. She came to movies with us, went shopping, out to dinner, everything.

Scott was the 3^rd leg of our tripod. He was Kaitlin and Cole’s biggest cheerleader and loved Kaitlin like she was his family.

Scott passed away last year but I know for a fact that he would be here today shouting from the rooftops at how happy he is for both of you. I think he was more excited for Kaitlin to get a ring than she was!

Kait has been my best friend and biggest supporter. She has been through the hardest moments of my life right beside me.  She was the first person I called when I got engaged. I told her I was pregnant before my family knew, (sorry mom) and she was there the night my husband passed away.

Kaitlin grew up at my house. She has been like my 3rd sister. She spent many holidays and birthdays with my family. She was a natural fit and we included her in everything. She fit into my group of college friends and then into Scott’s group of friends too. She was my life partner long before Cole and that won’t change anytime soon.

She loves my son like her own and is an amazing Auntie to him. When he was first born I spent 99 days in the hospital with him and Kaitlin was there with me almost every single one of them. I will never be able to repay the generosity you have shown me through our friendship.

You call yourself nosey asking for updates in my life and how I am doing, I call it love. I am truly the lucky one.

She would give the shirt off her back and is always willing to help others. She is fiercely loyal and loves her dogs probably more than she loves Cole.

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Beauty and the Beast is Kaitlin’s favorite movie (so Cole’s by default).

The story of Beauty and the beast is a story about a beautiful girl (in a stunning dress) who meets a man and their friendship blossoms and grows. Over time, she starts to see him in a different light and eventually they fall madly in love.

Not sure if many of you know but we actually met Cole in middle school.  So, it took over a decade but they finally realized they were meant for each other and I couldn’t be happier for them.

Here is to a lifetime of love, happiness, LOTS of dogs and hopefully some babies!

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I will update you all tomorrow on his HUGE progress!! Fun things have happened!