December 21, 2016

Almost Made It Home

9 months old and looking like a big boy!

Yesterday was quite possibly the worst day of my life. Maybe even worse than the day we sat down at our first ultrasound at Maternal Fetal Medicine with Aiden.

Since our meeting with the specialists at duPont in Delaware, a lot of good things have happened. We put Aiden on a diet, and he started to thin out very quickly. You could tell he immediately felt better. You can actually see his neck, his breathing was less labored, and he started moving again. He has taken off so quickly - moving his head back and forth, reaching out to toys, even trying to roll over with the help of his occupational therapist. It's been incredible to watch his new-found desire to move and finally see him trying to reach some developmental milestones.

We also put him on the home vent in the correct mode for him, and he took off! He did so well, that they kept him on the home vent permanently. He's officially been on it for a month now and has been thriving.

He's been doing so well that we actually started preparing to take him home.

David and I went through multiple trainings for all of his equipment, and roomed in with him for 48 hours to test our abilities and see if we could really do it all for him. Our weekend with him went without a hitch - so much so that we even impressed our doctor and nurse practitioner. They told us they felt confident about him going home.

Sleepover with mom and dad! (Selfies aren't our fortay!)

So we started the process. Home care gave us all of our equipment and set things up in our home. Home nursing came and did their assessment. The hospital brought by his car bed and he passed his car seat test with flying colors. We set up the girls to stay with my parents, and David and I got to the hospital early yesterday to get everything in order and get out of the hospital once and for all.

We picked up his prescriptions, packed up his belongings there, got him in the car seat to double check the straps were in the right places... and boom. He crashed.

I have no idea what happened for sure, or what caused it, but he fell into a blue spell that we couldn't get him out of. He got air hungry, and was only satting at 50% with 100% oxygen. We gave him PRN Albuterol to try and open him up again. We suctioned him like crazy. We did a chest xray. We increased his vent settings to force him back open. We bagged him. We did everything we could think of, but it still took him two hours to calm down and come out of it.

Our doctor told us he couldn't send us home with Aiden like that. Because, and he's completely right, if that would have happened at home, we wouldn't have the necessary tools with our equipment to bring him out of that. And if that happened on the road home? Well, the thought scares me. He wouldn't have made it. David and I had to do the hardest thing we've ever had to do and agree with his doctor. It wouldn't be safe to bring him home.

Going on his daily walk around the hospital. 

In that moment I felt like a ton of bricks crashed on top of me. Here we are a month into being on the home vent, all his things packed and ready to go home, and he suddenly does something that hasn't happened in months. My heart was shattered.

David left to call the girls and tell them Aiden wasn't coming home after all. In that moment I wasn't strong enough to do it myself. And as I'm sure you could expect, they fell apart as well. Especially Melodie. David told me he's never seen her have that sad look in her eye or hear that level of heartache in her voice as she bawled.

After Aiden calmed and fell asleep (he was completely exhausted after it), David and I packed up all his travel equipment, and left the hospital without him again. The hospital hallways felt more cold and lonely then ever before. When we finally got to our car, both David and I broke down.

There is a very solemn mood hanging over our house today. After all the crying I did yesterday, I feel very numb this morning. I'm out of energy and feel like I'm drowning. It hurts so bad to walk past his room all ready to go. I don't know how I can cope.

We are all, his medical team included, confused by this. He had another one of these moments this morning. It's odd and I'm so scared something more serious is going on. There are talks of taking him off the home vent and back on to the hospital vent. I'm sure they will start pushing South Davis again. Flu season is here so the girls are no longer allowed to see him. And I have doubts he'll be home by his birthday at this point.

I'm trying so hard to hold on to faith that there is a reason for this. But after nine months of these ups and downs, I feel my faith slipping. I don't know what I can lean on to anymore. And I don't feel like I can face the hospital. I just want to lay in bed and sleep. And I want Christmas to hurry and be over with.

November 21, 2016

Validation At It's Finest

This past Thursday, we had a huge meeting for Aiden. Our entire medical team at Primary Children's Hospital, the doctor from South Davis, and the skeletal dysplasia team at duPont Hospital for Children in Delaware was involved. And it. was. incredible.

Going in I didn't know what to expect. This being our biggest meeting with the largest number of medical professionals yet, I was definitely feeling nervous and intimidated. But it turned out to be more than David and I could have ever asked for or expected. And now more than ever, I am feeling very excited for Aiden's future.

Before the meeting started, I spoke with the geneticist in Delaware. She was kind enough to let me vent, and asked me to lay out all of our questions, concerns, and frustrations with our current medical team. I told her our three main concerns were his c-spine instability, his vent and not trying other modes or types if home vents for him, and his diet. She assured me she would address all if these concerns, and hoped our medical team would be willing to listen.

One of the main docs over the dysplasia team at duPont, Dr. Bober, started out the meeting by saying, "the first year of life is a very long, hard road, but there is absolutely a happy ending. And these kids go on to thrive." Wouldn't it have been nice for our medical team to have heard that months ago? He went on to describe how these children typically behave - that blue spells, passing out when they poop, requiring high ventilation settings, being easily agitated, and requiring high sedation needs in the beginning are all characteristic and normal. He laid out in detail a general medical history that many of these kids typically follow, and he literally described my kid to a T. After this, I felt confident the rest of the meeting was going to go well. But even then, this meeting still surpassed anything I expected.

We first discussed his c-spine stability. Now as a reminder to our past c-spine and c-collar drama, when Aiden was first born, he was handled as any other newborn baby would be. In fact, perhaps more roughly at times as he had to be intubated, extubated, and reintubated a few times. In order to do this, you have to hold the child's head as far back as it will go in order to have a straight shot down the throat. But when he was around two months of age and the geneticists diagnosed him, they threw out a comment of, "By the way, these children have a c-spine precaution..." and his medical team panicked. They wouldn't let anyone touch him unnecessarily, move his head, dress him in clothing (until I just started doing it), hold him, or get him out of his bed unless he was wearing a c-collar. They even placed "osteopenia precautions" signs all over his bed space to drive the point home and essentially scare anyone coming by to see him into thinking if they touched him, his bones could break. Now obviously Aiden's type of dysplasia doesn't cause him to have brittle bones. But they did that, nonetheless, all to "ere on the side of caution".

At one point they wanted to make him wear a c-collar 24/7, and David got into a very heated argument with the director of the NICU about that. And because of the c-collar, as well as insisting he lay in bed flat on his back with minimal movement most of his life, he has a severely flat head. In fact, many people have told me he has the worst case of Plagiocephaly they have seen in their entire careers. But they won't allow him to have a helmet to reshape it, either.

So when Dr. Bober asked what imaging the medical team had done to look into his c-spine and they couldn't answer him, I was both overjoyed and outraged when his come back was, "So you are telling me you are making Aiden wear a c-collar based upon an assumption? And you've never done what's necessary to explore that?" He went on to explain the MRI's they have done for skeletal surveys are not enough, and the only way you can really look into c-spine stability is if you do flexion and extension x-rays of his neck. I can't tell you how many times we have told them that ourselves, but they always refused to do it. Dr. Bober even said based upon what he can see in those MRI's, Aiden is fine and what you should expect to see. He explained that the c-spine stability precautions are always there for just about any type of dysplasia because they are "all head" when they are little. So you should always be careful. But, in his words, "risk is risk, and he still needs the opportunity to strengthen those muscles."

So this week, we are getting the images duPont wants to see in order to dig deeper into his spine. They will review them for our medical team, and we could very well be getting rid of his bleeping c-collars for good. I really hope so. In this case, they would even allow him to get a helmet for his poor, flat head! When Aiden puts his collar on, he shuts down. I could go on forever about the benefits this would have for him; developmentally, emotionally, physically, mentally... But if by chance duPont comes back and says, "You know, after looking at the images, the c-collar would indeed be beneficial for him", I would have a much easier time accepting it from the experts.

One of the biggest battles we've continually had but I've never really talked much about is Aiden's diet. There is no such thing as a comprehensive growth chart for SEDc children simply because it's rare enough that information on this dysplasia is just barely being tracked and recorded. David and I have continually made a stink about it, the Dieticians have bounced back and forth between plotting him on both average height charts and achondroplasia charts, and in the meantime Aiden has been getting more and more chunky. It's been incredibly frustrating. When I spoke to the doctors at duPont before the meeting and I expressed my concerns about overfeeding him, they asked me to email them progressive pictures of Aiden to see just how big he has gotten.

