Honeyed Heart

Another good day.

Another day full of whispering, lights off and the door closed. The 2 nurses just sit in here with the lights off (we have 2 windows so it isn’t dark) and not really talking or whispering to each other. Our room is right across from one of the nurses stations and so it is always noisy. People are constantly walking by and chatting or laughing or whatever. Makes our room pretty loud. I mentioned before but the ECMO nurse can’t leave the machine. They have to be in the same room as it and within 10 feet. Most of the time with the doors retracted (the doors slide open and then retract so the wall basically disappears) the nurse will sit at a tiny rolling desk right in the doorway. Makes for a fun maze when walking around the room. Our table and chair have to move into the hallway or bathroom at night because there isn’t enough room in our room for them with the bed down at night. 

We have our routine down though. 

Mom and I usually wake up around the same time. We open the curtain, fold all the blankets and stack them in the corner and stand the air mattress up. We bring the chair and table in from the hallway and we move the chair up against the air mattress so it faces the TV and fold the couch up. Mom will make coffee for us and we sit and watch the news and work for the morning. Mom has also mastered scrambled eggs in the microwave so we do that for breakfast most mornings with a bagel or oatmeal. The doctors come in and out throughout the day. There are so many doctors and specialists that come in daily, that alone keeps us pretty busy. We usually make a salad or sandwich for lunch right in the room, picnic style. We hang out for the rest of the day chatting, doing puzzles, working, talking to doctors, talking to Maxley, watching Ellen, etc. We go down to Ronald McDonald house as much as possible for dinner which is just down one floor. Sometimes it is hard for my mom to eat there since she is gluten and dairy free and it is pasta a lot but we do it when we can. Otherwise, we go to the cafeteria or order something for delivery if she can’t eat there. (Shout out to my new love, BiteSquad). A few people have brought us food which is SO helpful for something different. After dinner we usually watch Netflix for a while. The evening doctor usually comes around dinner time and checks him out and we talk to them for a while but otherwise evenings have been pretty calm. I type my caringbridge post while mom puts the mattress down to get ready for bed, pulls the couch out and makes the bed. We put the table and chair back into the hallway and close the curtain to our side of the room. Other than going to the bathroom (about 30 feet from our room) or grab water from the family room, some days I don’t leave the room. 

We have our little routine in our tiny hospital room and for now it seems to be working. We haven’t hurt each other yet and unless she is a really good actress, I don’t think she has wanted to. So thankful to have a friend in her to do this with me. Any of you who know her know she is the most incredible person. 

She is running a business, remodeling her house, helping me with Maxley, keeping me sane and doing it all from a hospital room. She is bossy with the doctors and nurses but in a good way (mostly). She knows what Maxley likes and makes sure that he gets the best care.  She takes notes when the doctors come in because I always think I will remember but never do. She makes binders of all of his medical stuff and keeps me so organized. 

I swear I was an organized person before my life became so chaotic. I like to think that I am like her in a few of those ways. 

Love you mom. Seriously can’t even think about what I would do without you. Everyone keeps telling me how strong I am being and how brave but I credit most of that to my mom for giving me that ability in my DNA and for helping me through it. 

——-

He has been a little better today with the delirium. He actually tracked with the nurse this morning when she moved around. For the rest of the day he was just out of it when he was awake. He calmed easier than he did yesterday. But, when it is loud in the hallway or loud in our room he wakes up and it is harder to calm him. We find it easier to just keep the room quiet so that he can rest. It is hard to see him awake and not tracking with you. His eyes are wide open almost bug eyed and he looks past you. 

Today was a big day of changes. They upped his feedings from 3ml an hour to 5 ml an hour (4oz a day). They lowered the settings on his vent making him do some more of the work to breathe and he is doing amazing!! They also lowered the flow and the sweep on the ECMO pump which is lowering the support that the machine is giving him. His body is responding well. They check his labs and blood gasses to see how his body is responding and his numbers are all still perfect after lowering all of it. 

AMAZING!!! 

Today was step one of a long long road to get him off of life support. I honestly can’t say that I saw this day ever coming. I am over the moon. 

The chaplain came by to talk today and I think he was surprised that I was smiling and so happy with my son on life support. I don’t think that happens much. I am definitely happier than I was a week ago. I feel like a herd of rhino have been lifted off of my chest. 

Saturdays are always busy because it is the first day of the new rounding doctors schedule for most of the specialists. Some are Monday – Sunday but most are Saturday – Friday. That is why so many changes got made today. New doctor, new idea of what he should be doing. There are 6 rounding intensivists and they all work differently. We really like them all and they all bring something different to the team. But the last 2 weeks were a time for rest and now I guess, it is a time for change. I hope it is slow and steady wins the race though. I would hate to have to up the settings again if he weren’t doing well. I guess we will see. So much of it is out of our control. 

His x-ray looked even better this morning. I will attach pictures. So crazy to see how much the steroids seem to be helping his lungs. 

March. How is it March? The whole month of February has gone by without me leaving the hospital. How can that be? 

Today was another good day. He looks good and the meds seem to be kicking in more and helping to sedate him better. 

They upped the pressure of the vent so it is forcing a little more air into his lungs and his lungs are responding beautifully. He is taking some of his own breaths and we can actually see his chest moving up and down. Weird to see since he hasn’t breathed in 2 weeks. The ECMO pump oxygenates the blood and pumps it back into his body so his lungs don’t have to. 

His x-ray looked good again today. His bleeding had stopped so the surgeon came and took his drainage tube out of his incision. It looks like it is healing nicely. 

Today he had music therapy for the first time. She came in and sang to him. She had a beautiful voice and he calmed for her. His heart rate actually lowered so that will be a nice thing to have a few times a week. Once he is more interactive, that will be fun to watch too. 

