It all just wears her out!

So I have questioned for many months why Jillian seams to get sick on Fridays. It has always been a mystery to me. Most hospitalizations have started on a Friday. We ended up seeing the alternate ped more then I would like because he was the only one in on Fridays for a long time. Then at 3am on Saturday it hit me, the week is too much. The running of the week, being in day care for 10+ hours a day 4 days a week, and getting stuff done at night gets to her. I think it is just a lot for her to handle and might be why she seams to crash hard once the weekend hits. Its not that we do anything crazy on weeknights. We try to keep it more low key.

This week was a little more crazy because we went to work 5 days. We were only there about 2 hours Monday morning, but then we had to run to Childrens, run to Kenosha, and run to Lake Geneva. She did not have a break day at home this week. 
This weekend she has crashed hard again. Around 2:30am Saturday we woke up to the horrible cough... the one that means puke is most likely around the corner. As I turned the light on it started to come. I grabbed her out of her rock-n-play and held her over the wood floor as she puked/retched/gagged/choked for 5-10minutes. Then she cried for a while. I turned on Jake and the Neverland Pirates on Netflix and about 1/2 way though the episode she fell back to sleep. I was up for a few more hours listening to her breathe and cough. In the morning the cough continued and she puked again. She screamed off and on during the day and was not acting like herself. By the evening she was doing a little bit better and not crying.

This morning she woke up around 6 coughing again. By 6:30 we were doing a neb because she could not stop coughing. Around 7ish she was puking mucus and stomach bile all over the place. We were grabbing whatever we could to try to catch it. We gave her a bath after she was done to help clean her up.
We went to Church and she was calmer and quieter then normal. She sat and played nicely. We have debated off and on over the last year bringing her into the Church nursery but that is hard when she is puking and such. I would not want to have them have to deal with that.
After church we went for lunch and she whined off and on through it. We stopped at Target and she was just dazed. She sat funny in the cart and looked that the ceiling most of the time. Not like her at all.

We headed back to my parents to put our stuff in our car and take off but by the time we got back to the house she was having to work at breathing so we gave her a neb. Once the neb ended we could not get her to stop screaming. No matter who held her or what we did. She did not want her stuffed animals, she did not want mommy, she did not want passy. It was a mind numbing top of the lungs scream for over a half hour. At that point we decided we needed to get her seen by a doctor. Something obviously was not right. This is not our happy go lucky little girl that you can poke an IV into and then she will smile at you after you are done.

We took her to the walk-in in Kenosha. We got our favorite nurse practitioner again (the one we visited when she had pneumonia). She said she read what has gone on since we were there last and then had us fill her in on what is going on now. We filled her in and she looked worried. She checked Jillian from head to toe. She looked in her ears and other then a little wax they looked good. She looked in her mouth and her throat looked good. She listened to her lungs and for just having a neb 2 hours earlier they sounded good. Then she touched Jilli's tummy and it became as hard as a rock and she started to scream. After a few minutes her tummy softened again and she calmed.
The doctor said that she thinks that even though she is pooping that her intestines are not moving well right now and it is making her poor little tummy hurt. She said she thinks she is puking because there is no where for the normal stomach secretions to go. She said to give her extra laxatives tonight to try to get her intestines moving and call GI tomorrow to see their thoughts.
Once we came home we gave her the extra meds. She has already had one blow out diaper. She has still had a few times of screaming, however at this moment she is sitting nicely and playing. She even just tried eating a piece of string....
Hopefully adding just a little more laxative will help her. It is hard because you can tell at times she is just in so much pain. This behavior is not like her. Yesterday we were trying to get stuff done around the house to start to get ready for her party in a few weeks. She cried so much we barely got anything done.