When we started discussing his diet, Dr. Bober told our medical team that the pictures I sent him were "shocking". The NICU director defensively jumped in and said, "Well we've been plotting his growth on the skeletal dysplasia growth chart...". To which David interrupted, "Actually you've been using the achondroplasia chart, there is no growth chart for him." Dr. Bober sighed and continued, "I don't recommend using an achondroplasia growth chart either. Individuals with achondroplasia have big heads, long trunks, and short limbs. Those with SEDc have big heads, short trunks, and short limbs. However, their limbs are slightly longer and end up looking a little more proportioned. Achondroplasia growth charts are going to be completely different curves."

Dr. Bober put his foot down, and told them he needs to only be growing 10 grams a day. 5 grams is OK, 15 grams is absolutely unacceptable. Our medical team has been letting Aiden continually grow around 350 - 400 grams a week. That's around 300 MORE grams a week than he should be gaining. My child weighs around the same as an average toddler with SEDc. As you can imagine, this momma ain't happy. Especially because this is something we have banged our heads against the wall with them about since he was a tiny newborn. His weight has gotten completely out of hand, and has gotten to the point that he can't move his arms and legs well anymore. The Dieticians are finally listening after duPont told them to stop. But why did it take the experts to make them finally listen? Average height babies should only gain 30 - 40 grams per day, achondroplasia 20ish grams a day. So why did they let a child with SEDc, who is SMALLER then average height babies, and EVEN SMALLER then achondroplasia children, gain 50 grams a day!? And if the growth chart isn't there to follow, his appearance should be more than enough to tell you you are doing something wrong. I'm relieved they are listening now, but I'm afraid we are so far off on his weight, it's going to take a long time for him to lean out and get back on track.

In the middle of all this, Dr. Bober made a really good point. He said, "If you weren't overfeeding him so much, he wouldn't need to be on three different Diuretics." Ya, go figure...

Based upon duPont's recommended daily weight gain, and Aiden's growth so far, David made this "growth chart" for him. Shocking, isn't it?

And as if all of this wasn't good enough, we haven't even gotten to the best part of the meeting yet.

I know you are all well aware of the frustrations we have been having with Aiden's home vent trials. The RT that has been giving us so much heartache was present for the meeting, as well as our pulmonologist that refuses to try other modes on the home vent. The RT began by laying out all the different ranges of numbers they have tried on SIMV mode on the home vent. She finished by saying that Aiden just can't do it, and they are running out of options. To which the RT at duPont replied, "Well, have you tried AVAP mode?" There was a long, uncomfortable pause as our RT squirmed in her seat before she said, "Uh, well... um, no." The RT at duPont quickly followed with, "These kids need AVAP mode, SIMV mode doesn't work well for them. They can also do well on LTV vents, but the latest Trilogy home vent model has more settings to play around with and could end up being more beneficial."

Can I get an amen? In this moment, I never felt so validated in my entire journey with Aiden so far. duPont echoed exactly what we have been trying to tell them for weeks.

They went on to suggest a PEEP study, which can help lead them to figuring out the settings he needs on AVAP mode on the home vent. This goes over my head a little bit, but they will essentially play around with his vent settings while there is a scope down his trach. This way they can increase and decrease vent settings as necessary, while watching how it affects his airway and lungs. Then they can take the results from that, come up with an algorithm, and plug that in to the vent.

The fantastic news to all this is duPont effectively broke down some egos - our RT and pulmonologist are going to do the PEEP study tomorrow, and then try the home vent on AVAP mode. This means we are no longer going to transfer to the long term care facility this week. That may still be in our near future if the team here can't figure AVAP mode out, but I have hope again to finish up at PCH. And I'm surprised, the RT that has been giving us so many problems actually went to the long term care facility and got a quick training in AVAP mode and got some supplies for Aiden. I can't believe she did that for us. Perhaps hearing that this is the only acceptable mode for certain children motivated her to finally learn about it.

We have a very busy week ahead of us. His PEEP study and flexion/extension imaging is tomorrow. We could potentially try a home vent trial on AVAP mode by the end of the week. And we reworked his food and will begin weighing him a couple times a week with a goal of gaining 7 - 10 grams a day. Big, exciting things are happening, and we are over-the-moon excited for it. Finally we have been heard, validated, and have experts advocating along with us.

But I must admit, a big part of David and I are also pretty upset about this meeting. Why were we the ones that had to reach out to the experts and have them consult? In our opinions, the minute we confirmed Aiden's diagnosis, the medical team here should have been humble enough to say, "You know, I'm not well versed in this type of dwarfism. I'd better find someone who is." The team at duPont made it overtly clear that the medical team at PCH has dug themselves into a hole in terms of Aiden's care. They even threw out a quick blurb that he could have been home by 6 months of age. That statement stung my heart pretty deeply. I also can't help but feel like the trust I had in his doctors here has diminished. But I am also so relieved that we have someone guiding us back on course. Now my biggest hope and prayer is that we can make some changes that will make a big difference in his life and he can get home to me quickly.

November 17, 2016

Happy Prematurity Awareness Day

3 years and 2 months ago, my little Lydie-bug suddenly entered the world 6 weeks early. She was purple, barely breathing, barely making a small whimper, and very sick. She was taken to the NICU at IMC hospital via ambulance, while I had to stay behind at Riverton Hospital. We were terrified. During her time there, I witnessed her completely flat lining and having CPR performed on her twice. She had so many tubes in and around her, you could barely see her tiny body. The body you could see was bruised and scraped. Doctors told us she might not make it, but she fought hard. She still has her own battles with seizures and VSD, but she's a vibrant, spunky 3 year old with an infectious laugh.

Then Aiden entered the world a month early, and while a long NICU stay was certainly expected for him, entering this world for a second time was even harder than the first. I recognized all the beeps, stress, and fear, and had to endure flash backs to Lydia's own battle while simultaneously living Aiden's struggles.

I've laid in a hospital bed, still feeling delirious from the anesthesia and so weak from my C-section that I was unable to move, as they wheeled my baby into my room on an ambulance stretcher so that I may say goodbye. I desperately bawled as the Life Flight Team wheeled my tiny baby away from me. The image of her gray, lifeless body as they took her away forever haunts my thoughts.

I had to experience this a second time, only in a helicopter, and cried as I watched my husband and son walk down the hospital hallway as I helplessly sat in a wheelchair.

Taking Lydia to IMC Hospital via ambulance

Taking Aiden to Primary Children's Hospital via helicopter

I've seen my babies so completely covered in medical equipment that you could barely see their tiny bodies. The little skin you could see was swollen, bruised, and scabbed over.

Too many times for both my children have I desperately watched monitors as their heart rates and oxygen levels plummeted. Too often during those times I yelled out my child's name and shook their tiny bodies in desperation to get them to come back, only to be elbowed out of the way as a swarm of scrubs entered the room and began to do chest compressions.

I have held my son's hand in a desperate attempt to console him as he silently screamed while the IV team poked him over and over and over again - once a total of 18 times.

I sat in the hallway and listened to my daughter scream as nurses attempted to put in PICC lines through her belly button, arm, and legs. My intuition surged through my body, telling me to run and protect her. But I couldn't - it was a sterile environment and I wasn't allowed in the room.

I've held back tears of frustration as I've attempted to get my sedated babies to look at and focus on me.

I've sat in a room full of doctors and ugly cried as they told me my son was very near death, and we needed to prepare ourselves and family for that.

I have witnessed more pain, sorrow, and helplessness after the birth of my precious babies then anyone ever should.

Being a NICU mother to premature babies is something I wouldn't wish on my worst enemy. It forces you to become a different type of mother and look at the world with a different pair of glasses. Not better by any means, but different. You experience every little detail of your child in a different light. Every breath they take, every smile they give you, every diaper you change, even the way they smell, becomes especially precious.

But in spite of the heartache and PTSD I'm sure both David and I have, I wouldn't change the way they entered the world. Yes they both have and continue to endure things no child should. But they have taught me how to love deeper, appreciate more, and showed me a strength I never thought I had.

They, including Melodie for being the big sister to two NICU siblings, are incredible children. I consider myself lucky to get to be their mother. NICU babies are a special breed of children, and their parents have the privilege of witnessing their fights. It's a terrible, emotional, often heartbreaking but just as joyful rollercoaster that makes you love them just that much more.

November 13, 2016

Major Disappointments

I know it's been awhile since our last update. A lot has been happening each day. And as I would begin to write an update, something else would happen that would cause me to start writing the update all over again. But I'm currently sitting at a birthday party for one of Melodie's classmates, and after trying to engage in conversation with the other moms that are obviously more interested in Pinterest, it's become clear to me that I have some time to dedicate to an update. (Side note, that drives me crazy. What happened to moms talking and getting to know each other at birthday parties?!)

