The count down

Ever feel like a ticking time bomb... lol!

By this time next week we will be holding our baby girl! I think everything is ready!

We have been trying to take the past few days a little slower and rest. I am super tired right now. Jilli has not thought that sleeping is all that important lately (like falling asleep after 10pm most nights and getting up some mornings between 5-7am) and end the joys of trying to sleep 9 months pregnant and I have watched my fair share of TV in the middle of the night lately. Anyone who says to try to sleep as much as possible at the end of pregnancy probably has not had the opportunity to try to sleep at the end of pregnancy.

I am just going to bullet point a few things going on:

-On Thursday last week I got a call from the ped nurse that endocrine was now saying they were not sure why anyone said the ped needed to call endocrine and that we should be able to schedule an appointment. Friday I got a call from endocrine saying that we could schedule an appointment but then the scheduling person tried telling me that I needed to have the ped call. I put my foot down and we got an appointment for the end of July. Monday the ped nurse called and said endocrine called them and wanted Jillian to have her thyroid level tested and if that came back off then they would see us sooner then the end of July. I took Jilli to the clinic to get her blood drawn. I normally don't do Jilli blood draws anywhere but Children's but this one was ordered to Aurora... 3 techs, 3 needle pokes, over 20 minutes of digging in Jillian's arm and we finally got one vile of blood. It was rough, however I was really proud of Jillian. She cried and kept telling us she wanted to leave and did not want to be poked anymore but she sat still and did not try to get away or hurt anyone. Her thyroid level came back normal. My thyroid level always comes back in normal range but I have been on thyroid meds since I was 19 because without them I have thyroid symptoms and being on the meds the symptoms go away. We will see what endocrine has to say.

-Pooping has gone back to normal, infact this week I got the fun of cleaning up an explosive diaper... she may have drown a few of her toys in poop and left a poopy footprint trail...

-On Friday Jilli and I went swimming at a friend's pool. Jilli LOVED it! She has a little floaty boat the fits her and her oxygen tank. She loves that she can kick around and move herself. I forgot to put sunscreen on us... I ended up getting sun burn... Jilli is still as pale as ever. Thinking about it Jilli has never shown the effects of the sun on her skin, I am glad that she has not (I was rather sore!) but its a little odd.

-Last weekend my parents and Dan came over to help us work in finishing the door and chopping up the tree. We still have a little work left to do on the door but we are getting closer to having that project done. The joy of home ownership... house projects!

-Last Friday we stopped for ice cream after going to Menards to get supplies for door trim. A little girl in line looked at Jilli and told her dad that Jilli must be a baby because she has a passy. The dad told her no Jilli was not a baby but the little girl kept going on and on about how Jilli is a baby. Jilli HATES being called a baby (she really needed the passy in at that moment, we were someplace with food which causes her reflux to act up). Jilli kindly told the little girl that she is not a baby, however the little girl just kept saying it (her parents looked like they wanted to crawl under a table). I ended up just taking Jilli away because Jilli was starting to get upset. We moved someplace else and Jilli looked at me and said that her feelings were hurt because she is not a baby. The next day it was still really weighing on her. We talked about how the little girl was not trying to hurt Jillian's feelings, she is just trying to understand why Jilli has a passy. I was really proud of Jilli though because she calmly and nicely stated to the little girl that she is not a baby. She stood up for herself without being rude. Honestly she handled it better then most adults would. Jilli is going to have to educate about her differences in her life and if she always handles it like she did that night I will be very proud of her.

-We have a love/hate relationship with our med supply company... they supply the things we need for Jilli but at the same time they frequently make me want to pound my head on a wall. After we upped Jillian's oxygen to 3/4lpm I called and asked them to bring 11 tanks a week instead of 8. At first they told me they needed a new script from the doctor because they were not informed about the increase. I called the doctor and got a script sent over. Last week they brought 11 tanks like we ordered and I thought everything was good. Earlier this week I got a call from them asking if I was aware my child is on oxygen... umm yeah! So then today the guy brings 8 oxygen tanks... I call and for some reason it was not changed in the system to 11 tanks. So now it has been 4 phone calls! I am hopeful that next week they bring 11 tanks.

