For all those struggling in silence..You are not alone

“Postpartum depression makes a woman feel like she is in the grip of something dreaded and dark, and it’s scary. . . but she’s likely ashamed to admit it because she can’t explain it!”                                                                                                    – Judy Dippel

As I sit here, having so much on my mind, I find it hard to find the words. This post isn’t per say about Barth Syndrome. But it is a topic that has been weighing on my heart a lot lately. A topic that I think is extremely important and needs to be addressed. I hope if you get anything out of this post, especially you new mothers, it’s that you are not alone.

My whole life, all I’ve ever wanted was to get married and have babies. As a little girl I would fantasize about who I would marry. What my kids would look like. What a joy it would be to raise little people who look and act like me. What I didn’t realize (nor should I have) was how it would actually feel. I was talking to a friend tonight, and we were talking about our kids and how we couldn’t believe Wally is going to be one in just a few short weeks. And it got me thinking back to a year ago. I started feeling all those same feelings that plagued me for the first six months of Wally’s life. And I realized… as hard as it is to admit, how I wish it weren’t true, or that it didn’t happen, I wanted to share my story, in the hopes of helping someone else.

When Wally was born, he spent almost a week in the special care nursery for blood sugar and jaundice issues. That whole week all I wanted was to bring my baby home. I barely slept in the hospital because I wanted to be in the nursery with him all the time. I never wanted to leave his side. I was on a high and I was just so very thankful he was ok. And than we came home. And my world as I knew it would never be the same.

It’s crazy that I am a post-partum nurse. I know what depression and anxiety is. I’ve researched and learned about post-partum depression (PPD). I’ve counseled new moms before they take their babies home on the signs and symptoms of PPD and when to get help. And yet… I didn’t realize until recently that I too suffered from PPD. But why? Is it because there is such a stigma around PPD and mental health in general, that I was afraid to admit it? That I refused to see it? This is an extremely important topic and yet no one is or wants to talk about it.

Well I can tell you why I haven’t wanted to talk about it… Because talking about it, and admitting it, makes it real. And the guilt, the fear, the sadness, that comes along with that, well it’s suffocating. But I’ve realized, no matter how hard as it is, I need to talk about it. WE need to talk about it. Because there are so many mothers out there that need our help. No one should suffer alone. NO ONE! So if you’re a new mother or even an experienced mother, please keep reading.

Wally was born two weeks before Christmas. One of those weeks we spent in the hospital. When we came home, I was coming home on little sleep with a little creature that I knew nothing about. AJ hadn’t gone back to work yet, but he would and than it would be me and Wally, all by ourselves. At the time AJ worked second shift. So he would work 2-10pm (he now works third shift). The first week home I can barely remember. It was all a blur. Did I even eat? Sleep? Shower? Who knows. But what I do remember is how much milk I pumped that Wally would never eat and how much I cried. Little did I know the tears would keep falling, and wouldn’t stop for many months.

When Christmas Eve finally came around my mom came down with Influenza. And AJ and I decided that with a newborn baby it was best that we stay home and shelter Wally from all the sicknesses that could be going around. AJ worked Christmas Eve and Christmas Day. So both days were spent taking care of a baby that was becoming increasingly difficult. He never slept. He fussed non stop. He had troubles with pooping. My day consisted of feeding, changing diapers, and begging and wishing my baby would sleep. I was a zombie going through the motions. And I was alone… on Christmas. My dad, brother, and grandparents came over for Christmas lunch and I still felt alone. I cannot even begin to tell you how much I cried, how alone I felt, how in all honesty, how much I just didn’t even want to be on this earth anymore. How scary is that? How messed up is that? Here I am so blessed with this beautiful baby and all I could do was cry and wish I would die as I rocked my newborn son in his nursery. As I sit here and write this, I cry some more because it makes me so terribly sad.

As I was talking to my friend tonight, I admitted to her that with Wally’s birthday coming up and the holidays I find myself feeling sad. I look back on the photos and the videos and I cry because I remember exactly how I was feeling when I took those photos and videos. That I wanted to die. I didn’t want to feel sad anymore. The sadness that would steal my breath away and consume me into a puddle in the shower. That my husband knew nothing about. Some days felt so long, that the pain would never end. But as an outsider looking in… you would never know. Because I would put on a brave smile. Act like everything was ok. When in fact… on the inside I was screaming. Screaming for someone to notice. Screaming for someone to save me. It was the most depressing, confusing time in my life. I would enterally fight with myself daily because I couldn’t understand why I was feeling the way I was feeling. I loved Wally. I adored him. My whole world revolved around him and yet here I was wishing I would die. None of it made sense. And I wanted to pull my hair out, out of frustration. Because after Henry died I would beg God to bring him back. That I just wanted my baby. And now here I was blessed with Wally, and it felt like I was grieving all over again. I felt worthless. I felt like a terrible mom. I felt like I wasn’t doing something right, because he wouldn’t sleep, he wouldn’t eat. What good was I? There were many times that I felt Wally.. and AJ would be better off without me. Because not only was I suffering… but my marriage was as well. This would go on for many months… I wouldn’t get help because well.. Wally would eventually be hospitalized for almost a month. I would tell myself I just didn’t have the time when all I could do was worry about Wally and making sure he was ok. Until finally, sometime after the dust had settled, and we got through his g-tube surgery, I finally admitted to myself that I needed help and I went to talk to my amazing doctor.