Since our last care conference, David and I have been feeling very disheartened. And very frustrated. And frankly, pretty ticked off. At this point, what were we going to do? The feeling of desperation and helplessness plagued my thoughts and sleep constantly.

After praying, I felt inspired to consult the wisdom of the other parents with SEDc children. They directed us to the doctors at the skeletal dysplasia clinic at duPont Hospital in Delaware. I was aware of this clinic and experts before now, and have even asked our medical team to consult with them many times before on various issues. Unfortunately they have never done so themselves. So we determined we would have to do it ourselves. We weren't sure if the doctors would consult, but thought that the threat of us seeking a second opinion might at least put a fire under their bellies again.

After leaving several tearful voicemails with anyone whose name was attached to the skeletal dysplasia clinic, I anxiously kept my phone next to me at all times. The minute my phone rang, I'd jump to see the caller, only to feel a slight disappointment when the caller ID wasn't a Delaware number.

In the meantime we told our medical team that we reached out to the experts and to hopefully expect to hear from them. At this time, we happened to have a neonatologist assigned to us that had never had Aiden before. He's not new to the NICU by any means, but by chance was never put over Aiden during his rotation. Once this doctor found out we contacted duPont Hospital, he replied with a, "Oh, I know the head neonatologist at duPont as well. I'll email him myself."

David and I talked in awe over that coincidence. And really, can we count that simply as a coincidence? What are the chances that we happened to have this neonatologist for the first time, at the exact same moment we contacted duPont, that happened to know the head of the NICU over there personally? I'm continually overwhelmed by the ways we see Heavenly Father's hands in our situation. I know that He watches over us and ensures we have the resources we need to help Aiden.

After a very long week, duPont called back. Not only were they thrilled to learn another child with SEDc was born, but they were also anxious to help us as well. They contacted PCH, and we signed paperwork to release all of Aiden's medical records to them to look over. It took PCH another week to gather all of his info and send it out. But honestly, we don't blame them for taking that long. Last I counted, Aiden was up to 56 xrays alone - and I last counted back in July.

After we sent his charts off to Delaware, his medical team here decided to hook him up to the home vent and see what he did. (Putting a fire under their belly sure did work, ha!) David and I rearranged our schedules to be there for him when it happened. When they brought the vent into the room, I began to shake from nerves. I didn't know what to expect, but I stood next to him and held his hand. When they switched him over, he didn't even seem to notice. They kept him on for 15 minutes, and the entire time he chatted away with me, happy as can be.

He was able to do two more days of the home vent and got up to 30 minutes on it. But on that fourth day, he didn't even last a minute. The next day, same thing - couldn't do it at all. Every day since then, he hasn't been able to handle the home vent for more than five minutes. Every day his medical team has played around with the settings, trying different number ranges to see what might work - but nothing has worked.

At these moments, I've felt more defeated then at any other point with his journey thus far. And the biggest frustration lies from the fact that it's not him, it's the medical team. Everyone in the NICU agrees that we know he can do it, we just can't figure out the settings he needs to help him be successful. Everyone, even up to the director of the NICU, has expressed to us that they are "no expert" on the vent, and doesn't understand the machine well enough to help him.

I finally turned to the NP one day and said, "Do you even realize how incredibly frustrating and maddening it is to hear that no one in the hospital is trained on this vent? How much it ticks me off that a single person here isn't trained well and that you are incapable of providing the resources needed to help my son?" But all she could do was nod her head and say, "I know, and I'm so sorry."

David and I felt so desperate, we actually spent an evening looking at homes for sale in Delaware. We thought that maybe moving our family to the experts would finally do something beneficial for Aiden. But Delaware answered back, and mentioned that children with SEDc need to go home on either an LTV vent, or on a different mode on the Trilogy vent.

PCH doesn't have a single LTV vent available. So David and I spent an entire day tracking down an LTV vent at Home Care ourselves, only to find out the pulmonologist refuses to allow him be on it even though the skeletal dysplasia pulmonologist suggested it. Apparently the two of them have conflicting ideas about this vent. The expert claims it can be beneficial for our son's bell-shaped rib cage, while the doc here claims it's harsher on lungs. Whatever.

So after a whole day of phone calls and emotions wasted on our part finding this vent and ultimately doing PCH's job for them, we turned to the next suggestion, which is the different mode on the Trilogy vent. But the minute we brought up this mode, it was immediately shut down by everyone in the room. Apparently, and again, no one in that hospital is trained well enough on the Trilogy vent to try and play around with that mode, and refuses to even try.

David and I once again turned to the incredible families we have gotten to know so well, only to find a clear consensus - all the kiddos with SEDc that are on the Trilogy home vent are on this different mode of ventilation. Curious, and a quick Google search later, David and I found the Trilogy handbook online and looked up this mode. It's literally the exact same mode of ventilation Aiden is on now on the hospital vent, just a different name. Exact. same. mode. Are you beginning to feel the asinine frustrations we are feeling yet?

(Also, we've been doing this way too long if we can open a handbook for a piece of medical equipment willy-nilly, and understand every word of it.)

Out of sheer desperation again, we've brought these things up with his medical team, trying anything to get them to change their minds. But because no one is trained well enough, the pulmonologist doesn't think it's safe to try it for him. Even though Aiden's doing it - right now, as you read this. And we get the safety issue. But that's not the problem here. The problem is the obvious lack of training in the hospital concerning the Trilogy vent. And quite frankly, it's unacceptable to deny a child something he needs just because you are unable to adequately train your staff.

Unfortunately, we know that we just aren't going to win this one. There isn't much to fight about when people flat out don't know what they are doing. And this has left us thinking we now have no choice but to transfer Aiden to the dreaded long term care facility. Clearly we are at the point that sitting around at PCH is a waste of time. And ironically enough, South Davis has a fully capable RT staff that is well versed in the mode that Aiden needs. And if it turns out he needs an LTV vent instead, South Davis is more than willing to call Home Care about the LTV vent we found.

I'm terrified to be even thinking about this place seriously. I don't know how we are going to do it. But ultimately if they have the resources to get Aiden home, then we will do what he needs and figure it out. David keeps assuring me we've figured it out this far, so we can figure this out too.

We have a meeting with the head doctor and RT at South Davis this upcoming Thursday. We plan on very honestly telling them all the things we've heard that causes us to be nervous, and lay out our expectations for Aiden's care. I guess we'll see how it goes, as we have no other options left. 

October 17, 2016

Where To Go From Here?

David and I have come to a few crossroads with Aiden's care, and we have some big decisions to make concerning him and his future. And right now, I have no idea what to do.

Now that Aiden is back to his normal self, the hospital has been pushing us towards a long term care facility. But David and I have a lot of reservations about going there. The doctors at Primary's boasts to us that "we will love this place!" They claim this facility treats babies as if they are normal babies. They have a routine, get them up and dressed, play with them, take them on walks... Considering that no matter what I do or say some nurses leave Aiden in bed all day with no interactions now, this seems like a magical place to go to. Until David and I started reaching out to other families that have had to take their babies to this care facility, and then the stories turn out to be very different.

Not a single family has had a positive thing to say about the nursing there. We have heard nothing but negative experiences. One family had to be sent back to the hospital because a nurse gave her baby another child's set of medicines for the entire day and got sick. I've heard about babies sitting in poopy diapers for hours, causing their child to get rashes so bad they bleed. Multiple parents have expressed that they claim to get babies out of bed, but because it's one nurse to four children, their babies are really left in their cribs and ignored all day. One family finally had to take a leave of absence at their jobs, leave their other children at family member's homes, and stay there day and night just to ensure their baby was taken care of. The general consensus from parents is that this place is very old, scary, and their babies are neglected.

I don't know about you, but I'm going to take a parent's word over a doctor's.

Whether these parents are exaggerating or not, this long term care facility poses another huge problem for our family. It. is. so. far. away. By the time we were to drive the girls to a babysitter, and then make the trek up there, it would nearly be a two hour drive one way. We are already drowning from spending money on gas to make the hour drive to see him daily. Not to mention the alarming amount of miles we are racking up on our cars. And with Melodie being in school, we need to keep some sort of routine at home to ensure she (and Lydia) thrives as well. By the time we were to get up to Aiden in the afternoon, we would almost have to turn around again to get the girls to bed. I've played out a million different scenarios in my mind as to how we can make that work - but I just can't think of a way to do it. Unless David were to take a leave of absence from work. But we have piles of bills coming in and financially that isn't even close to an option either.

If babies are truly neglected to the point that these five families have expressed to me, then what is going to happen to Aiden if we can't be there for him? We would barely see him during the week. And can you guys imagine having to send your baby off to a facility that's so far away, you would only get to see them on the weekends? The mere thought of going to this facility has been keeping me up at night. I have consistent nightmares about it. It's been giving me anxiety. I am so stressed out because I don't know what to do.

