It has been too long since I have updated on what’s been going on in our lives. I apologize. The last few months have been busy and every time I try to sit down to write, Alden wants to help. He is currently napping, so hopefully I can get a good few paragraphs down.

Alden’s health seems to be exceptional these days. He had an echo done a couple months ago which showed no pulmonary hypertension- this is really great news. He hasn’t been on any medication for ph since he left the NICU and his strong little heart seems to be doing exactly what it needs to be doing. The muscle on one side of his heart is a bit bigger, but it is no cause for concern. He also had a lung perfusion scan which measures the amount of blood being pumped from his heart to his lungs. It showed that his left lung isn’t actually getting very much blood flow to it which helps explain why he sleeps so much (other than his breathing tiring him out so quickly). We were informed that there are some medications that can help with the blood flow, and we will know more about that when he goes to surgery/pulmonary, or CDH, clinic on October 1st.

Alden has been off oxygen now for 6 months and is doing really well. Since he has been walking he breaths louder and we can often hear him, so we try to sit him down every now and again with a quiet toy to help get his breathing back under control. It only scares me if I let it. We have 4 oxygen tanks here just in case he needs extra support and the pulse ox machine to check his oxygen levels if we feel he needs it. He never looks blue unless he’s really cold. But even then he doesn’t need support. I am so proud of him. And really grateful he is thriving.

His weight exactly where it should be, too. He is 19 lbs 14 oz and 30 inches tall. He is falling in the 27th percentile for weight and the 50th percentile for height. Even his head is in the 50th percentile. He sure has a chunky little body! His high calorie diet seemed to work in his favor for the last 5 months. He is officially done with formula and is drinking whole milk. It is taking a bit to transition him to whole milk since it’s a lot thinner than the formula, but he seems to drink about 2-3 oz at a time. He takes about 4-5 bottles a day. When we go to clinic we will reevaluate his progress and make any changes necessary should he need them. However, he looks so good so I am confidant they will send us on our way without any special dieting instructions.

Alden LOVES to eat. I mean, absolutely LOVES food. Almost any time once of us sneaks to the kitchen outside of normal meal times, Alden KNOWS. And he comes flying around the corner and yells because he thinks we are getting food. He is such a character! I am convinced he thinks he has to be eating ALL DAY LONG. He loves animal crackers, graham crackers, chocolate milk, mashed potatoes, scrambled eggs, grilled cheese, green beans, carrots, yogurt, applesauce, and spaghetti. He enjoys feeding himself and is learning to hold his sippy cup by himself. We will be introducing meat into his “diet” soon as well. His diet may not seem healthy to most, but with CDH kiddos, they burn a lot of calories just breathing with their small lung, so all the calories and fat we give him the better. At least until he is able to maintain keeping his weight up without all the extra help.

We just discovered that Alden has 4 top teeth. He’s had 2 bottoms for a couple months now and that’s all we thought he had! Yesterday I decided to feel his gums and sure enough, 4 teeth were up there. He has been hiding them well! You can’t seem them when he smiles or eats, or talks…so maybe that’s why we assumed he didn’t have any.

Alden’s personality is just the best. He is truly the happiest kid I know. He is VERY independent and plays well by himself. He loves his blocks and trucks, and enjoys playing catch with our dog, and us. He really likes his cousin, James, and follows his everywhere. James is his first best friend, besides Sean.

Aside from caring, playing, and keeping up with Alden, Sean and I have been hanging in there! I started working in April at a local coffee shop and when Sean got a new job, we decided it would be best if I stayed home again with Alden. Our schedules wouldn’t work out if we both worked and Alden would have had to be with a sitter, or go to daycare which is definitely not something we are comfortable with. So at the end of July I was home again. Working really helped with all my anxiety and took my focus off of what all can still happen with Alden. I feel a lot better these days, but some days are still hard and…dark. I try to focus on Alden and how/who he is NOW instead of 1 year ago..even 6 months ago. Anyways, Sean now works for a pest control company full time, and at Costco (Wireless Advocates-the cell phone kiosk) part time. Things are busy but it’s just what we have to do for a season to make things work financially.

About a month ago Sean tested for police and passed with a good score. After that we just waited to hear back. So far Tumwater, Olympia, and Mason Country have sent him applications which he has filled out and sent, and Olympia responded saying he is eligible for the next phase. We are PRAYING he continues passing and receives an offer. This is Sean’s dream, so please keep him in your prayers.

As most of you know already, we have a healthy daughter on the way. I am 21 weeks pregnant and a lot of my day is spent thinking about how in the world we are going to care for a brand new baby at home without nurses and machines. It is really scary to me, as you can imagine. We are currently trying to decide where to deliver, and have settled on a name for her, which will be announced at birth.

I wish I could update a bit more, but I hope to soon. Thank you all for celebrating Alden’s 1st year with us. His life means so much to us. XOXO

When I asked Sean about that day, he said “I just felt confusion. I just didn’t know what or why.”

That day was March 18th, 2012- exactly 365 days ago. It was the worst day of my life.

We were informed on this day, one year ago that our son’s stomach, large and small intestines, spleen, and piece of his liver were in his chest cavity-there was hole in his diaphragm. He were told that his heart was on the right side of his body, and that his lungs were being squished. We were 19 weeks pregnant.

I will never forget when I asked the ultrasound tech how his body and organs looked during his ultrasound. She replied, “His stomach isn’t where I would like it to be.” Sean grabbed my hand and we finished with the ultrasound unhappy, concerned, nervous, and scared. My doctor met with us next. I love Dr. Dickason at SSWC. She delivered the news with honesty, compassion, and professionalism. She handed us a sticky note with the words “diaphragmatic hernia” as she explained to us what it was. She was sure to tell us that Alden had a life threatening birth defect and it was very rare, and very serious. She said there were things they could do to help, but that we needed to be prepared. She highly encouraged us to stay off Google so that we wouldn’t worry more than we naturally would. But she knew the severity of Alden’s situation. This was her first case of CDH and she knew the facts. I can’t remember what else happened at that appointment, but I will never forget the rest of the day.