The one hard variable that is now going into this too is that last night was her last night of 1/2 breast milk 1/2 Elecare. The milk is almost gone. We are keeping the last small vials for her to drink (she prefers the taste) and those will be used up soon too. There is a little bit of breast milk left in the freezer at work that I have to bring home tomorrow but I think it is less then 10oz. One of the advantages that breast milk has over formula is that it is a natural laxative. It has always been my fear that formula would cause her intestines to move slower and then the day that she is to switch over her intestines decided to press on the breaks. But, there is nothing I can do. There is next to no breast milk left and once it is gone it is gone. She could not be on it forever anyhow so at some point we were going to have to deal with this.  Jillian got almost 11.5 months of breast milk, from my original goal of 6 weeks, I am amazed. It was a lot of hard work, loss sleep, worry and time away from her, but I think it helped her fight. Pumping and breast feeding are not easy, and I'm not sure if I will be able to provide my next kid someday with as much milk as I did for Jillian but at least I was able to give it to her.
Well I am warn out. It may only be 7pm but today it feels more like 11pm so I'm going to go put a few things away and then hope Jillian wants to go to bed early and that her body feels like sleeping tonight. I can hope right?

9.76kg

We are inching up there... watch out head of IR, we are going to hit 10kg yet!

This morning Jillian and I woke up less then 30min before we needed to leave for work, and believe it or not, we made it there with time to spare! After we got there they realized that Jillian made 5 babies in the baby room, thus I was not needed. We left about an hour and an half after we arrived.
When we left we headed up to Children's for a weight check. We were suppose to go Friday but we were down to one car so we went today. We hit traffic nicely and made good time. We smiled at our favorite security guard as we went in (is it bad that he recognizes us?) and headed to GI. We went to check in and they recognized us there too making check in fast. They took us back to the weight room and I undressed Jillian. We got her length and then I changed her diaper. Today is a day she has decided not to keep her pee in. We put her on the scale and she was 9.76kg (about 21.6lb for anyone who does not live in my metric world). Yeah! The whole time we were there she was super smiley! She was dancing for them without music too! She is such a ham around there!
We left the hospital and headed to Kenosha to pick up the forgotten meds. Then we stopped at my in-law's house so I could drop off their computer. We then left Kenosha and headed for Lake Geneva. We went to the new Joann Fabrics and picked up stuff for Jillian to start making Christmas gifts. I know it is a little early, but if I dont start them now it is just not going to happen. Between Thanksgiving and her birthday, Christmas comes up fast! We then ran to Target quick to pick up a few things and then headed home. We started on our Christmas craft (if you want to see what we are making go to the "Teaching Tips" tab on this page). I broke glass all over the floor and Jillian tried to eat paint, but we had a lot of fun. I even broke my no Christmas music before Thanksgiving rule because how are you suppose to make Christmas gifts without Christmas music?
Today when I was talking with my sweet friend Amanda, I was reminded of the awww of God's amazingness. (ps. my friend Amanda is an awesome person at helping you see God's amazingness!). Friday night into Saturday Jillian developed a dreaded cough again. Brent and I were scared, and in that fear I prayed out to God that he show us then and there if we needed to take her to the hospital. That it would not be days of wondering and second guessing. God answered that prayer! Jillian's cough is almost gone. Saturday night into Sunday she did not cough as much and was only up a few times crying (super weird for her to cry during the night) She only needed two nebs yesterday and so far only one today. God showed us! He took care of the cough! He helped us not to worry! And He created this great thing call coffee to help mommas stay awake when their kids don't sleep for two nights in a row! Maybe a lack so sleep was the reason I did not wake up to my alarm this morning....

The mom sigh

Sometimes you just have to cut yourself a little slack. Tonight we went to put Jillian to bed and realized her acid reflux meds were still at grandma and grandpa's from earlier today. They have to be kept refrigerated and are still sitting cold, exactly in the place they were left.
Today was kinda a crazy day in southern Wisconsin. A tornado watch was put into affect early in the day. By 10:00 the sirens were going off. As we watched the news in my parent's basement in our church clothes, we imagined what it was looking like at our house. We watched the Milwaukee news zoom in on the middle of nowhere Bloomfield and show the radar of the road we live on and say that we were going to be hit the hardest in the area. All we could do was sit, a half hour away and wait. We waited until the storm let up this afternoon and headed home, not sure what we were going to. We got home to nothing wrong. No damage, no power outage, nothing. Our home is perfectly fine.
However, when we left we were not sure of this so our minds were a little bit elsewhere, and we made a mistake and forgot her meds. Mistakes happen. At first in my head I wanted to blame everyone else, however I am just as much to blame, if not more for forgetting them and not double checking and blaming someone else just makes me mad at them and what does that help?
I'm not so mad about forgetting the meds, it is the affect of forgetting the meds. There is the inconvenience of  driving into town tomorrow after work. But more then that is the fact that it will hurt Jilli. We have seen what the lack of meds does to her. We know when we forget a dose that she hurts. I feel awful that my thoughtlessness would cause her pain.  Ouch, that stings, but there is nothing I can do now. I could sit up and worry all night, however that would just make it hard to get anything done tomorrow. I could drive into Kenosha now but it is almost 10:30 now and I would probably crash from driving while tired and we just put new tires on Brent's car today after his car accident this week. I could... I could... I could... I will try to let this go. Give it an opportunity to show us how the meds work for her and pray there is not too much pain in missing just two doses of a med. We will change a few things about tomorrow to give her the best chance at a good day and the least amount of pain. We will make this work. We have to, because what else are we going to do?