The sterroids really seem to be helping so he will get 3 more days of large doses and then a smaller dose everyday until he is off ECMO. I still think it will be a few weeks on it, can’t look too far ahead or I can’t breathe. 

PT and OT both came in and worked with him today. They are both happy with where he is at considering all he is going through. There are some movements and things we can do to help keep him limber. Steroid use can actually make your muscles weak especially when they aren’t being used like normal. This prolonged sedation is sure to set him back in motor skills but I will do everything I can to try and help him along. 

The doctors can’t believe how well he is doing. Even from yesterday they are very impressed with his progress. Little tiny bits are leaps and bounds around here. 

Considering 2 weeks ago tomorrow I was preparing my goodbyes, I can’t believe I am seeing a tiny sliver of sunshine at the other end of this very long dark tunnel. He isn’t out of the woods yet but I am hopeful, very hopeful that I will see him smile again in the not so distant future. 

Today is a month post op. One month since surgery. I can’t believe how horrible this month has been. Today though, was probably the best day we have had. 

The morning was uneventful and he had a bronchoscopy this afternoon. Mom and I got to watch them do the bronch which was kind of cool. He handled it really well. 

After the bronch, we sat down with the pulmonologist and walked through the final report of the biopsy. So far, the pathologist’s findings are positive and they feel the problems with his lungs are treatable. I hesitate to celebrate yet, as there are still a few unknown items, so the biopsy is being sent to Arizona for further review. However, the results show us 3 things.  1)  His Pulmonary Hypertension is a little worse than they thought and they feel that he may have had this prior to surgery.  2)  He has a degree of Interstitial Lung Disease which was caused by an “injury”.  They feel that the injury was the stress from surgery or possible an inflammatory response after surgery.  3)  An expected degree of premature lungs have exasperated the stiffness in his lungs.  Again, all of these should be treatable, however will be a long road yet.  

They had started him on steroids on Monday since they assumed that would be the course of treatment anyway.  They are very glad they started when they did.  

Already today, they started to see some improvement in his chest X-rays, they are hearing breath sounds and he is doing a tiny bit of taking breaths on his own.  These small tiny hints of his lungs working again is so amazing and give us hope.  

This afternoon his PO2 number was about 4 times what it was a few days ago. The PO2 is the oxygen in his blood. The ECMO machine can alter that number but ultimately they are giving him 100% oxygen and it is up to his body to respond to that. The fact that it has increased so dramatically means he is doing better. I could cry. My boy is getting better. I am still not comfortable enough yet to say that one day I will be walking out of here with him, but I am damn close. His nurse was so happy they were literally testing Maxley’s other nurses (who aren’t working today) to tell them his numbers. One of them even ran down the hall to tell another ECMO nurse. It was pretty funny.

Today was a battle of dealing with his sedation. He is still off the Rok so he is awake and moving more. We are pretty sure he is delirious. This happens a lot just from being in the ICC and is very common. Some of the meds can contribute and it is hard to diagnose. He is very out of it even when he is awake. He has moments where he will look right at you and you know he is with it and then other moments where despite many many meds, he is still just so agitated. There is a delirium med that they can give but they don’t like to keep giving it. His sedation will be a constant battle here. Each med has side affects and affects another med or counteracts this other med, etc. We have tried several kinds and some are better than others. Some meds work quickly and other are slow acting, I have never wanted to know or cared to learn so much about pain medicine in my life. It will be weeks and weeks just to get him off all of these when the time comes. 

Today I ran down to get a salad for lunch and ran into the doctor that delivered Maxley. I said hi and he gave me a big hug. He said he had heard that we are back here and dealing with all of this. It sounded like many of the staff at the perinatal clinic read my post everyday so, thank you. You all helped me through the darkest weeks of my life and you are all forever ingrained in my mind. I am so lucky to have such an incredible medical team for this whole journey. From antipartum (trying to stay pregnant) and losing Scott while admitted, to postpartum after delivery, NICU, ICC and now CVICU. I have remained close with doctors, nurses, nurse practitioners and many others. I am thankful for all the love and support you all have showed me in the hardest, darkest, worst and best months of my life. 

He looks great, still diuresing (peeing) and so he looks more like himself. 

Today was a win. Today and yesterday were about 10 steps forward so we will have days where we take steps backward but today was a good one. We will take a victory, big and small. 

Maxley is doing well. 

This morning the doctor decided that she wanted to get him off of the Rok paralytic today for good. We decided to turn all of the lights off and shut the big sliding doors to our room. The doors to our room don’t really close with the giant ECMO machine so it took some maneuvering. We wanted to be really quiet to try and keep it calm in here. Since he isn’t paralyzed anymore he is very agitated and moves a lot. We wanted to do everything we can to keep him relaxed. 

We will be working on his sedation more now that he isn’t on the Rok. We will need to go up on his sedation meds to make him more comfortable. He has been moving like crazy despite trying to be quiet. His arms are flailing and his legs go go go. This is what he is like at home so it is normal but when you can tell he is trying to cry and tears are falling from his eyes, it breaks your heart even more. He just looks so uncomfortable. Then, we try to calm him by singing or holding his hand but it isn’t enough so they always end up having to drug him. I hate it. I hate that he can’t just be him. I miss him. I miss him up and moving around. His eyes were wide open today looking at us. His pupils are so dilated that I am sure he can’t make us out but still. 