We called our families and told them the news. We didn’t yet know the severity of CDH at this point since we hadn’t yet been home to research it. We updated Facebook with the title, “Baby Strozyk needs prayer.” We hadn’t even picked a name yet. Sean went right to work after the appointment and I sat with him in his office, crying. It was the same place I told him just 19 weeks prior that we were pregnant.

The weeks that followed consisted of more ultrasounds, more bad news, more tears and a mind, heart, and body full of sadness and complete anger. I was numb. I watched friends of mine announce the genders of their babies and celebrate baby showers, pick out baby clothes and I grew increasingly jealous. I didn’t understand why me, 22 years old (and considered extremely low risk prior to that appointment due to never having health issues/std’s/zero sex partners other than Sean (and only me for him) was going to have a baby with a 50% chance of survival. It made absolute no sense. It still doesn’t.

We were given the option to abort to have an amniocentesis, more blood draws and the like. After much discussion Sean made the decision that we would keep this baby and care for him just as he comes because we had been given that opportunity. I was in a whole other world. I checked out. I honestly was not sure what decision to make. I couldn’t think straight and with all the research I was doing I was not sure what to do.

I have heard that as all the “one year ago” starts approaching that it can be just as hard this time around, and I am sure that it will be for me. It’s still fresh in my mind and the memories have not faded yet. Please be aware of my constant state of sensitivity…it is all still very real to me. We are still amidst the storm here, even with how healthy Alden is becoming.

Anyways, we all know how our story, Alden’s story really, ended up. We thank God all the time for Alden…that he lived and battled and won. He was the 1 in 3,000 diagnosed. And he WON.

We thank God for those of you have literally prayed or thought about Alden for exactly 365 days now. We ask that you keep praying for him, and for all the other CDH babies fighting for their life. Not all win the battle. It is a 50% chance of survival.

Please pray for the 4 families that will be diagnosed today. And the 4 that will be diagnosed tomorrow. And the next day, and the next day, and the next.

First off, I want to announce that Alden is officially NG tube free! It is a bittersweet time for me, as I feel like his NG tube was a part of him. I grew attached and felt that it was something that completed him. I am, however, totally excited that he doesn’t need it. He is free to scoot around and play without getting tangled in the cord, or tipping over the backpack (which we would then have to prime due to air getting in…such a hassle). And most of all, I am relieved that he seems more comfortable. He spits up less, coughs less, and seems much happier overall.

We met with his OT who gave us a new feeding plan. We figured out why Alden has not been able to gain weight. He was supposed to be on a 28 cal/ounce diet this whole time, but has only been getting 20 cal/ounce (This is what a normal child would be on…the recipe on the back of the Similac can). We didn’t know that he was supposed to be receiving more. Somehow we missed that this whole time. So now he will be on 24 cal/ounce diet to help him gain. Alden is weighing in at 16 lbs, 5 oz which puts him in the 14th percentile. They would like him to be a bit bigger, but they were not concerned because he has grown in length (just under 27 inches). 

Now the new struggle will be getting him the volume he needs within 12 hours. He needs 900 mls, which is 30 oz each day to keep his weight up. The problem is that he can’t eat a lot at one time without spitting up. It seems as if he can only take 3 oz at one time. So we are now going to feed him one 3-3.5 oz bottle every 3 hours with the hope that he can become more hungry and take more. It may not add up to 30 oz, but this is where we need to start. I know it’s all confusing to most of you. Sorry! Anyways, we will call back in one month with an update and see if he will need to go back to tube feeds or increase his calories. 

We discovered that Alden does not like being interrupted while eating. We stopped his bottle feed about half way through to change the nipple size from a 1 to a 2, and Alden REFUSED to finish. So now we know not to interrupt him…the boy likes to be in control! He was also able to eat some solids for his OT. He refluxes his solids (sounds gurgle-y) while eating, so we have to really thicken his food with rice cereal. We are keeping an eye on this as well. He can eat solids twice a day now. So far he hates all veggies, and loves bananas, apples, and pears. 

CDH clinic went as expected. His 2 night pulse oximeter reading went well, and he passed. Dr. Ong (his pulmonary doctor) said that his sats stayed above 95% which is what they were hoping for. They will be keeping an eye on his pectus since the right side of his body is more pronounced. His ribs are uneven as well, but it is not concerning. Alden will get an echo in 2 months to check his heart again since his last echo showed a small spot that works a little harder. He will also get a perfusion scan. A perfusion scan consists of an IV with dye to see how much blood is circulating to/through his lungs. Alden does not need to go back to CDH clinic until the fall. 

I couldn’t muster up the courage to ask the hard questions that I posted to Facebook. I just listened to the doctors and felt confident in their decisions about him. They also said that Alden does not need to be on his pulse ox at night anymore. For the last 2 nights he has not been on it…and man, it’s hard for me. Very hard. I get up constantly to check if he is breathing. 

And finally, we met with Darcy in Cranio. Alden’s flat spot has not improved so Sean and I have decided that it is best for him to wear a helmet. He will only need it for 3 months, and it has an 85-95% success rate. 

It was a long day there. And yesterday was even harder as I began throwing up all day. I am thankful I was sick on a day when Sean was home. But today I am finally processing his appointment and new plan.

Yesterday I began counseling. It was by far the hardest morning I have had in a very long time. It was very weird being asked something only I am use to saying, “Are you afraid your son is going to die?” I don’t think I have cried that hard since I was pregnant. We talked about many things and he explained to me that I am experiencing PTSD and Panic Attacks/Obsessive Thoughts and (understandable) irrational thinking. He said that he wants to talk more about the postpartum hemorrhage since that is a very scary thing to go through, and has been overlooked/pushed to the side. He suggested I see a doctor to get my physical health checked out and consider some anxiety medication for a bit. I think that the emotional morning caused my bad headache and vomiting yesterday. I am glad today is a new day.

