10 Trach Tips for Parents

The day before Thanksgiving of 2016, my husband and I made the most difficult decision we have ever had to make. We decided to follow the doctor's recommendation of having a tracheotomy done on our then one month old son. If you want to know what brought us to that point, you can read this blog entry.

The previous week, the doctors had taken us to another trach patient's room so we could see what to expect.  It was devastating. The child was crying while we were in his room, but you couldn't hear a sound coming from him. It still makes my stomach drop to think of that sweet child. Needless to say, Lance and I were not encouraged by the visit. We also didn't find it encouraging when another doctor stated, "I don't know why parents think trachs are a big deal, they aren't."

I would like to say that is an incorrect assessment. Trachs are a BIG deal. Aside from all of the emotions that come from the process, there is a series of unfortunate side effects. We were sent home "trained" on how to care for a baby with a trach. The training wasn't sufficient. We weren't prepared for how life would be at home. We were overwhelmed and unqualified. We left the hospital stressed, depressed and scared. These are the things I wish that I had known prior to leaving the hospital.

10 Trach Tips 

(for parents to know before leaving the hospital)

1. Seek Financial Help
As soon as the trach talk starts, parents need to start researching how to get financial aid. Start applying for any program you can think of that may help. Even if you don't think you will qualify. If you don't already have Medicaid, start learning how to obtain one of their numerous programs to help with all of the costs you are going to have related to the trach. (supplies, doctor's appointments, hospital visits, upcoming surgeries, and NURSING) Not all Medicaid created equally. Did you know that there are some Medicaid programs that you can pay a deductible to have medicaid coverage? Like an insurance premium? There's a formula they use to figure out how much your deductible will be based on the money in your household. Then, you can choose to pay month by month.
Pro tip: If you have savings, get rid of it or you won't qualify for a lot of the services. If you don't get rid of your savings and don't qualify for aid, you will then probably use said savings (and more) on medical bills.

2. Ask for In Home Care
You should be able to get nursing coverage in your home! Start asking right away about nursing help at home. If you have private insurance, they will give you the run around and tell you it's not possible. Do not accept that response. Keep asking questions and figure out how to get the help you will need. If you don't like the answer you get, ask someone else. I wish that I wouldn't have left the hospital until I had one!! They kept telling me I was competent and everything would be just fine. Everything was far from fine. Aside from my child being unhealthy, I also couldn't go back to work because it's really hard to find child care for a child with a trach. Our whole world was flipped upside down.

Even if it's just a nurse for the night time. You will be able to get some sleep! That will save your sanity, relationships...and your life!
(Did all of that sound dramatic? Good! It was meant to sound that way!)

3. Create a Supply List
There are endless supplies available in the hospital. Please remember that is NOT how it will be at home. I remember coming home with an oxygen/heart rate monitor. In the NICU they changed out the strips every day by throwing them in the trash. That's all I had known and seen so I did the same. Day three at home I was out of strips! I called my supply company and was told I only get two every month!!! In the NICU they also used a sterile catheter kit every. single. time. they suctioned. They taught us how to carefully put on each glove and suction. Then, throw everything away. Sounds amazing...except my insurance (medicaid included) would only provide 3 catheters kits a day. When the trach is first placed there is a lot of suctioning required. I am talking like multiple times an hour. So, again, I burned through all of my catheters very quickly. 

Check with your supply company to see how much of each supply you get per month before leaving the hospital. Make sure they have everything you need listed and ready to regularly order for you.

4. Get Organized
You are now wearing more hats than you have ever worn before. You are not only a parent, but you are now a nurse, therapist, and SECRETARY! In order to somewhat keep your sanity in tact, you need to get organized. Get a binder, or something to keep your papers organized. You will have medical bills, insurance letters, doctors notes, appointment reminders, etc. to keep up with! You will also want some form of calendar. I keep a Google Calendar on our family Google Account. That connects to my husbands phone and mine. I also keep a big family calendar on the fridge.

 You will also need to figure out how you are going to organize all of your supplies at home. This was how our place looked right after bringing home our baby. It drove me CRAZY! I ordered this off of Amazon to help me get organized. My nurse helped me too.

