Blogging from my phone is getting frustrating. That's the reason you haven't heard from me.

Things at our house are going well!!

Zach and Emily were both diagnosed RSV and Croup. It's been a fun few weeks for our family.

They are both at the tail end of the sickness, thank goodness.

I am so ready to be healthy and get our little family back into our normal.

Zach is doing so well. Now that his sickness is almost gone, he has become so mobile again.

He is crawling and scooting! He has climbed the stairs!!

He talks circles around me! It's AWESOME!! I am happy! We will hopefull start school again for him. I am excited to finally get him in the routine again!!

Emily is off track again, her teacher said that she is doing amazing academically. She is in the top 1% of her class. She is reading on an almost 2nd grade level! I am so proud of her. The only thing her teacher is worried about is her social skills. She says she is often "distant." Considering the things that have happened in her life, esp recently, I am not surprised! We are working on that though!

She is doing well. I have put into place some new disapline and structure. It seems to be working well!

Things are finally moving forward. I hope to start school soon too. I am changing my major. I am not quite sure exactly what it will be yet, but I have a pretty good idea!

Stages of greif

Over the last few days I have gotten the feeling that people got the feeling that I expected Zach to be the same old Zach. That he would be doing everything he was before.

That is far from the truth. I hear people tell me at least he is alive, talking, home or remember he just had surgery.

While all that is VERY true and I feel so blessed to have those things, there is more to it.

From the very beginning of Z's life I have always prepared myself for the very worst possible outcome.

I still HAVE to do that. It's not something that I can just skip and move forward.

In this case, I prepared to watch my son die. I know that sounds horrible, but there was a reason for it. I have to go through the emotions and feelings so that if it did happen I wouldn't be blindsided. There has been many times when I have not been prepared and was hit with so much grief and heartache I was not able to function.

It also helps me celebrate the little things my children do. We cheer and clap as they poop or burp or sit up. It allows me to take a step back and really be able to see the hand of the Lord in our lives.

I also go through the stages of grief all the time. When Z was born we grieved the child, pregnancy, and normalcy that should have happened. This weekend I grieved the little boy who was taken away.

Everything I have ever known in my 33 years of life has gone out the window. The way we did things in my home has to change. EVERYTHING. This doesn't just affect me and Zach, but it affects Emily more.

She is struggling. She has been tossed from house to house, no routine. Everything about her home has changed. Where she sleeps, plays, eats, and watches tv. Then there is the fact that everytime zach had a seizure she didn't know if he would come home alive.

She was so scared for this surgery to happen. She was scared her brother wouldn't be the brother that she has known. Thankfully he is, but she is still struggling. She has been very sweet and helpful with him. She loves her brother so much!

I have been grieving for my daughter and the chaos she lives in. I am thankful and so blessed to have the outcome we have received.

Give me a day or so to grieve and I will be back to my happy self.

I wouldn't nor have i ever let this grief get in the way of taking care of my children. EVER! They will always come first. If you know me well enough, you know that's true.

More bad days and a bad night...

I am sitting in the corner of our hospital room watching the nurses clean off my Zachy and change his bedding for the 4th time in the last 2 hours.

I feel utterly helpless.

He is in pain and is not keeping anything down.

I know this was the best choice for us. I don't regret the surgery we just had.

I know it will be the best thing in the long run.

We just have to make it through all of this.

Right?

We are going to make it through this.

We just have to make it through this...

Family....

Someones life changed just now... that sound... From my bed I can watch Helicopters take off and land at the U. I have the most beautiful view. I can watch families come and go. I get to watch families who are taking home their child for the very first time. I watch tearful families leave holding one another as they go back to their homes, leaving their loved one here. I have watched my own family walk back to their cars and felt the tears stream down my cheeks. Wishing they would just stay ten more minutes.

As much as I love this wonderful hospital and despite the fact that I owe my son's life to them, most times it is SO lonely here. Now I know there are families here that have it way worse than me, who don't get to take their kids home and some just never leave. I am a person that deals with depression, anxiety, PTSD, and OCD. Yeah all of those things. All at the same time. Being here has triggered those things to come rushing back.

I do know when my limit is and I can tell when I am falling into the pit of dispare. I have truly  been blessed to know the difference in reality and crazy brain. I have a pattern, be strong, be strong, be strong, lose it all for an hour, be strong, be strong, be strong. This is how I have dealt with the hundreds of hospital stays, lifeflights, and ambulance rides. Often after I have my melt down I apologize to whom ever is there to witness it and I move on.