I could go on and on. But my thoughts are scattered and my grammar is poor this morning. Thank you everyone for your prayers!  I will update again soon!

First off, I want to announce that Alden is officially NG tube free! It is a bittersweet time for me, as I feel like his NG tube was a part of him. I grew attached and felt that it was something that completed him. I am, however, totally excited that he doesn’t need it. He is free to scoot around and play without getting tangled in the cord, or tipping over the backpack (which we would then have to prime due to air getting in…such a hassle). And most of all, I am relieved that he seems more comfortable. He spits up less, coughs less, and seems much happier overall.

We met with his OT who gave us a new feeding plan. We figured out why Alden has not been able to gain weight. He was supposed to be on a 28 cal/ounce diet this whole time, but has only been getting 20 cal/ounce (This is what a normal child would be on…the recipe on the back of the Similac can). We didn’t know that he was supposed to be receiving more. Somehow we missed that this whole time. So now he will be on 24 cal/ounce diet to help him gain. Alden is weighing in at 16 lbs, 5 oz which puts him in the 14th percentile. They would like him to be a bit bigger, but they were not concerned because he has grown in length (just under 27 inches).

Now the new struggle will be getting him the volume he needs within 12 hours. He needs 900 mls, which is 30 oz each day to keep his weight up. The problem is that he can’t eat a lot at one time without spitting up. It seems as if he can only take 3 oz at one time. So we are now going to feed him one 3-3.5 oz bottle every 3 hours with the hope that he can become more hungry and take more. It may not add up to 30 oz, but this is where we need to start. I know it’s all confusing to most of you. Sorry! Anyways, we will call back in one month with an update and see if he will need to go back to tube feeds or increase his calories.

We discovered that Alden does not like being interrupted while eating. We stopped his bottle feed about half way through to change the nipple size from a 1 to a 2, and Alden REFUSED to finish. So now we know not to interrupt him…the boy likes to be in control! He was also able to eat some solids for his OT. He refluxes his solids (sounds gurgle-y) while eating, so we have to really thicken his food with rice cereal. We are keeping an eye on this as well. He can eat solids twice a day now. So far he hates all veggies, and loves bananas, apples, and pears.

CDH clinic went as expected. His 2 night pulse oximeter reading went well, and he passed. Dr. Ong (his pulmonary doctor) said that his sats stayed above 95% which is what they were hoping for. They will be keeping an eye on his pectus since the right side of his body is more pronounced. His ribs are uneven as well, but it is not concerning. Alden will get an echo in 2 months to check his heart again since his last echo showed a small spot that works a little harder. He will also get a perfusion scan. A perfusion scan consists of an IV with dye to see how much blood is circulating to/through his lungs. Alden does not need to go back to CDH clinic until the fall.

I couldn’t muster up the courage to ask the hard questions that I posted to Facebook. I just listened to the doctors and felt confident in their decisions about him. They also said that Alden does not need to be on his pulse ox at night anymore. For the last 2 nights he has not been on it…and man, it’s hard for me. Very hard. I get up constantly to check if he is breathing.

And finally, we met with Darcy in Cranio. Alden’s flat spot has not improved so Sean and I have decided that it is best for him to wear a helmet. He will only need it for 3 months, and it has an 85-95% success rate.

It was a long day there. And yesterday was even harder as I began throwing up all day. I am thankful I was sick on a day when Sean was home. But today I am finally processing his appointment and new plan.

Yesterday I began counseling. It was by far the hardest morning I have had in a very long time. It was very weird being asked something only I am use to saying, “Are you afraid your son is going to die?” I don’t think I have cried that hard since I was pregnant. We talked about many things and he explained to me that I am experiencing PTSD and Panic Attacks/Obsessive Thoughts and (understandable) irrational thinking. He said that he wants to talk more about the postpartum hemorrhage since that is a very scary thing to go through, and has been overlooked/pushed to the side. He suggested I see a doctor to get my physical health checked out and consider some anxiety medication for a bit. I think that the emotional morning caused my bad headache and vomiting yesterday. I am glad today is a new day.

I could go on and on. But my thoughts are scattered and my grammar is poor this morning. Thank you everyone for your prayers! I will update again soon!

Being a mother is the hardest and most rewarding job I have ever had. It has completely wrecked me. It is so sacrificial. The love I have for Alden is overwhelming. It is exhausting. It is genuine, and pure, and right.

I look at Alden and wonder why God chose me to be his mom. Me- a broken, selfish, lazy human being. I am so glad he chose me. So, so glad. I can’t believe that I get to hold a chunky, pure, sinless little baby boy…and I get to LOVE him. I get to cheer him on throughout his life. I absolutely adore him in every way.

I love his laugh. You know…that deep hard belly laugh? Yes, that one. His is the best. It is music to my ears. It is a sound I never thought I would have the privilege to hear. It is a treasured gift. I love when he looks at me in the mornings when I bring him into bed to snuggle. His eyes speak for him. I know they are saying, “I feel so safe and loved here with you.” I rub his head and tickle his eyebrows until he dozes off to sleep. He is so peaceful. I love his curiosity. The way he looks at his fingers and hands wondering, “what the heck are these things?” It cracks me up! I love when he chews on his toys (he is teething) and grunts or growls because it isn’t as satisfying as he hopes. His frustration makes me smile because I know that he is learning…discovering…growing. His scream is a wild one, but oh how I love it. I know when he is faking it too because his eyes don’t water and his face doesn’t scrunch up as much. He is the greatest gift Sean and I have ever received. I love that he holds tight to his father. His trust for Sean at such an early age is rewarding. Sean was made to be his daddy.

Alden is 6 months old now. He is 16 1/2 pounds and gaining the weight that he needs. We have reintroduced solids, and so far he likes pears and bananas. We mix it with rice cereal and similac to make it a little thicker. He will be meeting with a new occupational therapist (ot) down here at St. Pete’s and will have another swallow study done. Alden’s team at Children’s will still make all the calls regarding his caloric intake, amount needed, etc.