The only way we can avoid this facility is if the hospital does trials for the home vent at the hospital. This has proven to be another battle in of itself.

Neonatologists, RT's, NP's, and nurses have expressed to us that they think he's ready to do a home vent trial. David and I feel like he is too. And really, what harm could be done? He's big and stable enough that if he can't do it, then all we need to do is quickly switch him back to his other vent, and give him a few minutes to calm down. There is only one person in the entire NICU that is holding us back from that. And honestly, I don't get this person. We find this RT very frustrating. They claim she is the guru of all vents, and whatever she says around that place goes.

During the time he was sick and in so much distress, we had to put him back on the ventilator that is a step down from the Aveda he was on. We discovered that being so sick was causing him to breath rapidly. His rapid, heavy breathing was causing the vent to not sync with him, and he was air trapping. So as he was in the middle of exhaling, the vent would force him to inhale, and he was never fully releasing all the air from his lungs. As I'm sure you can imagine, this panicking breathing forced him to hyperventilate.

Unfortunately the Aveda vent is a fairly basic machine without many options for mode of ventilation. So to help him out, they put him back on the step down of vents until he recovered. Although this other vent is technically used for smaller babies in need of more support, it's also a newer machine with more options and modes. They were able to put him on a mode that allows him to control his I-time - which means he dictates every breath he takes, and the ventilator only supports him by expanding his lungs big enough to sustain himself. The vent doesn't force any additional breaths in between his own. They assured us we shouldn't consider this as a step down. In a way he was almost on less support because he's strong enough to initiate breaths on his own. This was just a way to ensure the vent didn't force him to air trap while he recovered from being sick, and then we would go back.

So since Aiden is recovered and stable again, the time has come to switch his vents back. We had a care conference around that theme to come up with a plan, and brainstorm a mode on the Aveda vent that resembled the one he's on on the step down vent so he can have that control. We were also planning on discussing home vent trials as well - until the Queen RT walked in the room.

She scoffed at the idea of doing home vent trials, claiming he was still on way too much support and not even close to doing them. The reason David and I have such a hard time following what she is saying is because of all the other people at that NICU saying otherwise. Why would countless other RT's, nurses, NP's, and Doctors express that we should try it? I guarantee this lady isn't the only self proclaimed "vent expert" around the NICU, and I certainly don't see why everyone allows her to say she is either.

I also don't believe she is the "expert" because of the 15+ families I have now spoken to about home vents. I've talked to countless individuals whose children came home on much higher settings than Aiden. Some of these families have children with SEDc as well, and a couple of them have toddlers with SEDc that are on the settings and number ranges as Aiden today. And they are twice his age, and came home at his age on twice the support!

I talked to one specific family whose child was also at the NICU at Primary's for nine months. He was also trached and vent dependent, and for months this "expert" RT claimed this child was nowhere near home vent trials either. So they shipped this baby off to the long term care facility. The moment this baby arrived, the RT's there literally laughed at the the "expert's" claim to him not being ready, and immediately started home vent trials. That baby was home in two months, and he came home on the exact vent settings and number ranges that Aiden is on now. Another mom had the same experience, and her child is on significant less support than Aiden now. RT's couldn't believe the "expert" said she wasn't ready either, and she's in the middle of home trials right now.

I feel so frustrated. How can you be the expert when clearly it can be done? How can one person waltz around the NICU with that much say and pull over the countless other medical individuals that have said otherwise? How can I possibly begin to trust her opinion when I've heard parents say other RT's have literally laughed out loud at her idea that the baby isn't ready?

David and I feel so frustrated and defeated. Our many neonatologists agree that it's time for him to come home. They want him out of there before he falls further behind developmentally. Not to mention him being at the hospital is just tempting fate for him to get sick again. We were lucky this time. I don't want to tempt fate again.

I can't believe that a room full of medical experts were in agreement about home vent trials until this "expert" opened her mouth.

We are putting him back on the Aveda vent tomorrow morning, and have a REAL expert consulting so that we can try to mimic the settings he was on on the other vent. We have to go to this vent before we start home trials anyway. Because the Aveda and home vent have similar settings, we need to find a mode he likes on the Aveda so that we can copy it on the home vent. And we have then insisted and made them agree to try a home vent trial at the hospital before we further discuss going to the long term care facility.

The good thing (if there can be one...) about this long term care facility is that if the "vent expert" gets laughed at by the RT's there for her claims that kids aren't ready, maybe we could get home faster. But we've heard so many horror stories about nurses, I'd almost rather stay at Primary's longer for the nursing care.

I feel so conflicted about what to do.

The "vent expert" agreed to a home vent trial first, but she thinks he's a "long, long, looooong ways away from that". It's going to be a fight to get them to even try it in a few weeks. And if he can't do it there, I'm afraid the long term care facility will be inevitable. But considering all the numbers I've gathered and the stories from other families, I feel like this "expert" isn't even willing to try, and is just trying to push us out the door.

In a perfect world and perfect situation, David and I will be able to push them to hook him up to the home vent in a few weeks. And Aiden will do so well, that we can continue doing home vent trials at Primary's, and get him home straight from there. But if there is anything I've learned from this experience, it's that nothing goes your way and we will probably end up at the long term care facility that's two hours away and I'll never get to see my baby.

Feeling frustrated, unheard, stressed, and anxious doesn't even begin to express how I'm feeling right now. I want my baby home, and I'm tired of being given the run-around and being treated like I'm stupid at the hospital. If 15+ families have children come home on much higher settings, don't treat me like I don't know anything. The majority rules, lady. Aiden is 7 months old now - 7 months old - and he hasn't stepped a foot inside his own home yet. For 7 months I have only gotten to be with, hold, and take care of my baby for a few hours a day, a couple days a week. It's torture. I'm tired of it. I don't want to deal with any more doctors, or "vent experts", or nurses that keep my baby laying in bed all day. I'm done. I don't know how I can do this much longer. I just want him home. And believe me, he wants to be home too.

October 11, 2016

My Boy Is Back

It has taken quite a bit of time, but my little monster man is finally back to me. Fully, and completely.

I don't know if I adequately described how scary this bought of sickness was, or the miracles we have once again received. Even my mind has a hard time wrapping around it. His medical team told us he was more sick than when he was first born during that week. And medically speaking, when you look at all the numbers, he shouldn't have survived it. And if he did survive it, he certainly shouldn't have come back completely as himself.

I remember them telling us to be prepared for brain damage of some kind. Explained to us that an infection that bad could have affected any number of areas of his brain. They did his MRI expecting to tell us what areas were affected and what that could mean for him. When his MRI came back normal - they were flabbergasted. NP's and Neonatologists still come by and tell us they can't believe it. Medically and logically thinking, that shouldn't have happened.

I saw in the news the other day a story about a 5 year old girl that contracted an infection very similar to Aiden, and passed away from it. When I saw that story, it hit me pretty hard. I felt a deep sorrow for her family, knowing a large glimpse of what they went through and the terror they experienced. It broke my heart, and further drove home the unwavering stream of miracles and blessings we've been receiving. It's a very humbling place to be in.

We were so lucky Aiden was already in the hospital when it happened. His amazing nurses that acted quickly to help him is a large part as to why he came out of this. If something like this happened at home, I'd be posting a very different blog post right now. But on the flip side to that, the biggest reason this happened is because he is in the hospital. It's very much a double-edged sword you don't want to be close to. And I'm so tired of being close to it.

I'm so done with the NICU, done driving there and back each day, done seeing my baby for only a few hours. And he's done with it too. It's time for him to come home. I just know in my heart that if he were here, he would be doing so much better. Not that he isn't well taken care of there - but he wants and needs his family. And we need him. Nearly 7 months in the NICU is way too long. I'd give anything to have my baby with me all the time. Anything. And I've reached a breaking point of not having him with me. He has started to get upset each day as we leave. He'll even reach his arms out to me and start to cry as I put him back in bed and say goodbye. To make him experience that isn't fair. And I don't know how much longer I can handle that each day myself.

We have another care conference later this week to hash out a respiratory plan to get him on the home vent. And I'm nervous for that. I'm realistic enough to realize we have a ways to go still. But there are a lot of uncertainties and things the hospital is trying to push on us that David and I don't want to happen. It's going to be a doozy of a care conference. I know we've received many miracles already, but we are going to need our biggest miracle yet to get out of the hospital.

