Ear infections, packing, & teething, OH MY!

Boy or boy, where do I start?

Well, it has been a long interesting month that is for sure. We have been busy getting ready for our trip to Florida, Wally turned 7 months (still cannot believe it)! 😍😍 And we have been dealing with an unexpected ear infection. 😭😭 A couple of weeks ago Wally became really irritable, whiney, pulling on his ears, just all around uncomfortable. For the first couple of days I chalked it up to teething. I was so hoping it was just teething. Ear infections are rough for any child, but for Wally and his sensitive stomach, the antibiotic just tears him up :(. But unfortunately on the fifth day, the symptoms had not gotten any better. So it was off to the doctors we went. Diagnosis-ear infection :(. I was so bummed out because it had only been exactly one month since his last double ear infection! (We are going to be talking to his doctor about having his blood work drawn more often to check for neutropenia.) We started the dreaded antibiotic (which gives him such bad diarrhea), and he slowly but surely got better. It’s funny because even though in pain and not feeling well, Wally’s personality comes out more and more every day. He never fails to make anyone who comes across him laugh and smile! He truly lights up our life.

On top of the ear infection he is also teething! When you are pregnant, everybody always has their two cents on what to do, what not to do, what to expect, but why in the heck does no one prepare you for the monster that is the teething monster!!👹 I mean my goodness, it is terrible! Grumpy, drooling, biting, chewing, just all around miserable. Add on the ear infection and lets just say it has been a long two weeks haha. But he’s getting stronger! He holds himself up so well now! Still is not sitting up on his own, but we know that will come with time. I must admit we haven’t been very diligent on the solids. Mainly because he has been such a mess I dreaded causing a belly ache on top of everything else he has/had going on. Although, he has showed more interest in what we are eating! And loved chewing on a waffle fry haha. But I am going to make it my mission to start being more consistent when we return from our trip!

Speaking of trip, can I just say, packing for yourself is one thing, but packing for a 7 month old, a medically fragile one at that, is down right exhausting. I have been so anxious getting ready for this trip, I have to remind myself to breathe most days. I just have been so afraid that I am going to forget something that requires Wally to survive and be well. This includes his medicines and feeding supplies. But I made a ton of lists! And that has helped tremendously! For all of you reading that don’t know, we are attending the Barth Conference in Clearwater Beach Florida! It will consist of other physicians and families who also have sons living with Barth Syndrome. We are so unbelievably excited to meet these wonderful people and were hoping to find out as much information as we can! I must say though, I am nervous how this trip is going to go. We are flying, and with Wally just getting over an ear infection I worry about his ears popping! Not to mention the anxiety being away from home and his routine! The thing with Wally is, he is so darn particular. From how he sleeps, to where he sleeps, to everything in between! I am hoping since we will be so busy and there will be a ton of people he will love the attention and go with the flow. From my lips to God’s ears! 😉

Thank you all for continuing to follow our journey. Wish us luck and pray for safe travels! ✈️✈️

Tough times never last

I know I haven’t posted an update in awhile. Mainly because… well life has been hard lately. I’ve been struggling a lot mentally. Having and dealing with anxiety and depression with very little sleep is mind numbing. Some days the exhaustion catches up to me and I have a tendency to retreat into this dark hole and sometimes it takes me awhile to get out of. Before Wally when I would have these episodes I would just sleep it off. Well as we all know that’s not possible with Mr. Wally J.

So I spend the dark moments mainly crying, begging God for strength, and trying to find the positive in every day. The truth is, being a mom to Wally is the best thing I have ever done. And for the most part he is doing wonderfully. But being the main care giver can take its toll. There are some days I don’t even recognize who I am anymore. I still haven’t lost all the baby weight and most days I don’t even look in a mirror because I’m just disgusted with how I look. There’s no time for the things I used to enjoy. No time for friends (the little friends I now have). Family. Even my dog and husband. I cannot even remember when is the last time I did something for myself. My days are consisted of taking care of Wally, drs appts, drawing up medicines, filling bottles, washing bottles, cleaning the house, making sure everyone is taken care of that I realize…. there’s no time left for myself. And than there’s the worrying. Worrying that Wally’s getting sick. Worrying that his heart will stop beating. Worrying about why he doesn’t sleep. Worrying about the future and what that may look like for him. Worrying about whether or not I should be doing something different for him. Is he hurting? Is he happy? Scared? My mind is always going in a thousand different directions and I can’t even begin to describe how exhausting it is.