5. Make an Emergency Plan
You should go home with an ambu bag in case your child needs CPR. If your child has needed oxygen of any type in the past, I would recommend getting some to take home with you if needed. Contact your local fire department and utilities company to let them know you have a child with a trach in case of an emergency or power outage. You may also consider purchasing a generator to connect any equipment your child needs that requires electricity. 

6. Make a List of Doctors/Therapists
It will help to make a list of your child's care team. Keep a list of these in your child's room, on the  fridge, or wherever your family/caregivers can have quick access.

I love Google to help keep my family organized. I created a google account for our family that we now use for all doctors forms and to save important documents. I created a Google Sheet of all of my son's therapists and doctors. I included their name, specialty, number, and address.

7. Follow Your Gut
Doctors and nurses are AMAZING! I value their expertise and feedback. However, you know your child the best and you need to be their biggest advocate. I have a hard time with worrying people won't like me, so it was hard for me at first to really speak my mind repeatedly. I don't have a problem telling someone what I think is best once, but when I still don't like something after voicing my opinion, it gets harder for me to express myself. You will be making long-term decisions in a short amount of time and you need to trust your instincts. If you don't like something, say something. I called two different children's hospitals while my son was in the NICU. They will talk with you about what is happening and tell you their opinion. It helped me make tough decisions.

8. Find a Network of Other Parents
I cannot express the importance of this tip enough. Remember how I just said doctors and nurses are amazing? That's true, but they (most likely) haven't been the parent of a trach child. I found a few facebook groups that connected me with other trach parents.  They have helped me problem solve and talk with doctors about my child's needs. They are my heroes!!

9. Check out Community Resources
Think about what community resources may help your family during life outside of the hospital. Does you child qualify for feeding (speech), physical or occupational therapy? Will your insurance pay for that? Early interventions are so important! Are there support groups in your community? Organizations that you can apply for grants to get help with child care? Medical universities that are close by that have nursing students who could provide respite for your child when you need a break? 


10. Make a plan to take time for yourself!
We all know that we can't take care of others if we lose our minds, so take time for you. Ask, BEG, for help if you need to get away! Especially if you don't have nursing!

When we first brought home my son we didn't have any support. I virtually lived in a room with him all day every day, minus doctor's appointments. My son threw up A LOT (another trach thing that nobody warned me would happen) and feeding wasn't easy. I left the house one hour each week to wander aimlessly around the grocery store. I had never been so happy to see other people!

Things are so much better now (I mean, look at him!) but had I known then what I know now I could have avoided some major pitfalls. Hoping this information will help someone avoid them in the future!

Birth Day Timeline

10/20/2016
2:00 a.m.

I was awoken from my shallow, uncomfortable sleep by the familiar sharp pains of my bladder stabbing my gut. I waddled my, 9 month pregnant, self to the bathroom. This trip was about to be very different than all prior trips to the bathroom. Since I had just gone to the bathroom, I figured the stream of fluid running down my leg was probably not urine.

2:45 a.m. 
Had to go to the E.R. entrance since it is the middle of the night.

It was storming outside. When we went to check in at Labor and Delivery, the computer system was down. I had preregistered, but they had to pen and paper register me since they couldn't access the records.

Lance pushing me in a wheelchair through from E.R. to Labor and Delivery

5:00 a.m. 
Epidural please!

8:00 a.m.
Doctor came to check on me. I felt fine...thanks epidural! I was dilated to a 5. Said she would be back at lunch.

9:00 a.m. 
At least someone got some sleep! 😒

9:15 a.m.
I woke up Lance because I felt pressure down below! We called in the nurse.

9:18 a.m. 
Nurse came in and checked me. Her eyes widened. Told me not to move because the baby is coming.

9:30 a.m.
Tried to hold the baby in until the doctor got there. Every contraction felt like the baby was coming ready or not.

9:38 a.m.
Doctor came in, told me to push.

9:43 a.m.
After 3 pushes, Lane Gabriel entered the world!

9:44 a.m.
I questioned Lane's blue skin tone. Doctor reassured me that is normal. She tried to keep me calm. A strange noise was coming from Lane's throat. I assumed it's fluid he was trying to clear. The nurses wiped Lane clean and placed him on my belly to hand him to me for skin-to-skin. He went limp in the nurse's hands while on my belly. The panicked nurse coated her words with a calming tone as she said, "I'm just going to take him over here for a minute."