September 19, 2016

Special Needs Doesn't Make Me Special

***I've been contemplating writing this for awhile. But it's starting to take a mental toll on me, and I feel like I need to get it out. If at any time something I say sounds passive aggressive, or snarky, or even like I'm "proud to be humble" (if you know what I mean), then throw that preconceived notion out of your mind before reading on. Because the things I have to say are truly sincere, raw, and heartfelt.***

I feel like ever since Aiden was born, and the term "special needs parent" was promptly placed upon my head, I've been having a bit of an identity crisis.

I've shared this with very few people in my life, but I've always thought I would have a child with special needs. David could even recall to you a time when we were engaged and I asked him if he would be OK with having a child with special needs. Of course, he was. And probably thought I was a little crazy after wards as well. But he married me anyway, so things panned out for me after all.

Fast forward to my pregnancy with Aiden, and this feeling was manifested to me again. The day I found out I was pregnant, I was in the dollar store when a sweet young man with Down Syndrome came up to me, said, "You are beautiful lady!", and gave me a big ol' bear hug. I happily hugged him back, and as I did so, a clear voice came into my mind that said,"This baby will have special needs."

As we neared our 20 week appointment, the thought stuck in my mind constantly. There were many times I thought about asking David if he ever thought this baby could be special, but something always stopped me. I was afraid. Afraid I would sound crazy, afraid if I said it out loud it would have come true, afraid that this baby would end up fine and then I wouldn't just "sound" crazy - I would actually be crazy. I never ended up saying anything to David, and this is the first time he is finding this out as well. (Hey, honey! Surprise! I never told you my feeling about Aiden... Sorry for being chicken. Love you!) When we had our 20 week ultrasound in my OB's office, and the ultrasound tech kept re-doing the same measurements over and over again, and my doctor entered the room asking us to sit down... I knew at that moment I was right.

I was afraid and mourned not having a "normal" child, but eventually felt like officially wearing the hat of "special need's mom" was going to be alright. I had to learn to love Aiden for being who he was.

After he was born, I quickly realized that Aiden was just that, Aiden. He is exactly who he is supposed to be, and came to this earth in a perfect body for him.

There are many moments that I still mourn what could have been for him. I'm angry, saddened, and mentally scarred to have witnessed the things his tiny body has had to endure. I'd give anything to take it all away from him and place it on my shoulders instead. I'd gladly lay in that bed for him if it meant all his pain was taken away.  But through these moments, I have to remind myself that the only reason I mourn what could have been, is because I realize what could have been. If I can raise Aiden the way I hope to; having confidence, being independent, and loving himself for who he is, then there is no reason to mourn "what could have been". We only need to celebrate what is!

As I stated at the beginning of this post, I have been having an identity crisis. Ever since this hat was placed on me, I've noticed everyone around me has been treating me differently. But I don't feel any different. I mean sure, I'm a walking zombie, I have more zits then I've had since I was 14 from stress, and I know more about the medical world than my naturally-squeamish self thought I'd ever know... But I still feel pretty much like me.

I can see I've grown in ways, but not in ways to justify the changed attitudes of people towards me. It's an uncomfortable place to be in when people treat you in such a different way than how you feel about yourself.

On another side of the coin, so many friends have disappeared from my life. I'm not sure if they are uncomfortable with the medical-centered life I now live, or if they think I no longer have time for them. Perhaps my situation is not comfortable for people to be around? Whatever the reason, it hurts. I came to find immediately that the life of a special needs parent is a very lonely, isolated life. When you are knee deep in a very new, stressful, difficult world, loneliness makes it that much more difficult to cope with it all. And it's strange place to be in to have lost so many people, and then have some individuals in my life look at me with this odd sense of awe at the same time. Is that awe pity? Reverence? Saddness? It's hard to decifer, even if it's meant with sincerity. And no matter what it is, it's an uncomfortable spot to be in.

We know that our Heavenly Father is a God of law and order. And we know that as the creator of all things, He also created the laws and rules behind all the sciences. He did this so He could push go on Earth, sort of speak, and let the laws of nature He created unfold. Does He sometimes intervene these laws and create His own? If course, that's His right as God of this Earth. But we also know that He doesn't create every rainstorm we have either. He set the laws in motion for our Earth to do that herself.

Now someone is welcomed to disagree with me, but I think this same rule can apply to us. I truly don't believe Heavenly Father picked David and I out of a crowd of all our peers and said, "Well, you are stronger and better than all these other people, so therefore I'm going to send you an extra special child to look after. " I think it's ok to sometimes think that the laws of science and nature simply happened, and because Heavenly Father allows His laws to take place, those special children get a chance to come down here. And being the loving, just God He is, He'll prepare those families to receive and take care of those children accordingly. He began to prepare me by giving me those feelings during my life. He knew I'd need time.

I think this idea that David and I, and anyone else with a special needs child, must be exceptional people in order to have a special needs child divides our communities. I realize it's not intentional, but when you think of someone as being better than you, you are in turn placing that person beside you. It causes you to think about and treat that individual person differently. Believe me, the divide is real, and it hurts, no matter how unintentional it is. It's a very uncomfortable world to be thrown in to.

Trust me when I tell you I'm no stronger than you. And further trust me when I tell you that if you were in my shoes, you'd be able to do my life as well. After all, all of us already do all we can for our children. My child just happens to have more drastic needs to be met. But you also know you'd do the same if you needed to. I'm no different than anyone else and I'm still the same person. David and I still want to go out on a Friday night and have a normal conversation with friends. If you see us at the store, please come say hi. If there are scowls on our faces, I promise it's just sleep deprivation. But lucky for you, sleep deprivation makes us loopy. There is no need to think of us differently or treat us differently.

I've come to find our society misconstrues the term "special needs". We tend to put emphasis on the word "special" as if it's a noun and attach that to the individual. But the phrase is special NEEDS. Special is the adjective describing the needs of an individual. And if you were to really think about it, each person on this earth has special needs. I'm nearly entering my 30's, and I am still terrified of the dark and have to sleep with a night light. I'd say that's a pretty special need for myself. If we could just shift our way of thinking when we hear the term "special needs", it wouldn't subconsciously create such a divide among us.

One of my biggest hopes and wishes is to have Aiden live a life where he won't be treated differently. If I could create a perfect world for him, I'd make sure he was loved and accepted in every way and by every person. It scares me to think that the world we live in is the very opposite of that. I feel like I'm getting a little taste of the divide he'll feel his entire life - and it's no fun. But I'm determined to not let the world get in his way no matter what.

The Longest Two Weeks Of My Life

This amazing little boy is determined to not let anything kick him down. Once again he's baffled his medical team. A doctor told me he's seen much healthier babies succumb to much less illness. And while we still have a long way to go, we are starting to get there again.

Aiden wore his EEG and was on video surveillance for nearly four days. At one point his seizures were so bad, he was having one every five minutes. My poor husband stayed at the hospital for 13+ hours a day during this time. He couldn't touch or get near Aiden during his seizures to ensure the nuerologist team watching him could get an accurate EEG reading and video of how his body was acting. So David just got to sit there, watching our baby have seizure after seizure, and couldn't do anything for him.

Watching our Aiden helplessly convulse over and over again, while being powerless to do so much as comfort him, is a nightmare for any parent to experience. I'm glad David was there for him during those awful hours. Aiden's little sister Lydia has seizures herself, and I sit and cry each time as I hold her during her convulsions. She always wakes up afterwards and says, "Mommy, I just had a seizure..." and it kills me inside. Watching Aiden go through that while not being able to go near him would have broken me completely. I'm thankful David had the strength to be there when I couldn't.

His neurologist explained to us that sometimes when you get sick and have seizures caused by a high fever, you get a short in your connection somewhere, and your brain gets stuck in a mode of having seizure after seizure. You have to medically "restart" the brain to get you out of that cycle. And in order to restart medically, you have to use drugs.

So we gave him four different seizure medicines separately over the span of nearly two days. Each med seemed to work for a period of time, but after a few hours the seizures would start up again. So his medical team finally decided to try medical paralysis. They gave him a big enough dose that would have equaled going under general anesthesia, with the intention of limiting as much brain activity as they possible could. I tell you, I was up all night waiting for phone calls from our nurse with updates! And as an answer to many tearful prayers, that seemed to do the trick. His brain restarted, seizures stopped, and for the first time in a few days, he went into a REM cycle as he slept.

The next day Aiden finally woke up, but his eyes were stuck at the top of his head as if he was staring at the ceiling. He wasn't able to bring them down or move them at all. So he laid in his crib, distantly staring at nothing, and barely moving the rest of his body. Everyone was convinced it was a sign of exhaustion, and the key was to see small improvement of gaining control of his eyes again.

