Sleep Training/Coaching

Whatever you want to call it, Training, teaching, coaching, it’s all the same. It’s getting your baby used to sleeping the way you want them to. After 2 months of no longer sleeping through the night I am feeling it. Somethings got to change. We probably should have done this sooner but we didn’t. We meant to try this soon, but we didn’t. So here we are now, fixing to start trying to “teach” the almost one year how to put himself to sleep.

How did your kid(s) learn to fall asleep on their own? Any suggestions for us?

I will post how last night went as night one and how tonight goes as night two in the morning. For now, I’m off to catch some sleep while I can. Wish us luck!

Hydrocephalus Diagnosis

I am going to apologize in advance for how long this post will be. I hope that if you are reading this you don’t give up and read it all. Maybe you have gone through this or something similar, or maybe you know this is in your near future and want to know you are not alone. Either way, this is the story of one of the hardest times of my life.

I think in the back of my mind I knew something wasn’t right. I didn’t want to admit it though. After everything we had already been through I couldn’t admit that anything else could happen to my sweet baby boy. It took someone speaking up and telling me it was possible that Jax had Hydrocephalus. I had never heard the term before but after doing my own research I knew it was possible. My thoughts in the back of my mind of his head being too big were shared by others. Someone finally had the guts to come forward and I truly appreciate it. After realizing the possibility based on researching Hydrocephalus I spoke to my husband then called his pediatrician. They scheduled an appointment for that afternoon. It was a Monday; I remember it all too clearly. They measured his head and based on the growth since his last appointment it had increased significantly. They called the local children’s hospital and let them know we were going to be headed over.

The children’s hospital is right across the street from the hospital where Jax was born and spent time in the NICU. The drive there was a gloomy reminder of the drives to visit him in the NICU.

Once we arrivedroom in the E.R. diagnosisHydrocephalus.a room on another floor. This is where we would end up spending the next few nights. He had to begin to fast after midnight so he could have an MRI the following day to determine the best way to proceed.

A neurosurgeon came in to discuss the possible options. He said based on the MRI shows he might have the option to have an ETV or have a shunt placed. The ETV was a possibility of being an option, if the MRI showed this option isn’t possible our only choice was a shunt. We as parents had to decide if the ETV was possible if we would want to try or not. The neurosurgeon said most doctors won’t perform an ETV under a year old but he was an aggressive doctor and if that is an option to avoid a shunt he would do it if we chose. I don’t remember at what point he said it, but the one quote that I remember him say is “a shunt is a mechanical device, it’s not a matter of if it will fail but when”. After lots of research on our phones and talking we decided if the ETV was possible that’s the route we wanted to take.

I understand having to fast to be put under, I get it. What killed me while fasting was my poor baby boy didn’t understand. He had no idea why no matter how much he cried I would not feed him, no matter how much he tried to tell us he was hungry we wouldn’t feed him. We had no idea when he would be scheduled for his MRI and we wouldn’t know until 7am. It was after 7am and we still hadn’t heard, he is miserable, we are miserable not being able to feed him knowing he can’t understand what’s going on. They finally let us know he was scheduled for 12:30 but still had to fast in case he got bumped up sooner. That’s over 12 hours they asked my just shy of 6 months old baby boy to fast. Even longer if you then add the time for the MRI, waking up and being able to nurse again. This was one of the hardest things for me to go through as a mom. That Tuesday was one of many tough days that week.

At some point while waiting the neurosurgeon came in to check on us and we talked to him about having a extremely hungry baby waiting on the MRI. He said he would try and get him bumped up in the schedule if possible.