I have to admit…I still struggle… but I am luckily doing better on medicine. And I am starting counseling on the 3rd of December. But now, having experienced all of that…when I see that someone on Facebook has had their baby, I cringe. I pray and hope they do not suffer like I did. I also find myself grieving. Grieving for the time that I should have been enjoying with my newborn baby, yet I feel cheated instead. That time, those moments were stripped from me. I find myself angry, wishing I could get a do over. I stare at my beautiful baby boy sleeping on the monitor and tears roll down my face because I would give anything to go back and relive those moments. Do it all differently. Because even with the dark moments, there were the first smiles, the first laugh, the first words, and my heart feels like it could explode from the love and joy that I feel having Wally. PPD is real and it sucks. It takes away a part of yourself. It takes away your ability to enjoy life, to enjoy this beautiful baby that God created.

For you moms out there reading this….. you are not alone. You have nothing to be ashamed of. Do not do what I did and suffer in silence. Reach out. Get help. Even if it is a complete stranger. I wish I would have gotten help a lot sooner than I did. I think the best advice someone could have given me back than was to keep going. Do not give up. Take minute by minute. Hour by hour. Keep breathing. Get out. Take a break. Have someone watch the baby while you sleep. I know it is hard momma but trust me, it will be worth it. Because as hard as it is to think back to a year ago, I am so glad I kept going. I am so glad I decided to live. Seeing Wally and who he has become, his outgoing personality, his smile when I walk in to a room, the kisses he gives, the laughs, the cuddles, watching my husband with him, well lets just say all the pain and sadness you felt than, will soon be replaced with all of this. All you have to do is keep breathing and keep going.

Love and prayers always.

Wally’s Momma 💕💕💕

“Being a new mother is supposed to be the happiest time of your life, but postpartum depression and anxiety strip that away for a time, but trust that it will not last forever.”                                                                                                               – Judy Dippel

Our Sweet Henry Anthony

November 13, 2015 our world as we knew it would never be the same. It was the day where our world came crashing down. It was the day we unexpectedly said hello and goodbye to our beautiful son Henry Anthony Bastian.

Although this blog is mostly about Wally and his battle with Barth Syndrome. Our story with Barth syndrome actually began when I got pregnant with our first son Henry. We just didn’t know it and wouldn’t know or understand until three months after Wally was born.

Today would have been Henry’s third birthday… Three whole years without my baby. Although I’ve cried many tears today, I thought what better way to honor him than to share his story with all of you. Beware. It’s long. And it’s not full of rainbows and sunshine. Our close friends and family know the story of Henry. But I’ve never actually written it out for the world to see. I’ll start from the beginning.

2015 was an eventful year to say the least. I was a sophomore in college pursing my nursing degree. On January 13th (10 months to the day Henry would be born) my real dad passed away from cancer. In February AJs grandpa passed away. Two weeks later I found out I was pregnant. I have a condition called PCOS so for me to become pregnant without even trying was a huge shock! Although I was scared out of my mind. I mean I was still in nursing school!! How could I handle a baby and school? But at the same time I was thrilled. And determined to make it work. We called Henry our sweet little miracle.

Looking back, I guess you could say I should have knew something was wrong. Through out my whole pregnancy I had this doom and gloom feeling. This dark thunderous cloud hanging over me. I would say something isn’t right. He doesn’t move much. I have this terrible feeling somethings wrong. People and my doctor would say, “it’s first time nerves.” “He’s fine.” “It’ll be ok”. But he wasn’t fine and it would never be ok and forever till this day I wish I would have pushed harder. Done something. Followed my gut. But the what if’s get me nowhere so I try not to dwell on it.