They wanted to do an MRI to see if any brain damage had happened from the infection. When the day came that he was stable enough to travel downstairs for his MRI, I was a nervous wreck. And of course, we had to wait a full 24 hours before we heard back from anyone. No sleep happened that night, and I could barely function the next day as we waited. But when the neurologist finally came to share the results, his entire medical team and David and I was once again stunned. The MRI came back showing NO brain damage. We were all floored and overjoyed. What another huge miracle we were blessed with. However, after the sickness and his seizures, our neurologist told David and I not to be surprised if he regressed developmentally. She told us that he will need to learn how to reach out at toys, smack his lips, track, and even smile again. I took that news pretty hard. Even after the good news of no brain damage, I was crushed to hear that.

Each day he has been making a slow progress towards being himself again. After a week his eyes were no longer stuck at the top of his head. He is having small moments where he is engaged and acting like himself. When he's like that, I can see the sparkle come back to his brown eyes. My sweet, bubbly boy is there. But those moments have been brief, and you can see the sparkle fade, and he becomes lifeless again. It's so hard to deal with. As I see the light fade, I'll call out to him. More and more he is starting to come back when he hears me. But still most often, as the light fades and he checks out mentally, he sits and looks right through you. Almost as if I'm holding a baby doll, and not my baby. It's been very hard for me to cope seeing him like that. The few moments that he has really looked at me have been what's kept me going these past few days. I hope and pray as the seizure meds wean off, he will come back to me completely.

This past Sunday when the girls came to visit, he did look right at them - and gave them a big smile! I was thrilled to see that! And he has started to slowly move his body and "talk" to us. He has yet to try and reach out to grasp toys, track with his eyes, or smack his lips again. A part of me feels very impatient to have my Aiden back, but I have to remind myself it takes a long time to come back after being so near death.

September 01, 2016

So Many Uncertainties

This week I feel like I've been walking through a nightmare that I can't wake up from. I'm having such a hard time processing how a UTI could turn into something like this.

The good news in all this is he's showing how incredibly strong he is. We were worried about this turning into meningitis for a few days. But even if it had, the three different antibiotics they have been giving him are also for that. And since he was already in the hospital, we caught it before we think it could have done any major damage.

He's also had zero respiratory issues during this, which shows his strength as well. His oxygen needs and vent numbers have never looked better or been lower.

They have been poking him for blood every 6 hours to check on the infection. The bacteria in his blood is showing less and less, proving we are on top of the infection and the antibiotics are working.

The bad news is that his EEG showed he's having seizures. Everyone keeps telling us they don't think it's permanent, it's most likely from being so sick and his high fever, and they have started him on seizure medicine.

Everyone also keeps telling us it's because he's so sick, but my bubbly little Aiden is gone. He's like a vegetable right now. He hasn't woken up in days. The only time his eyes are open, they are rolling into the back of his head as he's seizing and incoherent. Aiden has disappeared mentally, and I'm nothing short of devastated.

Yes everyone says they think it's because he's sick, but what if it's not? They can't give a for sure "it's because he's sick", it's always a statement of, "we THINK it's because he's sick". That word "think" terrifies me. What if this caused him permanent brain damage? What if he never wakes up? What if my sweet, expressive little boy that lit up as I walked in to see him each day is gone? What if he never catches himself halfway through a smile, only to force himself to pout as his eyes twinkle from knowing he's being silly again? Will he ever smack his lips at me after I kiss him? Will he ever wiggle in delight again as I munch on his squishy cheeks? Will he no longer wake up and squirm with excitement when his sisters come to play?

And if he really is ok, when is he going to wake up and be himself again?

I'm crushed. We were so close to the end of his NICU stay. For the first time, I could see a real end in sight. He was happy and acting like a normal baby. He didn't need any extra medicine for almost two months. We were weaning his sedation with no problems because he wasn't needing it. All we were doing was waiting for him to grow big enough to start trials on the home vent. And then suddenly, our entire world came crashing down on us again. Suddenly my baby is mentally gone, and so sick I can't hold him again.

I find myself feeling so incredibly angry as well. Why did Heavenly Father allow this to happen? He is perfectly capable of just letting Aiden have a simple UTI. Is it really necessary to continue letting him suffer? What was the point of letting him get so sick he was on the edge of death again?

It's nothing short of torture to have to helplessly watch your child suffer. And in spite of all the miracles we've had, all I can feel is a deep anger towards God right now, while also desperately pleading with Him to give me back my happy baby.

I'm so scared for the future. I'm so scared for his recovery. I'm so scared that he is never going to wake up. I'm exhausted and angry and anxious and heartbroken. And it's so hard trying to act like all is well around his sisters to shield them from undo stress. Makes this situation that much harder to pretend to be happy when you are screaming and crying on the inside.

August 30, 2016

UTI Gone Horribly Wrong

The past few days we've had some incredibly scary things happen. I feel before having Aiden, I was very naive and lived in a little bubble. Aiden has shown me just how serious the tiniest of things can be. Got a cold? No big deal! Feel like I've got a UTI? I'll just call my doctor! Before him, I never thought a simple, "normal" illness could escalate into something life threatening, Who knew a UTI could be catastrophic?

It all started with a small fever, and Aiden being very fussy last Wednesday. He wasn't acting like himself, and you could tell he didn't feel good. So we ran a series of tests to see what could be going on, and his urine sample came back positive for E coli.

I know this is one of those "hot internet topics"; and I don't want to get any debates going. But a lot of people have been asking me, "Boys can get a UTI?". So for the sake of informing; yes, Aiden isn't circumcised - when have we had a moment to even think about that!? And yes, it's fairly common for baby boys that are uncircumcised to get UTI's. So theoretically, a UTI isn't too big of a deal and almost to be expected. We started an IV of antibiotics, and started giving him Tylenol and Ibuprofen intermittently to help him with the fever.

We all thought he was doing ok. He was obviously very grouchy, and didn't feel well. But he was still having moments of being perky. He was, all in all, acting how you would expect a baby to act. On Sunday we thought we were getting him over the hump of it... Until 4 am that Monday morning.

Aiden suddenly took a turn for the worse. He spiked a fever of 107, had a heart rate in the high 230's, a CO2 level in the 100's, blood pressure all over the place, and oxygen needs at 100% as well. He was unresponsive, sweating bullets, and his body wasn't functioning well.

The NP called me as I was on my way to take Melodie to school, and told me I needed to come in right away. They were worried about him as he was clearly septic, and at the time being, they didn't know why.

Hearing the term "your child is going septic and we don't know why" is terrifying. Your body goes through three stages of Sepsis, and if you can't intervene medically in time, your body will shut down and you will pass away. This happens when a bacteria or virus your body is fighting starts to take over. There isn't a specific illness that turns into sepsis, it all falls on that specific illness getting out of hand.

The first stage is a very high fever, and a high heart rate and high respiratory rate. Aiden had a fever of 107, heart rate around the 230's (baseline is 130's), and I can't remember his respiratory rate, but he was panting.

Next your body goes into severe sepsis, in which case your body starts to shut down. You are unresponsive, you can go into seizures because of the high fever, if you don't get liquids in your body your blood pressure could decrease rapidly, and your kidneys and bowels start to stop working. Aiden was completely unresponsive - just staring off in space as if he was already gone. He hadn't pooped or peed almost the entire day and so they had to catheter him. We believe he didn't have any seizures during the time of his high fever, but I'll get more into that later.

The next stage is septic shock, which is basically when each organ begins to shut down - and by that time it's only a matter of time.

When I heard he was going septic, I fell into a panic attack. I felt completely helpless as I sat in the carpool line to drop off Melodie and quietly cried. I couldn't move anywhere, and sat there terrified he was going to pass away as I took Melodie to school.Thankfully David was able to leave work to go to him, and what he walked in to was terrifying.

When you are in between the second and third stages of sepsis, it's a matter of minutes to bring the person back before you lose them. I know Heavenly Father watches out for us, because Aiden happened to have one of his best primary nurses that day. She's an amazing nurse, very good at what she does and incredibly knowledgeable. And she always tells me she loves Aiden like one of her own sons, and is always proactive and watching out for him. Between her and David, they put multiple fans around his bed and covered him in wet burp cloths to cool his fever quickly. She stopped his feeds, replaced breast milk with straight fluids, and in one try started an IV with more fluids to help his blood pressure. They ordered even more tests to find out what was causing this, and concentrated on his fever as we waited for the results.

It took half of the day Monday, but they were able to bring his temperature down slowly. And as his fever cooled off, his heart rate and respiratory rate slowly came down as well. The catheter helped him pee, and our nurse literally squeezed his stomach and forced poop to come out to get his bowels working again.