I have had lots of Jilli cuddles lately. She can tell things are about to change and has been very close to mommy lately

Getting closer!

Queen of drool!

She told me her tummy hurt and she was going to puke. Thankfully she didn't. I hooked up a drainage bag to her tummy which helped

My big girl!

She got herself ready to go to the pool :)

In her new swimsuit!

Swimming in the pool

About 2 minutes after leaving the pool she was out!

An odd Jilli picture, her taking a nap! Swimming knocked her out the rest of the day. She took a long nap and then rested most of the rest of the day

We only got 2 days of use out of this cunula before it broke... I am not that strong!

She told me I needed a check up

She is just a little type A like her mommy... all her people lined up in rows

Mom and Dan cleaning up the tree

Dad and Brent working on trim

She came to listen to the baby's heart beat :)

She decided that this is her yoga outfit! She insisted that we did some Cosmic Kids yoga.

Resting after PT and getting her blood drawn

Poor mickey... face down in Jilli poop and it is running out the front door!

Cuddles!

I am not a big alcohol drinker... a glass or two of wine a year is about it for me, but for some reason last week I really wanted some cherry wine. Sadly none of the stores by us have a non alcoholic sparkling cherry that does not have apple in it, but I found this, sparkling non alcoholic strawberry daiquiri, and while it is super super sweet it made me smile and is safe to drink with a little one in me!   

We were cuddling in bed the other night and she told me she just needed to hug her sister

Playing Zingo together

I painted her toe nails again for her yesterday

How her one arm looks after her blood draw

ready for story time at the library today. Her shirt says "Beauty and Brains" which is so true!

Waiting for story time to start. After story time we tried to go to the farmers market but it started raining... another week we will make it to the farmers market... she was rather bummed but decided to come home and play market with her princesses

Its June!!!

We are having a baby THIS MONTH!!!!

I think we are ready... we are down to the puttery little stuff. I spent my morning cutting out stickers for Jillian's oxygen so I would not have to worry about that between now and for a little bit after baby comes. Hospital bags are packed and everything is set for Jilli. I am ready for the baby to be out... but as a second time mom I know how it feels after (I don't handle anesthesia well and I am not a quick bounce back from surgery person, its just not how my body functions, something I struggle with sometimes because I see other people have a surgery and be out doing stuff quickly and for me it takes my body longer, but as I have gotten older I am learning to accept that my body is on its own schedule for healing and trying to rush or get mad about it does not help anything, it just makes it hurt worse and my emotions more intense) so I know I am trading one set of discomforts for another but it is all worth it! I will miss feeling her kicks inside of me, but I am ready for the rest to be over :)

If you are wanting to come and visit us in the hospital we will be happy to see you and introduce you to our bundle of joy... however right after her birth we are going to be taking a little bit of time just the 4 of us. Nursing was never something that was easy with Jillian so I want to give us a low stress first feeding and I want to spend time with Jillian and the baby and her getting use to her sister before we have extra people around. If you would like to come the day she is born please text or call us first to see if we are taking visitors yet... part of it will also depend on how the baby is doing and how I am feeling when we start having people visit. We will be in the hospital for at least 2 nights so there will be plenty of time to come see us! We appreciate your understanding and look forward to everyone getting to meet our newest addition! 