Frankly, I am proud of myself today for handling this situation so well. Jillian started coughing badly again Friday night. Her cough sounded awful! It sounded like when she was hospitalized back in March. I have heard it said before that having a child with ongoing health issues can be a little bit like having PTSD. I never fully got that until Saturday morning. The sound of that cough brought me back to the hospital and all the wires and everything we were having to do to help her breathe. Honestly, when Brent and I heard that cough we mentally started figuring out our week around being in the hospital. It scared us.
Today her cough has changed. It is still unproductive but not as scary sounding. We have given her a few nebs because she has been having a little trouble breathing, but today has been better. When the sirens went off this morning we were debating if we were going to take her to church and had just decided I would stay at mom and dad's with her to give her time to fight this. She had been rather crabby at times the past two days but the next moment she is giggling and smiling, because she is such a happy person that it just has to flow out of her.

The past week or so I have been really struggling with the thought of "are we doing all the right things for her?" We always want to do what is best for her and I ask myself frequently if what we are doing at any given time is the best thing with the information we have right now. Most of the time I am pretty secure in that, other times I find myself needing proof. Jillian and God always give us the proof... and typically then we are wishing we were not looking for it. She shows us her tummy can't handle food by puking her tiny bottle. She will throw her head back in pain hours after she will eat, even on meds. She will burp at you randomly when she had had nothing to eat in almost a day. She really does need all of this, sometimes I think I just see other kids and think that she can't be that different, and then she shows me her stuff, and I am reminded that God has shown us exactly what we need to be doing to help her.
 I think part of this right now it that we see GI again soon and we have heard for months that the game changes once she turns one. How it changes, I am not sure. What I know though is that we still need to do what is best. I would go crazy if I spent all my time thinking about the possibilities of things that we could do for her. Most days I need to just trust that God has brought us to the correct decisions and given us the answers we need to know. So we see what the future holds. He is still granting me that amazing peace that I don't need to beg Him to take it all away or feel sorry in all of this. He is still my calm in the storm, even when I doubt myself about choices in the this journey. (See I told you in that last post that I am not great at giving Him everything I need too...) 

sniffle sniffle

Jillian has a gross nose today! It is not a constant run but instead sneezes with a massive mess. Yesterday she was pulling at her right ear a lot. She has just been off today. We went to Target tonight and she did not smile for anything. Not even the Cinderella Little People which she normally lights up for. She was crying when going to bed too, which is something that is super rare for her.
Is it bad that when Jillian gets a cold I start thinking the worse and preparing for problems. Maybe it is her track record. Hoping this running nose just stays that. There is always hope.
Today she has also been attached to her passy. When she has sinus drainage it seams to slow her gastric emptying and she spends the whole day puking mucus into her mouth. Luckily so far today she had been able to keep in in her mouth and swallow it back down.

Last night Brent was in a very minor car accident. No one was hurt and they were going less then 5mph. He stepped on his breaks and nothing happened and ended up rear ending the car in front of him. There was no damage on either car. Today we took the car to a local mechanic. The figured out that it was the breaks that needed to be replaced. They were working on that today and we will be able to pick up the car tomorrow. We are just grateful that no one was hurt and there is no real damage. 