I watched as she took Lane to another table in the room. Another nurse rushed over to the table. I saw the fearful looks they exchanged. My doctor was still trying to calm me down. Lance was pacing the room with his hands on his head and tears in his eyes. The nurses started chest compressions and the "panic" (NICU) button was pressed. The orange, flashing lights and alarm started. A new team of doctors and nurses flew into the room. Just as quickly as they flew in, they flew out...with Lane. I asked Lance to go with him.

What the heck just happened?

10:00 a.m.
I sit alone in the recovery room. I cannot feel the bottom half of my body. My legs are immobile. One nurse comes into the room. I struggle to process what just occurred and what to expect next. I just laid there in shock.

10:15 a.m.
One of my best friends works in the hospital and rushed down to see me. As soon as she walked in the room my emotions hit me. We sat together holding hands and cried.

12:00 p.m.
I am finally able to go to the NICU to see Lane.

Still wasn't able to hold him, but I was able to stay in the room. We had no idea what caused him to code. He is intubated.


12:45 p.m.
My parents came to the hospital.

8:00 p.m. 
I got to hold Lane for the first time.

Respiratory therapist and nurse help to ensure all of his cords are in place after moving him.

The next day, the ENT came to scope Lane's airway for the first time. That's when we discovered his vocal cords were not moving well, which was causing him to struggle to breathe. A few weeks after that discovery, we were told he also had two brain abnormalities.

I wish I could say that through the pain, we have seen many triumphs. That there are silver linings, that this has made me stronger. That just isn't the case. We have had a year of just trying to survive and fight through adversity. I remember other trach moms telling me that it gets better after the first year. The tunnel we entered on October 20, 2016 was so long and dark I couldn't see any light. We kept stumbling through the darkness. We have tripped and fallen more times than I can count. We only have made it this far thanks to many people shining their lights to help guide and encourage us. Our faith has been the biggest light of all, though it hasn't been unwavering either. We are in a much better place now. We are still wearing our problem solving hats every day, have to make difficult decisions regularly, and advocate for what we think is best for Lane. BUT, we are better at knowing when to relax and just love our kids.

A Lesson on Resentment

The gaps from where Lane is developmentally, to where he should be continue to widen. Lance and I strive to stay positive on a daily basis. We struggle to stay positive while also remaining grounded. Staying optimistic while facing the reality in which we live. We recognize that we are blessed in many ways, but we also allow ourselves to occasionally wallow in the sadness we carry when facing what life has presented us. Some days we find ourselves scraping the bottom of our spiritual barrels to find some semblance of hope. Other days we convince ourselves that Lane will one day just blow us away with a great surge of improvement. 

Just two nights ago I had a dream that Lane started walking. He just jumped up and took off, leaving everyone in our house in shock. I woke up the next morning with a brief wave of hope. For a second, I lived in the beautiful haze of my dream.  Once my mind caught up with reality, I went through what I will call my Emotional Roller Coaster Ride to Reality. This ride takes me to the following stops (not always in this order):

• glimmer of hope
• sadness
• anger
• fear
• stop your whining, pull yourself together!

I have the cycle memorized.  I hop on this ride often. When we first brought Lane home from the hospital this was how I woke up every single morning. I would wake up hoping none of it had ever happened and that I was still pregnant. It has gotten better. I am not as frequent of a passenger as I once was, but still ride more than I'd like.

I just noticed that his breathing mask is covering the 'P' on his shirt so it says, "Lane Awesome." 💙

The most common reason I jump on this roller coaster is resentment. I get jealous of what other people have. Angry that I have to watch my child suffer. Sad when I think about what he should be doing at this age and is unable. Scared of what his future holds. 

<rant warning>I resent that I can't just buy whatever cute outfits I see for him because I have to think about what will work with his trach, feeding tube and oxygen foot monitor. I resent the milestone updates that I see telling me what he should be doing right now. I resent seeing families with gaggles of healthy children at the store. I resent that he won't be able to really participate in eating his 1st birthday cake (in just one more week!!) I resent that he is like a sack of potatoes when I pick him up. I resent that he won't just eat on his own...what the heck?! I resent that I can't answer simple questions like, "How is Lane doing?" with much optimism making me sound like Debbie Downer. I resent that his older sister will have to worry about things beyond her maturity level. I resent that I tried to do everything right during pregnancy and sat and listened to babies cry who were addicted to drugs in the NICU. I resent families who can save and keep the money they have earned. I resent...I could go on for days. <end rant> 

Eventually I start to think about all of the other battles that people are fighting, and start to feel guilty that I am spending time having a pity party. That's when I jump off and regain my composure, and on I go until my next ride...