We have been trying to spend extra time with Jilli doing fun things lately. Today Jilli and I are having a pajama day and watching movies (we watched Father of the Bride II, one of my all time favorites... yes I cried when the babies were born lol) Yesterday was one of those days I just had to keep reminding myself that even when things are crazy everything is still good! We were working on getting out the door to my OB appointment yesterday morning and Jilli was walking from the kitchen to the living room to turn off her oxygen so I could switch her to a small tank. She fell over and caught herself with her face on the wood floor. Jilli falls a lot and frequently we tell her to get up and walk it off however this time by the sound of it I could tell it really hurt. I walked in and picked her up and noticed blood all over. It took a minute to figure out the blood was coming from her lip. She has never had anything really bleed before and never a head wound so the amount of blood freaked her out. I was more worried about the fact that she was choking on the blood because she does not know how to safely clear it out or her airway. Thankfully I got the bleed to stop rather quickly and its just a small cut that did not need any medical attention. Being a teacher I have had my fair share of kiddos do stuff to cause their face to bleed so it was not that amount of blood that worried me, more just her airway. We then headed to my OB appointment where the doctor was delivering a baby so I met with the nurse instead which is fine. She helped answer a couple questions I had about the hospital I'm delivering at (not the same one Jilli was delivered at) and listened to the baby's heart beat. We were leaving and I stopped at Claws in Lake Geneva (one of my favorite places to get take out!) and ordered a large raspberry iced tea. I love the fountain raspberry ice tea while pregnant (I drank it a lot with Jilli) and not a lot of places have it so since we were right in the same area I stopped and picked one up. When we got home Jilli asked if she could play outside for a little bit and there was a nice breeze and she was already hooked up to a tank of oxygen so I told her sure we could play outside for a little bit. I set my tea on the rail of the deck and went to dump the water out of her car and knocked over the ice tea causing the cup to break into pieces. I was bummed to say the least! Jilli noticed it and started to cry. I asked her what was wrong and she said she was just so sad for me that my tea fell and I could not drink it. She then told me it would be ok because she knew daddy would help to fix it. It is so sweet that she knows how much her daddy loves and takes care of us! We played outside for a short while until she started to get warm and then came inside and did a floor puzzle together. Later in the afternoon she was playing with her Little People princesses with the pirate ship. She was kicking and hitting the ground and I thought it was just part of what she was playing until I noticed she had peed all over the floor and was splashing in it. I got her all cleaned up and later that night Brent gave her a bath. Somedays having a kid is just messy :)

This weekend we worked  on house projects. Our back door shattered a week ago. We have no idea what happened but knew we needed to replace it. We also had a tree in the front yard that was dead and needed to come down before it fell. There was also a fan in my car that was not working (and sounded rather loud), so Sunday we had some people come over and help us with all of those projects and I am so grateful for their help! On Monday Jillian's friend Caroline and her family came over. They live several hours away but we try to get the girls together anytime they are down at Children's (Caroline and Jilli relate in many ways...) and Monday was the first time we got both of our families together (typically it is just the moms and girls that meet up). It was a nice afternoon hanging out. The adults played games at the table and the girls all played so nicely in the play area. Jilli was so excited to have Caroline over to her house to play! It is also so nice to have someone who can relate to raising a child with medical needs! Oh, and on Saturday my mommy took me to get my toe nails done cause me painting them myself sure is not happening right now, lol!

Jilli medical updates:
-We have increase her CoQ10 to 40ml daily (she was getting 5ml 2x daily). We are able to add the extra amount into her pump which is really helpful because we can only push a limited amount of things in with a syringe without it being painful for Jillian. Since increasing her CoQ10 we have seen much better pooping and have been able to drop her laxative down to 5ml 2x daily!
- The upped oxygen is really helping!
- Still trying to figure out what is going on with Endocrine. I feel like that is a cat and mouse game right now. I called to schedule, they said they needed to talk to Jillian's ped before they would schedule us... well that was a week and a half ago and I have not heard from anyone. I sent a message to Jillian's ped today to see if by chance she knows what is going on. Jilli is having issues with overheating and with random times were her hands feel like they are ice cold. Something with temperature regulation is not working in her little body and we need to figure it out.
- I have not heard anything from genetics....

Brent and Jillian playing with her microphone and books

Hanging out in downtown Lake Geneva (Yes that is the best face I got of Brent)

Jilli sitting on her bike playing bubbles

Jilli has been insisting that she and her sister needed matching 4th of July outfits. I didn't want anything that said 4th on it (I think clothes that can only be warn one time are impractical) but each time I would find something they would not have it in the right sizes for the both girls but we walked into Target the other day and they had a red white and blue outfit that was in the right sizes for the girls! Jilli carried them through the store

Down comes the tree!