Over the last day our thoughts have been with our "family" at Children's Hospital of Wisconsin with the shooting that occurred there yesterday. Jillian's first two admissions were on the 7th floor (where the shooting occurred) What I can tell you is that some of our favorite people in the hospital are on that floor. They taught us how to do tube feedings and helped us fight for our daughter. What I can tell you as a parent who has spent much time there is that I am sure that everyone did the best they could in the situation at that time. They worked their hardest and tried to do the best for kids because the vast majority of people around there would not know what to do but the best thing for kids. Without a doubt I still feel very safe there. The security guards know Dan by name from him visiting so much when we are there. People make unwise decisions in all sorts of places. Sadly yesterday Children's was the place this person chose. I still trust them with the safety of my baby.

On a happier note, we are getting ready to celebrate Jillian turning 1 in a month! We are so excited to be coming to this day! It has been an interesting journey to get to this point and we want to share this day with all of the people who have supported us. We are having an open house style party on December 14th at our house. We invite anyone who has supported us in any way over the last year to join us in the celebration! This party will be a little bit different then the normal 1st birthday party because, Jillian thinks her normal is more fun! Please join us!

Thankful

Everyone seams to be dedicating their Facebook walls to 30 days of thankfulness, and I spent nap time today writing lessons about thankfulness, but the cheese of this holiday gets a little over the top sometimes. Sometimes you feel like it goes so far that you feel the opposite about the holiday, you just don't care because people make such a big show about it.

This year I have been blah about Thanksgiving. More indifferent, until I was driving home from work yesterday.

Kutless has a song out that part of the lyrics is "Even if the healing doesn't come, And life falls apart, And dreams are still undone, You are God You are good, Forever faithful One, Even if the healing, Even if the healing doesn't come"

I have always felt indifferent about that song. I have heard it over and over on Christian radio and have never thought much about it, until yesterday.


The song played and it hit me how blessed I am.

Last week I was reading a post from a parent on the Feeding Tube Awareness facebook page. Parent's were talking about life with a tubie. As I read the comments I could tell two different mindsets. First, The people who are making the best of it. They are trying to live life normally and do their best, even on days it is not easy.

And then there is a second mindset. The hopeless. The people who are so overwhelmed by their kiddo's needs that they have a hard time functioning. People that talking about their kids being several years old and they still cry every day at the thought of the way things could have been. These are people who's kids are not "normal" and many of their kids have life expectancies that are not hopeful. These are not people crying over spilled milk, but crying over how hard this is, the pain their child might be in, and the fact that they might not get to hold them for long. They have a right to cry.

But as I read their input I did not feel sorry for them, I felt sad for them. How debilitating must life be if you are consumed in searching for a magic wand. What if the wand never comes? What do you do then? How do you go on? What hope do you have in today, tomorrow, or forever?

This is where the song hit me. With all of Jillian's medical stuff I have never been left to search for a magic wand. I know my creator has got this. He has a plan.
Do I want the best for Jillian? Yes. Do I want her to be happy and healthy? Yes Would it be nice some days to know more pieces to the puzzle? Yes. But I have never felt the desperate need to go searching. Many people have asked me if we are going to try this or do that or what is next, and really in all of this, I am ok with living today. Today I have a sweet girl curled up on my shoulder sleeping with a little red adapter hanging out of her shirt. I don't know what tomorrow brings. Our lives can be rather unpredictable at times...
But He is God. He has this. He knows the story, and even if she is 95 years old and still has a feeding tube, He is God. He is Good. He is faithful. Even if the healing the world looks for is not there. I don't need God to prove healing in a worldly way for me to see Him in this situation because He is in every little detail. He hold us up. He knows the things to come and He grants peace. 

But, before you get on the "wow, Amanda this is deep, you must have an amazing peace about your life," you need to back your mind up. The hero of this story is God. He grants this peace, because if left to myself, I would be a worry machine. I am good at worrying. Trust me, I not not the Christian billboard most people would make to try to sell you God. I drift from Him at times. Sometimes I have doubted if He is even there or even cares. I am not this trusting in Him in many areas of my life. Sometimes I go weeks without praying, but in all of this thought I have never felt the need to beg God to take it all away. Ever. And that kind of peace, He grants,even when I am weak. 

So this year, one of the things I am thankful for (one of the SO many!) is that God has granted me this peace.  I can't imagine how hard my life would be today if my feelings in this situation where not grounded in Him. I am in awe of this gift that He has given me and am so thankful for it. And even if healing does not come in the way the world thinks, He is healing my brokenness, and that is worth far more.