It felt impossible at the time, but we survived and made it to the MRI. Waiting to find out the results was nerve racking. The neurosurgeon came to speak with us, an ETV wasn’t an option and he would be getting a shunt. The MRI showed some droplets of blood in the brain, apparently an IVH, intraventricular hemorrhage, occurs in some preemies. I read that babies born before 30 weeks typically have an ultrasound of the head to screen for IVH, where babies born between 30 and 34 weeks only have an ultrasound if they show symptoms of IVH. Our little guy was born at 34+4 weighing 6lbs even. He had no symptoms so never had a head ultrasound. The neurosurgeon believes this is what led to his Hydrocephalus.

The neurosurgeon was nice enough to hold off and schedule his surgery for Friday. With it being Tuesday afternoon, if it got scheduled for Wednesday or Thursday he wouldn’t be scheduled until later in the day and having to fast starting at midnight we were glad the neurosurgeon was considering that. He was scheduled for first thing Friday morning with surgery at 8. He was taken to pre-op at 7. Leaving that hospital room, knowing he was going for brain surgery was hard. Trying to hold it together was impossible. Having our parents there was nice but I didn’t feel the comfort of them being there at that point. I felt like my husband was the only one who could understand what I was feeling, and to be honest I didn’t feel like he could truly feel what I did. I was heartbroken my baby boy was fixing to have brain surgery. Part of me felt like I’m the reason. My preeclampsia led to him being premature which led to the slight brain hemorrhage which led to Hydrocephalus. I felt somewhat responsible, if I hadn’t developed severe preeclampsia and had to be induced would this have happened?

I tried not to think about the upcoming surgery, but brain surgery isn’t something you can just forget about. I was grateful for him being able to have surgery first thing in the morning so fasting for a shorter period of time, but it also extended our hospital stay. I was ready to sleep in my own bed again, but refused to not be there through the night for my baby. He would not be left alone in the hospital, and if he had to sleep there all night I would too. I left once with my husband to go home, use a full sized shower and repack for a few more days. Grandparents stayed at the hospital so he wasn’t alone.

Surgery morning had come, my baby boy only 6 months old was fixing to have brain surgery. I’ve had almost a week to process this yet it still seems surreal. Just a nightmare I need to wake up from. I was doing fairly good holding it all in, all it took was someone else to cry and I couldn’t keep it in. I told myself I wouldn’t cry until he was away from me in surgery, I had to stay strong for him. I couldn’t stay strong, I cried, I still tried to hold back the tears and keep them as minimal as possible. This would all be over soon.

While in the pre-op room we were told about an app called EASE we could download on our phone to be able to receive messages about how surgery was going. It helped ease the worry a little knowing we could at least know what was going on during instead of waiting until it was over. Once he was taken to surgery we still decided to go walk and ended up buying a fidget toy and a puzzle to try and help keep our minds off surgery. They didn’t help much, but once we got the first message he was safely asleep and they were fixing to begin surgery it helped to be kept in the loop. We received a couple of messages including one saying surgery went well and the final one included a picture of him sleeping saying he was out of the surgery room waiting to wake up from the anesthesia. That picture helped so much to know that brain surgery was over and he was sleeping peacefully.

He had a little trouble nursing at first due to the anesthesia but other than that he did amazing. He was tougher than I was, and recovery was quicker than I expected. By Sunday evening we were able to go home. Only a few days after brain surgery he was able to go home, can you believe it?

I will go ahead and end this post here, I’m sure it’s plenty long enough. I will save the after care and everything else for another time. I do want to thank you for taking the time to read my story, his story. This is something that was not easy to go through then or bring back every single memory of it now but I needed to get this out. Thank you for reading and I hope that if you’re going through something similar now you know you are not alone.

Babies First Christmas

My baby boys first Christmas has come and gone… well almost, we have one visit still to make next week.

I can’t believe how quickly it came and went. Everything was going by so fast we barely got the tree up, lot and decorated in time and didn’t decorate outside other than one yard piece. I have to remind myself that for his first Christmas it went well. We went out of town one day to visit family, had all grandparents over Christmas Day for lunch and he did great. Jax did so good unwrapping gifts I was impressed! I’m sure it helped that his birthday is in January so first Christmas is at almost a year old, but still, I am one proud Momma.