A Lesson on Colpocephaly

This lesson is part 2 of 2 (hopefully) on Lane's brain. It took me a solid 4 months to be able to pronounce (Co-po-sef-a-lee) this diagnosis, and an additional two to spell it correctly. I still don't understand many things about this diagnosis. Just like his vocal cord paralysis and his corpus callosum hypoplasia...there is no known cause for his diagnosis of colpocephaly. 

To put it as simply as possible, when the mid-line (corpus callosum) of his brain didn't form correctly, grey matter formed in places to fill the gaps. Specifically in his occipital horns. (the back of his brain)

Normal looking (tiny) occipital horns

Colpocephaly occipital horns

The above MRI of colpocephaly is not Lane's MRI. His "horns" are not that large. His neurologist says that his case of colpocephaly is mild. While we are happy to hear the term "mild" it really has started to lose its shine. We have come to realize that the neurologist was accurate in saying the labels don't really tells us anything. We just had to wait and see what these diagnoses mean for Lane. We were told, by doctors and the internet, that many of the same set backs that are tied to the malformation of the corpus callosum are also present with individuals diagnosed with colpocephaly. Basically, we have a double whammy on all set backs. Many times individuals with this diagnosis have cognitive and motor delays. Some are minimal, others are extreme. 

What we know to be true about Lane currently that we can justly blame on his brain diagnoses...

• his eyes continue to be crossed--mainly his left one--surgery may be happening soon
• doesn't hold eye contact for long lengths of time
• he is at about 4-5 months old in gross motor development--we are starting to really focus on getting him to roll over and sit up
• he is at about 2 months old in fine motor development--can grasp with his hands, but not for long. Doesn't bring objects (other than his hands) to his mouth. Will occasionally reach for an object, but doesn't open his hands to grab.
• doesn't consistently eat orally

Lane has forced us to truly live in the moment. We are learning new things, experimenting new techniques and making choices we never thought we'd have to make. More importantly, he is reminding us to appreciate progress and helping us to remember to look on the bright side. 

A Lesson on the Corpus Callosum

You have 2 parts to your brain. Something we all probably already knew. Right and left hemisphere. There is also this inconspicuous piece of brain that runs right through the middle. It keeps each side of the brain talking to one another. That piece of the brain is called the Corpus Callosum. It is developed in utero during the end of the 1st trimester/beginning of the 2nd. (So you can imagine how crazy I have been driving myself trying to figure out what happened during those weeks of my pregnancy!!!) It does not continue to grow once it is developed. That is the part of the brain featured in today's lesson.

photo from http://brainmadesimple.com/corpus-callosum.html

When Lane was born we knew right away there was a problem with his breathing. It wasn't until after thorough testing to find a cause for the breathing problem, we were told that he also has two brain abnormalities. Up until recently we have been told that his brain abnormalities are not related to the problem with his vocal cords. Within the last month we had our first doctor's visit where the doctor said the two issues are, in fact, related. We don't really know what to do with that information since it is contrary to what we have always been told. It doesn't change anything either way, so we haven't spent a lot of time fixating on that change of information. A few months back I did notice that about 4-5 other kids from the Vocal Cord Paralysis Facebook group also have one of the same brain abnormalities that Lane has. Interesting...

One of the two of Lane's brain diagnoses is called Corpus Callosum Hypoplasia. This is the definition given by the website National Organization of Disorders of the Corpus Callosum: (I hyperlinked the website in case you don't already have it bookmarked.😜)

Hypoplasia of the Corpus Callosum Hypoplasia refers to a thin corpus callosum. On a mid-line view of the brain, the structure may extend through the entire area front-to-back as would a typical corpus callosum, but it looks notably thinner. It is unclear in this case if the callosal nerve fibers are fully functional and just limited in number, or if they are both less plentiful and more dysfunctional.