Alden is doing great with his physical therapy, too. He is rolling from front to back and is very interested in his toys. He is doing very well. We are working with him here at home a lot. We are practicing helping him roll from stomach to back, sitting up straight, (he is stiff and falls to his left side often due to a large amount of space) and pushing up with his arms while he his on his stomach. He gets very frustrated and tired, but it is good for him. He absolutely hates tummy time. I have a feeling he will skip the crawling state and go straight to walking.

Alden is also making appropriate noises and sounds. He does his “oohs,” and “aws” and his “blah, blah, blahs.” It is so cute! He screeches and yells when he is excited and upset. We are so thankful he is developing well. Even though he might be a little behind, it really doesn’t matter to us. To us, he is developing just as we expect.We have nothing else to compare him to, so for us he is doing everything just as he should be.

You know, CDH is such an emotionally draining journey for me. And I know it is for others as well. It brings about emotions that are hard to communicate because sometimes they just do not make sense. A few examples for me personally are the fact that I miss Seattle Children’s and I am actually dreading the day we can toss the NG tube. I’ll explain.

Living at Children’s brought trauma and joy. It robbed me of holding a brand new healthy baby. It robbed my experience of jumping into motherhood without knowing one thing. I hated being there because I could not hold Alden, bond with him, kiss him without wondering if it was actually hurting him than helping him (due to over stimulation). I could not rock him when he was sad. I could not make him feel better with a tight snuggle without asking for more Morphine, or Ativan, or Dopamine, or antibiotics. Children’s meant, for me, that my son was critically ill and that he could die-that he may not come home. Whatever it was that was trying to take his life tried really hard, and there was nothing I could do but beg God to let us bring him home. I remember thinking that if Alden died, I would want to die too. And then the hemorrhage happened. And you know what? When I was wrapped in all the blankets and towels and put in a wheelchair while we waited for the ambulance, I didn’t even say bye to Alden. I didn’t say goodbye, or I love you, to him. I remember thinking in the ambulance that if I died, I would miss out on his whole life and I didn’t say goodbye. How could I have forgotten to do that? To kiss him one last time. To soak in his smell. Who cares if I was bleeding out. I should have done it. It is something I still am having a hard time dealing with and I know it doesn’t make sense, and that because UW was able to save my life after such tremendous blood loss, and that Alden kicked CDH’s butt with great strength and determination, I should be over it. But I am not. Not yet. It hasn’t gone away, but maybe one day it will.

But Children’s did give me security. I knew that he was in the safest place in the world. I had doctors and nurses on hand when I needed help. They taught me how to do the most common parental duties, like bathing and changing him, how to swaddle him, and rock him. They encouraged us and cheered us on, hugged us, cried with us, and laughed with us when we couldn’t sleep and watched endless amounts of Grey’s Anatomy during the night (I know, I know. What an odd show to watch as code blues are going off in the background). They loved on Alden and cared for him when we would have to go do laundry, or eat, shower, etc. They felt like a family. They cared for him like we care for him. We shared my son. Children’s saved my son’s life. I am forever grateful.

The feelings I have are so scrambled in my head. They don’t make sense to most, even to me. And it is taking me a long time to even process what the hell we just went through. I am just beginning to figure out why I am dreading the day we give up Alden’s feeding tube. That day we will celebrate, I’m sure. I can picture Sean’s big smile and sigh of relief. Right now, I do not want to get rid of it. It is a way for me to tell his story, our story. I am scared that without his tube, Alden will be forgotten….he won’t matter anymore. Ridding of the tube has nothing to do with his nourishment or health, or anything like that. Of course I will be excited that he will be in a place that he is able to take in enough food, and keep his energy/weight up. The NG tube, for me, is a part of who he is. It is a good thing that he has it. It is a life line for him. And I know the day is coming soon. I already hate this day.

Another thing I am trying to process is why I feel like I have to be “super mom.” I, without the help of a professional, have concluded that I have SO MUCH GUILT. I feel as if I can’t be frustrated when Alden is crying. That I can’t watch t.v or nap, or draw, or write, or do anything except tend to him because his life is what I wanted so bad when I was pregnant and when he was in the NICU. I feel so guilty when I take a longer shower (which the entire time I can never actually relax and enjoy it) because I worry worry worry or feel like I am a bad mom because I am starting his feeding one hour late. It’s all jumbled in my mind. I am exhausted.

CDH is a never ending battle, not just for Alden. I feel old, and tired from the worrying and anxiety. Please pray it goes away soon.

Alden’s next appointment is March 5th up at Children’s. He will be getting his 6 month shots (fist pump for being pro-vaccine, but nothing against those who choose not to) and has his 3rd RSV shot soon. He also has another PT appointment next week. February has been and will continue to be a busy month!

We are a very happy family. Alden loves his dog Annabelle, even though she licks his face sometimes. He giggles at her and tries to play with her. He loves his new walker, although he did walk forward the other day and it scared him really bad. Ha ha. He loves being tickled by his shoulder blades, cries when we leave the room, laughs hysterically when we make the sound, “pew pew pew,” and enjoys sleeping on his side. It is funny….how your kid is their own person, isn’t it? I love who Alden is becoming.

Alden + CDH = A Tough Battle

Alden is just under 5 months old now. He is growing, learning, and changing constantly. It is truly a joy watching him discover the good things in this world, especially when he was surrounded by a birth defect that wanted to take his life. Now, it just effects his life.