Jillian 9 month video

Ok, I know I am behind on videos here since in 5 days she turns 11mo old, but to my excuse I can't make these videos at home because our internet cant handle it so I have to got to my parents to make them.

Without further delay, here is Jillian's 9 month video!

babable babable babable

Jillibean is back to herself. The other night she sorted everything on the bottom shelf of the bookshelf for me. She would take something off, study it and then put it in a pile. I am not sure what her piles were sorted by but it was super cute!

Today I took her to the dr office for a recheck for the pneumonia. Her pule ox was 99 and her lungs sounded clean. She loves to help them listen to her lungs by trying to hold the stethoscope, lol. I also mentioned to the NP that there are days that Jillian barely pees all day. She asked some questions about it. There seams to be nothing off about her those days other then her not peeing. The NP said to keep track of it but that it did not really match up with anything so she is not too worried. When we were leaving my not friend from last week was faxing something by the front desk. I was really hoping to not get into a disagreement, but he did not even seam to recognize her... that's better then a fight!


I realized yesterday that I have not done a general update about Jillian's development in a while so here is one:

Gross motor:

• She is crawling around with increasing speed. Just this week she has started to venture out of the rug in the living room and crawl around the main floor of the house.
• She pulls up on things including the couch and her toy bins. 
• She will stand up behind her new walker toy, however she drops to her knees if she wants to move it forward 

Fine motor:

• She can pick up tiny things (sometimes things so small I did not realize they were there)
• She like putting things in something else. She had fun earlier this week putting our Tupperware containers together. 
• She loves to see how things work. She is always exploring something

Language:

• She babbles a lot! She has started repeating sounds that we make. She has not started using any words to represent something yet, but she will say momma and daddy when she babbles.
• Sometimes when we say "bye bye" to someone she will wave and say "bye bye bye bye bye." Its super cute!
• When she is mad she will yell "MOM!"   

Health:

• There is still some question if she is hearing lower tones, sometimes the boys still like to play the game "can Jilli hear this?"
• She is still completely tube fed
• She eats 15ml of milk by bottle once daily. She has problems with reflux after and stops talking for a while some nights after she is done.

Prayer requests:

• We are fighting for insurance coverage for her feeding pump right now. Please pray for this to get calmer! 
• For guidance for the future. We have a few little diagnoses but not an overarching. This is still a question in our minds and knowing the whole picture might help us to help her better. 

Today is Brent's 25th birthday! Happy birthday Hon!  In honor of that here is a picture collage of Brent and Jillian:

As the pneumonia fades

I think we can officially say we are over the worst of this pneumonia! Today we did a neb shortly after she got up and then not again until this afternoon! Huge progress. My mom and I went to a store after church today and we commented on how different a week ago was. Last Sunday she was dazed. She did not make eye contact or smile. This week she smiled when we showed her Christmas dresses. My jilli bean is coming back to being herself. I'm not sure what was up with her at 3am today. She was screaming off and on for over an hour. It was very unlike her and she acted like she was in pain but with the help of grandma she went back to sleep. Something's with Jillian we will never have the answers to, and as long as she does not start screaming like that again tonight, I'm ok with not knowing why.

As a tubie momma I deal with many things that people would consider gross. To me it is normal. Many days we have explosive laxative poop, I will catch vomit with my hands, feet, clothing, ect, I change her g tube pad that is full of drainage daily, and many more odd gross things that don't really bother me. There is one thing that grosses me out. I think it is more to do with a texture then what it is. As we were leaving target today I picked Jillian up to get her in her stroller and she was soaked. I knew we had changed her diaper just a couple bourse before so it was not likely it was pee. I felt around and realized her g port popped open. It must have been open for a while because she was soaked. Her diaper was sagging from all the liquid and her clothes were almost dripping wet. By Just picking her up and moving her to the car my shirt and hand were very wet. This is my gross point. We took her to mom and dads and we both changed. Oh tummy juice, how you burn on skin!

Today we were talking to someone that we had not seen in our family in a few years. They were someone that our family use to spend a lot of time with. We were talking about the last year of our lives. I think it is kinda overwhelming for people to hear the overview of Seth's and Jillian's year. People just don't know what to do. But it's ok. It has been our journey. It is our stuff and everyone has their stuff. Our crazy journey. 