Basically that is saying, the mid-line of Lane's brain (the Corpus Callosum) is thinner than what it should be. It did not fully grow.

Lane's MRI

Typically these abnormalities cannot be detected in fetal ultrasounds unless they are very late term, 38-40 weeks. If Lane hadn't had a breathing problem at birth we still may not know that Lane is missing part of his Corpus Callosum. 

Lane's neurologist hasn't been able to give us much of an idea as to what this means for Lane's future. She said that she has some patients missing their entire Corpus Callosum that are completely asymptomatic, while others are only missing part of the structure and have many developmental delays. Some adults are walking around with abnormalities they don't know they have because they have never had an MRI. 

We know that a deformation of the Corpus Callosum typically causes cognitive and motor delays. We know he is behind with his motor skills. We won't know about his cognitive ability until later. Vision problems are also very common with this diagnosis, hence his crossed eyes. Seizures are common. Thankfully he hasn't had one. We are SO thankful for that. 

Only time will tell. This diagnosis has qualified Lane for multiple therapies. He has made some significant strides. We continue to work with him to defy the odds set against him. The unknown is a scary. All we can do is take life one day at a time and count our blessings.

He sure is handsome!

A Lesson about Vocal Cords

Lane questioning my intelligence on this subject matter.

Let me teach you something that I didn't learn until the age of 34, the day after Lane was born...vocal cords do more than help you vocalize! Maybe you are reading this and rolling your eyes at how I couldn't have figured that out before now, but I am choosing to believe that many others are just as ignorant to all of the functions that vocal cords serve.

As it turns out, vocal cords have a lot to do with breathing, eating and (of course) vocalizing. Your vocal cords should open and close when you inhale and exhale. (Mind blowing.) They close when you inhale so that other things do not get into places where they shouldn't go. (i.e. food, spit, liquid) They open when you breathe so that air can get to where it needs to go. (i.e. lungs)

This picture shows how healthy vocal cords function

Lane was diagnosed with Bilateral Vocal Cord Paresis/Paralysis. This basically means his vocal cords are mostly frozen. They do not work like that should. His happen to be frozen in a closed position. This means that he has less of a chance of things going where they should go. (i.e. food, spit liquid into lungs) It also means that he has a more difficult time breathing since the air has such little room to squeeze through. The following picture shows Lane's vocal cords. That is about as far apart as they get. So, he can breathe on his own for awhile, but he has to work hard and easily tires.

Lane's vocal cords

Vocal cords can change over time. It is fairly rare to grow out of Bilateral Vocal Cord Paresis/Paralysis, but it has been known to happen. Thankfully there are surgeries that can be done if needed. There is not a surgery that can make the vocal cords function like they should. In Lane's case it would be a matter of opening up that gap a little more so that he can breathe easier, and without a trach. It would stay more open and not be able to close. The problem with doing that is it could create other problems. (i.e. aspirating/choking) We are praying for a miracle so that we don't have to make such tough choices for him in his future. He has endured more in his 8 months of life than I have in my 35.

Do you see how complicated vocal cords are?! Who knew they did such important work?! This leads me to another, very important, conclusion...Ursula must have figured out a way to take only her voice, but still allow Ariel's vocal cords to mobilize so she could breathe. 😲

A Tribute to a Special (Needs) Father

Dear Daddy,
I know I wasn't what you were expecting and that life has really changed since I made my grand entrance. I know things haven't been easy. I also want you to know that I am so thankful you are my daddy. Here are just a few reasons why I'm so thankful for you today and every day.

Thank you for not giving up on me even when you are feeling hopeless. Thank you for not leaving me even in the darkest, scariest hours. Thank you for coming to the hospital every day during my first two months of life, after you'd worked a long day. Thank you for taking the time to learn how to take care of me and all of my extra needs. Thank you for holding my hand to comfort me when I cry. Thank you for not being afraid to hold me, even when I have been attached to various machines and equipment. Thank you for singing silly songs to me. Thank you for cradling and bouncing me when I am inconsolable. Thank you for getting up in the middle of the night to take care of me. Thank you for being patient with me while I try to learn how to do things at a much slower pace than other kids my age. Thank you for taking care of mommy when she struggles to find strength. Thank you for being brave enough to share your feelings of uncertainty, anger, and fear with others and not holding it inside where it could grow into resentment toward me. Thank you for taking such good care of my sister and showing her what unconditional love means, so that she will be a good teacher for me. Thank you for taking care of daily tasks around the house without being asked. (Okay, Mama told me to write that one.) Thank you for loving me even though I'm not exactly what you'd hoped I'd be. Thank you for not giving up hope that one day I can be the son you prayed and hoped for. Thank you for being an example of what it takes to be a real man. 