Not everything went as planned, but it was a great Christmas. I’m looking forward to next year when we can really start some great traditions with him.

Goodbye Breast Pump

I’m free! That’s how I feel now, no more lugging my pump and supplies to work daily, washing parts daily, keeping up with enough clean bottles daily. I’ve done it, I ditched my pump. I can’t begin to tell you how much stress just vanished.

This wasn’t exactly planned this soon. We haven’t quite made it to the one year mark. However, the past few months what I’ve been able to pump each day has dwindled down to just 2 ounces total. We have been supplementing with formula on the days I work for 2 or all 3 bottles but seem to have no problems nursing Morning, night and weekends.

This week started by drop from 3 pumping sessions while at work down to 2. Monday went as expected, I got very little milk. Monday night I was tired and decided to take advantage of pumping less and decided to just use the one pump set twice rather than wash both sets I used out of laziness. Tuesday rolls around and my first time to pump comes. I close and lock my office door, get my Medela pump in style tote bag out (I am so glad I went with this set) and start to get set up. That’s when it hits me, I have enough of the valves, membranes and connectors, but only 2 shields. Those 2 shields are sitting at home.

My first thought is to get them, then I start to plan out a day without pumping. It’s like a day dream, I’m not spending time to pump such a small amount then get stressed because I can’t seem to build my supply up even a little no matter what I try. I think this is a blessing forgetting I needed those shields. I decide to see how the day goes without pumping.

There was a little discomfort but since the next day I had a huge offsite meeting I decided to see how day 2 went. I still nursed in the morning, was able to not worry about sneaking off and finding a private space to pump, and nursed again at night. Again I had some slight discomfort but this was working.

It is now morning of day 4 and I’m loving being pump free. Especially since Little Man is back to waking during the night, having less to remember to wash, pack and haul to work has been nice. I’m a little worried about how this weekend will go as I hope to continue to only nurse and not give formula. Since I’ve only been nursing Morning and night will that lead to having to give formula during the day on the weekends even though I’m with him? I hope not, I have just a little over a month I hope to continue to nurse when I’m with him. With the cost of formula it would be nice not to have to make 6 more bottles a week of it, but time will tell.

The plan was to wean off the pump dropping one session every few weeks, that plan has officially gone out the window!

To those who pumped I applaud you. If it was just for a short time, or long term it isn’t easy. No matter how you have chosen to feed your baby we all have our battles. We all are doing amazing even when we don’t see it ourselves.

Are you a pumping momma? How do you plan to ditch the pump?

Already ditched the pump? Did it go as planned?

Never pumped? What plan do you or did you have to wean off of strictly nursing or formula?

*Please do not leave rude comments or opinions on those who choose to feed their baby different than you.

Christmas Traditions

It’s that time of year again, December has arrived. I love Christmas time, the decorating, baking, gift exchanges and the family time. I am not a fan of shopping but I do love trying to be somewhat creative at picking out and designing gifts.

Holiday baking, who doesn’t love some fresh sweets?

Every year as a tradition I make Puppy Chow and cookies. I try and make a new recipe each year as well as a few I’ve done before. This year I will be adding one or two fudge recipes to the mix, my normal puppy chow, a couple cookies and maybe Christmas tree brownies again. What sweets do you make each year? Do you have one must do recipe?

As a couple, we have a few small traditions we do. Orange danish Christmas morning, we do stockings for each other, watch A Christmas Story typically more than once Christmas Day and each year I put together a date night gift from Santa. Yes, we are adults and I write from Santa on the gift. Putting to us from me just doesn’t seem as appropriate to me.

This year with it being Little Man’s first Christmas I want to start a few new traditions. Christmas Eve I would like to do a gift with PJ’s, a Christmas movie, hot cocoa when he gets older, and maybe a book. Last year during the after Christmas sales we bought a countdown pillow we will use. I’m not sure I want to jump on the Elf on a Shelf train, but I have seen some great ideas if we ever do.