On November 11th I went in for my post due date check. I was 40 weeks and 3 days. They did an NST. Which is where they hook you up to a monitor to monitor the babies heart rate. Well they didn’t like what they saw, so they took me back for a BPP. A BPP is a bio physical profile which is basically a sono with things they have to observe the baby doing and it’s scored. I’ll never forget the sono tech did Henry’s BPP twice. She had this look on her face that seemed unsure. I remember feeling anxious and asking her if everything was ok. She said it was. But I wasn’t convinced. The midwife came in explaining he looked perfect. That he was just a lazy baby and running out of room. I remember walking out of that appointment feeling defeated. I remember calling my husband and my mom crying because something felt off. I felt like I wasn’t being heard. I honestly felt crazy and paranoid. But I kept swimming and tried to stay positive.

November 12th–40 weeks 4 days. All day I felt off. I felt anxious. On the verge of a panic attack. I was extremely hot. Shaky. I hadn’t felt Henry move much at all, all day. But I went out to dinner with some friends from nursing school to hopefully distract myself. The whole dinner I was a mess. A nervous, anxious mess. I told my friends I think my blood pressure is high. I think they thought I was crazy 🤷🏻‍♀️. I went home, got on my exercise ball, and watched Greys Anatomy. After Greys I couldn’t take the way I was feeling anymore. With my blood pressure cuff and my husbands help I took my blood pressure. It was high. 160s over 90s I believe. I immediately began to panic and went to CVS to check it on their machine. Unfortunately it showed the same results.

Now mind you it’s like 9pm at night. I seriously felt like I was spiraling out of control. I went home took a shower to try and relax. Called my doctors office. I won’t go in to details about that phone call because I don’t want to throw out names or disrespect anyone. But I can and will say this. I wasn’t being heard. She made me feel like an idiot. I was told to lay down and do my kick counts. Which I had already done. I was advised that if I felt like it, I could come in. After going back and forth, and discussing with my mom and AJ we decided I needed to go. So off to the hospital we went at approximately 11pm.

After arriving at the hospital everything seemed like it happened so fast. They hooked me up to the monitors and you could tell they didn’t like what they saw. Henry’s heart had no variability on the strip. The same thing it showed the day before. No variability means his heart rate didn’t go up or down. It just stayed at the same number. They gave me oxygen. Juice. Crackers. Trying to see if he would move or show any kind of excitement. He didn’t… the doctor on call decided to admit me. Finally! Someone was listening.

The doctor did a sono and saw that Henry had fluid around his liver and that I was right he should be making bigger movements. I told him that the midwife said he was just a lazy baby and running out of room. He told me to never let anyone tell me that a baby is lazy. There is no such thing. I began to start panicking. There was something wrong. Like really wrong. I was trying my best to not cry. But I made AJ call my mom and tell her to get here. The doctor on call for the hospital called the doctor who was on call for my doctors office. And thank the lord it was who it was. Dr. Bochantin is soo amazing. And she not only would deliver Henry. But Wally as well.

The memories are a bit hazy. But when she got there she started talking csection. And that we needed to get Henry out to assess further what was going on. I opted to try a contraction stress first. It’s where they put me through three contractions to see if Henry could handle it. Well his strip showed the same. No variability in his heart rate. At this time my mom and dad showed up and Dr. B encouraged us that we needed to do a csection and we needed to do it now. We agreed. With tears in my eyes. A lump in my throat. I kissed my mom goodbye and off to the OR we went.

It’s crazy what you remember when you go through a trauma. I remember the smell of the OR. The lights. The sounds. I remember how nervous I was. How scared I was. I just kept praying over and over again. Squeezing AJs hand. Looking at him for reassurance that everything was going to be ok. At 4:51am in November 13th Henry Anthony Bastian was born. He didn’t cry. I kept waiting for that cry. Praying to God, “please let him cry. Let him breathe. Let him live.” That cry never came. I vaguely remember hearing a whimper. I also remember the nurses and neonatologist saying “Come on buddy, come on.” I remember looking over and seeing his foot move. But still no cry. I looked at AJ and said somethings wrong. He should be crying by now. He kisses my forehead and said he’s ok babe. He’ll be ok. But I knew in my heart. He wasn’t ok.

It seemed like hours but maybe only a few minutes. They scooped up Henry and took AJ with them to the nursery. You could tell AJ didn’t want to leave me but I reassured him that I would be fine. Henry needed him. And than I was alone. Alone while they stitched me up. Alone in my thoughts not knowing what was happening. In recovery I made my amazing nurse, actually insisted, that she get my mom and find out what was going on. When my mom walked in, my heart sank. She was crying. And she said, “I’m not sure. But it’s not good Kelsey.” Another nurse followed her in and said they were doing chest compressions and trying to stabilize him. Chest compressions!? That means he coded. His heart isn’t pumping. I started shaking. My mind beginning to shut down. I didn’t realize it than but my body was preparing itself for the earth shattering news I was about to be told.