It's because of these things, because of you, Daddy, that I will achieve great things and become someone you will always be proud to call yours.

Happy Father's Day. I love you.

Love,
You Special (Needs) Child

*If you know Lance, you'll know the song in the slideshow has a special meaning to him. It is also a perfect description of his attitude toward fatherhood.  

Lessons on Facing Your Fears

What do you fear? If you made a list of fears what would be listed? I am going to start with the most obvious fear for most parents...an illness or death of a child. I was thinking, just yesterday, of how much my life has changed since he came last October. How so many things change when you have a baby, but so many more things happen when your baby isn't healthy. It's one of those things you fear, but never fully understand. I was getting ready to type, "never understand until you live it," but that's not even true. I still don't understand. My life is just now starting to feel a little more like my own. 

The last 7 months have been somewhat of an outer body experience. I have moments, multiple times a day, when I have to remind myself that this is actually happening. This is now my life. As I put on gloves to suction my baby...this is actually happening. I can't believe I know what it means to suction...this is actually happening. As I try to calm a baby that I know is upset, but I can't hear crying...this is actually happening. As I schedule nurses to come to and from my home...this is actually happening. As I call organizations that I have been referring other families to on a professional level for personal help...this is actually happening. As I realize that I can't send my child to a normal childcare facility...this is actually happening. As I work to organize 5 binders of paperwork for someone who hasn't yet turned a year...this is actually happening. I could go on and on.  Having Lane has given me a new perspective on life. He has made me a better person in so many ways. I still wish I wouldn't have had to learn these lessons this way, but at least I am trying to pay attention to what I can do with what I have been given.

My husband doesn't eat steak. Isn't that so weird? I  used to think so. It wasn't until I found out the reason why that I started to have a little bit of understanding. He's had a fear of choking since he was little. The texture and chewiness of steak, which ensues pleasure for most, sets off his panic feelers. Anytime Avery coughs or sputters while eating, he quickly runs to her rescue. Lane's vocal cords are fixed in a closed position.  This means there is less of a chance of him aspirating, but makes it harder for him to breathe. We have to be very careful with the way we feed Lane. He has a sensitive gag reflex. We helplessly watch Lane gag and choke on his secretions and food numerous times a day. Sometimes when he throws up, he aspirates on his vomit. This is so hard to watch. His body goes rigid, he reels his head back, eyes bulge and he gasps to catch his breath. It's is terrifying every time. It breaks my heart. I know it is excruciating for my husband, given his preexisting fear of choking. My husband actually handles Lane choking and throwing up much better than I do now. I am amazed at how calm and patient he is with Lane in those moments of panic for me. We have heard from many other parents that vomiting is just a part of the first year of trach life. Hopefully it will lessen and cease soon. 

I had the best childhood. When I think about being a child, I'm filled with warm fuzzies. I loved being the youngest in the family and having two fabulous older siblings. Friendships have always been extremely important to me. Most kids have hobbies or activities they spend their time doing.  I remember my mom constantly wanting me to get more involved with activities at school. Join the debate team. Try out for the play. None of those things enticed me. The only activity I wanted to participate in was socializing. Keeping positive relationships was my hobby. I would attend all of the sporting events, but that was just to talk to my friends. My parents quickly learned that if they wanted to punish me they needed to ground me from social events and the phone. That was the way to really make me regret my decisions. I know that sounds like most teenagers, but the importance of friendships didn't end with age. Friendships are still very important to me. I still talk with most of my close friends from childhood. Socialization is what my soul craves. My greatest fear is being ostracized. 

