Nuro!

Today we visited neurology. We got to see the Fellow first. I know its funny but sometimes I think it is sweet to see the med students and how hard they try.
They took weight with her clothes on and she was 19lb 6oz. We went into the room and weight for a long time. Good thing she is still easily entertained!
The Fellow came in and I gave her the entire Jillian heath history again. (Note to self: buy a tape recorder and tell the story to music.) He said that since Jillian comes to nicely from these spells and she does not shake at all or make any sounds that they think that it is not absent seizures! Plus her EEG looked good! He said they can not 100% rule it out because they did not catch her in one of these episodes during the EEG.
So what is it then? They think these absent spells are from reflux!
They think the reflux gets so bad it causes her to be absent. I now will take to the research about this and I can't wait to talk to GI about it on the 23rd! Now I am really wishing we could have gotten in sooner!
They said to call them back if these don't stop when she gets old, they get more frequent or we get worried.

In the afternoon we decided to get out of the yucky weather and hit up the mall. We went and looked at Janie and Jack to see if the dress I fell in love with is at a good price yet... sadly no. We went into William and Sonoma  to look at stuff to go with the sweet Zoku Jaime and Jason got me for my birthday! They had one of the accessory sets on clearance and they had an extra 25% off clearance! Score!
We stopped at Target on the way home. I needed to get something to organize all of Jillian's medical stuff. It no longer is contained in my night stand and I can not stand it all over the house any more! I bought something that I am hoping will work. I had a gift card from helping with a research study at Children's so I was able to pay out of pocket about 1/3 of the price. I love walking around Target! This Target in Milwaukee was nice too!

Today she has been teething a lot which equals to a lot of drool which equals random clear puke. It is lovely. I love when she pukes when she does not eat. She also likes to "eat" her spit up by chewing it once it comes up... yummy!

looking at fabrics for more pads for my tube

She did not cry for pain meds until 7ish tonight. She did great all day, but she let us know when she needed something :)

Meds

Jillian's new tube has a g port (going into the stomach) and the j port (goes into her small intestines). She gets all of her feeds into her j port. She also gets her laxatives into the j port. She also gets acid reflux meds daily and currently Tylenol. Both of those meds need to go into her stomach. Lucky for her they are both flavored and she loves them. She starts shaking when she sees the syringes full of meds (sad I know). They are her treat and she will stop crying and start smiling for them. 

Tonight I needed to play pharmacist and mix her acid reflux meds and I did not get it done before she went to bed (I was FaceTimeing with my parents in Kenosha and brother at NASA at the same time). I figured I would just put Jillian's acid reflux meds into her g port tonight (the advantage to having a GJ tube). Jillian woke up when I was starting to open her up the port and was in and out of sleep while I pushed the meds in and flushed it with water. Very shortly after finishing meds she started arching her back and moaning. She still is randomly opening her eyes and moaning. You can tell it is hurting her. With meds and water I put in less then 10ml in. So either she is refluxing a lot with a little (which she is know to do) or there is still milk sitting in there from her bottle around 7:30 (which is something we are looking into). Hmmm which is it? Not sure. 

Take a deep breath!

I really struggled mentally this weekend. Can I do all of this? Am I strong enough for this? Would someone do this better then I am? Do I try enough? Do I give her enough? With all of her appointments and therapists she is a full time job... but I have a full time job. I am loving this time off with her recovering. I have seen her grow so much developmentally. But we have to pay for everything that goes with Jillian and that means that unless Brent get a huge pay raise, I need to work to make ends meet. I know she gets benefits from being with other kids at daycare.  I never thought I would feel so strongly about wanting to stay home. Maybe because Jillian has taught me a little bit how of precious life is and how quickly life can change. Sometimes it is kinda humbling to look at everything in the past year of our lives and think that to some people it is a lot, to others it is less then they are going through and to us it is ours! Even with the mentality that this is the life we have right now, I still wonder if I am cut out for it. Maybe I'm being humbled. I would not trade Jillian for anything or all of her "stuff" but sometimes I wonder if I can do it. 

I know she love me so much. I love that when I walk into the room she lights up! She has also started with separation anxiety and  stranger danger. Sometimes it is annoying when I can't walk out of the room with out her crying but at the same time there is a little part of me that smiles because that means she has formed a secure attachment to me. She knows I'm hers. She loves me. I am comfort to her. Wow! That is really humbling. That makes me want to be the best mom possible. What sacrifices can I make to be the best mom?