What Christmas traditions do you have? I would love to hear them and might even make some of your traditions ours!

I wish you would ask

I see you staring at my sons head. I can only imagine what must be running through yours as you look at the bulge and accompanying scar on the back of his head. Rather than guess why don’t you just ask? Honestly, I wish you would.

I would love to share with you. To tell you he has a medical condition called Hydrocephalus. That bulge you see, that’s his shunt. It’s a valve with 2 catheters, one goes from his ventricles to the shunt the other from the shunt to his stomach. This helps to drain the excess fluid in his brain. This device is saving my baby boy.

Why do I want to share this with you? Many reasons, but mainly for awareness. Until I was told it was possible he had this condition I had never heard of it. He might have been diagnosed sooner if I had and known the symptoms.

Awareness goes a long ways. Take for example breast cancer. How many people are aware of it? Better yet, how many people aren’t. When October rolls around how likely are you to donate to breast cancer fundraising? My guess is highly likely. Breast cancer is unfortunately a fairly common thing. You most likely know someone who is going through it or has in the past. It hits home for you.

What about Hydrocephalus? If asked to donate would you think something like I don’t know what that is, or maybe that doesn’t effect me. If given the question to donate to either would you choose breast cancer because you can relate to it more?

I know I’m now going on a fundraising tangent. Sorry, it lead to that. Back to you asking instead of wondering…..

Awareness can not only help this condition to be diagnosed sooner if the symptoms are better known, but can also help people understand what we as parents of children with Hydrocephalus or adults with Hydrocephalus may be going through. Even in the best situations like with my son where there are no other complications there is always the concern of when his shunt will fail. As our neurosurgeon put it, it is mechanical, it is not a matter of if it will fail but when. The only way to know it has failed is to be lucky enough for the timing to allow it to be caught on his annual MRI or once he is showing symptoms.

What are the symptoms? It varies but most common are headaches, nausea and vomiting, fever, sunset eyes (eyes stay looking in a downward direction) and sometimes loss of appetite. Symptoms won’t present themselves until there is already pressure on the brain.

So what I’m getting at here is please ask. Who knows, maybe one day you will be glad you did.

Do you have anything you wish people would ask you about rather than just stare?

Thanksgiving

I’m a few days late writing this post but things have been crazy. It seems sleepless nights are the new norm for now and with Little Man starting physical therapy and having exercises to stay on top of at home I’m feeling a little overwhelmed.

Ok, enough complaining…. Thanksgiving, the time of year when it seems you get more family time and lots of cooking. We have two family recipes that are a must for the holidays. Either both are made or at least one. We made both last week. My wonderful husband seems to have taken over making the oh so delicious chocolate mint pie (recipe to follow) and I made my Grandmothers homemade Mac ‘N Cheese recipe (not sure I’m ready to share this one just yet, maybe for Christmas).

I love holiday family get togethers. There’s always great food and a chance to catch up with everyone. Having a little one takes up some time and we seem to be making it to less family get togethers so having the time off for the holidays is nice. Back to the food, I love eating but I must admit I’m a picky eater. Having such a spread of options for me to find some I like is great. The turkey, mashed potatoes and of course my homemade Mac ‘N Cheese are a must on my plate. Those seem to be my thanksgiving favorites. What are some of the foods you like during the holidays?

Back to dessert…. chocolate mint pie!!! Being new to the blog scene I’m not yet sure how to create a page just to link it with the recipe so I’m posting it below for now.

Chocolate Mint Pie

what you need:

1 1/2 sticks margarine or butter, softened

1 1/2 cups powdered sugar, packed

3 eggs

4 (1 ounce) squares unsweetened baking chocolate

1 teaspoon pure mint or peppermint extract

1 graham cracker pie crust

Combine the softened butter with the powdered sugar. Once combined mix in the eggs one at a time. Mixing well before adding the next egg.