Jilli and Caroline playing a game together

Jilli and I tried out the Ergo the other day while I vacuumed. It worked well but I think it will work even better when I'm not pregnant :) Jilli has started hating the sound of the vacuum and curls up and screams while covering her ears when I turn the vacuum on so this by far is the most effective way to vacuum right now because then there is no screaming (screaming like that for Jilli turns into her puking quickly)

Jilli and Brent cuddling

She told me she needed to cuddle her sister :)

Coloring time

Resting in her chair

My raspberry ice tea :(

Doing a floor puzzle together

Brent and Jilli cuddling last night :) She loves her daddy (and so do I)

Thats a wrap!

We had a little celebration here yesterday morning after I told Jillian we were done with the plastic wrap!

We got three poop samples! It only took from Monday to Saturday night to get them, but hey we got them! The first  two poop tests came back this weekend as negative. The one was for c-dif which I was pretty positive she did not have and the other was for bacteria which also came back negative. Brent dropped off the third test on his way to work today so we will see what that comes back with. She has still been at the 7ml of laxative twice a day and really she should be pooping all over the place however her poop has gone back to its normal consistency. Her little body just likes to confuse us all!
I am just thankful that we got the three samples. It was a long week here wrapping her butt and it did not make her very happy (and I don't blame her!). The last test we were trying to finish needed to be done within 8 days of starting and I was getting stressed that would not happen so its a huge relief to have it done!

On Friday Jilli and I were having a chill day just attempting to get poop (we did not get any poop Friday). She was not in the best mood so we were kind of laying low. My dad and brother called me and they were 10min from my house playing disc golf and wanted to know if I wanted to join them for lunch. Jilli and I met them for lunch and then we went over to a park to play. I have never seen flying, biting ants before but this park was sure full of them! Jilli still enjoyed it but we did not stay for long (they really thought my dad was tasty!) Jilli had been asking to go to a park and play rocket ship (a few of the parks in Lake Geneva have play rocket ships) so we met Brent after work in Lake Geneva and she played on the rocket ship for a while and then we walked to Pot Belly and got dinner.

Saturday morning I woke up to Jillian yelling for Brent. He had told her the night before that they could play with her new kitchen in the morning and she was like a kid on Christmas morning who could not wait to play with their new toy. She came and laid in bed with us for a while and then she just could not wait any longer so they went down and played kitchen. During the day Saturday we worked on cleaning around the house and a few house projects. Jillian actually took a nap! I went to get the vacuum and turned around and she was asleep on the couch! Saturday afternoon we did maternity pictures in the same park that we did Jillian's. Our friend Jenny took the pictures and Tim made Jillian smile! After pictures my parents met us all at Spechers for dinner (we did pictures in the park next to Spechers). After dinner we all came back here and Jenny edited pictures and the guys had a fire in the back yard. It was a really nice evening!

Sunday morning we had church and then a picnic with our small group at Pets. Jilli loved the pretend log cabin and she even got Brent and I on the teeter totter! Pets holds so many great memories over the years (my parents use to bring me there when I was little, Brent and I met there at a Boy Scout picnic, we had a picnic there the weekend of our wedding and many dates there). Jilli got to try out her new cooling neck band from Caroline. It really helped to keep her cooler (Jillian was full of sweat just from the car ride over and we had the ac on) We were there for a little over 2 hours and Jilli had three times of 15min each were she played at the park, the rest of the time she spent in her stroller coloring or playing iPad. By the end her legs were so tired she could no longer walk. We went over to my parents because while we were at the picnic they took my tires to be balanced because I got them rotated and they were not properly balanced so that needed to get fixed so they helped out by dropping my car off and picking it back up for me. Once we got to my parents Jilli said she was too hot to be outside and needed ice packs to help cool off. Mom and I ran to Kohls looking for nursing tanks but instead found a bunch of 2T t-shirts on clearance for a couple bucks each and she has started to move into some 2T stuff (sometimes 2T stuff is skinnier then 18 or 24 mo stuff so it fits her better). We grabbed some dinner and then headed home. Jilli fell asleep in the car around 8pm. She woke up for a little bit around 9:30 and then again at 10. After 2am she woke up for about an hour and was really upset that she could not go outside and play right then. I am not sure what that was all about because at first she was mad that bees need to be outside so I am thinking she had a bad dream about bees and then all of the sudden it turned into her being mad that we would not take her outside in the middle of the night.