Not too long after… they wheeled me into the nursery. There was people everywhere. A stretcher and the transfer team from the children’s hospital that was right next door (they were going to transfer Henry once they got him stable, but he never stabilized). Doctors. Nurses. But I remember the first thing I saw was AJ. In the back of the nursery. On his knees with his head in his moms lap crying. At that moment I shut down. My body literally shut down. I barely heard the neonatologist when she said “we did everything we could. We aren’t sure what happened. We’d like to do an autopsy. We’re so sorry.” And I started screaming. Screaming from the heart break. The pain. The confusion. Screaming when Aj came over and held me. Screaming as they wheeled me out of the nursery. I just kept screaming.

The screaming and the crying came in waves. And it would for months to come along with the nightmares. We did get to hold Henry. We got to spend some time with him. Take photos. Family and friends came. I barely remember it. I was so in shock. High on drugs. And so unbelievably exhausted I could hardly keep my eyes open. But I couldn’t sleep either. Luckily they eventually prescribed be Ambien.

We eventually knew we had to say goodbye to Henry for the last time. I cannot even begin to describe that feeling. Saying goodbye to your child. Never knowing when you’ll see them again. It was the hardest thing I’ve ever done.

The days. Weeks. Months to follow were by far the worst days of my life. Luckily our parents took over planning the funeral. The day we buried our son a little bit of my soul was buried along with him. For two weeks Aj and I did nothing but eat. Sleep (ambien helped with that). Lay around. We were like zombies. Going through the motions. But the world kept turning. And after two weeks AJ went back to work and I went back to school to finish the semester. I needed to keep busy. I was determined to finish nursing school because I knew that’s what Henry would have wanted.

The autopsy that we eventually received showed that Henry died of heart failure. His heart was four times the size that it should have been. How my precious doctors office didn’t catch it is still a question I have to this day. He also had hydrops (fluid around his organs). But no one could tell us why. I switched doctors to the doctor (Dr. B) who delivered Henry. She was absolutely amazing. The only thing she could say was that maybe I had caught a virus and passed it to him. It would remain a mystery for two years until our sweet Wally would come into the world.

And that is the full story of our sweet Henry. I’m sure there are things I accidentally left out. As time passes I forget more and more. I can say this. The doctors and nurses that were there and helped that day will forever have a special place in my heart. They were amazing. So kind. So compassionate. And eventually (once I passed nursing school) would become my co workers who I will forever treasure. They would also be the ones to be there when Wally would come in this world! Something that will forever remain special to me.

Now that I know I’m a carrier of the gene mutation that causes Barth syndrome it’s most likely Henry had Barth Syndrome which caused his heart to fail. Obviously we don’t know for sure because we didn’t have his DNA tested. But it’s pretty clear what happened. After two years we finally have an answer. Does it make it easier? Absolutely not. But after Henry and now Wally it’s put a fire in us to find a damn cure for Barth Syndrome that’s not only taken one of our boys but other families boys as well.

It’s not fair. But life isn’t fair. And all the bad that came with losing, also came good. He taught us to love unconditionally. To never take anything for granted. He taught us life is too short to worry about the petty stuff. What could have ruined our marriage actually did the exact opposite. Henry’s death brought AJ and I closer together. Closer than we’ve ever been. I miss him so much. There isn’t a day that goes by that I don’t think of him or wish he were here. But I know I’ll see him again some day. And I’m so thankful Wally has his big brother as a guardian angel. Because with this stupid disease, Wally needs all the angels he can get. And he may just have the best one!

If you’ve made it this far…Thank you for reading. Today’s been hard. This day is always hard. But all the love and support definitely makes it a littler easier. We love you all!!

Happy 3rd Birthday Henry! We love you so much and will see you soon baby boy!

—Henry and Wally’s momma 💕💕💕

Ps. if you want to honor Henry and Wally be sure to visit the link below to buy a T-shirt or sweatshirt and all the proceeds go directly to the Barth foundation in hopes of finding a cure!! Love and prayers to you all!

We need a cure! We need your help! 💕💕

And here it is!! In honor of our sweet Henry’s Birthday the 13th of this month and Wally’s birthday December 11th, please, please, visit the link, buy a super cool sweatshirt and become one of Wally’s Warriors!! All proceeds go directly to the Barth Foundation in hopes of finding a cure! You have two weeks!! Thank you!! We love you all and appreciate all the love and support!!