Now don’t get my wrong. I have an amazing husband who is ever so patient with me and my crazy self. He helps as much as he can. And Wally just adores him. We also have people offering to help. But the problem I’m having is letting go of the control. Letting people help. Because I have this notion that no one can do it better than I can (not realistic). Wally can be difficult and he’s very particular and when I think about someone else watching him I panic. My heart literally races. I feel nauseous. Will he be good? Will it go ok? Will he wonder where I am? Do they know exactly how to swaddle him? Exactly how to feed him? Will they know when he’s tired or in pain? A lot of this… isn’t realistic. It’s my anxiety that I need to get under control. I need to learn to let go just a little bit.. But it’s hard. Oh so hard. And I struggle with it daily. As I type this with tears in my eyes I realize how big of a mess I am as I tell myself to just breathe.

I know a lot of the people who are close to us probably think I’m crazy. Some I believe are in denial of Wallys diagnosis. It’s easy to be in denial when he looks normal and you aren’t living the day to day with him. And maybe I am crazy. Actually I probably am just a little bit. I never would have imagined this would be my life. Never in my wildest dreams. But does anyone really think they’re going to lose a child? Or birth another child who will end up being medically fragile?

Every day I’m working on my anxiety. Working on letting go. It’s a rough road and times are tough, but I know in my heart it’ll get better.. And what will keep me going until then is Wally hitting a milestone. The way he looks up at me and smiles. That full belly laugh he does that makes my heart sing. He is my strength. He is my motivation. He is my will to keep on keeping on.

“Tough times never last, but tough people do.”

It’s ok to not be ok

Sleep. What is sleep? I feel like I haven’t slept since Walter has been born. He’s always been a terrible sleeper. Waking up frequently. Screaming when waking up like he is pain. It can be exhausting, overwhelming, and frustrating. Along with the wakings, theres also the every three hour feeds. For those of you that do not know, Wally ended up back in the hospital a week after we got home for failure to thrive. He ended up undergoing surgery for a G-tube. We are now on a strict schedule of 4 oz every three hours during the day and 4 oz every four hours at night. We hardly ever make it to the four hours, so it ends up being every three hours at night too. My husband works third shift four days a week, and second shift one day a week. So four out of the seven days I do the night wakings and feedings by myself. It makes for some very long, sleepless nights. Most days I feel like my head is in a fog and I cannot think straight.

I’m a person who has always loved sleep and have always needed a lot of it. So going without sleep is hard for me. You would think after six months, my body would be used to it by now. But unfortunately that’s not the case. It’s like having a newborn for six months straight. It affects my health and it affects my relationships with my loved ones because I’m so tired, mentally, emotionally, and physically, that when I do have a free moment I just want to sleep.

On June 20th Wally has his six month check up and the dreaded shots 😩😩. We plan on discussing with our pediatrician the idea of a sleep study or may be being seen by a neurologist. Wally constantly twitches, moans, and cries in his sleep. He is always restless and just acts like he cannot sleep well. With Barth Syndrome the boys can have muscle pain and muscle fatigue. We wonder if he may be having muscle pain which causes him to not sleep well.

The nights can be hard and long. There are times where I end up in the bathroom on the floor just crying because I just want him to sleep so I can sleep. And than I cry because my heart hurts for him. I want to fix what’s causing him to not sleep and I can’t and it’s the worst feeling in the world. My poor husband… there are many nights he gets angry and sad texts with how much I am struggling. Luckily he works in town so he can stop in if he isn’t busy. For that I am grateful.