They were able to save him, but this was another incredibly close moment where we were on the doorstep of losing him. And what a horrible way to have almost lost him.

The test results came back positive for E coli in his bloodstream. We aren't exactly sure how it happened, but it seems the stream of E coli in his bladder wasn't responding well to the first antibiotic, and so it spread throughout his body until it entered his bloodstream and gave him septicemia (blood poisoning). It's rare, but it can happen. And who knew a UTI can get to the point of killing you.

We have been able to get Aiden stable again, although he's once again on a lot of sedatives to allow his body to recover. David says he is slightly more responsive today. He still only stares blankly at the ceiling when he's awake, but he has started to blink more and has given David a few eyebrow raises. As he's awake and stares, he's been chewing on his tongue rhythmically, so he is going to have an EEG tonight to make sure going septic hasn't caused him to have seizures. And we are going to monitor and follow up to make sure this didn't cause any damage to his kidneys.

The medical team has been assuring us he's under control now, but I'm feeling like I've been in a consistent anxiety attack since Monday. I can't believe how quickly Aiden's body started to shut down on him, and how close he just came to death. If it wasn't for his nurse and medical team acting as quickly as they did, we would have lost him. We had minutes to spare before his organs would have started to shut down. And at that point, there isn't much else you can do.

I'm so worried about him and his recovery. David has advised me to stay away from the hospital for a few days to protect me from seeing him the way he is right now. I'm so worried this will have long-term affects on him. And I'm worried how much this may have set us back again. David has been at the hospital around the clock to stay with him, and I'm doing my best to keep the girls going on a normal schedule at home. But for some reason, out of all the close calls we have had, this one is affecting me the most.

Please keep us in your prayers. The stress is starting to take a toll on all members of our family. Lydia's seizures have started up again, we've put Melodie in counseling, and David and I are completely exhausted and feel like we are walking around in a state of panic all the time. We are blessed to have been at the right place when this happened. But I'd really like for these things to stop happening.

The miracles we keep receiving astound me. The mere fact that his nurse was able to get him an IV with one poke is a miracle that helped save him. Usually it takes an IV team 5-8 tries to give him an IV. And I can't believe the willpower and strength he has. If this were to happen even a month ago, he wouldn't have made it through something like this. But once again, he's still here!

August 23, 2016

Even More Battles - Diuretics and Doctor's Egos

Just when you thought the battles are over, they only continue... (and will probably never stop)

It's incredibly frustrating to have different Neonatologists constantly switching each other out. I understand why it happens; doctors can't be living in the NICU 24/7/365. But on the other hand, because said doctors have a home to go to each night, wouldn't it make sense to stick to the plan established by the previous doctor if it's working well?

I don't understand the mindset of most of these doctors. It's as if their own personal egos and opinions get in the way of the individual child they are caring for. They have little regard for what the previous doctor set up. And instead of reading notes and the patient's history, they just look at the past day and willy-nilly go from there.

For a perfect example of this, let me begin telling you of our battle of the week:

Aiden has been doing fantastic. Truly. He hasn't needed a PRN sedative in nearly a month, his oxygen needs have been consistently low (his sweet spot is 30%), and he has been having less desat and bradycardia spells. He handles his c-collar being put on and off all day, with him frequently being moved to and from his bed as well. He has been happy, content, and for the first time since he was born, behaving like a normal baby. He still passes out when he poops - but that's something that seems fairly common with kids that have SEDc. And he can recover himself after passing out without needing extra help. Our primary nurses know him so well that as he bears down and turns purple, they don't turn up his oxygen or give him manual breaths. They know that he'll bear down, pass out, poop, then pops his eyes open and will come right back. For him this is amazing.

We had made a plan with his medical team that we were going to let him be. "No changes is a good change" was our motto. Because he is finally happy and comfortable, we want to keep him that way so that he may continue to grow and be healthy.

But alas, that medical team switched out for the next rotation of doctors. Our previous Neonatologist wrote in his chart that we weren't going to make any changes at this time. So naturally you would think we would continue the same course of action - right? ...RIGHT???? Wrong. 

This new doc walked in and basically said, "Oh, let's stop his diuretics.". And just like that, took my diuretic-dependent-since-day-one, five month old baby completely off his Lasixs. Didn't wean it slowly, didn't even cut the dose in half first, just put a complete stop to it. 

I have two big problems with this.

First - it was clearly written in his chart that we were going to continue his "no changes is a good change" plan. Is your ego and personal ideals really worth more then following that? Obviously.

And second - we have already tried taking him off diuretics three times in the past, and all three of those times lead to a whole slew of other problems. One of the times they tried that, it almost killed him. 

If you bothered doing some research on my child before walking to his bedside, you would have found evidence of that. Maybe it would have led you to think about trying to wean a little of his dosage first and see what he did. Or maybe if you bothered reading his chart, you would have seen that our plan was no changes for the next little bit so that we may continue to promote healthy lung growth. But no, this doctor waltzed in and didn't bother taking a look at any of that. Or maybe he did, and just didn't care? Either way, that's a big no-no in my book. Either situation, and the result points to the same conclusion. It shows a general lack of care and concern for my baby - and you need to get over yourself.

So when David and I found out this happened, we protested. The doctor argued Lasixs has side affects that mess up your potassium and sodium levels. We argued back that we'd much rather focus on lung development and supplement potassium and sodium with meds. After all, a big reason he needs diuretics is because he doesn't have healthy lungs. Breathing is much more important then low sodium levels - especially when you can easily make up for low sodium in other ways. But the doc insisted on giving it a try.

So Aiden got super puffy again. His oxygen needs went up into the 50's, he was uncomfortable, his ventilator support was going higher, and he was starting to have more desat spells as well. All because he was retaining fluid and his lungs were getting wet. After a few days of back and forth, I finally called the doctor to his bedside, looked him straight in the eye, and said, "I'm not asking you, I am telling you to give him his Lasix back. We are following the same exact path when we tried taking him off diuretics before, and I'm not going to risk losing him again because of it." His response to me? "Oh? We tried doing this before...?" 

...have we tried doing this before?! So you mean to tell me that you are a few days into your rotation, and you STILL haven't read my child's chart or history? Believe me, this is one example, but it's quite a novel theme around there.

He agreed to give Aiden his Lasix back after that, but only on half the does he had before. It helped a little, his vent needs went down slightly, and his oxygen dipped a tiny bit. But he still had wet lungs and was hugely puffy.

The next day was David's turn at the hospital, and he went in geared up for a fight. But he quickly found out it was that doctor's last day for his shift. It was very obvious to David and I at this point that this specific doctor had very little regard for our requests, opinions, and our child's needs. So we let it be for the day, and we returned the next day ready to fight with the next doctor about Aiden's diuretics.

However, much to our delight, the first thing this new Neonatologist did was take one look at Aiden and his chart, and said, "Wow, uhm... why did we get rid of Lasixs? He's dependent on it, he has lung problems!", and ordered for him to get his full dose of Lasix back. Amen.

Everyone that works in the NICU or has experienced the NICU will probably echo the same theme; "it's a rollercoaster ride". And it certainly is. You experience consistent ups and downs, and you never know what to expect when you walk into your baby's room. Each time you make a little progress forward, you will also take a few steps back. 

Certainly the NICU rollercoaster is largely dependent upon the health of the baby, but when you've been at the NICU for as long as we have, you start to notice that the rollercoaster is rarely started by the baby. It's doctors and NPs that don't pay attention to details and rely on their own opinion rather than the individual needs of the child. And when the life of that child is in your hands, you better look at every detail and leave your arrogance at the door. 

I understand that this doctor was concerned for Aiden and the side affects his diuretics present. I don't understand having so much pride in yourself that you can't see past your own nose and hear the countless nurses that tell you he needs it, or the parents that question why we aren't focusing on lung growth first. If you can't listen and see what that child truly needs, then maybe you are in the wrong field.

It's interesting, the PR people at Primary Children's Hospital try to make you feel real warm and fuzzy about "the hospital on the mountainside". And we are blessed to have some fantastic resources there with some equally fantastic doctors. But they also have a lot of issues they don't like to mention, and their NICU is ran very sloppily. Another doctor actually said to David's face once, "You have to remember who the medical professionals here are." You may be a doctor, but I am his parent and have spent every single day by his bedside. If you feel like you need to waive your degree in my face and insult me when we are telling you something needs to change, then there are greater issues that need to be addressed. And much to these doctors surprise - every time David and I have been right. It just takes for Aiden to be near death for those doctors to drop their ego and do something for him.