Our trip to Baltimore and test results

It’s been awhile since I shared what’s been going on in our wonderful world of Wally. I wish I could say it’s because we have nothing new to share. But you all know us better than that 😂😂. There’s always something with our Wally. I haven’t shared because honestly, it’s been such a crazy and exhausting month not even sure where to start. There are so many emotions running through me that I am still processing all the information and answers we have gained. But I shall do my best!

AJ and I both work full time. Wally has had surgery and undergone two big tests! We’ve had pictures, Halloween festivities, anniversaries, a wedding, birthdays, a fall party, we each have gotten sick, and we flew out to Baltimore all within a month. (See why I’m exhausted? 😴😴) But alas we survived!! For those of you that don’t know Wally had ear tubes put in and had his adenoids taken out. He always seems to recover slower than most kids so it took about two weeks for him to feel better, poor guy. He was supposed to have a swallow study in the middle of October but the little stinker refused to drink the dye so we weren’t able to do it.

He than had a sleep study at the end of October. And that was really rough. I think I cried more than he did 🤦🏻‍♀️. The six hours we were there they got 2.5 hours of sleep which I guess all they need is 2 hours to diagnose. So thank goodness! We finally, after waiting for what seemed like forever, got the results today. Moderate obstructive sleep apnea 😔😔. I had a feeling it was going to show something but I guess I didn’t expect the results to show a moderate case. The nurse actually said it was probably severe but the adenoid removal probably helped some. The plan is to put him on an 1/8th of liter of oxygen at night and to repeat the sleep study in three to four months. 😩😩. If that doesn’t help we go back to ENT to discuss our options. I know what you’re thinking. Finally! Some answers. And yes. I am happy that we finally have an answer after 11 months of poor sleep. But I find myself feeling sad. My heart hurts guys. This brave, strong child of ours, has been through so much in his short little life. It’s just another thing to add to the list. And it’s scary to be honest. To know your child stops breathing and there’s nothing you can do about it….Not exactly sure how I get any sleep at night. We shall see how the oxygen goes. I hope he won’t care that he has a thing in his nose, but if you know Wally, he’s stubborn and strong willed. Wish us luck 😂😂.

And finally our trip to Baltimore!! The only Barth Syndrome clinic in the WORLD is held quarterly in Baltimore Maryland. Well we decided in September we were making the trip to Baltimore to see and establish with doctors who know Barth Syndrome! They hold the clinic at the Kennedy Krieger Institute (which is a part of John Hopkins)! We were very lucky they squeezed us in and that we could come up with the funds to go! It was an exhausting trip in the sense that we were busy. We drove up to Chicago Sunday. Flew out Monday. The clinic was held all day Tuesday. And we flew back to Chicago and drove home today (Wednesday). On top of that Wally is cutting two teeth and he has a cold. Exhausted is an understatement! But we’re feeling very happy that we got to go! It was so so worth it. Wally was able to see the nutritionist, physical therapy, hematology, cardiology, a metabolic doctor, and we spoke to genetics! I’m happy to report Wallys heart function is still in normal range!! 🙌🙌. Physical therapy is impressed with what he is able to do. Dr. Vernon (metabolic doctor) did recommend a dilated eye test for Wally to determine if he has fluid on his brain or behind his eyes. Why you ask? Because he has a big head 🤦🏻‍♀️😂😂. She said it could be because he takes after me with a big head 🤷🏻‍♀️🤷🏻‍♀️, but it’s something just to make sure. And it’s better than putting Wally through an MRI! Overall, the doctors we saw are impressed and satisfied with the care Wally is getting back here in Peoria!! It’s such a relief to know we are doing exactly what we should be doing. And that the doctors there and our doctors here are in agreement with Wallys care. They said he looks great. And they couldn’t believe how busy and attentive he was. He literally soaks in every aspect of a room. He is the nosiest 10 month old I’ve ever met. But he charms and smiles at everyone he comes across. We couldn’t love him more.

We did get to meet some other Barth families and thanks to the Woodwards for organizing a dinner. It was great to see them and their boys are the cutest! Wish we all lived closer together!! Being around our Barth family always brings this feeling of peace and comfort over me. In a world where it’s always something and you feel like you could lose control, they get it. They understand. We are so blessed and thankful for the Barth Foundation. For bringing us all together!

So Wally warriors, that’s where we are at. It’s been a long and busy month. And honestly, so glad it’s over 😂😂. Now we wait for the oxygen. Hopefully he will tolerate it. I will be running a T-shirt fundraiser in honor of Wally and Henry’s birthdays. Speaking of, I need to print out and send out his birthday invitations 😱😱!! (Seriously blows my mind he’s going to be one!) Henry’s birthday is also next week. Crazy to think he would have been three. I’ve been so busy that I haven’t had much time to think about it and that in itself makes me sad. I’ll be writing a whole post on our sweet Henry. Stay tuned. This time of year is always hard for us. Hug your babies tight.