The other night was an exceptionally hard night. This is hard for me to admit so please be gentle. Wally just got over a double ear infection almost a week ago. Ever since his ear infections he has not been sleeping. And when I say not sleeping, I mean waking every hour screaming. (We had his ears rechecked. They are fine). Well this certain night, I was exhausted. I had nothing left to give. I tried everything to get him to sleep. Tylenol. Walking. Rocking him. Laying him in bed with me. He would fall asleep but than awake again screaming. Every time he would wake up screaming, I got more and more frustrated. Why oh why wouldn’t my child sleep? I remember the tears would start forming the minute I would hear the first scream. There was one waking that I had to go outside on our front step and just take some deep breaths. And than I let the tears fall as I set on our front step sobbing as my child cried inside. I would think to myself I can’t do this anymore. I can’t help him. He deserves better. And than I thought about my husband being able to get a break by going to work and than being able to sleep during the day without any interruptions. And I got mad. I was so mad. Mad that he got a break. Mad that he got to sleep. Mad that I couldn’t help my child. Mad at God for making me a carrier of Barth syndrome and passing it on to my boys. But after a couple of minutes of throwing myself a pity party, I stood up and went back inside, walked in to my sweet baby’s room, sat with him in the rocking chair, and sobbed. I remembered praying over and over to God for strength and patience. Like that night there are many nights where I feel so alone. That all this responsibility falls on my shoulders and it’s so exhausting. Mentally, physically, and emotionally exhausting.

Sometimes I wonder how I’ll make it through another day. But than daylight comes and I look down in to the sweet face that is Wally J and he looks up at me and smiles and my heart feels like it could explode. The tiredness, the long nights, the tears, the anger forgotten. Because here is this sweet little boy who was (excuse my language) dealt a really shitty hand in life but continues to smile. Who looks at me like I’m his everything. Who even though, doesn’t sleep well continues to conquer each day with a smile and a coo.

The nights may be long and hard. But the days are full of smiles and laughs. Happy moments watching Wally discover this world. The way his eyes light up when his dad or I walk in to the room. The way his eyes get really big when he gets excited about something. The amount of love I feel watching AJ with him. The overwhelming happiness I feel when he reaches a milestone. The kisses and the snuggles. He goes through every day like he hasn’t a care in the world. He is happy, and for that I am grateful.

Wally has forever changed my life. He makes me want to be a better person, a better wife, daughter, nurse, friend. He gives me the strength to go on. He shows me every day with his smile that life isn’t all that bad. The love I feel for him replaces the tiredness that I feel every day. This little boy needs me. He needs me to be strong. To continue to fight for him and for a cure. To be his voice. I will always try my hardest to do all of that and more.

A good friend is always telling me, it’s ok to not be ok. And as hard as that is for me to admit, I am learning to not be so hard on myself. To give myself a break. And to remember this too shall pass. And even though I am always tired, the good out weighs the bad. The happy days replace the tired nights. I’m so lucky Wally is here. That he’s doing well. Unfortunately some parents aren’t so lucky.

So I will continue to find the strength through Wally and his smiles to make it through each day. I will continue to count my blessings and fight like hell to be the mom Wally needs me to be.

As always Wally’s warriors, thanks for reading.

Going Home

23 days. 23 days we spent at OSF Children’s hospital. 23 days without sleeping in my own bed. 23 days of not stepping foot in my house. 23 days of not getting to be with my fur baby. It was the longest 23 days of my life.