Today was going to be a calm one but later this afternoon the intensivist decided that we needed to change out the ECMO pump. Usually every 2 – 3 weeks on ECMO they have to switch out the tubing and the pump. Blood clots build up in the tubing and so he was requiring more blood product and so that keys them in that it is time to change it out. They would rather do it while more staff are here during the day. He was tinted purple all day because his oxygen saturation was low and so his tissue wasn’t getting the oxygen that it needed. The switch took a few hours and we had to step out of the room. As soon as the pump was changed he looked so much better. His skin color was back to normal and he was at like 95% oxygen sats which is great. 

It is such a long process to get his sedation and meds back up to par because they took most of his blood and gave him new blood. If you think about it, meds go in your bloodstream and so if you switch out more of the blood, there go the meds. He actually handled it really well but they said it can take a while for him to get used to the new tubing and everything. So strange to think about. 

While they were changing the pump they up his vent settings to give him a little more oxygen for the 55 seconds it took to change it out. After they got the old machine out, they came in quick and took an x-ray. I could even tell a difference. His x-rays are normally completely cloudy but there was some black in there. I could have cried. Pam got goosebumps when they showed us. This is hope. This is hope that his lungs could get better. We took him back off the vent settings to make sure his lungs are just resting. His lungs will collapse again now without the extra pressure and so his x-rays will not look better for a while until they aren’t collapsed anymore. 

We switched out his g-tube today too. They change it about every 3 months and it was about that long. His old one wasn’t long enough so it was kinda pulling on his tummy. He is so swollen that we needed to go up a length by .2″.

I printed more pictures of Maxley for his room. I have a few in here but EVERYONE talks about his hair and how cute he is and I just don’t think the pictures I had do him justice. We are going to be here a while and he isn’t going to look like himself anytime soon. People have been stopping by all day to look at how cute he is. It makes me so happy. I love him and I want everyone to love him too. 

Seems like everyone might already. 

Today was quiet. He is good which is great. 

He peed quite a bit over night last night. The bleeding from his incision has quieted down for now. We did another break from the heparin (blood thinners) to let the incision clot off. We did it yesterday and it clotted but then bled again so we will see how this goes.  

He has been off the Rok more and more and so he was really moving and wiggling today. He got a 6 hour Rok holiday today and did really well. I don’t know why but it is emotional to see him moving so much. To remind us that here is still a baby in there. It is heartbreaking to see him like this. 

We started his feeds at 1 ml an hour. That is less than an ounce for the whole day (.8oz)

He had a really wrinkly butt from laying on his diaper so they left his diaper off his back for a while which probably felt good for him.

We got some preliminary results today from the biopsy but it didn’t say much so I will wait until tomorrow or Thursday to explain more. Overall, they haven’t found anything bad yet which is hopeful but they still could. 

One of the pictures I attached is our nurse doing oral cares. She dips the sponge in water and “feeds” him. He was really interactive today. It must feel so nice to have something refreshing in his mouth. I took a whole video and he loved it. 

I like to start out these posts these days by saying how he is. That way you don’t have to read all the way to the end anxiously to find out that he is fine. Maxley had a big day but overall, all is calm. Today was so crazy I ended up making a list of everything so this is in no particular order.  We had to fix his PICC line which is one of his IV lines. It was blocked but they were able to fix it. They were fighting with it all day yesterday so it is nice to have that done. 

The arterial line in his groin is till from surgery so they switched that over to his arm to reduce risk of infection. 

The NJ in his nose was clogged and ended up having to redo it. It is always such a pain so they ended up having to bring in the C arm which is a giant machine. We have to step out of the room for the “procedure.” It is now in the right spot and they can start feeds tomorrow maybe.

The drainage has slowed from the incision which is good. We are still working on upping the blood thinners back to pre surgery levels.

A surgeon came and took the dressing off of his incision and it looks pretty good.

They started him on a pretty hefty does of steroids today. He will get that every 6 hours for 3 days. This could make a huge difference or do nothing at all. If any of his issue is inflammation then this should help. Fingers crossed.   

We met with pharmacy today to discuss all 35 meds that he is on. The pharmacist did a lot of research on each med and all the side effects and issues that can be caused from them. We looked at each one and discussed them all. She isn’t sure that any are causing any necessarily but she can’t say for sure. It is interesting that the antibiotics he has been on while he is here are the same ones he was on when he was in the ICC because when he was down in the ICC and on these antibiotics for his UTI, he needed to go on oxygen for the first time in his life. There is a side effect of these specific antibiotics that can cause pulmonary edema. Could be a coincidence but maybe it means something. If the steroids help, that could say something. If he needs antibiotics again while we are here, we will watching closely. 

We also met with genetics. They are following his case since he is only the 21st case ever reported. They got a request from pulmonology to run a lung panel on him. It is a blood test looking for Childhood interstitial lung diseases (ChILD). That can take weeks to get back but could make a huge difference and who knows. We could be no closer to answers by then and so this could be a break we would be looking for. Better to run it now. The chances are low and I think it would be pretty bad if it came back positive. 

His stomach is so distended that the doctor wanted an abdominal ultrasound just to make sure that everything looked ok before we started feeds again post op. The kidney and liver looked somewhat normal but the doctor was having a hard time deciphering the notes from the ultrasound tech. She was going to look into it more and let us know tomorrow. 

He got a Rok holiday today to give his body a break from the paralytic. He gets them every few days. He was only off a few hours and he started desatting so they “rocked” him again. 

The respiratory therapist comes in every 6 hours and is doing the BDs which is that vibration on his chest. After that they suction out his lungs and all day they have been getting bloody secretions which isn’t great. It is still bright red which means it is fresh. Sometimes they get out dark red which means old but since it is fresh it is cause for alert (not concern, alert). This last time it seemed to be a little less blood so they continue to monitor and alert the doctor to what they find. 