Once we had Lane, other trach moms warned me about taking him out into public with his compromised immune system. I brushed off their warnings thinking I just needed to get his immunity built up and it would be fine. It wasn't until after we brought him home from the hospital that I realized I couldn't take him anywhere. Not only because of the fear of illness, but be because of the amount of equipment and supplies he required. We didn't have any help with respite for him during that time. I felt like a prisoner. Not just in the house, but in his room. I was living in the bell jar. I had arrived at my personal hell. Watching my baby struggle and not being able to get any socialization. Two of my biggest fears came together at once. I had to live one day at a time. I had to pick myself up every morning to fight a daily battle. I know that sounds dramatic. I hope it does because that how it felt. Things are worlds better now that w have nursing. I believe it saved my marriage and my life. It allows me to go to the grocery store or take Avery on a play date. It allows Lance and I to go out to eat together occasionally. It allows me to write this blog! 

Lane has put things into perspective for us He has forced us to face our fears. He has taught us that we can go on even when we feel like we can't.  We can fight battles that seem impossible. 

Lessons on Faith

I will admit it, I am a bit of a control freak. One of Lane's nurses phrased it slightly more politely than that a few weeks ago when she said, "Well, I just wanted to ask because I know you are particular." 😀 Having children in general has shown me how little control that I actually have. Having Lane has showed me that I am not in control...like ever.

When Lane entered this world he was blue. Panic instantly flooded my body. He was making a strange sound with each breath. (We now know it was a stridor.) At the time, we thought it was just him adjusting to breathing in his new surroundings. They set him on my stomach and wiped him off in preparation for skin-to-skin. As they wiped him off, his whole little body went limp. One nurse with a fixed smile sweetly said, "I am just going to take him over here for a minute." I could see the worry in her eyes. She rushed him over to another nurse where they quickly worked to check his vitals. I was stuck in the bed across the room. I felt helpless and scared. My husband, Lance, had his hands on his head pacing around the room. My OB was trying to comfort me. Saying these this happen and "You'll know when to panic." It was right after she said those words that the nurses started chest compressions on Lane and the NICU panic button was pushed. An alarm went off and a team of doctors and nurses charged into the delivery room. They wheeled my baby boy out of the room. I hadn't gotten to hold him. I hadn't even really gotten to see him up close. I was left in the room with one other nurse for an hour to recover. I was crushed. I had to have faith that the doctors and nurses knew what to do and that God would take care of Lane. Thankfully, my best friend works at the same hospital. She ran down to my room as soon as she heard. She held my hand as I cried. That became her second job for the following 9 weeks while I made the NICU my second home.

My mom and dad visit Lane for the first time.

Every day in the NICU was a roller coaster. Things seemed to changed constantly and yet stay the same all at once. 9 weeks of maternity leave spent at the hospital. I would get up, take Avery to the babysitter's, and go to the hospital like I was going to work. Lance would go to work and come to the hospital after work. I would leave and pick up Avery to take her home for dinner and bed. Some nights one of us would go back to the hospital after dinner. When I wasn't at the hospital I had to have faith that these strangers would take care of Lane. It was awful. I felt like I needed to stay there all of the time, but I also had a two-year-old and a husband. I am so grateful for the nurses, doctors and specialists that took time to help take care of Lane. I know it wasn't easy to put up with Lance and I sometimes.

Lane's home for his first 9 weeks of life.

Lane a few days old. Swollen from birth and fluids.

For every medical procedure and suggestion, Lance and I have to use discernment and have faith that we are being led in the right direction. We typically second guess ourselves and sometimes disagree on what we should do to best help Lane. Every decision seems crucial and comes with so many uncertainties. Faith has pushed me through many doors that I was afraid to open.

We thought we were going to be taking Lane home from the hospital when he was about 3 weeks old. He had been eating relatively well and making gains in every area. Then, we were told he needed to be gaining weight consecutively for three days before being discharged. It was then discovered that Lane and I both had thrush. Some of the staff thought maybe he wasn't eating his bottles very well because he was in pain. They decided to give him morphine. Seems like a reasonable decision, until you think about how his vocal cords are already in a closed position. The morphine relaxed them even more and his oxygen levels tanked. It was the day that I refer to as "the perfect storm." I suppose I should start calling it the "most horrible, terrible, poop-storm ever imaginable." That's far too long of a title though. After his oxygen tanked they rolled in equipment we hadn't seen in his room for weeks. He was put on oxygen and sedated. He virtually spent 3 days in a coma and the medical staff was starting to have more conversations about Lane needing a trach. Ugh. Our worst fear. We decided to do the surgery when Lane was 4 1/2 weeks old. I keep having to renew my faith that we made the right decision for Lane when it comes to the trach. We have hope and pray he won't need to have the trach for much longer. A trip to Cincinnati Children's Hospital this June will hopefully provide more insight about that.