Recently when talking to the manager of nursing about a few concerns we had, she told us, "You are one of the savviest set of parent's we've ever had at the NICU. Nothing gets past you two." - and you better believe it! It won't continue to get past us either. Looking back, I can honestly say at least half of the issues Aiden has had were not caused immediately by his own health, they were created by the doctors and NPs. It makes me wonder how much further along we would be in his care if they stopped treating him like a medical experiment.

July 29, 2016

The War Continues: Battle of the C-collar

One of the other issues we've been battling with Aiden's medical team is his c-collar. I loathe his c-collar. I despise his c-collar. I want to burn his c-collar. I want to throw his c-collar out the window. I want to run over his c-collar with my car. I want to force his doctors to wear a c-collar for a day, and see how they like it! I can't wait until we can say "buh-bye, now!" to his c-collar for good.

I get it - one wrong move, and Aiden could be paralyzed forever. It's a real threat, and not something I want to risk happening to him. I would much rather be safe than sorry. But even then, I. Hate. His. C-collar.

And here's why:

1. Many nurses don't even know what a c-collar is, and hardly any of them want to put it on. And it's a huge hassle. It takes two pairs of hands to do it. You have to have one person unhook his trach, while the other person places the front part of his collar in-place on his chest, and then quickly plug the trach back in through the provided hole in the collar. And then one person must put their hand behind Aiden's back, slightly lift back his head, while the other person slides the front piece into place. Once the front piece is on, one person must lift him up, so that the other person can put the back piece of his collar underneath him, and then slowly lower him back into bed as you slide the collar in place. All the while making sure you aren't pinching his jowls or catching his ears. That's quite a process that can't be done any other way for fear of his own safety. And because of this, many nurses would rather not bother with it. Although he has a daily routine clearly outlined in his chart, they take one look at the collar, another look at him, and put the collar back under his bed.

Except for a handful of our primary nurses that have gotten used to putting it on, I walk in on an almost daily basis only to hear, "Well, I don't know how to do the c-collar, so I just waited for you to get here to put it on...". I can't tell you how much this agitates me. This is a nurse, in a hospital, full of resources and people that do know how to handle a c-collar. And rather than reaching out to those resources, they'd much rather not bother with him. And as a result, he lays in bed all day long until I get there and get him out myself.

So he is missing out on opportunities to be held, played with, and treated like a normal baby because everyone is afraid to put on his c-collar. That is not fair, and he shouldn't be deprived or treated differently then any other baby in the NICU because a nurse simply doesn't want to bother with it.

And, 2. He hates his c-collar too. He can only tolerate it for a max of four hours at a time before he starts to get fussy. It makes him sore, tired, and sweaty, and he gets very uncomfortable in it. I mean, can you imagine having a hard piece of plastic around your neck, half-way up the back of your head, and half-way down your back? I'm surprised he lasts as long as he does.

It limits his range of motion, and this frustrates him. It doesn't allow him to move his arms so that he can rub his eyes, or try to grab a toy. It doesn't allow him to move his head as much as he would like to. And it forces his body to stay in a rigid, stiff state so he can't freely wiggle his body around. When he is awake with it on, he will begin trying to do these things, but you can see the frustration in his face. He inevitably gives up after a few minutes, withdraws himself from his surroundings, and goes to sleep. And that kills me inside. A four and a half month old baby should not be withdrawing from trying out normal developmental things because he's forced to have a hard plastic neck brace strapped around him.

The hospital has been talking to us about transferring to a long-term care facility in the near future. A few months ago they had talked about wanting to get an MRI of his spine done to get a clearer picture of his ossification. This fell off the radar, but David and I brought it up again as this long-term care facility came up. We expressed that we would prefer to get it done while we are still at the hospital, rather than dealing with transferring back down to the hospital to do it later.

Right as we expressed this, he started getting jittery eyes and legs. This can also be a normal side effect of his sedation medicine, but his medical team panicked and thought they did something to damage his spine. They consulted neurosurgery for it, and in turn neurosurgery wrote an order that he needed to wear his c-collar 24/7, and rushed to get him into an MRI to check things out the next day.

The MRI results came back to show exactly what we all expected. His spine is short, compact, and tighter than an average person. Thus his diagnosis of SEDc, respectively. The MRI further showed there wasn't any damage done to his spine, and it even looked ever-so-slightly more ossified than his previous spinal xrays. His vertebrae is also aligned straight, which is great news as individuals with this type of dwarfism are prone to having severe scoliosis.

Further more, since his MRI revealed no damage, they concluded his jittery eyes and legs to indeed be a side affect of his medicine.

You would think all of this led to the neurosurgeon removing the order to wear his c-collar 24/7 - but it didn't. The order supposedly remained there.

David and I were very concerned about this. If there wasn't any damage to his spine, why would we force Aiden to be in his collar all the time? This was only going to cause a whole other set of issues for him - he could get break down and pressure sores, it would further flatten his already flat and funky head, it would be harder to notice when it was getting too small for him... And all of our primary nurses agreed with us - this was not a good thing for him and was unnecessary.

We finally took up our concerns with the director of the NICU, who in turn simply told us, "I think this is a good thing for him. It would force nurses to do more activities with him if it's already on." But that didn't sit right with me either. That is a nurses job. I wasn't about to torture my son with a neck brace 24/7 just to force a nurse to do the job they are there for.

As David and I played the political game concerning all this over a period of a few days, we noticed a very fast change in Aiden. He was starting to withdraw into a shell from being in that collar. He was distant, refused to engage with you, wouldn't interact or smile, and would avoid any contact you tried to establish. And he was very uncomfortable - to the point nurses had to give him PRN's around the clock just to keep him happy and under control.

So David went to the NICU director again, and this time they got into quite a heated argument about it. After laying out our concerns and subtly pointing out that we weren't going to allow them to force our son into a shell for their own liability concerns (because really, that is what this situation boils down to), the director agreed to set up a meeting with neurosurgery to discuss a better plan for his c-collar. The neurologist was going to be out of town for a few more days, and the director refused to talk to anyone but the doctor that originally made that order. She did allow his collar to come off at night when he was sleeping, but wouldn't make any other changes until that specific neurosurgeon came back from vacation.

In the meantime I was not happy or satisfied. So each day I walked in to his room, said to his nurse that day, "Look, I don't want you to get in trouble. I will tell the doctors I mandated this, and you are more than welcome to throw me under the bus as well. But I am going to kindly tell you to help me take off his collar right now." And the funny thing is, not a single nurse argued with me further. One of our primary nurses even "washed his collar" very thoroughly multiple times just to give off the appearance we were doing routine maintenance to it, and ultimately give him an even longer break from wearing it. For the few days I did this he didn't get out of bed once - but in the bigger scope of things, I knew at that moment mandating a break from his collar is what he needed most.

When the day finally came that our neurosurgeon was back in town, David went to the hospital geared-up and ready for another argument. We were both hell-bent on not letting them order Aiden is to wear his collar 24/7. Even if they made us sign paperwork stating we wouldn't sue in the event someone paralyzes him, we were prepared to do so. Whatever needed to be done to ensure his mental and emotional well-being was taken care of as well.

As David finally met up with our neurologist, he was immediately taken back when the doctor said, "I didn't mean for his collar to be worn 24/7 here on out, I only meant for the day he was going to MRI so that he was ready to be transported at any time. And especially because he was jittery, I wanted to rule out any damage to his spine that may have caused that. So just as before, he only needs to wear his c-collar as he's being transported or when he's out of bed." David simply said to him, "Sounds great, thank you. Would you not mind going in to the NICU director right now and let her know that?" Our doctor happily did so, and the NICU director didn't say another word to us about the collar after that.

This is yet another example of the inconsistencies we are continually dealing with. And I'm so fed up with it all. Where did the misunderstanding lie? Was this all just a big liability issue for this new, young NICU director that just started, in spite of what our neurosurgeon said? Our neurosurgeon was acting as if he didn't understand why he needed to come talk to us. Like this was always the plan and what he said from the beginning. And yet, David and I battled multiple people in the NICU about it for an entire week. And in the meantime, Aiden had to once again suffer through something he didn't need to.

It's so hard to be put into a position where you have to constantly question and argue against decisions being made for your son. There have been so many times I've wanted to march in there, guns blazing (figuratively, of course) and tongues flying. But if I only appear as an emotional, irate mother - how far would that get me? David and I have to be so careful in the way we handle things. We have to play the politics game, appeal to the right people, be careful in our wording so they take us seriously. When your child's life is literally in their hands as you do so, it takes every once of patience and strength in me to play the game. And nothing makes me more upset when a NICU director flat out says to us, "Well don't forget, we are the medical professionals..." as we question a decision they made for him.

Could I fast forward time until when he finally gets to be home with me?

Sir Chunks-a-lot