You see, Wally’s always been a terrible eater. Very rarely did he ever take more than 2oz at a time. He had an extreme tongue and lip tie that we had snipped and before all this Barth stuff we thought it was just because of that. Well while we were in the hospital he fell off the growth curve. And when we found out he had Barth syndrome and that his heart wasn’t functioning like it should the concern was getting enough calories in him to grow. They thought he wasn’t taking enough by mouth because for a child in heart failure eating for them is like running a marathon. Their hope was that with meds and hopefully improvement of his heart function he would start to eat more and not get so tired. Well after doing research Barth boys do not metabolize like we do. They do not grow like normal babies do. It’s possible to over feed them and when that happens they vomit. They are known for having belly aches, which Wally does. And for some reason they tend to not tolerate a lot of food. So we spent a lot of extra time in the hospital trying to figure out a happy medium of what Wally could tolerate and how we were going to get extra calories in him. Because the doctors did not know a lot about Barth syndrome, it was all trial and error. An NG tube was eventually placed so we could give his body a rest. He hated it. It was the absolute worst. I mean I wouldn’t like a tube up my nose and down my throat either but man he really really hated it. We tried an oil called MCT oil. It basically was to add extra calories. And of course Wally did not tolerate it and it caused severe belly aches. We tried different formulas. It was exhausting. Every night Wally got weighed and the number was always the same, 10lbs 15oz. It was the most frustrating thing because he couldn’t go home until he started gaining weight. And for weeks that just did not happen. AJ and I thought we were never going to see 11lbs.

Over time Wally slowly started taking a little more by mouth. They eventually agreed we could take out the NG tube. Which it did nothing for him anyways because every time we fed him through the NG he would vomit. Which in it self was frustrating. On the plus side, he was tolerating his meds. And by the grace of God his heart function was coming up!

Slowly but surely Wally gained enough weight where they decided we could be followed by his physicians as outpatient. Hallelujah!! We came in to the hospital with an almost two month old, a virus, one physician, and no meds. To leaving the hospital with an almost three month old, a genetic disorder, five physicians, and five medications. It’s still surreal to think about.

On February 25th, the doctors finally decided we could go home! AJ and I couldn’t pack up our stuff fast enough. We were so excited to go be a semi normal family again. We were ready to figure out what our new normal was going to be. It’s the little things people take for granted. Like how excited we were to sit Wally in his swing again, to play with him on the floor, to put him to sleep in his own room. To hold him with out all the tubing and wires. To give him an actual bath! You never know how great you actually have it until it’s all taken away from you.

With that, we knew Wally’s fight wasn’t over. We knew that our days would be consisted of a lot of worrying, trying to get him to gain weight, drs appts, figuring out where we were to go next. But we were just happy to be able to go be in our own home and to be able to sleep in our bed!

But with that excitement came the fear. The fear that something was going to go wrong. The fear of not having the nurses and doctors right there readily available. Fear that Wally’s heart could stop, that he could stop breathing. All the cardiac meds we had to now give ourselves. The dr appts we had to schedule. The fear of the unknown. People would say, “But you’re a nurse. You got this.” First of all yes I’m a nurse. A very newly graduated nurse. A nurse that works on Postpartum taking care of moms who just had their babies. I do not work with sick patients. I do not give cardiac meds. And I wish some people would realize nurses do not know everything. It’s impossible too. Plus giving high risk meds to your own child is a totally different ball game.

There was also the fact that Wally was still having belly aches. He still wasn’t sleeping. All of it was terrifying. I cannot even to tell you how many nights I laid awake just staring at him, taking in and memorizing every inch of his face, praying to God, “please let his heart keep beating, please don’t take another one of my babies from me.”

February is usually a month surrounded by hearts, love, candy, date nights, cards and gifts. Our February was spent in the hospital praying God wouldn’t take our baby from us. My life is nowhere near what I thought it would be. But I have the best husband and best friend anyone could ask for. An amazing little boy up in heaven watching over us all. The best fur baby. A roof over our heads, food in our bellies. And our wonderful Wally is here and thriving. And by the grace of God his heart is beating stronger than ever. ❤️❤️

“What gives me the most hope every day is God’s grace; knowing that his grace is going to give me the strength for whatever I face, knowing that nothing is a surprise to God”

Barth Syndrome

The number 13 is not a good number for our family. November 13th 2015, we lost our first born Henry. February 13th 2018 Walter got diagnosed with Barth Syndrome. I apologize, this post may be long, bare with me.