Alden recently had a swallow study done at Children’s to see if he is a silent aspirator. They put him in something like a car seat attached to a wall, and brought an X-Ray machine down by his face to watch the Barium (a special drink) go down his throat. Alden REFUSED to do it. We tried everything. He wouldn’t take his normal bottle, the Barium which was apple flavor (of course he didn’t like it, he has never tasted anything other then breast milk and Similac), or the binky-trainier. It was very frustrating because we couldn’t get the answers that we wanted/needed. Eventually the doctor just put a syringe in his mouth as he was screaming and pushed the Barium to the back of his throat. It wasn’t a true picture of how he eats/swallows/breathes but it did show that despite his flailing and screaming, he did not aspirate. However, the amount that she was able to do wasn’t even equivalent to a normal suck from the bottle.  After that appointment we headed up to his OT (occupational therapy) appointment. Of course he pooped everywhere and took a bottle. She watched him try to eat 60 mls, which he didn’t quite finish, but she did notice that his breathing was much better while he ate this time when compared to the last time. He ended up throwing up after though. No new plans were given regarding his NG tube and bottle feeds. We will go back on Jan 8 to CDH clinic where there will be a more thorough evaluation and new plan. 

Alden does have reflux and it is showing up more now. He is on .08 mls of Zantac to help reduce it and some days it helps, other days it doesn’t. He eats 5x daily. These are called bolus feeds. He gets to try eating 40 mls by mouth before each feed. Sometimes he takes the full amount and other times he doesn’t. He gets a total of 102 mls for each feed and we add 3 more mls every Saturday. We subtract whatever amount he drinks by mouth from the feeding pump and he gets the rest by tube over one hour and fifteen minutes. We skip his morning feed because he throws it all up almost every time. He is still on a continuous feed overnight. It breaks my heart when he doesn’t want anything by mouth. But I know that he is trying and I hope he knows it’s ok if he just can’t do it. Sometimes he just gets too tired to eat. (Not sleepy tired, but breathes too fast or too hard). He still breathes heavily when we are in crowds or loud places as well, so we put him on oxygen just in case. I can tell he can be easily over stimulated or startled, but that’s normal for a CDH’er. 

Alden got his first round of RSV shots today, and he will continue getting this shot once a month until April. It was so sad to watch him be in pain, but we know it is best for him. He also got weighed. He is 15 pounds! Yay for a chunky dude!

On January 8th we go back to Children’s like I said before. He will have an echo again because they said at his last appointment that his heart isn’t perfect, but not bad. They want to check for pulmonary hypertension. He will also get an X-ray of his lungs to see how they have grown since birth. We try to keep in mind that even if it has grown it still may not function well. Praying it does.

We have become very confident in placing Alden’s NG tube now. We can do it in less than 5 minutes, which is nice because it makes it less stressful for Alden. He cries harder when he is in his car seat. He is such a trooper. He really puts up with so much.

I am still having a hard time. People stare and whisper and I wish they would just simply ask why he has something attached to his face. It hurts because I think he is just the most beautiful thing and everyone keeps reminding us of his CDH when they stare. People are quick to brush it off when we explain it as if it were a simple surgery and short hospital stay. But all of you know that it wasn’t. 

Sometimes I do think it is unfair that this happened, yes. All of my motherly instincts still long and crave for a normal pregnancy and birth. How can I not desire that? Pregnancy, for me, just was not fun. I prepared the entire time for Alden to die, and I still can’t get that out of my head. I relied completely on everyone else for hope and prayer because I did not want to involve God. I was so scared that if Alden died, I would not want to walk with the Lord ever again….I was scared I would blame him for something that he didn’t do.I don’t believe He planned for Alden to have CDH. He didn’t form a baby with a broken diaphragm to test our faith or because He knew we could handle it. It just happened. Things just happen. It’s all still confusing for me to figure out.

Looking back at pictures of myself all I can see is fear. Detachment. Anger. I can’t even write about it without crying. I am so attached to Alden right now and can’t ever leave him still because I feel guilty for trying so hard to keep myself from getting attached and loving him when I was pregnant. It’s like I am making up for all that “lost” time. It is hard to explain, but any other CDH parent understands what I mean….I hope.

I finally went through all the pictures of Alden’s birth and my Facebook posts, and everyone’s comments during the month of August. I don’t remember most of it. The whole experience plays in my head as if it were a movie, or like I was having an out of body experience. I am grateful for all the prayers, the love, support, and the CDH community that we had and still have. If it weren’t for you all, I would have lost it by now.

I have such a different perspective on life now. I have more compassion for parents with ill children. I long to help NICU parents one day when I can understand the emotions I went through while there…and the emotions I am still dealing with. Like I said before, I am forever changed in many ways. The CDH journey will always be a part of our life. It isn’t going to ever go away, but we pray that it won’t threaten Alden again like it did at birth.

Here are some pictures of our sweet little prince!

Home

Home has been incredible. I am a mother. Sean is a father. And our son is home-right where he belongs. 

Alden was in the hospital for 78 days & we were gone for 96 days. The time away was such a journey. Seattle Children’s and UW hold such a special spot in my heart. They are a part of Alden’s story. From Dr, Jolley to Dr. Javid, to the nurses in the NICU and the surgical floor, all the way to the Starbucks baristas. They are all such an important part of Alden’s life. In various ways, they all helped save him.And not just them. You have too. We are so grateful. 

The day we were discharged was such an emotional day for everyone. We knew that we were finally taking our sweet boy home-something we longed for since the day we learned about CDH, and yet it was so bittersweet. Saying good-bye to his nurses was probably the hardest part. Over the three months that we were there, we all shared tears, and laughter. They saw parts of my inner most being that I didn’t know existed. They saw  Sean and I in the raw 24 hours a day, 7 days a week. Imagine living your life in front of strangers. It is pretty interesting, and weird. ;) Needless to say, Alden had the most caring nurses in the world. I wish I could repay them someday. But how do you give them what they have given us? You don’t…you can’t. You just always remember them and always thank God for them. I have realized that nurses are just people, deeply caring for other people. How come we can’t all be like that? 

I was so busy that day in my head. I was worried about how we were going to take care of Alden even though we had been thoroughly trained. I probably went over every scenario that could happen at home over and over and over. I am thankful the nurses and surgery team were so patient with me. I was driving myself crazy-I can’t imagine how it was for them! I appreciate them so much. We have survived here at home just fine. We have replaced Alden’s NG tube twice, and easily give him his meds. It is not as scary as I anticipated. I still am fearful. He sleeps with a monitor so that we can watch his sats during the night. I often get out of bed and make sure he is breathing. I make sure to kiss him every night just in case. I can’t help but think it could be the last time I get to kiss him. I hope the anxiety will stop soon. It is so exhausting.