I also had a phone interview with the Prior Lake American for a follow up on Maxley.  I don’t normally talk about our visitors but we happened to have several today so I thought I would mention who came for the fact that they added to our crazy day. Of course Pam was here. Casie came up for our meeting with pharmacy for her input on more of the naturopathic side. Our social worker from the NICU/ICC came up to say hi.One of our doctors from NICU/ICC came up to say hi. She hadn’t seen Maxley since he got discharged so she couldn’t believe how cute he was, that was fun but hard to tell her about him being on life support. Pastor Rebecca came up to visit and catch up. She officiated Scott’s funeral and baptized sweet Maxley. We prayed for Maxley and did communion. 

What a busy day. It is nice because they fly by. Seemed like every 5 minutes someone else was here or we had another meeting. This was all in addition to the 2 rounds that hey do each day. The several times that the intensivists stop in, the pulmonologist, the chaplin, the nurse practitioner, the pain and palliative nurse practitioner, plus more I am sure. 

Should sleep well tonight. 

Maxley had another calm day. He was bleeding quite a bit out of his incision because they upped the blood thinners last night. They ended up stopping them again and then the bleeding stopped and then they have been slowly adding them back in. The blood thinners are very important to the ECMO machine because if the machine clots then it is really bad and since it is keeping him alive, that could fail. Bad bad bad. They are obviously extremely cautious and watch the tubing closely with a flashlight to make sure they don’t see clots through the tubes. 

My sister, Codi, and her husband and their 2 kids came up tonight so that was really nice to see them. I hate that I am missing so much of watching Wyatt grow up. He is 13 weeks older than Maxley. Scott and  I were very close with my sister and husband and hung out with them a lot. We purposely bought a house close to them so that our boys would grow up close to each other. When Brooklyn was born, I saw her all the time. I moved home from Canada away from Scott because I wanted to be close to that baby. I feel like I was really involved and I know that when you have your own kids, that changes. But, really Wyatt was only 3 months old when Maxley was born but already 6.5 months old by the time Maxley came home from the hospital. He has so many cords and he was immune compromised it was hard to get the kids together. 

Having a child with special needs is a whole other grieving process on top of losing my husband. You have to grieve the life you thought you would have. The days of being home with a newborn or having newborn pictures done, taking your baby home right away, getting to hold them when you want, taking the baby to target or run errands, getting compliments from strangers and them asking how old they are and oh aren’t they cute. I missed out on so many things as many people do with NICU or Special Needs kids. It is hard, I had this image when Codi and I were pregnant together that we would have all these fun moments of the boys playing together or asleep in a bassinet together, etc. 

I know some things are superficial but it is just a different type of mourning. I envy so much my friends who have had babies and they bring them home and take pictures of their baby and their husband or their newborn asleep in their bed. I just missed out on a lot and I feel sad sometimes for what I missed out on. 

Overall I felt so lucky to have a little one after Scott and I tried for so long. I was thankful that really overall he was healthy. I knew he would require surgery but overall I was confident he would grow up to be a little man. 

I have been trying to feel more positive about being able to take Maxley home but sometimes I catch myself thinking about the future and have to remind myself that I might not have that future with my son. I can not let myself think that he will be healthy again, it is too hard of a blow if it doesn’t come true. It will never be easy but at least if I can start to mentally prepare even a little, the loss won’t come as a complete shock. 

I never thought I would think about going home without him. Or, how I could ever give him one last kiss. How I could plan another funeral or even think about buying another cemetery plot. These are the things my mind wanders to. I sit here in the hospital and stare at him and wonder if I will have to say goodbye soon. It is horrible. For the last week I have thought of little else except what Scott’s face would be like to meet his son. I want to be there. I want to be old and gray and run into Scott’s arms in heaven where to him I still look 29 and then years and years later, Maxley joins us, also old and gray. I want to be present when Scott meets his son and it just won’t be fair if I don’t get to be there. I want to have stories to tell him about our boy and the life we lived. It is too soon. It is just too soon. 

As I mentioned earlier, his lung biopsy surgery went well this morning. We met with the surgeon for a while afterward and he was very happy with how everything went. He isn’t bleeding much and he has been doing well all day post-op. 

The specimen that they got from his lung was probably 3″ x 2″, maybe a little smaller. They send the specimen to Arizona to a pathologist to get tested. Takes a few days to get back. 

They made a horizontal incision under his rib cage about the same size as his chest scar. His chest scar is about 3.25 inches long, I thought it would be longer actually. His new incision is still covered so I haven’t seen it yet. 

I think we will start steroids on Monday to see it it will help his lungs at all. They would have started them today but it can delay the healing process and can cause infection so they would rather wait a while. 

He is very fluid positive so they are working on getting him to diurese and pee all of his fluid off. He looks really puffy with all this extra fluid. It isn’t concerning but it isn’t great either. 

It has been a nice quiet day since he got back from surgery. I thought this was his fourth surgery but it turns out it was his fifth. Five surgeries and four of them have been in the last four weeks. I have never had surgery (minus c-section) and he has had 5 in his short life. 

Maybe they will start to get easier??

He is out of surgery and all went according to plan. 

I am so thankful for the team here. They are so accommodating and always make mom and I feel comfortable with everything. They put Maxley first and make sure he is always safe and comfortable. 

Maxley had a bronchoscopy this afternoon, they didn’t get much out. Probably a good thing but it is always more satisfying to get a lot out. 

We met with surgeon this afternoon and they decided to move up the lung biopsy to tomorrow morning. The biopsy will really tell us a lot and I guess the team got together and decided that it was best to do it now and then we will know if there is a course of treatment for him. 

I am very anxious. The surgery itself should be fine and I am not worried about that but the results take a few days to come back and they will change my life forever. It is very hard to feel hopeful. 