Sometimes you have to let life just play out. I guess that is what I need to do. I guess it is normal to want what is best and do what you can to provide the best thing for your child. Knowing and doing what is best is hard. I just love her so much! I have to admit though sometimes when she has all of the wires and things hooked up to her I find myself pulling away from her to try to protect myself, but then she reminds me how awesome she is and I dive back in wholeheartedly. She makes me smile every day. Even when she is laying in a hospital bed. She is such a ham and a fighter and I will fight for her! 

Right now a  big fight I feel like we are taking is understanding by others. Right now I am working on just letting go of what people think. Sadly it's not strangers that is the battle. It is people that are tied into our lives. I am so sick of hearing that Jillian wants "real" food. That she would be happy if I just let her have it. Other then feeling overwhelmed sometimes I don't think I'm a bad mom. I think I am doing what I know best for Jillian. If I have to sit through one more meal out hearing how Jillian just wants to eat I think I might blow. I have educated on why she does not eat. I have tried to ignore, and I am trying to not let myself get to the point of yelling. We don't deprive Jillian of "real" food, we are saving her from it right now because it is not what is best for her. Maybe that will be my tag line for right now.

I know I am rambling! I am just such a write it out person. Just ask Brent, I would rather write something then ever say it... I'm horrible at spelling though... funny! Someday I will look back at all of this and see the person that I came from. See the work. I have been really challenged this week because I am not a fan of cleaning incisions, thats what I did not become a nurse. Brent is good at that stuff, but he has been really busy so I have needed to clean it this week. I am kinda proud of myself. Her incision is clean and is looking good. I have over come it. I have done it. I made it work. I needed some help and encouragement but she is cared for. I did what was best for her. 

So now I go and get more cleaned up around the house and act like a goof while doing it because that makes Jillian happy and I will do a lot of things for her smile :)

Fall in July!

No, I was not playing with my tube in the car

Saturday morning we woke and my daddy made Swedish pancakes in a cast iron pan. YUM! Dad, Dan and Brent went to the music store and mom, Jilli and I went to Target, Bed Bath and Beyond, Gordmans, and Kohls. We also got to see our friend Beth outside of Bath and Body Works! In the afternoon Brent headed to our friend's Julie and Skittle's wedding. He was DJing. Mom, Dad, Dan, and I re-taped Jilli. We are working hard to figure out the best way to tape her PEG tube. It it so thick.
We headed down to Taste of Wisconsin down by the lake. Jillian slept. During the day we switched her over to Tylenol from oxy. We went back to mom and dad's and Dan went to help Brent pack his gear up. Dan headed home and Brent came back to mom and dad's. We headed to bed after he got back.
Sunday morning we got up. We all worked to get Jilli taped and ready for church. We were all just about ready to head out the door and she pooped all over, including her tape! We got her cleaned up an then headed to church. Jilli made it through the whole service in the sanctuary in her stroller. After church we had the annual Classic Cruse to Church car show. It was chilly! We had lunch out side and talked to a few people. Brent, Jillian and my cousin Jake walked around and looked at the cars.
After we left Brent and Dad went to Brent's grandparent's to help get their house ready to sell and to my grandparent's to fix their computer. Mom, Jillian and I went to Gurnee Mills. We found a tummy time pillow that will be helpful once Jillian can be on her tummy again. We also found some new clothes. We loved looking at some of the fun expensive stuff at Buy Buy Baby! We then headed back to mom and dad's house. We packed up and we all went to dinner at Noodles to use my birthday coupon. We came home and unpacked!
Monday morning Jillian slept in a little. She peeded through her bed around again! I installed her new carseat (see blog post) and we went to Walmart. It was the first time she sat in a cart. We have a cart cover thing the make it softer and nicer. She was sleepy so she had a kinda hard time staying upright but she did a great job. We came home and worked around the house a little. She is able to sit up for a little while right now and then she cries in pain. We have not put her in her jumpers again since surgery. We are also mainly giving her soft toys because she waves toys all around and ends up hitting herself and she cried if she hits herself with hard toys. I also moved some stuff in the livingroom and made Jillian a section in the livingroom for her toys. Man toy storage is kinda a pain.
Jaime and Jason came over for dinner :) I love having our weekly dinners with them. It is so uplifting!