Our dear friends Charlie and Sara photographed the day we left and I will forever cherish those pictures. I dreamed and hoped for that day for so long. And all the while I was beaming from ear to ear seeing my son in his carseat, I felt a deep sadness for all the other CDH families that I have been in contact with that didn’t get to bring their child home. If any of you are reading this, please know that I thought of you. I thought of Esther Holtrop the whole way home.

Home has been a transition. Caring for Alden is hard, and exhausting, and SO rewarding. I love that I get to change his poop and not someone else. I love that I get to rock him to sleep, that Sean can play his guitar to him, and that we can look like fools just to make him laugh and smile. What a job. The help was nice, but there is nothing better than being here doing it ourselves. 

Alden is such a big boy now. His follow up appointments went well. He is still in the 5th percentile for weight, and in the 25th percentile for height, but that is normal for CDH babies. They burn a lot of calories working so hard to breathe! He is up to 40 mls by bottle 4 times a day, and the rest of the amount he needs is fed through his NG tube. He is still on a continuous feed overnight. He LOVES to eat. And we are so glad. He is still getting my breast milk, but we do fortify it with Similac and Beneprotein so that he can get the amount of calories he needs to grow and thrive. I am weaning myself of pumping, and I am so sad to do it. I have lost my supply significantly. We are unsure why it dropped so much. Maybe it was due to the transition home, or the switch from a hospital grade pump to a normal pump…maybe it is because I am not eating/drinking enough….who knows. But I can’t seem to get it up. I have enough milk stored up for him to have for about 3 more months. I am sad, but trying to up my supply and seeing absolutely 0 results makes me more sad. I’m pretty bummed overall…I feel guilty, and feel as if I will be losing a special bond with him. But I know that I gave what I could in the most excruciating circumstances. 

Our days mostly consist of mixing milk, filling feeding pump bags, feeding Alden, meds, pumping every 4 hours (which will slowly be reduced) and filling his oxygen, as well as making sure we are up to date on supplies for his NG tube, etc. And still trying to live normally. It really isn’t that bad, just tiring!

Alden loves clicking noises, kissing noises, and playing Peek-A-Boo. He loves being held, and has recently discovered his fingers. He loves laying in bed with us in the mornings, and loves the bath still. He is such a pleasure to have. We adore him. His laugh is priceless. 

I am still trying to sort out many emotions and feelings. I feel as if the days are currently flying by and I am so busy caring for Alden that I don’t have time to deal with some of the deep DEEP emotions I have. I know they are there. I can physically feel it in my chest-racing heart, tightness..shaking. I don’t know that I will ever get over how traumatizing it was to prepare for my son to die, seeing him in the NICU, hemorrhaging, getting a D&C and blood transfusion, and then watching Alden fight to get out of the hospital. I am forever changed in a way I can’t describe. 

Thank you all for reading my blog. Sorry it was so scattered tonight! I will continue to write, and I hope that you all will still read it. It means a lot knowing that my time isn’t being wasted in front of the computer screen.

With Love, 

-Kara

Making Progress

Hello everyone! I am so excited to receive emails from all over the world. It really is amazing how many people have heard of Alden’s story. I read each email, comment, and text message everyone sends. Please understand that I can’t respond to everyone but I definitely try!

Alden’s Progress

Alden is slowly progressing! He is up to 16 hours/day on 1/4 liter of oxygen (from 10 am-2 am). On Monday he will get his blood gas checked to see of we can move up to 18 hours/day. After that he will do 24 hours and then we will start looking at coming home! Before we leave for home he has to go several days on 1/4 liter oxygen and do well, along with gaining weight. He burns a lot of calories working so hard, but so far he has been gaining! He is 10 lbs now, and is in the 3rd percentile for his weight, and in the 31st percentile for his length. He is starting to look chunky! He will have another chest X-Ray before we leave just to make sure there is no excess fluid and of course to see how much his lung has grown. 

Alden also currently receives 10 cc’s via binky trainer 3x/day and absolutely loves it. He doesn’t have any issues sucking or swallowing while he eats. The only reason he is still on a continuous feed and is not bottle feeding is because his lung is too small right now, causing him to breathe too fast while he eats, which then causes him to get too tired. We will do bolus feeds once we transition home and eventually we will be able to bottle/breast feed.

I am still pumping, which gets annoying at times because it seems so inconvenient. I have to remind myself that my milk is the best nutrients my son can receive, and that keeps me going. I pump every 3 hours now, for 20-30 minutes. They add 8 extra calories to Alden’s food (my milk) for each feed. (Fortified breast milk).

Alden’s beginning to have a personality now! He loves to be talked to, held, and loves to look around. He smiles often and gets really angry when he has to poop! He is aware of his surroundings, and knows when he is alone. He LOVES attention! He does not like the cannula in his nose, so we have to keep mittens on his hands to keep him from pulling it out. One day I am sure he will pull out his NG tube. I recently replaced his NG, which was scary at first, but we all made it out alive! Ha ha. We have started to give him all his medicine in the mornings and at night so that we are comfortable when we go home. Alden is not on very many medications anymore. He is on Zantac, Gas-X, a diuretic, and a vitamin. That’s it! Tylenol too, when needed.

We were told we should be able to head home within 10-14 days!!! We have been gone now for a total of 81 days, and Alden has been here since he was born-63 days days. I want so bad for Alden to experience normal life. Soon!