Jillian is getting so close to talking. She is really starting to mimic people. When she gets mad she yells "mom" and today my mom told her to say bye bye and she said " bye bye bye bye bye" we are going to have a talker soon. Right now she loves to make clicking sounds with her tongue and blow raspberries. She is still struggling with hearing low tones but we are still hopeful that she will develop that on her own. 

On a note that is discusting to many people, Jillian's poop is more and more red. I think it had to do with the meds she is on, at least I'm hopeful that's all it is. She also has a yeast infection in her diaper area again. We started to treat it with prescription cream again. Hopefully this time it is easier to get rid of. 

I want to thank all the amazing people in our lives. The people who have the supporting words and kind actions. I don't say thank you nearly enough! We are so blessed. Blessed by people that without this journey we probable would have never know. God uses situations and people to come together and lift each other up while praising HIM. The long nights would not be the same without the encouragement we get. Every Facebook comment, random hug, text massage, blog comment, encouraging word at church or just asking us how we are means so much to us. It reminds us we are not alone. So many of you show us God's kindness and many times have pointed us back to Him in this journey. I would love to say we have always relied on Him like we should but we truely thank those of you who have reminded us where hope come from. God blesses His children much more then we ever deserve but He loves us and out of love blessings come. 

I don't know how to walk with my new toy yet but I'll stand behind it.  :) 

We are getting there!

Progress! Progress! Progress!

Today we have been able to space out nebs! She does not start wheezing until 4ish hr after a neb. Tonight we were able to space out her neb treatments by 5.5 hr! Finally getting someplace! I am so grateful. 

Last night I realized that if we needed to do a neb every 4hr during the weekend we were going to run out of nebs before the dr office opens Monday. I however did not figure this out until after the office closed for the day. I had to call and have a dr paged. I got the dr I was not looking forward to talking to. I was hoping for a quick answer and they were sending it to the pharmacy... Instead we got into a disagreement about the use of a nebulizer. It was super frustrating, but I got my way. 

I am hoping we have finally made the turn. Hurray.

We have spent some time with my brother the past few days. This week last year we were starting a crazy journey with him. I had been having contractions for a few weeks at this time last year. Seth had what we thought was a stiff shoulder. Little did we know within a few days he would be fighting for his life in the icu. There was a time no one was sure he would make it. It has been a long journey and he still has almost daily pain but he is alive. He and jilli have something special planed for them. 

Here are some pictures of her taking nebs this week:

Some weeks you feel like you should just move in...

Man, I'm really trying to be positive, its just a struggle at this point this week.

Jillian has seen a doctor Sunday, Monday, Thursday and we will see one later today. Yesterday she got to meet the new nurse practitioner. Brent took yesterday off with her since Halloween is kinda a big deal in the preschool world so I figured it would be good for me to be at work. Brent called in the morning to give the doctor an update like they asked and at that time she was crying and wheezing. By the time they got there she stopped. One they left she started again. AHHHH! Her pulse ox did dip into the low 90s for them so at least the got to see that. Brent tested her pulse ox at home while she was sleeping and it was 88. Not where we want it to be, hence why they are having us come back in today.

She perks up just before lunch time and then stays a little better until around dinner time when she makes a fast decline again. The only time we can get her into the doctor though is in that time frame, so they keep seeing her at her best and not what she sounds like when we go to bed at night listening to her wheeze loudly.

This whole situation is playing into one of my biggest fears... the fear of not being believed. When I was in high school I got very sick but my symptoms and test results were not lining up. I had a doctor who I think still questions the validity of my illness. A doctor at Children's who had seen this before in teens figured out what was wrong and did something about it. That situation though left me with a major fear around the medical community. I have a hard time trusting that they believing what I am saying. I go into most appointments with the assumption that they are not going to believe me until I prove myself. This fear has carried over with Jillian at times. I dont want this fear to be there however sadly I have dealt with some medical professional that have proven my fear right before. So that leaves me just trying to do the best thing for her. Telling them the facts and bringing as much data as possible to help her.

Chilling with daddy, taking a neb

Happy Halloween

Goodnight world

Today it seams to take 3 people to give one neb, she was kinda feisty

And some days there are little reminders that our life is not normal