I got to “hold” him today. They raised the bed all the way up and scooted him to the edge of the bed, I got to stand there with my arms out and they lifted him and just sort of set him in my arms. It felt so good to hold him again. I miss him. I miss him so much. I didn’t think anything could make me forget about how totally broken I am from losing Scott but Maxley consumes my mind these days. It wasn’t like that before this hospital stay. I feel like all I thought about was Scott and how completely I missed him. Now I am kicking myself for wasting so much energy on wishing I had Scott back when that was never going to change. I should have been focusing on Maxley and enjoying him while I had him. 

If that was the only time I had, I didn’t use it right. 

When Scott passed, I never had any regrets. God I missed him, but we had a perfect life. I have never for one second regretted or doubted anything that we had, it was perfect. I loved him truly and he loved me. With Maxley, I have regrets. I have a lot of regrets. 

I never wanted to get married growing up. Coming from a broken home I never saw the point. I knew I wanted kids though. Kids were always something I was certain about. I love kids and I wanted 4. Scott wanted 2 but I know he would have caved, I guess I will never know. I feel like I was born to be a mom. I think I was an ok wife but I ALWAYS wanted to be a mom. It is just so cruel to have my motherhood dangling in front of me not knowing if I will get to stay a mom in the real sense of the word. 

I promise, that if Maxley gets to stay on earth with me, I will try so very hard to appreciate everything and not complain anymore about being a widow or anything I have or don’t have. But, if he goes to heaven to be with his daddy, I don’t know how I will ever survive. 

How do you shatter something that is already shattered? Seems impossible. I am nowhere near putting the pieces back together from the first heartbreak. I am never meant to be whole again. 

We have been picking all of our doctors brains about what could be going on or what could be causing these issues. It will be a while before we get any answers but we will keep asking and keep researching. 

I am terrified. 


All of the doctors are so unsure. None of them are confident, they can’t be. Nobody knows if he will come out the other side. 

The pulmonologist said she has seen cases this bad get better but she has seen some not get better. There is a chance this is irreversible pulmonary hypertension. There is a chance that this is his chromosomal abnormality, or irregular lung tissue, there are so many things that it could be that he couldn’t ever recover from. Because he was IUGR (growth restricted) at birth, because he has a heart condition and because he has a chromosomal defect, those things could all be too much for him. His lungs may have never developed the way they should have and he might be able to survive this way. 

It is impossible not to start imagining losing him. I can’t breathe when I think about the doctors telling me that there is nothing more they can do. I have heard it before. I sat in a dark room at 1am with my mom and my sister and the doctor came in and said, “there is nothing more we can do for your husband.” It feels like a movie. An out of body experience where I can see my knees hit the ground and me crying out. For the next 4 days I clutched my stomach and told our baby that it was him and I against the world. Now, it might just be me. I don’t want to live through this. He is my only piece of Scott. He is my everything. 

Every morning since Scott died I wake up and have to remind myself that this is my world. At home, I would look over at his night stand that now holds his ashes and a photo of him and remember I am to face another grueling day without my love. Now, here, in the hospital, I wake up everyday and have to remind myself yet again that my absolute worst fear since losing Scott could come true any day now. 

I met with the chaplain today who is the hospital clergyman, clergywoman? I asked her if she believed that this was God’s plan. She said no. She didn’t believe that God chooses for babies to die, or for people to lose their spouse, she thinks it is the work of the devil and I couldn’t agree more. I have never been a person of faith and have had doubts as many have. But, the moment I lost Scott, I knew that there was something after life. I can’t continue to live my life not believing I will ever see Scott again. That our family will never be together. Me, Scott, Maxley and the baby we lost. I lay awake a lot imagining myself running into his arms and the gates of heaven and it makes me smile. Like physically smile. Because of this, I have to believe in something. I have to. 

—

No changes today as far as his health. His X-Ray may have looked better depending on which doctor you asked. Some thought the same. If it is better, it could be worse again tomorrow. The lungs are still collapsed. The let him rest today and that was fine with us. Although, rest is boring and means we are bored. I would rather be bored for the next decade if it meant he was stable. 

My dad asked me again about the beads of courage so I thought I would write more about that. 

Basically Beads of Courage is a non profit that partners with hospitals to give children a bead for medical procedures and accomplishements. Each day they are here they get a bead, each MRI, ultrasound, brain scan, IV, day on ECMO, etc. They get one for an act of courage, their first time walking after surgery, etc. Maxley has a LOT of beads already. He racks up several per day and it is a nice reminder of how far he has come. 

To find out more–> Beads of Courage

I also included the picture from yesterday that shows his beads. It starts out with their name and you add from there. 

Surgery came in and adjusted the ECMO cannula in his neck. His sats were dropping and so they snipped the suture and moved it and restitched it. They gave him another Rok holiday and so he was moving a bit. They lowered the dose when they put him back on so that he moves a little more. He is really puffy and so him moving will help the fluid in his tissues. He has thrush in his mouth which is not surpirsing considering we stopped his probiotic a week or 2 ago since he hasn’t been eating. He is up to 4ml an hour so we added it back in today, hopefully that helps for the future. For now, they give him an oral med called ginga violet, it turns his whole mouth purple but I guess it really works. He is starting to get a rash on his arms and legs too but Casie (my sister) thinks it is the thrush on his skin. 

I am sure I am missing something. 

Off to try and sleep some. 

They did another bronchoscopy today but didn’t get much out. He handled it well again. 
The pulmonologist mentioned his X-rays look worse since getting on ECMO which has me very very anxious. 
His one blood test didn’t come back positive for vasculitis. That doesn’t mean he doesn’t have it, it just means it wasn’t positive if that makes sense. It would be incredibly rare, like never seen it before rare so we weren’t expecting anything to come of those labs. 