Visiting & Shots

We have had many visitors, which has been so great. But now that flu season is here, we are asking that you stay away if you and/or your kiddos have not been vaccinated. We encourage you to get a flu shot AND a whooping cough shot if you want to see Alden. Not only can Alden get really sick if he catches a virus, he could die. So please respect our wishes. Thank you all for understanding! You can always visit Sean and I though, in Starbucks;)

Registering & Baby Shower

We finally registered at Target!!! We scanned a ton of stuff, but our BIGGEST needs are diapers, size 2 and up, clothes for Alden (3 months +), a Medela breast pump, and a video baby monitor. We registered for these things. Once we have the EXACT date that we will be coming home, we will send out baby shower invites. :) Please let us know if you want to come!! We will be having two showers- one with family, and one with our friends.

I have so much to say, but not enough time tonight to write. PLease know that we are forever grateful for your love and support. Thank you for helping us with bills, for praying for Alden’s life, for hoping and believing when we didn’t. We absolutely can not wait to share Alden with you!

Week 6

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Alden is 6 weeks old, can you believe it? Time is going by fast when I think about how much he has grown. He is such a beautiful little guy. Tomorrow marks 2 months since I have left Olympia. I have no idea when we will get to go home. I miss Oly so much…the coffee, the people, my dog. Soon enough we will be back!

Alden is doing so well. He is up to two 3 hour trials (sprints) on 1/4 liter of oxygen. Today was his first time doing 3 straight hours. He did it from 9-12 this morning and is just about to start his next sprint. He has literally slept the entire day and is still sleeping.  This is so much exercise for him. It’s like running a marathon. Hopefully he continues to do well. Next week his sprints will increase another hour, and he will also receive an echo to check his pulmonary hypertension. His ph is moderate, meaning it is between severe and mild. If it doesn’t continue to get better, he will be put on Viagra. Yes..you read that right! Viagra. It increases blood flow from his heart to his lungs. See? Makes sense. :) Anyways, that will be discussed later by pulmonary if we need to go that route. Alden’s high flow oxygen is set to 30%, and he seems comfortable on it. He is on high flow all the time except when he is sprinting. Alden is 8 1/2 pounds now and is on a “nutrition” plan if you will. He is at full feeds, getting 21 ml/hour with an extra 8 calories that my milk does not provide. He receives a total of 28 calories/hr. His legs are getting chunkier! But he is still so skinny, and still in premies! I can’t believe it, ha ha. His lung is still trying to grow, and he is on a couple different meds to help with extra fluid. He is taking in more than he is putting out..so he basically isn’t peeing enough. Pooping is a whole other story! Changing him is hilarious. I somehow always manage to stand in the line of fire and get peed on. I don’t even bother to change my clothes anymore! As long as he is clean, I am happy!

He is a miracle, isn’t he? I just stare, and stare, and stare at him. I can’t imagine him not being here. I broke down one night with his pulmonary doctor. All throughout the pregnancy we sat on statistics and the opinions of medical professionals. “You’re situation looks grim. Your child has about a 50% chance of living. His LHR is bad.” (By the way, no one from UW said this. They gave us COMPLETE hope). So you can imagine my fear for all these weeks when he actually is doing well and no one has told me whether or not he can STILL die. I was laying awake at night unable to sleep because I was so scared that I would not hear his sounds, or that if something did happen I wanted to make sure I could say bye, and that I would see him in Heaven one day. So I asked. I could barely get the words out. How does one ask if their child could still die? The doctor held her tears back- I could see them in her eyes. She said no, he is not going to die. The chances of that happening are slim to none. His lung will grow and his heart won’t get too tired and stop beating. She assured me and then answered a bunch of questions I had. I have felt much better and at peace ever since. And in the night when I get scared, I just walk to his crib and touch him, smell him, and kiss him.

I am so ready to be home. We are not sure where home will be now. We were informed that because Alden’s lungs are fragile and do not have very many hairs (cilia) to filter out mucus, we need to move. All our neighbors are chain smokers. We can smell it all over the house. Under the cabinets, the walls…etc. It is disgusting. Of course we didn’t know that when we moved in, but now we are looking again. Sean has been looking for a house to rent on top of working 2 days in Olympia. We are so tight on money. We only prepared/saved enough for 3 months of bills. (July-September) and now we are getting scared. I am not asking for any more donations, only prayer. We just need prayer. That we would find a place that we can afford, a house without shared walls, and close to Olympia. The doctors are writing a letter to break our lease since it is a medical condition. We just aren’t sure what do to at this point except wait and see what tomorrow brings. Sean is stressed for it’s natural for a man to want to provide for his family. His next phase for State Patrol is this month and we are really hoping he gets hired. Please keep praying.

I feel like I am starting to lose my mind a bit at times. I have very little social interaction except for with Sean, family that visits and the nurses. I sit with Alden almost all day. I still can’t bring myself to leave my baby. A trip to Starbucks is about all I can handle. I know everyone says I need to get out, but if you were me, could you? It’s way harder than you may think. I have loads of time to sit here and think. I think about all kinds of things. I have come to realize that yes, I don’t have a job anymore and haven’t finished school yet, but even if I did have a career, money, or a completed degree it would not have changed Alden’s condition. It still would have happened. Nothing would have changed it. I have thought a lot about how we are going to provide and care for this little guy for the rest of our lives and we have no idea. Even with the small things, like bathing him or changing him. We didn’t read the baby books…we were too busy researching CDH. I don’t know if it’s normal for a baby to sleep all day, lose his hair, or what age they start smiling, crawling, laughing…etc. I feel dumb at times for asking the nurses such simple things about babies. I think about what caused CDH. Was it a gene I passed on? Did my DNA fail? Did Sean’s? Will our next child have CDH too? Will we even be able to handle the thought of waiting 20 weeks to see a diaphragm? I am obsessed with finding out what caused it. 

I have so much time to think…I could go on and on, ha ha. I know I sound like a worrier, and I am. I’ve just never had so much time to think! I will spare you!

Please pray for us. We are stuck in a hard place and not sure what the next month will look like. All we know is that we have a son that is alive. A son who made it. A living miracle and that is all that matters. He is enough for us. God will work out the rest.

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Our Miracle

I never thought my sweet son would steal my heart more than he has. Man, do I love him. I have never wanted something more than for my son to live, and he did. He is alive and well and Sean and I thank God every day. It could have easily been different. He is our miracle baby.