We are getting close in the count down to baby.  I have an appointment and ultra sound tomorrow. As I was typing this post I had to take my rings off because my hands must have swelled during the night because all of the sudden my fingers hurt. With Jilli I did not have to take my rings off until the day of delivery and I was hoping it would be the same this time. Its just a sign that we are getting closer to holding our little girl!   

Jillian helping me build her kitchen. My mommy taught me that girls can build things too and I want to teach that to Jilli as well

Shoulder Ride on Bumpa

She wanted to pump her legs just like uncle Seth

Ready to go down the slide

Playing with her kitchen with daddy!

Bat girl!

She fell asleep in her books

She decided she needed her head cooled off

She had to try on her new clothes over her clothes

The life around poop!

You know your a mom when your big goal of Wednesday was to take a shower and the closest I got was being peed on my 3 year old...

So Tuesday morning I got up and got everything ready to start wrapping Jillian's diapers. I went upstairs to start the process (Jilli was sleeping) and found her bed soaked in poop and pee. Like arms and back covered big mess. I woke her up so I could get her changed and cleaned up and the first thing she did was rub her eye with her poopy hand. Lets start this off by saying im fine with puke, ok with blood... I still struggle somedays with poop. I got her all cleaned up and put the plastic wrap diaper on her. She HATED it, and I don't blame her. I had an ob appointment and then we headed to Target. I needed to pick up meds. I also picked up a reusable swim diaper since that does not have the chemicals and fibers of a disposable diaper I figured we would give that a try. We also bought a potty chair. Not that I think potty training is happening anytime soon, but I figured hopefully I could get her to chill on that for a while and maybe catch poop in that. We went home and she sat on the potty chair for a while and played iPad. She wanted to get up so we put the swim diaper on. She peed in the swim diaper (for the test the poop can not touch pee) so she went back to the potty seat for a little while. She told me she wanted to get up and I told her that was fine but we had to do a plastic wrap diaper again and she decided that sitting on the potty seat was better then plastic on her butt. She sat on the potty until her foot fell asleep, which she had never experienced before so that was upsetting to her. After her morning poop in her bed we did not see any more poop on Tuesday. It was rather a long day for both Jilli and I.

Wednesday morning she got up and sat on the potty seat again for a while and then we put the swim diaper back on. She peed in the swim diaper but did not notice until the pee was running down her leg. Brent was working from home on Wednesday and needed to run to the store during his lunch break so he picked up a second reusable swim diaper. Jilli peed on the potty at one point but had no idea that she had peed until I looked in the toilet and noticed it (this is why she is not ready for potty training, she is fine sitting on the potty but she honestly still does not know most of the time if she has peed or not or if she has to go, the past few days has really enforced that. If she wants to sit on the potty and try, more power to her, but I am not going to push it as her body is not ready and it is cruel to expect her to do something her body is not ready for, she most likely will not be in diapers forever, this is just going at her pace) Wednesday we did not see any poop at all. We did have to use the plastic wrapped diapers a few times and she would just cry when we put them on her. For a kid who has a lot of medical stuff go one in their life and takes most of it with a smile its really hard to see her get this upset over it.