Hospital stay #5

Wednesday started early like any morning at the hospital. As the nurse said the "scouts" (med students) where in early (6:30). Around 7 was rounds. The nurse had told me the night before that round where different on this floor. They are a lot quicker and about the facts not about digging in deep. Rounds lasted about 5 minutes (can last up to a half hour on other floors).
The nurse came in and said that we would be be able to do the EEG in the room YEAH! A tech came in around 9:45 to do the test. By this time Jillian was sleepy because we made her stay awake after rounds in case they said we could do the EEG. We kinda broke the rules for this because Jillian should have been woken up at 5 but because we did not know if it was happening or not at that time we did not want to bug her. She was barely awake by the time he came in anyhow and that is what they wanted. She was not a big fan on getting all the wires attached to her head but she did not scream. The tech finished attaching them and then he left the room for the test to take place. We left Jillian in her crib for the test and she fell asleep very quickly. Brent worked on work and I blogged. The tech came back in after 35min and said he needed to wake her up to see how her brain acts waking up. She woke up calmly and started talking. He took all the stuff off her head and left.
We hung out and I went down and got Brent and I lunch from the cafeteria. Around 1 her nurse came in and said we should give her a sponge bath before surgery. She started bathing her and the head nurse came in and said surgery had just called and said they were sending someone up to get Jillian. It was almost 2 hours before we were expecting to go down. We got her bath finished up and by that point someone from surgery was there.

With EEG probes on

We walked down to 3rd floor general surgery and were put in the same holding room as the week before. Doctors and nurses came in to talk with us. This time they did not use Versed to make her loopy first. Around 2:30 they came in and got her. It was hard to not cry. Someone came over and got Brent and I and walked us to the waiting room. After about 40 min the surgeon came out and told us his part went great and that radiology was in at that time converting it to a GJ. The second part of waiting felt like forever. Around 4:30 they came in and said one person could go back. I went back and Jillian was sleeping. They said that she had fussed a little but that she went right back to sleep. It was nothing like her coming out of the first surgery. After a few minutes they said it was time for her to go back to her room.
We went back up. She slept the whole way. We got up to her room and they checked her out again. She was so out!  Someone from x-ray came up to do an x-ray to make sure the tube was in the right place. He said he needed to do a chest x-ray. I knew they were looking for farther down but... He put the x-ray thing under the mattress, this is when the momma bear claws almost came out. He was not gentle AT ALL!  She was just out of surgery and he was messing with my baby. She gave him a stink eye and went back to sleep. He went and asked the staff if the pic was what they wanted and low and behold nope they wanted one that showed lower... where the tube was. He redid it and left.
My mom and I went and picked up dinner for us and when we got back Dan was there too so the 4 of us had dinner while Jillian slept. She wanted pain meds around 10:30 and then we went to bed. They kept doing diaper changes during the night to make sure that she was hydrated and they made her upset. She is not use to diaper changes during the night and bending to get the diaper under I am sure hurt! Around 3am she needed more pain meds.