Lane after his tracheotomy, 4 1/2 weeks old.

Lane at 6 months.

So much has changed since Lane has been born. I have to have faith that God has a plan. I have to. Otherwise, I would just completely succumb to anger and depression. Since Lane arrived we have moved twice, my work world crumbled, my 2 year old stays home with me now, and some relationships have changed.  When we were sent home with Lane with virtually no help, it wasn't just his intensive care that was stressful. It was the world that we once knew fell apart around us. It has been a grieving process. We are slowly starting to pick up what pieces are salvageable to eventually put them back into place. There are still a lot of unknowns for Lane and our family. Like, could someone please give me a number of someone who know what they are talking about with Medicaid and Social Security? Seriously! (That's a whole other blog topic!)😨  We are taking things one day at a time. That's what we have to do. We also have to keep the faith that one day we will look back at this time in our lives and it'll be known as "the time we didn't think we'd live through."

Life Lessons with Lane

I am going to start with an overview of our life leading to Lane. I am going to keep out a lot of details because those will be included in other blog posts along the way. Lane's short life and our experiences could easily be made into a book series!

Lance and I were married in August of 2009. We knew we wanted to expand our family eventually. We waited a year before trying to have kids. Our first pregnancy came after trying for a year and a half. (Seemed like a decade.) I was actually going to start taking fertility drugs the day I found out I was expecting. I lived in nauseated bliss for 9 weeks. We went to our first appointment for an ultrasound to find an empty sack. We were heartbroken. It had taken so long for us to conceive and there we were, back at square one. We started trying again immediately. No luck after another year, so we started doing IUI's. We decided that we would do 6 IUI's before pursuing IVF. On our 6th IUI we found out we were pregnant! Cautious excitement overcame us! 
I had a wonderful pregnancy and gave birth to a beautiful, healthy girl.  9 months later I ended up in the ER with sharp pains in my side. I didn't know I was pregnant. It was an ectopic pregnancy that had somehow gone interstellar and landed on the outside of my ovary causing internal bleeding that had filled up to my chest. I passed out in the waiting room of the emergency room and had emergency surgery. Thankfully no parts had to be removed to prevent us from trying to conceive again. 

6 months later we were pregnant! We conceived naturally and were ecstatic! I had another healthy pregnancy. This time with a boy. I was a lot more tired having a two-year-old at home to chase around, but we were healthy! The labor started exactly as I had always dreamed. I got up in the middle of the night and my water broke. Rushed to the hospital and had a quick, painless (thanks epidural) birth. 

However, that's when the dream took a drastic turn for the worse. Lane Gabriel was born coded shortly after delivery. After chest compressions and the NICU team arriving in my room, he was taken to the NICU for further assessment. I had Lance go with him, and I was left in my recovery room trying to comprehend what had just occurred. 

Day 2 of Lane's life he was diagnosed with Bilateral Vocal Cord Paresis (Paralysis). His vocal cords were not moving well, and they were in a closed position. This means he has a little chance to choke, but being closed makes it extremely difficult to breathe. Somewhere along the NICU journey, the doctors did a series of tests to try to determine what caused the vocal cords to have poor mobility. Through an MRI, they discovered Lane has Corpus Callosum Hypoplasia and Colpocephaly. Two big diagnoses that basically could mean a)nothing or b)cognitive and motor delays. Only time will tell. 

In Lane's 6 months of life he has taught us more than we could have ever imagined. I often find myself thinking about all of the things Lane has taught us, both literally and metaphorically speaking. He has opened us to a new world of medical lingo and lessons, but he has also taught us a lot about the human spirit and character. I am using this blog as a way to let others get a glimpse into our daily life with Lane, organize my feels, and (hopefully) inspire and encourage. 

Stay tuned for Lane's first lesson. In the meantime follow Lane's story on his fb page, Love for Lane.