Thursday morning we got up and needed to head to Children's for her pulmonology appointment. They are doing work on the parking garage again and parking was a disaster! The problem with a 10:45 appointment is that most people are still in from morning appointments so the garage is really full at that time. Valet was so full it was hard to get to the parking garage and there was not even a place to leave your car for valet if you wanted to so we headed into the garage and it took 20min to get a parking spot! The roof was even full! We headed to pulmonology. The nurse came in and we talked for a little bit and then I went to put Jilli on the exam table before the doctor came in and noticed that she had peed all over the place and was dripping. The doctor walked in to me attempting to clean up the mess. The doctor and I talked for a little bit. I explained that I am not expecting Jillian to start running all over the place and having the typical energy of a 3 year old, that is unrealistic, but at the same time it is not normal for her to sit and look at a wall for long periods of time and tell me she is too tired to sit up and play with toys. The doctor agreed with me. Since bumping her up to 3/4lpm her energy level has started to go back up which I am really grateful for. The doctor said to leave her at 3/4lpm for a while and during the summer when everything is stable and her other areas are looking ok to try to go back to the 1/2lpm and then we will know based on how she does with that what flow rate she needs when multiple areas are not having issues at the same time. We talked about her Sunday afternoon and the doctor agrees that it was an allergic reaction. For now we are keeping our follow up appointment that we already had for October but if other things come up then we will go back sooner.
On the way home we stopped at Target to pick up a prize for the class that won the coin war at school. Jilli picked out pencils. We then went to school and Jilli got to put them in the kids cubbies which made her really excited. We came home and she sat on the potty chair for a little bit. Then she wanted to go outside. She has been asking for days to play outside but I wanted to give her lungs some inside time after Sunday, but yesterday I agreed to go out partially because I knew we needed to leave the house in a short amount of time so she would not be outside for long anyhow. We got outside and she played for about 5minutes and then she pooped!!!! I brought her up to the bathtub and had her stand and I took her stuff off. I got all of the stuff out that the poop needed to go into and started scooping the poop into the different containers. Just writing that is making me gag! Brent got home and I yelled for him to come help. While I was playing poop scientist he worked on cleaning her up which was a hot mess at this point because poop had run down her legs. I got everything where it needed to go and Brent got her cleaned up and then it was time to leave for dinner.
Brent's grandpa is in town and every time he is up we always go to dinner at Cracker Barrel with him and my parents and brother. Brent and I have been looking at different special baby dolls to get for Jillian as a gift when her sister comes and we walked in last night to Cracker Barrel and they had a bunch of the stuff for their baby doll line on clearance 70% off! The dolls were all full price but we were able to get her a doll, ballet set for the doll, carrying case and play kitchen for less then it was going to cost for just a Bitty Baby. I am really excited because Jilli and Brent's grandma always use to look at these dolls together so it means even more that we got one of them for her. I am also excited to have one more thing checked off my list of things to get done before the baby comes. Dinner with grandpa was really nice. It is always great to see him and he and Jilli enjoyed playing the peg game at the table together (Jillian's rules of how to play lol)
So this morning Brent left the house with two of the poop tests in a cooler. The third test needs three different poop samples so it is not finished yet, but it feels good to have two of the tests done. He stopped at Children's on his way to work and dropped them off with the lab. Hopeful she poops twice today so we can finish the other test up! I think everyone here is ready to put the plastic wrap back in the drawer (I literally have been carrying a box of plastic wrap and stuff for poop samples in the diaper bag with me this week!) Yesterday the pulmonologist and I agreed that she does not have c-diff, which is one of the things that they are testing her poop for. I had c-diff in collage and there is no way with c-diff you would go a day without pooping. I am thankful she does not have c-dif, that is not something I would wish on anyone and it took a long time to get rid of it when I had it and it was very painful. So we will see what the poop samples come back to say. We are still waiting for all of her blood work to come back too. I also have not heard anything more from genetics this week, or about our referral to endocrine. If I don't hear anything by Monday from endocrine I will call her ped's office because normally when they put a referral in I get a call within a weekish time.

So here is to hoping for more poop today!

This is what I walked into Tuesday morning

If you are going to plastic wrap a diaper might as well make it festive right!?

I figured I should test out our new car seat so I know how to put it in. I wanted a car seat that was easy to install and I don't think it could be much easier then this. I will probably blog about the car seat at somepoint because I am rather impressed with it!

Jilli wanted to sit on my lap and play piano

The she went to playing foot piano

putting pencils in the cubbies at school

Loading all her tools in her car

The poop lab

Jillian and Great Bumpa. She loved getting to play with him!

Jilli and Seth having a battle in Cracker Barrel