Just another day of waiting. 
Just be patient. That’s what they keep saying. I can learn to be patient if it meant I could take my baby home. But waiting for the worse is unbearable. 

Another quiet day here. He had a bronchoscopy this afternoon that he tolerated really well. He was stable and his blood pressures didn’t budge which was great. The pulmonologist who did the procedure bedside said that she got a lot out. 

Since his procedure around 11:30 this morning, his sats and blood pressures have been really good and really stable. He hasn’t had the ups and downs like he normally does. 

Both of his lungs are collapsed but they aren’t concerned. They upped the pressure he is getting on the vent so that it might inflate them a little more but it is not a big deal I guess. 

The x-ray looked the same today. 

More waiting tomorrow.

Thank you to everyone who continues to follow me and my son. I can’t thank people enough for the outpouring of love, support, donations, food, etc. that keep showing up. This has been the hardest year of my life and you all have made it just a little easier. 

Thank you. 

K

Quiet day today. Pam came up in the morning and we did a puzzle, chatted, made sandwiches, met with doctors, chatted, met with more doctors, chatted and then somehow the day was over. 

He ended up staying off the paralytic until 3am. At 3 he had a little episode where his oxygen saturations dropped but that was to be expected. This morning when they went to suction his lungs there was a little blood in the secretions so they dialed back on the blood thinners. His upper right lung has collapsed but they are leaving it for now. It happens a lot on lung bypass. 

The xray looked the same today (minus the lung collapse). She said don’t look day to day, they will look more week to week to see if it is better. Lungs take a long time to heal. 

The blood in his heart is shunting back and forth quite a bit between the “pop off valve” that he left open on purpose. That makes his saturations lower and his lips look a little purple because he isn’t getting as much oxygen to his cells. 

He really drops his sats based on how the cannula in his neck is placed. I think I mentioned it this weekend but the cannula isn’t in the best spot so if his neck isn’t in the exact right spot then the numbers drop so it is really hard to move him around every 4 hours. They have a feeling they will end up redoing it which I don’t like but they say it is no big deal.

The new doctor we met with today is the head of the pain team. He makes sure that all the little people here are well sedated and happy. He switched his fentanyl to methadone. It has a longer shelf life so they don’t have to give it as often. He said the smaller the patients brain the faster it works through the body and the more resistant they become therefore having to up the dose more often. They take 3 days to wean the fentanyl down and the methadone up. So far, so good. Better than the morphine where he reacted to it. It is now listed as an allergy, so far, 3 med allergies. 

We were chatting with the nurses as we do quite a bit to pass the time and were discussing the cost of the ECMO machine and the cost of the room, etc. The nurses all have different ideas of how much things cost but so far we have heard that the ICU room here costs up to $40,000 a day. That would include the nurses, oxygen, diapers, etc. I think that number is high, but even if it is 1/4 of that, wow. The nitric oxide that he is on, used to cost $1,000 an hour for them to lease from this company. I guess it is more affordable now but it is insane the cost of things here. I can’t even imagine the tens of thousands of dollars the ECMO machine costs per day. 

I am so thankful I have really good insurance!

On to another night of sleep with the lights on, constant beeping and a lot of nurse chatter. 

Today has been a good day. 

Several of the nurses commented on how good mom and I look today. Considering we look like AWFUL hospital monsters who haven’t showered in days, that says a lot if we look good today. That shows how BAD we looked yesterday. I just sobbed all day and screamed and sobbed and stared off all day. It was a hard day. 

Today was better. With a little sleep, I am trying to have more of a positive outlook. The doctors all say, “when he comes off,” “when you go home,” etc. which is great except they don’t know. Nobody knows. He had a good stable day but he is still on life support. He is still fighting for his life every minute and we are praying that he fights just a little more. 

I do have to keep reminding myself that we don’t know yet. We don’t know that he will get better. I think that is important to keep in the back of my mind so that I am not blindsided if he doesn’t. For positivity sake, I will be speaking in terms of him getting off of this life saving machine and taking my baby home. 

So far, his x-ray looked a little better today. That will tell us daily if he is improving. They are still weaning him off the vent fully on the ECMO support. That will allow his lungs a complete break. Their plan is till a 2 week rest. They want to do NOTHING for 2 weeks and let his lungs have a break. After the 2 weeks, they will get a lung biopst. Once he is improving (based on a million different labs and numbers that I couldn’t possibly try and explain), they will start to wean down the ECMO machine. They can simulate him being off the machine without having to pull the cannula out of his neck. They can keep him like that for several hours before they pull the cannula out and consider him off of it. That way, if he doesn’t tolerate it, they just turn the dial and he is back on it. At the same time, they will turn the vent (breathing machine) up so that his lungs are having to work a little bit. We are a ways away from any changes but that is the plan. The doctors keep saying that is the hardest part is to do nothing. They always want to tweak and fix and change, but we have to just do nothing for a while, it isn’t in their nature. 

He will be intubated for a while (whatever that means) after he is off ECMO and then probably switched to CPAP and then a nose cannula. We could need to go home on oxygen, no way to know yet. 

He is at full settings for the ECMO machine and he sats and numbers look good. Sometimes, that doesn’t happen. Sometimes despite all the help, kids can’t get their sats up and their blood pressure down, etc. I am so thankful he is tolerating this well. We learned they only do a few VV ECMO a few times a year which is strictly lung bypass. Because this is the cardiac unit, they mostly do vs VA ECMO which is heart and lung bypass. We have one nurse for Maxley and one nurse for the ECMO machine. The ECMO nurse is not allowed to leave the room without someone releasing her. She is strictly in charge of the machine. We found out tonight that there was an ECMO nurse in the ICU at Abbott that was on the night that Scott passed away and now she works here and she was devastated to hear that Maxley ended up on ECMO too. That was hard to hear. 