Also on the do list is my annual review for one of my jobs (I’m getting there Corrie 😬). Christmas shopping. Birthday shopping. And cannot forget thanksgiving is right around the corner! Whew. I’m exhausted just thinking about it all. I’m telling you, it never ends. I need a vacation. Or a bottle of wine. Either one will do! 😂😂.

Thanks for reading!! Love and prayers to you all!

Wally’s momma 💕💕

Our visit with the Pulmonologist and lab results

This may be my longest post yet. Bare with me. 😬😬

By now everyone who reads my blog knows that Mr. Wally J has never slept well. Ever. Nine long months of little sleep for both Wally and I. We received a referral from our pediatrician for a Dr. Mannaa (Pulmonologist who specializes in sleep) back in June to inquire about a sleep study. But unfortunately he is a very busy man and they could not get us in until today. After the failed Ph test (failed in my mind) I almost cancelled this appointment. Why you ask? Because I have been throwing myself a pity party. And quite honestly I am feeling pretty defeated. I am so afraid that I am going to continue to put Wally through these tests only for them to come back normal. I have been feeling pretty crazy and I wasn’t sure if he even really needed to see a pulmonologist. But I decided last night that no harm could come from hearing Dr. Mannaa out, to see what he had to say. So off to the appointment we went!

If anyone of you in our area, reading my blog needs to have a child seen by a pulmonologist, I definitely recommend Dr. Mannaa. He was so personable and definitely knew what he was talking about. He took the time before our appointment to go over Wally’s (rather lengthy) history, researched Barth Syndrome in detail, and already had an idea of what he wanted to see done before he even glanced at Wally. He made me feel comfortable, not crazy, and agreed that something is not right with his sleeping. He promised me that he would do everything in his power to get to the root of Wally’s sleeping issue. But not only that, he wants to look in to other things as well!

Little back story. Barth boys tend to have very distinctive facial features. Well our ENT (Dr. Gootee) noticed that Wally’s chin is a bit recessed. Meaning it sits farther back on his face than most chins. (I posted a side picture below to help visualize what I am talking about.)😊

Dr. Mannaa also noticed this and said when a person sleeps all your muscles relax, even your tongue. And because Wally’s chin sits so far back hes wondering when he is sleeping if his tongue relaxes over his airway causing obstruction. Another important thing he pointed out was that due to Wally’s hypotonia (low muscle tone) he’s wondering if that is affecting his sleep at all. (Meaning when he’s in a deep sleep, with his muscles really relaxed, he doesn’t have the muscle strength to circulate the carbon dioxide out of his lungs). If this is happening he could startle awake, kick his legs, wake up screaming (everything he is doing) because that wakes the muscles up and basically says, “hey! You need more oxygen man!” 😂😂. Another sign of this is sweating!! (Wally has never not woken up drenched in sweat).

So what do we do? Well he wants a swallow study done (Wally’s never had one) to get a good look at what’s happening when he’s eating and make sure everything looks ok. He also wants a sleep study ASAP. These tests will be schedule next week hopefully for sometime in October. He also talked about Wally’s risk for infection. And with flu and pneumonia season fast approaching, and because of his hypotonia, he wants Wally to have a vest. The goal is that he would wear this vest (that shakes) when he sounds congested or wheezy to help break mucous up. By breaking up the mucous it will be easier for him to cough, and the end goal is to hopefully prevent pneumonia. Overall I feel good about the appointment and that we have a game plan.

Whew. 😪. The appointment was a lot. And kind of overwhelming. But FINALLY a doctor made me feel that I wasn’t being crazy! He is concerned! And that puts my mind at ease that these tests are necessary. So yes… more tests. But hopefully we can get them done as soon as possible and get answers. I also want and need to clarify…. I do not want there to be anything wrong with our sweet Wally J. But…obviously there is something troubling him. And all I want is answers so we can find a solution. He needs to sleep to rest his heart. He needs to sleep to keep from getting sick. He needs to sleep to grow. I will do everything in my power to make sure he can get the sleep he needs.