Melt the chocolate using a double broiler.

Add the melted chocolate mix well then add the mint extract mixing completely.

Pour the mixture into the pie crust.

Chill in the fridge for several hours. About an hour before serving remove from the fridge.

You can also freeze if making ahead of time, be sure to move to the fridge the morning of serving or the night before.

Carrying a Rainbow Baby (Past)

Remember that Loss, I am 1 in 4 post? After two miscarriages we needed a break. No more trying for awhile. I needed time. Then, my period was late. I attributed it to stress, my lack of a decent sleep, anything, but I couldn’t be pregnant. Wasn’t possible. A few days went by, I finally decided to take a test to prove to myself that I wasn’t pregnant. To be honest we had had sex once. One time. After everything I wasn’t really in the mood much.

That test I took to prove to myself I wasn’t pregnant, you guessed it, it was positive. I was home alone, my husband already at work. I stared in disbelief for a moment. Then my thoughts ran every which way. How? Well I know how but after one time! We weren’t even trying. Why? Why now, why when I had temporarily given up? When will it end this time? How long before I start bleeding? I CAN’T DO THIS AGAIN! I just can’t.

I got my thoughts to slow, sat on the bathroom floor and called my husband. I called him, crying and scared, to tell him I was pregnant, again. Looking back I should have taken that test when he was home. Home to comfort me, home so I wasn’t scared and alone. But I didn’t.

I called the doctor to let them know and they sent me a prescription for progesterone and scheduled an appointment. I dreaded that appointment. I thought about the outcome of what it would be and prepared as much as I could for the worst news. I was wrong, I hadn’t lost the baby.

After each appointment I had hope, then as the past appointment faded and the next approached my hope turned to worry, to stressing that we would get bad news. Each appointment I had an ultrasound. Each time I left happy, but as time passed I dreaded the next appointment. 

Once I could feel our baby boy kicking it was easier. I didn’t have to wait until the next appointment to know he was ok. I worried less and finally started to enjoy my pregnancy. 

Our First Pumpkin

Today we carved our first pumpkin. Our first pumpkin as a couple, and baby Jax’s first pumpkin. I hadn’t carved a pumpkin since I was a kid, and even then I don’t recall how much of the carving I actually did. 

We decided to carve out Mike from Monsters Inc. Jax has a set of footie pj’s and a cap that are Mike so they sort of turned into his Halloween costume since we won’t be going trick or treating with him this year. 


Hubby started the adventure with carving the top off and cleaning out the guts. Jax got to play with the lid and what guts and seeds were hanging from it. He enjoyed it and even enjoyed the munching on his hands covered in the pumpkin juice. 

The final product I think turned out pretty darn good for our first pumpkin. Maybe next year we will take on 2!

Our first Hydrocephalus Walk

Today was our first year attending the Walk to End Hydrocephalus. I am so glad I found this walk and look forward to attending yearly. 

The weather was great for the walk, not too hot and the rain is holding off until tonight. 

There was a bunch going on with the walk. They had a handful of character appearances including Snow White, Belle, a Storm Trooper, Maui, Wonder Woman and more. There was a T-Shirt contest which I am proud to say our team won. Mainly due to the phrase on the back below the shoes “because I give a shunt”. They had coffee and breakfast for us. A DJ that did a great job, a few vendors giving away goodies such as stress balls, frisbees and cups. The fire department was there and even did a CPR class. 

I met another Hydro Warrior and it was nice to hear her story. There was also another warrior around Jax’s age, unfortunately I didn’t gets chance to meet with her or her parents but my mother in law did and heard her story. I hope to be able to meet them at some point in the near future. It would be nice to have someone around Jax’s age that also has Hydro for him to hang out with. 

Can’t wait for the walk next year! Until then I will continue to raise awareness for Hydrocephalus and do whatever I can to help.