After Wally was born the neonatologist and our pediatrician both agreed that Wally should see genetics just to get checked because of what happened to Henry. We weren’t 100% sure what had caused Henry’s death. We never dwelled on that appointment because, well, maybe we were in denial. Maybe we didn’t want to believe that something could be wrong with Wally too. That appointment was scheduled for April. Because of everything going on with Wally we were able to meet with the genetics team while in the hospital. Thankfully. The genetics counselor Jen who visited us that very day we got the news about Wally’s heart is absolutely amazing. So warm. So compassionate. She wanted to run a blood test that for the life of me I can’t remember the name. But the test consisted of my blood, AJs blood, and Wally’s blood. It was a full DNA sequence test that would closely look at all three of our DNA. Jen had said that this test was super expensive, 14,000 to be exact, for one blood test, mind boggling. They actually had to get OSFs approval before sending it. It was sent to Mayos and she said we would hopefully have an answer within 5-7 days. The answer came in 5 days.

While we waited we got to know Wally’s cardiologist very well. Dr. Jantzen who we now call Dr. J. Amazing physician and an even more amazing person. We just adore him and are so thankful he is Wally’s cardiologist. We had a lot of talks about what it could be. What he thought it was. He talked about how we couldn’t really move forward until we had an answer for why this was happening. We talked about the guilt AJ and I felt as parents for not getting an echo done when Wally was born due to our history. He reassured us that we don’t know when Wally went in to heart failure. The echo could have been normal after birth and we would have been given false reassurance. Although this didn’t make it all better, it did help ease some of the guilt AJ and I felt. Remember in my earlier post where I talked about how Wally’s color always seemed to be off? The fussiness? How he always seemed to be in pain? Uncomfortable? Well now we know why. Dr. J said he was probably experiencing chest pain and muscle aches. Absolutely breaks my heart to think he was hurting and I didn’t know. I still to this day carry around a lot of guilt on what I could have done differently. I’m trying to cut myself some slack… but it’s hard.

The hardest discussion that the three of us had was discussing how RSV essentially saved Wally’s life. Heart failure in infants is hard to detect because they cannot tell you their symptoms. Most parents don’t realize their babies are in heart failure until it’s too late. Without being hospitalized for the RSV, a couple months down the road with Wally’s heart deteriorating rapidly and with no medicines, Wally would have gotten very sick. Probably even going in to cardiac arrest at home. At that point it would have been heart transplant or Wally would have died. Dr J said how lucky we were and how he had hope we had caught it early. With the help of medicines Wally could thrive. Still to this day I cannot process how lucky we are that Wally got RSV. To think how sick he would have gotten, without our knowledge, makes me feel physically ill. I try my hardest not to go there, to those thoughts. He’s here and he’s ok. That’s all that matters.

Five days after getting our blood drawn, we were sitting in Wally’s hospital room when in walked Dr. J and Jen. Jen has told us previously that if the test came back normal she’d call us. But if something came back abnormal that she’d be by to discuss it in person. So seeing her, we knew something had come back on the test. I remember looking at her and saying, “Ok what is it? Is it treatable? Fixable?” She said “Wally has a syndrome call Barth Syndrome.” I remember thinking Barth Syndrome? What the hell is that? Of course our luck would have it that it is super rare and not even the physicians on Wally’s case knew much about it. The whole conversation is sort of a blur. Questions were asked. We were told not to google. (Of course I did). Jen explained in detail all that she knew. For you guys reading this, I will post the definition that is found on the barth foundation website. “Barth syndrome a serious X-linked genetic disorder, primarily affecting males. It is caused by a mutation in the tafazzin gene, resulting in an inborn error of lipid metabolism.” A lot of people think Barth syndrome is a heart disorder. It is not. It is a disorder that affects the whole body as a whole. Cardiomyopathy is just one of the many symptoms of it. Other symptoms include muscle weakness, neutropenia, growth delay, exercise intolerance (due to fatigue) and cardiolipin abnormalities to just name a few.

So we had a diagnosis. But that’s really all we had. An answer but not really an answer. Jen and the doctors couldn’t really tell us what long term would look like for Wally’s life. They did know that some boys do well on medications and other boys do not. They said they would have a better understanding of what path Wally would take within the first year of his life. A lot of uncertainty but not only did we have an answer for Wally but after two and half years we finally had an answer for what happened to our Henry. Silver linings.