So that’s where we are at. We also had a CBC drawn yesterday due to low grade fevers, he’s been pale, and pulling at his ears (left ear drum was red. But not infected. So at that time yesterday we decided to wait and see and not move forward with antibiotics). Well… we got those results back today thanks to our amazing friend Cassie. His white blood cell count was normal. Even better than last weeks count (yes we had his blood drawn last week too. Trying to get a look at how he trends). But, his neutrophil count was even lower than last week. Still in the 900s. But definitely lower. What does this mean? Well it doesn’t scream DANGER but it does put him in the moderate risk for infection category. 😔😔. Wally’s ANC (absolute neutrophil count) has never been below a 1000 (that we know of) and now the past two weeks he’s been steady in the 900s. Well Dr. T, even though he doesn’t currently have an infection, wants to do a round of amoxicillin as a precautionary. Blah! We hate antibiotics. But we hate infections and hospitals more. So we are going to do the round of antibiotics and hopefully Wally doesn’t catch anything. This is why it’s sooo important to vaccinate and keep your children home when they are sick! Wally is vaccinated, we take all the precautions, but he can still get very sick. And unfortunately a common cold for him could land him in the hospital. And as much as we love our OSF nurses 😉 we do not want to go back to the hospital.

Sooo this was wayyyy longer than I anticipated! 🤷🏻‍♀️ But this is what’s going on in our world! More tests. More antibiotics. But hopefully soon… answers.

If you’ve made it this far… thanks for reading. Thanks for loving us! We wouldn’t survive this crazy life without our Wally warriors!

Love to you all!

Wally’s momma 💕💕

Where do we go from here?

Frustration. Sadness. Confusion. These are only some of the emotions I am feeling today. It has been a long weekend and an even longer start to the week. Wally has been screaming in pain, super whiny, clingy, and we have no answers to show for it. I spent all day yesterday on the phone with his care team trying to figure out if his behavior was normal teething behavior or if something else was going on. Is it teething? Maybe, he is cutting a tooth. But is it something else? Honestly at this point I do not know if we will ever have the answer to that. Because… another test done and nothing to show for it.

We made an appointment with the GI yesterday, convinced that the results from his Ph study were going to come back that he has severe reflux. If it could be anything we wanted it to be that. We really just wanted answers for why our child doesn’t sleep and has days where all he does is scream and cry. But once again we were left feeling defeated. The study came back that he was not refluxing. The only thing it really showed was that he swallowed air 222 times in a 24 hour period. Ok, what does this mean? To be honest I am not sure. Dr. Khaled can be hard to understand at times, and I do feel like there is a language barrier. When he was explaining it to me I only got bits and pieces. Obviously swallowing that much air can cause discomfort, especially if it goes beyond the stomach and in to the intestines. But it is the question of why is he swallowing that much air that we do not know or understand. Dr. Khaled’s solutions were to start another probiotic and to vent the g-tube more (We’ve tried a million probiotics and we vent the g tube often!) 😢😢. When I asked him why does table food cause him so much discomfort than? His response was to do blood work and determine if he has any food allergies. Another test to put my baby through that will probably come back normal as well.

I cannot even begin to describe the frustration that AJ and I feel. Here I am putting my sweet nine month old through test after test. Tests that my husband does not even want to do. And they all come back normal! We have nothing to show for it. It was all for nothing. I am exhausted. Run down. Drained-emotionally, physically, and mentally. And if one more person says, “He has come such a long way. He will get there”, I may scream. It has been nine months of these GI issues and no sleep and no one can tell us why. I am starting to think maybe I am just crazy. Like, what am I doing? But these doctors and people who like to put their two cents in, do not lose sleep at night. They do not have to sit there watching your baby scream in pain and there is nothing you can do about it. They do not have to sit back and watch their baby suffer and realize there is nothing they can do about it. You see… they, like all of you, get to see the happy, smiley, Wally. No one understands. No one gets it. And it is frustrating and maddening to the point I have cried a lot in the past two days.

Usually I try to think positive. And maintain the “This too shall pass” outlook on life, but you can only take so much before you break. I am close to that breaking point. I am just not sure where we go from here. I’m second guessing every decision I have ever made for Wally. I feel like (excuse my language) a shitty mother. Moving forward, I do not know what is the best thing for him. “Follow your gut” is what people say. Well my gut so far, has led me to the place we are at now, and look where that has gotten us. Nowhere. All I can do is keep praying and hopefully God will hear my prayers.

Wally’s Momma 💕💕

Neutropenia and our visit with Dr. T

A lot of you are aware that we had our appointment with the hematologist last week. I know some of you are probably wondering how it went. I unfortunately wasn’t able to be there in person due to having to work. But luckily I have a wonderful husband who took Wally and I was able to be on speaker phone.

I may be repeating myself, but for those of you that do not know Wally is very high risk for infection and can become neutropenic very quickly due to his Barth Syndrome. Neutropenia is defined as, “A condition associated with a low white blood cell count. These types of white blood cells, called neutrophils, are made in the bone marrow and fight off infections. If there is a decrease in neutrophil production, an accelerated usage of neutrophils, or an increased destruction of neutrophils, the risk of infection increases, particularly those caused by bacteria or fungi.” We inquired an appointment with a hematologist so Wally could be followed more closely. Something as simple as a cold, or a common virus that most children get over quickly, could mean a hospital stay or even worse for a boy like Wally.