In Surgery holding

Around 6:45am people started coming in and asking how the night did. At rounds we were visited by the on call surgeon. He said she looked great and he might send us home that night. Around 8 we got milk started again at 15ml per hour. Around noon we bumped it up to 30ml per hour and caped her IV. She was taking it great and only wanting pain meds every 4-4.5 hours. We tried to pick her up around noon but it hurt her too much to be held. She finally let me hold her around 3.
In the afternoon we were visited her GI dr. She looked at her and said she was doing great and that she was happy. At the same time the discharge person came. She was in charge of making sure we got the correct supplies from the home delivery company. A little while later someone from nutrition came in. She told us we would be bumping Jillian up to 48ml per hour now. We said on plain breast milk right.... no, it seams that the nurse we talked to last week had not documented that change. No one was sure where that came from and she said we needed to go back to fortifying to 24 cal.
Around 3:30 they came in and said they would be discharging her soon and gave us her script for oxy to be filled at the pharmacy. Brent went down and got it filled. Around 4:45 the nurse came in with the discharge papers. We signed and packed up our stuff. We got out to the car around 5:30. We got in the car and headed home.
When we got home Brent's parents and brother were waiting for us. Dan was making us dinner. We gave her meds around 10:00 and went to bed. She slept until I got up at 7:30 to pump. I pumped and she played. I went downstairs to put the milk away and came back up and she was asleep again. She slept until around 10 when I went and woke her up because her milk back had run out. I realized that she was still in her diaper from the night before. They might say 12 hour however they dont really last that long. There was pee EVERYWHERE! I picked her up and ended up with a wet shirt. I got her cleaned up and got all the wet laundry in.
Jillian and I hung out during the day and got some things done around the house. In the afternoon I went to change Jillian's diaper and looked at her incision. I noticed that how her tube was laying was pulling on the incision. In the hospital they did not show us how to tape her tube so that it did not pull, I only knew that the way it was pulling was a bad thing because of all the reading I had done before her surgery. I then figured out that her tube was going to have to stick out more and then come back down. I struggled how to make this work. Dan got home and noticed me sitting on the floor getting upset and had me call his mom for help. We talked it through and I made it work. That night I posted to Feeding Tube Awareness asking if anyone had a better idea of taping. I am still working on getting it just right but I think it is better then it was at first.
We packed up once Brent got home and Dan and I took Brent's car into Kenosha and a while later Brent left the house in the van with all of his DJ gear. When we got to mom and dad's my dad's side of the family was there eating tacos. My grandma makes these amazing home made taco shells out of corn meal! Food gathers the family! We got to catch up with people and even had Napolian for dessert! We headed to bed late. Jillian only took 3 doses all day of oxy for pain. She is so strong!
Since she has gotten home she has randomly been puking drool. It is coming up with a lot of force. I'm not sure what is up with that. I'm watching it to see what is up and if I need to call GI. 
Friday med supply also came. They brought a TON of cut 2x2 pads (we have pads from KangaRoo-tique so we don't need these), a large box of cotton swabs and 3 extension tubes for us to try and the last 5 bags we are allotted for the month. Other then the 5 bags, I'm not seeing the need for many of these things...
I want to thank some amazing people for there help last week. First, my mom for all of her help! She came the first night and brought me dinner and helped give Jillian a bath. She brought me dinner each night in the hospital! Thank you to Dan for searching the house for bear even though it was in the car :) It is a true friend to turn a house over for a little girl's bear. Thank you to all of the people for the phone calls and texts and facebook messages of support. They mean a lot!

I'll update about our weekend later. Right now I have a little girl who has only taken a few little naps today so she it sleepy and a house that NEEDS work because in the last two weeks we have only been home a couple of days so it has been the dump and run. Goal of the week: find this house again while Jillian heals!

Car seat WOW!

Sleeping in Evenflo Symphony DLX

For anyone who has ever struggled with getting car seat in right I have found the answer!

I am a self proclaimed snob when it comes to children's products. I research and research and research when I buy things for Jillian. This research started when my like brother Howard was born when I was in 8th grade. I wanted to get him the best gift. I have kept up the research since then because I find it really relaxing (weird, i know).
Jillian put on a bunch of weight quickly so she was getting close to the upper edge of the weight limit of her car seat. She had a Evenflo Embrace 22lb. I loved her car seat and it fit well in my car (however it was a struggle in smaller cars). I was sad that she would need to move to a different car seat but her safety is most important! I started looking around at car seats and reading reviews. After a lot of reading I decided that the Evenflo Symphony DLX would be our best plan. Here is why:

• It has an infinite slide harness meaning you don't have to re-thread it into holes. I already LOVE this feature. With her other car seat it was hard to get her straps in just the right spot because the holes are so far apart. I know it does not look like it but when the baby is so little the few inch gap between the holes can make it hard to get the perfect spot.
• It is rear facing to 40lb! and 37 inches meaning we can keep her facing backwards longer. 
• It can be converted into a booster seat to hold Jillian until she is 110lb! It will last us a long time!
• It has really good safety ratings.
• It has a new SureLatch system

We bought the car seat a few weeks ago but it has been sitting in Jillian's room because we wanted to get as much use out of her infant car seat as possible. All weekend I have been struggling getting her buckled into her infant seat correctly because of her new tube. I went to put her in her old seat this morning and she screamed when I tried bucking her in. I decided I would see if her new seat's straps sat better with her incision. I tried it out first in the livingroom before putting it in the car. Her is what I loved:

• It sat nicely with her incision making it fit her better
• I felt that it fit her better then her old seat. Her chest is bigger around so I felt like in her old seat it was tight on her chest but looser around her waist. 
• She loved sitting in it
• It had a nice recline