As much as I didn’t want there to be something wrong with Wally, I felt relief. Relief that I wasn’t crazy. That there actually was something wrong with him. Relief that we caught it in time. Relief that we could now start fighting for him to have the best possible life even with these circumstances. The days that followed were spent coming to terms with now being Barth parents and what that would mean going forward. It was spent researching, titrating meds and the oxygen, trying our best to explain it to friends and family, loving on Wally, questioning the what if’s, mourning the loss of Wally having a normal life, but most importantly thanking God he hadn’t taken Wally from us and thanking Henry for watching out for his little brother.

****Sorry it took me this long to get this post out. Wally got a double ear infection and it has been a rough week. Once again, thanks for reading, following our journey, and for loving us. Love you all! ❤️❤️❤️

More than RSV

The day I was told there was something wrong with Wally’s heart was the second hardest day of my life. The first… losing Henry. Most of you are probably wondering why I didn’t start with writing about Henry. He is where this all began. He made me a momma. To be honest…I’m just not quite ready to write about him just yet, to lose him all over again. I’ve even been putting off writing another part of our story because its so very hard to think back to those days, to look at the pictures, to feel the things I was feeling that day. It all seems like a blur now… but than… it was like my world was ending all over again.

To give a timeline, Wally was admitted for RSV on the early morning of the 5th of February. On February 7th he wasn’t making much progress. He had to be put on what is called heated high flow oxygen. Basically its moist oxygen to help break up the junk in his chest. He also wasn’t eating well (which he never had since the day he was born). We had such amazing doctors and nurses but one senior resident stood out among the most. He is the one who essentially saved Wally’s life. To this day I wish I would have gotten his name to thank him for saving our baby.

On the morning of the 7th he was doing his rounds. He discussed how Wally should be weaning off the oxygen by now, not adding heated high flow on day six of his symptoms first appearing. I remember he kept asking a lot of questions which made me nervous. The main question being, “Is there any history of cardiac problems in the family?” I kept replying “Besides heart disease on AJ’s side of the family. No. Nothing.” And than… I thought about Henry, how Henry passed. I remember my stomach dropping and feeling sick. He must have saw the look on my face because he asked “Did you think of something?” I told the story of Henry and how he passed and that the autopsy came back that he was in heart failure and had dilated cardiomyopathy. But I reassured him that all the doctors were 80% sure that it was a virus I had caught and passed on to Henry in utero. He didn’t look so convinced. I remember the look on his face, the concern, the worry. He was going to go discuss everything with his attending but that Wally would probably have a cardiac workup in the morning.. “just to make sure”. I remember thinking ok… nothing to worry about. Henry had a virus. A virus. There was no way Wally could have the same damn virus. If only it were a virus. Viruses can be fixed. Viruses can be cured. What Wally had… what Henry had.. was far worse.

The early morning of the 8th… The day our world would come tumbling down for a second time. The senior resident rounded extremely early along with the attending. The attending spent what seemed like hours looking over Wally. Listening to him… inspecting every inch of his body. I remember thinking this lady is weird. Why is she inspecting him like he is some sort of lab rat. She also asked “Has anyone ever mentioned anything to you about his ears?” His ears?! Kid has enough problem. What the hell is wrong with his ears? I remember saying that to her and we both laughed. But she said how his ears were misshaped and lower on his head than most peoples. The questions were swirling in my head? My mind going a mile a minute. What does this mean? Could there be something else wrong with him? No. No way. God wouldn’t do this to us after losing Henry. They came up with a plan to do a cardiac workup because of the history of Henry for just in case purposes. Ok.. I can handle just in case purposes. Everything will be fine and we will all be reassured. The senior resident explained that they would do an echo (ultrasound of the heart) and if something comes back abnormal a cardiologist would come to our room to explain the results. What worried me… the resident seemed nervous. The attending seemed nervous. Which in turn..made me nervous. AJ and I tried to pass the time by laughing about the ear thing and how crazy that attending sounded. The echo tech came and left. And we waited… It didn’t take long.