I am terrified for what each new day will bring. He gets an x-ray every morning around 5am and that will tell us a lot. It will be a scary thing to wake up and get the results of everyday because if they aren’t better, that can mean it isn’t helping. 

The lung biopsy they want to get in 2 weeks will be sent to a lab down in Arizona. We will get the biopsy either way but it will be critical if he isn’t improving, that can tell us if the lung tissue is dying, if he has vasculitis, which is what his dad died of. The pulmonologist sent blood labs back for an auto-immune disease. If they come back negative, it doesn’t mean that it is, but if it comes back positive then it means that there is something they are missing. Those will take a few days to come back. 

Pam, my mother in law, flew in this morning and spent the day here at the hospital. She said it felt really good just to be here and less stressful just to be here in person. 

He had clear lungs today and they are getting gunk out. They are saying they are getting more secretions out and he sounds better which is great. 

Echo and brain scans looked the same today which is good. 

He got a good shampoo today, I put lotion all over him and filed his nails. He also got sunglasses to block the light and a bowtie because he looked so dapper. 

He has been on a Rok holiday since 5pm. Which means they shut the Rok paralytic at 5 and let him move and wiggle and flinch for a few hours and once he starts to be naughty and pulling on his cords, they will Rok him again. They will do this daily to give him a break and make sure he isn’t seizing or anything. He is still fully sedated but wiggling and moving a little. 

Mom and I got to feed him water on a qtip and he seemed to really like it. His mouth is probably so dry and so he really seemed to enjoy that. 

We are getting along really well with out nurses but it is interesting to have 4 people in this tiny room at once, plus Maxley. It is a lot of bodies in a small place. Mom and I talk about the fact that we could live in a tiny home!! 

I don’t know that I could describe ECMO very well and I should have started with that but you’re better off googling it. The short answer is that the cannula in his neck goes into the main vein into his heart and it takes the blood out, swishes it around and oxygenates it and puts it back in. They can control his blood pressure, his body temp and many other things. It is literally keeping him alive right now. Again, his heart is fully beating on its own and is doing all its own work. It is a very large machine that sits at the end of his bed and the ECMO nurse sits on a little stool at a computer next to it. I included a picture of the machine. He faces backwards now since he needs to be closer to the machine. 
Pray tonight for a good day tomorrow and the strength to make it through another sunset. 

Maxley is safely on life support. The doctors ran out of options. 

Today has probably been one of the worst days of my life. 

Losing Scott was incredibly difficult and the hours waiting to know if I would get my husband back were unbearable. But, once I know I would never see him again, your mind is able to start accepting all the things you would never have. I was able to hold my pregnant belly and imagine the life I would have raising our son to be like his daddy. 

Today, there are so many unknowns. It is a constant question of not knowing if he will survive. That is terrifying. I am shaken and exhausted. 

The doctors don’t know what is wrong with him and leaves me with little hope. I am trying to believe but I can’t. I am so broken and I just went through this. One minute I know he will get through this and the next I am sobbing uncontrollably.

The hope is to let his lungs rest for a couple weeks and then do a lung biopsy. They would need to take him down to surgery for that and he isn’t strong enough for that yet.

They will continue to do daily chest x-rays to monitor his lungs. They are still cloudy and so tomorrows x-ray will tell us a lot. 

I don’t know a word scarier than petrified but I am. I am so so scared I will lose my baby. I will lose my future I had for us and I will lose me. I can not survive another loss. I don’t know how I will get through the next few weeks of not knowing. 

Please pray for his lungs. Pray that they will recover and that he will get stronger everyday.

This is going to be a long long road.

Maxley had a really bad night and I had to make the decision this morning to put him on life support.

We watched him deteriorate all night long and know that he would not have lived through the day on this path.

The doctors are really unsure if this will help him but we were out of options. If he doesn’t get better soon, there is nothing more they can do.

I didn’t think I would have to sign paperwork to put two people on life support in my lifetime much less this year. This is torture. I am exhausted and miserable.

I’m not convinced that prayers are helping but I need something, anything right now.  

The day started with mom waking me at 7:30 to let me know that his blood pressures were dropping again.  Since I didn’t write much last night, I will back up first.

Yesterday was a decent day and he was doing well, so they started weaning him down some on the oscillator vent.  At 11PM his blood pressures were dropping which was odd and something different.  They ordered a chest Xray and several labs to determine that his blood gases were really bad and he needed more help.  The med they usually used to increase his pressures did not work.  Apparently the weaning of the vent was too much for him, but it took several hours to present itself.  He blood gases were normal at 6pm but by 11pm he was failing.  By 1AM, he was back to where he should be and had a decent rest of the night, until at about 7:15 he started doing it again.

They played with settings and drugs all day.  We met with all the specialists and everyone started getting more and more concerned.  Up until this point, when we considered him “stable” he really wasn’t in the sense that he was continuing to get worse, but they were able to stabilize that situation, but then something else happens.  We could relax when he didn’t have any episodes or crisis, but it really just meant that he was at the next level of needing more support. 

They are talking to us about what may be the next step since he changes so quickly. His heart is fine but his pulmonary hypertension (PH) is not acting or reacting like it should.  Normal treatment of PH would not encounter these other crisis/issues he is having.  His  lungs are very stiff and he continues to need more and more support with the oscillator vent and meds. They are almost out of options. He is very very sick. They are now going to give him steroids to see if that could help. They think inflammation in the lungs is causing this and they aren’t able to control it. Next step would be the ECMO machine which is lung bypass or life support. 