Then I went out into the car to install it and this is where I was blown away! I have installed many car seats in my time as a baby sitter and therapist. I have owned multiple car seats before Jillian and have done the normal struggle of installing them. Her infant seat had a base that was installed with LATCH. I had to sit in the base to get it tight enough.
The Symphony claims it has a sixty second install. I thought that was a lot of a claim and figured it was not really true but I was hoping for something easier then the normal car seat install. I took it to the car, put the LATCH connectors on the LATCH bars and lightly pushed the car seat. It's self ratcheting system got it tight in less then 30 seconds. It is tighter then I ever got her old seat. It does not move! I was so impressed!
If you are looking for a car seat this is IT! It is just over $200 however we got it on sale for around $175. When you buy a convertible car seat and then a booster you spend over $200 for good seats. We will still use an infant car seat if we have another child because I love the convenience but I will transfer them over to this seat if possible. I recommend this seat to anyone in the market for a car seat!

Note: the LX model does NOT have the same LATCH system, otherwise it is the same. In my opinion it is worth all of the money for the better LATCH system.  


 link to seat

80th birthday to the little stinker!

I am going to rewind a little bit in this blog post first because I want to make sure that I get in all the stuff about our weekend, so if you are looking for the Jillian hospital update it is a little farther down in this post.

We got out of the hospital at rush hour on Friday (best time to leave the north side of Milwaukee and go to the south! lol). We went to my parents and had dinner with my dad. My dad and I went over to my aunt's house to see my grandma and the rest of my family. My great uncle Bill was there from Indiana and we had not seen him since my wedding and my aunt and uncle where there from out state also. We visited for a little bit and then went back to the house to pick up Brent and Jillian and head to the airport to pick up my mom. We picked her up on the curbside and headed back to their house. Brent went to bed when  we got home but Jillian wanted to stay up and see her grandma. She even gave her a gift of a blow out diaper! We got to bed kinda late.
Saturday morning we cleaned around mom and dad's house and the boys went to Sam's club and got my tires rotated and picked up food. Mom, Jillian and I went to Goodwill, JC Penny and Target. By the time we were done shopping it was time to go back to the house for dinner. My grandma, Uncle Bill, Aunt Terri, and Uncle Scott came over and we cooked out. It was really cool to get to ask my uncle Bill questions about family history. He is a really smart guy! After they all left we hung out for a bit and then went to bed.
Sunday we got up early and went to first service. After church we had a group picture. Then we stopped at my parent's house to pick some things up.

Dad and Brent headed over to the restaurant where we had my grandmother's surprise 80th birthday party. Mom and I stopped at a rummage sale by their house that had a lot of kids stuff. We got Jillian some clothes, toys and a 6 sided gate to play in. We then stopped back at mom and dad's to get a power cord and then we joined them at the restaurant. Some of my family was there setting up. When we got there we had a surprise! Two of my great aunts came into town for the party and we did not know they were coming. They loved meeting Jillian. Set up finished and then the people started to arrive. Mom and I help direct people since there were two parties going on.
My grandma got there and was so surprised! It was really nice to see so many people that love her because she is a wonderful person! We ate and I think I got the best seat in the house. Across from me was my great uncle Bill, on my left was my cousin Sam and on the other side was my cousin Delana. My grandparents and my aunts and uncles were all around me. Jillian took a nap during the meal. My cousins and I severed the cake. Once most of the people had left we took pictures.
Mom, Jillian and I went back to the house so I could pump and to change clothes. We then headed back to the restaurant where everyone was having drinks at the bar. We hung out for a bit and then everyone left. We went back to mom and dads to pack up and went to Penara Bread for dinner on our way out of town.
We got home to the sound of music. We did not move in until August last year so we had no idea how close we live to County Thunder. It is just a few miles down the road and you can head it clearly outside and can hear it muffled inside over the TV.