Today was one of those almost have a days. I say almost because every time would get close a nurse would walk in to do something to Zach. It was most annoying. We have a great night and morning. Zach slept well and the nurses were super loud. It was AWESOME!  Dr. Kestel came in to check out Zach and visit with us for a bit. He looked at the drain in Zach's head and decided to clamp it (turn it off making Zach's body do all the work) for the day. He said that he tolerated it well, they would do a CT scan in the morning and then most likely take it out. We cheered. Zach did well. Because they had turned it off we were told that we could go for a walk or get out of bed!! Zach wanted something else! "Mom get in it." So I did, I was able to hold and rock and just love on my little man for well over 2 hours. He was the most relaxed and comfortable I have seen him this whole stay. It was heaven, pure heaven! He held my hand and would squeeze it to make sure I was still there.


While we were resting our Physical Therapist came in to observe Zach. I got out of his bed and she played with him for about 5 min. He successfully kicked her hands with both feet, raised both hands to the sky, gave awesome high-5's, and got from laying to sitting and from the middle of the bed to the edge all on his own!

It was fun to watch. About 3 min in he was so done. He was shaking and asking to lay down. I told her that he needed to be done, she agreed, and left. I got him layed down and he immediately pulled the blanket over his head. I talked to him for a min and told him to go to sleep. I went over to my bed and started to read. He was so fidgety. He was complaining and groaning. He could not relax. I kept reassuring him that it was okay. Twenty min later I started to really worry, I asked him what was hurting. I started to get up and ask the nurse Kyle for some pain meds. As I sat up, Zach said my head. I watched as his little head appeared over the bed rail. His face was RED, he looked like we was in so much pain. I watched as 3 little lines of fluid flowed down his face. 

I FREAKED out told him to lay down. I opened the door and yelled for Kyle. It was apparent that the drain had been pulled out, but was still attached to his head by the suchers that were sewn into his head. He called for the charge nurse and she came in. They were putting gauze on his head to absorb the spinal fluid that was coming out of his head in large amounts. The resident was paged, he was at dinner with a girl, and had to come back to the hospital. When he got to our room he called for a soocher kit and some lidacane. Zach was hurting so much and was so red and just Hot to the touch. He jabbed the needle with the lidacane in it, into Zach's head to numb it. My heart was breaking into a million pieces. He only waited about 30 seconds when he started stitching the hole closed. It was then I started to cry. I couldn't watch anymore. I just held Zach's hand and head and sang to him.

The resident left the room with the nurse. They got to the nurses desk and I hear him say "Did the mother yank that tubing out of his head?" "The boy should not have be able to pull on it, the mom would have been the only one." At this point I was so depressed. I was thinking if I would not have been feeling sorry for myself this never would have happened. I should have been sitting with him, not in my bed reading. This could have been avoided. Not reality statements. Kyle our nurse came back in to check on Zach. He reassured me that it wasn't my fault and reminded me that what we just went through was happening tomorrow anyway. We just got done a day early.

I felt like I needed to explain to Kyle about the CT scan incident. There is NO WAY that I would have pulled that out. Zach hadn't even touched or tried to pull it out one time. I questioned whether the situation that happened after the CT scan could have cause the drain to be pulled out. Kyle looked at me and said he wasn't aware of such incident.

The nurse that caused the problem didn't document it in Zach's chart.

That news made me more upset. Zach is doing okay now. They say tomorrow we will be getting another CT scan to make sure his body is doing what its suppose to with the fluid that is in his head. If things look good he said that it would then be up to me do say when we are ready to go home. Although that might change seeing as though we were just told that Zach has C-diff. UGG!!!

I was trying to find my happy place. When in walked EMILY!!!!


All of a sudden my the hole that was in my heart was filled. My Lovey was back with me and I felt whole again. She is so much fun and had a hard time with seeing Zach. She hugged and hugged me. It was wonderful!

She is currently staying with her Daddy. He was nice enough to bring her for a visit, along with all the rest of his family. Then my mom came in. I just wanted our room to be quiet. That meant that Emily had to go...*sad face* She was happy because I could tell she was overwhelmed.

My mom visited with me and told me my sister and her 2 cute cute kids Saige and Kade were coming. They were going to bring me Rice Chex and milk! Thanks Meesa.

After they left I hung out with Zach holding his hand and just staring at him. I am so glad that I am in a place where I can be at his side through all of this.

There was a Knock on the door. My "adopted" parents walked in. Zach woke up long enough to say hello but fell back to sleep peacefully.

You know there is that saying "The lord puts people in your path at exactly the right time you need them?" Well that was Mom and Dad B. We were talking about Zach and his situation and how close to Christ he is. They just listened and encouraged. They cried with me and laughed with Zach. Zach was put on this earth to touch so many people. He is such an amazing blessing to people, not just me and my family.

I know I was handpicked to be his mother. That is an honor but it comes with lots of pressure some days.