AJ was napping. Wally asleep. I decided to go to the vending machine to get a drink. As I was walking back I saw the senior resident, the attending, another resident, and a man in a white coat who I had never seen before standing outside our door putting on their gowns and masks (Wally was in isolation due to RSV). I cannot even describe the feelings that I felt in that moment. Another doctor. A cardiologist. Something was wrong. I remember stopping in the hall. Not being able to move. My heart started racing. They noticed me and said “Heres the mom now.” The new doctor asked me to wake up my husband and I did. I remember shaking, the tears already forming, my stomach churning as Wally snoozed in his bed 2 feet away. I sat in the chair, AJ standing next to me. As I looked up at all these doctors with tears in my eyes, I started begging, pleading, praying to God for it to not be true whatever it was. And than the “new doctor” spoke and my world as I knew it came crashing down for a second time.

“Walter’s heart isn’t functioning like it should.” Seven words. Seven words is all it took for me to let the tears fall. He kept talking, words like ejection fraction 35%, not sure what is causing the heart failure, want to run more tests, transferring to the PICU, maybe inserting a central venous catheter, starting cardiac medicines. I remember going and picking up Wally and just rocking him, crying into his shoulder. I remember squeezing AJs hand as I sobbed. The senior resident handing me tissues. All the doctors looking at us with the same sad face. I tried asking questions, not sure what those questions were, because I think my body just shut down. Heart failure! Our seven week old baby, like his brother who passed away, was in heart failure. None of it made any sense. We were just admitted for RSV. How could this be happening? What seemed like hours probably only lasted twenty minutes. We knew we had to call our parents. We knew we had to pack up our room because they would be transferring us to the Pediatric Intensive Care Unit. But AJ and I just stood there crying, hugging each other. I remember telling him, “I cannot lose him. I will not go through this again. I cannot. I won’t survive.” We took a minute. Gathered our composure, wiped our faces, and we started to move. I walked out of the room to call my mom and get some air. He stayed with Wally and called his mom. After telling our parents who said they were on their way, we started packing up our room.

Once in the PICU, and in our new room, a ton of new doctors swarmed us. Asking our history, etc etc. It was decided Wally didn’t need a central venous catheter (thank God). Blood work after blood work needed to be drawn. The genetic counselor would be by to talk to us. It was the most exhausting day. A lot of people. A lot of questions. No answers. But those answers would eventually come but it would take another five days for that answer to come. It would take a lot of blood work from Wally and us. It would take starting meds and titrating them. It would take a lot of sleepless nights, crying, praying, and bartering with God. We would have a lot of visitors, friends, family who rallied beside us. In the process of some very long days waiting for that answer, we would again be transferred to a different room. This time, down the hall, to the intermediate floor. And than we would sit, love on Wally as much as we could, and wait… again.

I never thought writing about our story would take a lot out of me emotionally. But it does. It’s one of the reason I have been writing it in parts and it takes me a couple days to finish. It’s hard for a person to look back on some of the worst days of their life. To re tell it is like reliving it. It’s hard. But it also gives me perspective. Where we have been. Where we are going. It is all apart of our journey. Wally’s Journey.

Thanks for reading. Stay tuned for the day I became a Barth momma.

Leading up to D (diagnosis) Day

I was telling my friend that this blogging thing is very over whelming. Mainly because there is so much to our history, to our story that I wasn’t quite sure what my next blog post should be. I decided that these posts don’t necessarily have to be in order of how they happened. This may be lengthy. So bare with me as I venture on to reliving one of the moments that changed all of our lives.

From the moment Wally was born, I always had a gut feeling that something was wrong with him. I didn’t know if I was being paranoid due to losing Henry (that story will come another day) or my gut was right. I learned to always go with my gut.