Monday Jillian had a doctors appointment with her ped as a follow up for her ears. The ped ended up digging out ear wax. Jillian has her momma's ears. I have always been able to impress with the amount of ear wax I have and Jillian has the same talent!
In the evening Jaime and Jason came over for my birthday dinner! Jaime blessed us by cooking a yummy dinner and making a coffee pie for dessert! It was so nice to get to talk and be encouraged by friends. They are so good at pointing us back to God. We feel so blessed to have them!
Tuesday morning Jillian and I had a slow morning. I was slowly getting things done but Jilli was in a cuddling mood. I put Jillian on her blanket on the floor to play so I could eat lunch. I microwaved leftover pancakes and sat down on the floor next to her. I looked down and was cutting my pancake and heard the noise that makes us move fast. It is the gag/cough noise of the tube moving. I look over at her and she is holding the end of the tube that was just in her intestines in her hand. AHHH! The pump was still running so mil was coming onto the floor. I shut that off and got the rest of her tape off. I called the hospital and left a message for GI. 2 hours later no one had called me back so I called again. They paged a nurse and she called me back about 20 min later. She said she would talk to the dr and the surgery department and come up with a plan but to make sure our bags where packed. She called me back about 10 min later and said they were just going to admit her on the surgical floor and put in an IV until surgery. I loaded up the car and took off.

We came in and I got a 10 parking spot (funny how good of a spot you get around 5pm). As we were coming up the skywalk her GI dr was leaving. We talked for a while in the Skywalk about the last time she was in. She said she was on the for the week so she would be seeing us.
We then went down the registration and checked in. They asked if we needed someone to show us up to the 9th floor and I said I knew where we were going. We came up to the floor and got a room. The nurse showed us around (the floor is identical to 11). My mom came up and we hung out with Jillian and watched the school board meeting (its always fun to watch people bad mouth your mother on TV). Her room this time has a bath tub (she has always had showers in the bathroom... ) so we filled up the tub and gave her bath. She LOVED it :) Brent then got here. After her bath two nurses came up from the NICU to put Jillian's IV in. It was now after 10pm and she had not eaten since 1 so she was dehydrated. They first tried both of her feet and it did not work. As a last resort they tried her wrist. Luckily that worked because I don't know what they would have done if it did not work. My mom then headed home and we went to bed. She slept well and only woke up when they did vitals.

Ramblings of the exhausted.

Ever feel like you are on the verge of something great. Like you are about to have a breakthrough?

I figured out today there is an opposite of that feeling... Feeling like it is all about to fall apart. Like all the balls you are juggling are about to hit the floor. 

I so feel like the second one right now. I am normally very matter of fact with all of Jillian's stuff (which some people interpret as negative). Today it is not any one thing waying on me, it is the balance of it all. The perfectionist that I am wants to do it all right. 

I told Jaime tonight that I feel like God hit me in the back of the knees. I have been reflecting a lot more lately, praying and thinking. Something good for me. I realized when I don't get my way with God I act kinda like a spoiled brat. I whine and complain and think He is mean to me when He has always done the best thing. He is not about just wanting the best for Him just because but wants the best for all. Sometimes that is hard to imagine. When I don't get my way I don't see God as loving but that is not fair. I love Jillian enough not to let her bite a hole in her feeding tube like she wants. It is the best thing for her but not what she wants. 

I am looking to God for a lot of direction right now and feel like I get a little bit every once in a while but then something else happens and I question if His direction was right, or if I interpreted it right, or if it is just not time... If...if...if 

That's kinda how I feel now with surgery. We had to wait a month after we decided to do surgery to get the appointment for the surgery and then it fails. What does that mean? What is God telling me? Am isuppose  to be begging for Him to take it all away? Is he trying to tell me something in this? What should I do now? Is He saying not now on the surgery? Is He saying wait longer? Is it of the good of someone else that the surgery not be til later? Is He preparing the surgeon? Is He preparing Jillian or I or Brent? Is He showing us to out knees? Is He trying to break us? If we just listened would things be easier? What if we had more faith?

I know God has a purpose in all this. I know He works all thing for good and that is a good by His definition not mine (and I love/dislike that). 

My head just kinda goes crazy with questions some days. 

I know some things will just take time but some of these things I need to make desisions on. What way do I turn?

I'm not upset at God for Jillian's challenges. I just see them as what is. That's what I do with medical stuff. I'm not freaked by her differences, it is all the other stuff that just comes with life. It's the not being able to keep to house clutter free, and getting hurt in relationships, and balancing commitments, and the money worries and time. The things that are kinda always the same no matter the circumstance. Maybe that is why I don't beg for situations in my life to be taken away because I know the things that stress me are things that are in all situations. There is never enough time , money, intelligence, power, fame, friends or anything else but God. 

As a side note. Surgery called today to schedule for August 19th. A month away. She is actively trying to take the tube out. I told them about it and they said they would talk to the doctor but he is booked this week and then goes on vacation. Sigh. Not sure even what to pray about that. 