We had heard chatter that Dr. Tarantino was the best hematologist in the area. Luckily because of great connections we were able to get an appointment sooner rather than later. I was kind of sad I missed meeting him in person but let me tell you, the chatter we had heard was correct. We were not disappointed. The minute Dr. T walked in the room he sounded like a man who was very intelligent and knew what he was doing. Not only that but he was really interested and even seemed enthusiastic about learning more about Barth Syndrome. He spoke a lot about what he researched and learned about Barth Syndrome thus far and that makes our hearts sing! It is so refreshing walking into a new doctors appointment and not having to catch a physician up to speed on what is Barth Syndrome. To us it shows he’s interested, that he cares, that he’ll do anything he’s physically capable of for Wally. And that’s all we as parents can ask and hope for.

For kids that can become neutropenic there is a threshold so to say, on when you need to take them to the hospital. Dr. T talked a lot about this threshold and what he would like to see happen. Most of the time, we can tell when Wally is getting sick. He sleeps better 🙄🙄. He’s quiet. Almost like he’s in a daze. Dr. T would like us to call him when we notice this so we can get Wally in for a blood draw to have his neutrophils checked. We know Wally’s neutrophils have been low before but they have not been in the dangerous range thank the lord! But just because it has not happened yet…. does not mean it never will. Like Shelley says, neutropenia in Barth boys can rear it’s ugly head at any moment, and the best thing we can do is be prepared.

One thing that we were expecting to happen was for Wally to start weekly blood draws to obtain a pattern of his neutrophil count. But Dr T does not think at this time that we need to check Wally’s blood every week. He says he does not want to put Wally through that. In the near future that may be something we do. Instead, he would like to gather data by us observing his symptoms, keeping a journal, and getting Wally’s blood drawn when he seems “off”. If Wally were to spike a fever of 100.4 or over we are to call Dr. T and most likely to the hospital we go. The goal is obtain blood cultures and a complete blood count when this happens to make sure Wally has the neutrophils to fight off whatever infection he has acquired. If there were ever a time where his neutrophils were too low, or Dr. T thought it was necessary we would be admitted to the hospital for further work up and possibly preventative antibiotics.

What really surprised us about Dr. T is his willingness to want to learn  more. And the research he wants to conduct. Something that I found interesting and had never thought of until the conversation with him, is the immune system as a whole for a child like Wally. A lot of the literature and research that has been done is about the neutrophils. Dr. T is interested in digging deeper in to the immune system of a Barth child. Wally finally got caught up on all his vaccines the day of his appointment with Dr. T and because the timing worked out so well, he would like to in six to eight weeks check Wally’s blood to see how is immune system has responded to the vaccines. If his body has not taken to the vaccines, not sure where we go from there but an infectious disease specialist may be consulted.

The scare of not having the appropriate amount of neutrophils to fight off infection is that…. if you get a virus and your white blood cells do not have the appropriate troops to fight off that virus… Eventually that virus or infection will travel into your blood stream, where you become septic. And sepsis is very, very, bad. Especially for a child. Especially for a child like our Wally. I will not get on the vaccine debate in this post and this may be a little off topic but I need to say it. Vaccinate your children!!! And another thing, please, I do not care if you want to hold Wally, but if you have been sick or are sick STAY away. Far away! This may be common sense, but I’ll say it anyway. You MUST wash your hands or use hand sanitizer before touching or holding Mr. Wally J PERIOD! I hate to be “that mom” but with Flu season coming up (I am literally terrified) AJ and I will be enforcing this as hard as we can! Our goal is to keep Wally out of the hospital. I think some people do not understand how important this is. Germs live everywhere. Germs spread easily. So please, do not take offense if we ask you to wash your hands, or if you have been sick. It is only to make sure we are keeping Wally safe and as healthy as possible.

Overall we are very enthusiastic about how the appointment with the hematologist went. I also cannot say it enough, Wally’s actual care team, and all his physicians that are on his case, are truly the best. We could not be anymore grateful for the people we have looking after Wally. Dr. Tarantino is just another amazing physician to add to our already amazing list of care providers. We are off to the GI specialist tomorrow! I am really nervous about this appointment because of all of Wally’s GI issues, we just need answers. Our lives may be crazy, our calendars booked, BUT we are truly blessed with the little boy that is Wally J!

Love you all!

Wally’s Momma 💕💕💕