Through this I have had a chance to see how many people TRULY love and care for my sweet little family.


I couldn't ask for more, because I feel like I have it all.

Kisses...

When I found out that this surgery was really happening I was so worried Zach wouldn't recognize me.

Then I was told that it was happeneing SO fast AND that he would lose his speech altogether I was so devistated. People told me to start teaching him signs again, however, he would also lose the use of his right hand and arm. 90% of signs require the use of both hands. I know that I could have let him make up his own signs, he did that for a really long time. I have found it so difficult for him to communicate to others that are not around him all the time. Sitting with someone for a half hour just showing them what signs he did was so frustrating. Most of the time they would just give up and Zach would end up sitting in a corner doing his own thing.

I wanted to make sure that when Zach was coming out of the sedation I could do something special to let him know I was there. I talked about our song.. It has come in handy the last 4 days. When we sing that song, I sing the lines and he sings the last word of the line. It's fun to hear him sing it.

The other thing we started doing was kisses. We give kisses all the time. Zach leans towards your face.. Puckers his cute lips and says.. MWAH! This makes me smile even typing it. I wanted to do some more than just "regular kisses."

I got an idea one afternoon, Eskimo and Butterfly kisses!!

So for those of you who don't know what those are... a quick lesson..Ready GO!

Eskimo Kiss....
    An Eskimo Kiss is a kiss that does not involve the lips. In an Eskimo Kiss two people rub their noses together gently.

Now Butterfly kiss....
   A Butterfly Kissess that does not involve the lips. It is when two people put their eyes close to each other and flutter their eyelashes. Think blinking really fast while pressing your face to another person.

Thus started Zach's love for kisses. Zach is funny.. He will only do things like this with very spacific people. I get most of the fun stuff, but Grandmas comes in a seriously close second.

Wow, I went off on a tangent.. sorry bout that...

I started giving him these kisses all the time. After a while he started asking for them. His favorite is the Butterfly. He says " d-ive me buhh-fy tiss. Then he points to the eye he wants it on first. We do have to make sure that both eyes get equal attention.

The Eskimo kiss was funn too..well... that is until he learned that doing them in super warp speed is funny.

After a while we made it a game. I would ask him for a kiss. He would give me a regular kiss... then he will say.. dive me buhh-ify tiss. I would then have to ask him which eye. He would point and we would get kisses. He would giggle and say.. hahahah "dat hunny" (that's funny.) Then he would ask for a "e-himo tiss." Then I would say HEY i need a REAL kiss... He would crawl over and roll his eyes at me... "mmmmwha."

A few days before the surgery he started asking people for kisses. He would randomly ask for one. He normally didn't do that. If you were leaving and didn't give him a kiss he would scream, as he crawled in light speed, "Wait...WAIT...WAIT...i'n tommin..Look at me... D-ive me a tiss...WAIT. "

Surgery day came and as we waited for the guys to come take him back he leaned over and took my hand. As he nerviously looked at me, he said mom... D-ive me buhh-fy kiss. Then it was eskimo followed by a real kiss... at that point he looked at me and said I wuh-u you mom.

As I walked back to his room in the PICU, I was nervious. After watching him respond to commands and crying. I heard this little wispering voice said.. D-i-ve me buhh-fy tiss. He had not fully opened his eyes yet. I gave him what he asked for while tears ran down my cheeks. It was one of those moments that I will never forget. After that special moment I got to hear " I wuh you mom."

I said a prayer of thanks to my Heavenly Father.  None of this would have happened with out him. I cannot take credit for this in anyway.

As I sit here in this quiet room, listening to Zach quietly talk and laugh in his sleep, I am reminded why I am here. I was given a job that I promised I would do to the absolute best of my ability. It is a job I cannot in any way give up on or give to someone else. I am the mother to 2 amazingly awesome children of God. He knew that I was strong enough to go through all that we are.

I have to remember that Zach is not the only thing in my life that is causing me stress and worry. I have a sweet and seriously beautiful daughter who needs attention that I can't give her. She is my lovey. She brings me joy and is the cause of a lot of frusterated and worried tears.

I wish I had 2 of me. One to love on Emily.. Hug and sing with her. One that could explain that when mommy leaves I will always come back. One that is so in love with her that she would do any and everything for. She makes me giggle and teaches me lessons I didn't know I needed to learn.

Sometimes is hard to understand why the Lord thinks that I am strong enough to be here... going down this pathway. The answer I remind myself of... I CAN'T be strong enough. I CAN'T do it all. If I could then I wouldn't need my Savior. I would have to rely on his love and strength. He has carried my little family for quite awhile. Only putting us down long enough to learn the lessons we need and to have the Faith to ask him for help again.

I would do this over again...this is how I have become Jenn.