When we met with the pulmonologist, she thinks we are “far from” ECMO (life support) but it could still happen anytime since he turns very fast.   The ECMO would remove the blood from his lungs and allow the lungs to rest and recover.  It is a good way for them to treat babies like Maxley when their lungs are underdeveloped.  She did explain that preemie babies have very under developed lungs and tissue. Babies lungs keep forming during their first 2 years.  So Maxley, being so early and growth restricted will be even farther on that curve from having good strong lungs.  She did say that he is a slow grower which also leads to slow recovery and healing.  They are telling us we will be here for months. Months and months. 

We met with Genetics today and they may dig in further to his chromosomal deletion.  If we get to the point that they have to do a lung biopsy, the genetic research will help the lab look for indicators. I also got labs drawn today to get my genes tested to see if I am a carrier of the chromosomal deletion that Maxley has, they don’t think so but want to rule it out in the case I ever have more children.

I’m terrified. I know life support wouldn’t be the absolute worst thing and it would give his lungs a break but I’m so scared. It’s how I lost Scott and there are risks with ECMO too. I have spent the last 4 hours shaking and trying not to throw up. I have cried more today than I have in a long time and I seriously can’t believe I am in this situation. I can’t handle another moment of his life being rocky and it sounds like we will be this way for months and months. I seriously don’t know how I will get through this. I look at him and I don’t know if I will ever see his eyes again or if I will ever hear him giggle again. 

The pain is more than any one person can handle. I must have been an awful person in a previous life to deserve all of this. 

His blood pressures are low tonight and so they just did a chest x-ray and ran a bunch of labs. His blood gases came back pretty bad so we are upping the oscillator and while wait and run more labs in a bit. 

I will update more tomorrow. 

So much for a quiet day…

Today was by far the worst day we have had. The morning started out well and we actually went 26 hours with no crisis episodes. 

That was until 10:30. All morning his oxygen levels were slowly dropping. They started at 100% oxygen in his blood and my mom was watching it slowly drop to 97%, 96%, 94%, etc. They paralyzed him and nurse brought in the respiratory therapist and they tried re-taping his tube in his mouth and it didn’t help. They were measuring and trying to make sure it was in the right place which it was. They brought it the nurse practitioner and they suctioned a few times. They got a lot out but his sats were still not coming up. They tried manually bagging him and nothing. That usually helps him. They brought in an urgent x-ray and to see his fluid levels in his lungs and all the while his sats were slowly dropping.  Mom and I just stood there watching his oxygen get lower and lower. By this time there was about 10 people in his room and more standing in the hallway watching. 

They kept puling blood and doing his blood gases and the CO2 in his blood was extremely high and so the Dr. said she thinks that his lungs and heart weren’t functioning correctly and so his blood was full of carbon dioxide and so the heart and lungs are now just pumping out non-oxygenated blood and so he can’t get out of this cycle. We somehow need to stop the cycle and get his blood gases down. Not sure if I am explaining it well. It was a crisis for sure but different than the rest of them. They ended up bringing in a different type of vent called an oscillator and hooked him up to this for breathing. It pumps about 200 small breaths a minute vs maybe 40 big breaths. It helps oxygenate the blood and after about 10 minutes he was back up to 100% and has been there every since. They use this machine on this unit about once a year. It is extremely rare. 

The positive side of all of this is that his heart rate and blood pressure didn’t change. Thank goodness. If they had, he would have gone on life support. We are hoping this machine helps and he can come off soon and back onto his normal vent. 

They don’t know why this happened. We talked to a ton of different doctors and specialists today about why they think and nobody knows. There is no cure for heart or lung disease, just medicine and management. They are keeping him completely paralyzed and on this very very noise machine. It pumps so many breaths in that he is jiggling lying on the bed. He probably likes the shaking, maybe it is soothing. 

The interesting thing about the paralytic that you don’t think about is that when you are paralyzed you are still completely coherent. So, when they paralyze they also have to sedate. Otherwise, Maxley will wake up and be unable to move and just scared. Makes me think of being in a coffin or something and unable to move your arms and legs or yell for help. I don’t know why it reminds me of that. So, they are also keeping him sedated which is nice that he is comfortable. 

At least one of us is. 

The doctors have started talking about the next steps if this doesn’t help. Life support. Life support is the next step. The machine is called ecmo and it is heart and lung bypass. It would be giving his heart and lungs a break so that they could heal. UGHH. This is the machine that they tried putting Scott on when his heart gave out and I lost him. I want to cry thinking about it, and I have. I know Scott was different and I know that ecmo does wonderful things for people and maybe it is what Maxley needs but it is unbearable to think about. I can’t even imagine him lying hooked up to life support for weeks and months on end. I already miss him so much. It is so unfair. He is my only child and I am missing his life. I am missing him being a baby! 

It is so unfair. Everyone else gets to have their baby and take them home from the hospital and watch them grow up WITH their spouse. It is so so so unfair. My poor Maxley. I just want to hold him, and I want to see him smile. It has been 16 days since I have seen him smile. Seems like a lifetime. I don’t deserve this. I had the perfect life and everything has stopped. 

He also got a blood transfusion today because his hemaglobin was low again. 

We have a long long road ahead of us and the doctors keep asking for time. The doctors are telling us that he is stable on this vent but far from stable otherwise. I don’t know how much more of this I can take. 

I can not believe what my life has come to. A year ago Scott and I found out we were having a boy! He was ecstatic, it was what we both wanted. Now, I am trying to hang onto hope that I will ever get to take my baby home. Seems so far away.