Life is difficult living in a hospital. I have been away from home for almost 2 months. The first month consisted of living in a hotel and the Ronald McDonald House while Alden was in the NICU, and now I just stay in his room here on the surgical floor, every day, and every night. I wear the same clothes, the same shoes, and try to remember to shower, brush, blow dry my hair, etc, all on top of pumping every 2 hours, talking with doctors, holding Alden down for x-rays, echos, blood draws, or comforting him from the morphine withdrawals and changing him every hour because the new meds he is on makes him pee a lot. Changing him and dressing him is time consuming as well. Have you ever walked into a massive spider web? That’s what it’s like trying to work around his wires. They get stuck in between his toes, fingers, legs, and every other part of his body you can think of. Once he is settled and comforted, I can sit for a second. Sometimes I literally have to tell myself to go pee, because I am so exhausted and trying to keep up, I forget. Sean is just as busy. It takes two to do all this and Sean is so tired as well. We have to pay bills, deal with insurance, keep our room clean, and find SLEEP on top of all this. Occasionally Sean and I can get in a quick kiss. Man, do I miss dates;) I could not do all this without Sean. The physical things, yes, but mentally I would have lost it by now if it weren’t for Sean. He takes such good care of me.

We occasionally leave to do laundry, eat, make a Target run, get fresh air. It is hard to leave, knowing my baby can only lay there in his bed. Does he long for me like I do him? Makes me cry even typing this. When Sean and I go out to eat for dinner I feel so incomplete. Alden has never seen the sun. He hasn’t even been outside. I know he will get to do these things soon, but for now in these moments here, it still hurts. I think people forget that part…it still hurts.

I thought all my emotions would be gone since he is doing so well. I cry in the shower most days-it’s the only time I get to think. Does Alden know me? I mean, does he really know I am his mom? With so many visitors, and nurses, and voices, does he know me? I have a hard time sharing him because of this. I don’t feel like he has bonded with me yet.

I am flooded with fear. Fear he could still die. I pray over him every night and ask Jesus to keep him company while we are asleep. I pray and ask God to please let him be alive when I wake up. The what ifs haunt me. The thought of going home scares me.

Anyways, I could go on and on about my feelings and how I am still grieving the loss of “normal” motherhood. But there is just too much to be thankful for and excited about.  I love Alden and he is just perfect to me. Words can not describe how much love I have for him. It’s insane!

There is no talk about us going home yet. We are almost 5 weeks in, and it sounds like maybe a few more weeks from what I have picked up on. Alden is having a hard transition from high flow oxygen to normal oxygen, but it is starting to get better. High flow gives more pressure through the cannula, making it a little easier on his lungs. His high flow is set to 25% and we all breathe room air, which is 21% so he is close. Currently his oxygen sprints are twice a day for 3 hours. 9-12 am, and 3-6 pm. He also has begun bolus feedings. He recently met his goal of 19 ml/hr at 28 calories. He is on a continuous feed so he has never felt hungry. But all that is changing today. We are working on giving him 24 ml/hr and then stopping the feeds for 15-30 minutes so he can learn what feeling hungry is like. Slowly that break will increase.

He is growing and getting cuter every day! He is one month old already! I can’t believe it. We snuggle him, and love on him, and kiss him so much. I melt every time he has daddy time. Sean likes to hold him at night when we watch Grey’s Anatomy. My absolute favorite thing in the world is when we get a new nurse and Sean says,” He is the cutest baby ever, isn’t he?” Haha. 

Please keep praying for us! I am getting so homesick. Sean goes back to Oly on Fridays and Saturdays for work, so those days are especially hard. But I am getting use to it! Many of you have asked what we need. We are ready to have a baby shower! I NEVER thought I would get to have one. Soon we will go register somewhere and get all those details and probably invite the whole world to our baby shower (as long as you have had a whooping cough shot) lol. But our IMMEDIATE needs for when we are home are diapers and unscented wipes, and laundry soap. Oh, and food. But mostly diapers and wipes. Pampers brand, Huggies don’t fit. 

We love you all!!! I will try to update more now that Alden is settling down and getting better. Our little man is the best:)

Alden, Mommy, and Daddy

Our days are colliding at this point. It is hard to keep track. But everyday Alden amazes us! I haven’t been to see him today yet, but I can’t wait to hear more good news. :) I have never loved a human being SO much before. I cry every time I think about him. Being away at night to sleep is so hard. I wonder and worry, but I always ask Jesus to keep him company and snuggle with him when daddy and I can’t. 

I can’t believe how well he is doing-better than I ever expected. I find myself begging God all day long to just let me bring him home. I really hope we get to!

The days are still hard though. Yesterday I had my first hard breakdown despite his amazing progress. He is still critically ill, and I worry that anything could happen at any time, because it can. I am celebrating each victory he has, but I am still guarded. Sean is so supportive. He hugs and holds me, and sings to Alden. The environment is calm and soothing. He carries our family so well, even on his hard days. My day was made though last night when the nurse asked me if I wanted to hold Alden. I was so excited. He smelled so good, and is so tiny. I wanted to hold him forever. Hopefully I can do it again soon! After I held him, Sean and I sang worship songs to him. I kept my hand cupped on his head and cried as we sang “Amazing Grace,” “You’re Beautiful,” and “How He Loves.” It was one of the most beautiful times of my life.

My sweet sweet Alden. I love him. I long for him. I need him.

Some nurses are better than others. I love when they include me. (Most of them do!) I have changed his bedding, his diaper, wiped his hands and face, and helped with other things. There isn’t much Sean and I can do, but when we have the opportunity we take it. I feel like a mom finally. The moment I changed his blankets I felt like the best mom in the world. :) I couldn’t stop crying. 

Yesterday was a good day! We had many highlights. His infection seems to be WAY down, his chest tube came out, I heard him toot for the first time, and I saw him open his beautiful baby blues.:) Praying today is just as good!