Wally wasn’t an easy newborn. Man, he still isn’t easy. But he never slept. Screamed all the time as if he was in pain. He was always stiff and never seemed to feel relaxed. He had these moments where his color seemed off and he would just look sick. We would take him to his pediatrician (who is amazing and has the most amazing staff) what seemed like every week. They knew our history and were always so kind. But they didn’t have an answer for what was wrong with him. Colic? Need a formula change? They probably thought I was nuts. But little did they know I kind of was.

I remember the first few weeks of his life, I was beyond exhausted. All I did was cry. I remember there were many times I would go into the shower, sit on the floor, and just cry and cry. What had I gotten in to? Why was this so hard? I was a nurse. Why couldn’t I figure out what was wrong with my baby? Maybe I wasn’t meant to be a mom. The depression over took me and I was not easy to be around. I remember feeling so isolated. So alone. I remember feeling angry that AJ got to go to work and have a break and I was stuck by myself. Not knowing how to comfort this sweet little boy God gave me. I would cry myself to sleep just staring at him when he did sleep. I would always think besides losing Henry this was the hardest thing I had ever gone through. I don’t even think the people closest to me realized how bad I struggled. What should have been one of the greatest times of my life…it was actually one of the darkest times. Little did I know at the time that things would get worse.

The Friday before super bowl Sunday Wally woke up sounding sick. He has laryngomalacia (a floppy airway) which makes him a noisy breather. So it was hard for me to distinguish whether he was wheezing or if it was just his malacia. I took him to his pediatrician. They checked his oxygen. It was fine. They kept listening to his lungs over and over trying to distinguish if he was wheezy or not. They finally decided he was fine. To watch him over the weekend and to call with anymore problems. Well on Saturday he woke up with a croup sounding cough. I took him to a prompt care. Of course he wouldn’t cough while there 🙄🙄. They said he was fine. I remember that night I just had this doom and gloom feeling. That something bad was going to happen. That things were not ok. Well it’s because they weren’t.

That Sunday, February 4th, super bowl Sunday. We went to my parents for a super bowl party since my dad is a huge patriots fan! I remember sitting in my moms recliner, holding Wally, looking at AJ telling him with my eyes something wasn’t right. Wally was lethargic. His color looked off. His cough was getting worse. He was also retracting more than he usually did. He sounded and just looked miserable. He wouldn’t eat. But no fever and was still having wet diapers. I took him into my moms bathroom and ran the shower to steam up the room. Do you ever have a moment that has happened in your life that you know you’ll never forget for as long as you live? Well as I was swaying Wally who was just in a diaper, singing to him, I looked down with tears in my eyes into his baby blue eyes staring back at me. He looked up at me with this glazed look, almost like he was telling me, “Mom I’m not ok. It’s time to go to the hospital.” It was the most surreal moment of my life, a moment I’ll never forget. I turned off the shower. Walked out to the living room and got AJ. He told me to call the peds after hours. I did. And they told me to go straight to the hospital. I remember packing up Wally crying and feeling like I could be sick.

We arrived at OSF ED around 730 where they checked us in and took us straight back to a room. They ran some tests, hooked Wally up to the monitor, and we waited. And waited. And waited. We were all exhausted. Being in a small and hot room with a sick 7 week old was not fun. But finally around 1 am the test came back that he had RSV and we were being admitted. As much as I hated that he was sick, I was so glad I wasn’t crazy and he was going to get the help he needed. We finally got to the general peds floor around 2am. It was explained that we’d probably be there a couple days, he was put on some oxygen, and we all tried to sleep.

I don’t really remember much of the days after that night, leading up to what I call D Day (diagnosis day). What I do remember is how exhausted we all were. And how sick Wally really was. I remember feeling terrified, yet calm, that we had these amazing nurses and doctors looking after our baby. The monitor that he was hooked up to, as annoying as it was with the constant beeping, was a relief. To be able to watch his stats gave me peace of mind.

If only I would have known than that my sweet little baby boy contracting RSV would save his life. That RSV was the least of our worries. I wish I could have prepared myself for what was to come next…. but looking back…. Nothing could have prepared me for what would turn out to be the second worst day of my life.