July 19th, 2013

Whirl wind day 2!

Jillian did not sleep well the night of the 18th. Doctors started coming in around 6:45am. They checker her out and looked in her ears. She still had so much wax they could not really see in them, but she hated them touching them...
Rounds happened mid morning and Dr. Adrian Miranda was the floor doctor right now. I liked him a lot because he really seamed to know his stuff. Rounds to me is kinda funny because it is interesting to watch the residents report to the attending. The current resident was timid and did not look at Jillian's case too much before rounds so I helped him out. The attending asked some questions about Jillian. I explained that she pukes hours after she eats sometimes and I finally had a good conversation with someone about the possibility of delayed gastric emptying. We talked about the Fundo option that surgery had brought up the day before. The GI dr was on the same page as I was about it. He said we know the J feeds work so lets let he get bigger and figure a few things out before we do that. He took it as a teaching moment for the students. He asked what at the three main times you dont want to do a fundo, they did not know so he helped them: 1. if they have cp (Jillian does not), if they have a mitochondrial disorder (we still have not ruled that out), or if there is anything neurological going on (we go for an EEG on wednesday). That puts her 2 strikes down. He said that if the later two end up to be true of Jillian and we did a fundo that puts her at high risk of it failing or her getting gas bloat syndrome. Gas Bloat has a lot of complications with it! It means all the extra gas builds in the stomach making no room for food and a lot of pain. He said it is a nasty disorder that is painful to watch. Right now I feel like with all the unknowns of Jillian we are not ready to take that risk when we have something that works. 
We talked a little bit about her vomit. She can eat something and puke it many hours later. The dr said that 1/2 of you food should be digested out of your stomach an hour after you eat it and she should not have any to come back that much later. We talked a little bit about delayed gastric emptying (another reason to not do a fundo) and what we would need to do to check for that. We decided that at somepoint we should test for that.
We then talked about the test scheduled for the day: the PH study. He asked the team why you do a PH study. They said to see reflux. He said that with Jillian's case we know there is reflux. He talked about the reasons why a ph test is best and that for Jillian it is fine to give us some baseline numbers but that it would not really tell us anything but since we were stuck there anyhow we might as well do it.
We hung out for a little bit and then someone came in to place the ph probe. It is kinda like an NG tube with sensors. As she was telling us about it the attending GI walked in. It seams that she was trying to do the test out of the way of prodacall and there was a little tension in the room them. His partner left the room, came back into the room, the two doctors then left and the first woman continued. Then they came back in the room and asked to speak to the woman. During this time the woman from Child Life came in and asked if we needed anything for Jillian and said that we had made a good job making the hospital room like home. She left and my in-laws came in to visit. Then the doctors and the woman came back in and explained that they would not be doing the test because we would be sitting in the hospital just for the test and keeping her on IV fluid when she did not need to be and that they would be placing the NJ back in and we would be going home. I have a feeling they figured out during that time that Jillian would not fit into the OR schedule that day. Also, the hospital does not place NJ tube on the weekend so if we did the ph test Jillian could not get the NJ tube put back in until after the test was done. Well the test takes 24hrs and that would have made it done part way into Saturday. We would have then had to keep her in the hospital on IV fluids until Monday. We decided since the test was not a big deal to not bother.
Around lunch time they came and got Jillian to place the tube in intervantional radiology again. Jillian was not  a happy person about having it placed again and was very crabby. We took her up to the room and brent went to get food from the cafeteria. She and I were on the floor playing while I ate my lunch and in one fell swoop she pulled  the tube part way out and shoved it back in. I called for the nurse. The nurse and a med student walked in the at same time. The nurse started helping and the med student had come in to see about discharging us be decided that we needed to go back down to make sure the tube was still in a good place. About 40 min later we went back down. Jillian had actually pushed it into a better place then it was before!
We went back up and the dr came in and asked what we needed to go home. I said I wanted to make sure the tube worked before we left, have her ears checked again and talk to the surgeon. She looked in her ears and said they were still too full to see anything. She said we could do a tube try for a bit and agreed that was a good plan and said that she was not sure if the surgeon would have time for us but that if her did not she would have him call us.

We got the tube set up and then we packed up and started to get ready to leave. We where just about to sign the discharge papers when the surgeon came in. We talked about the options again. He said that we had two options. To place the GJ tube now, and then do a bunch more tests because he thinks we need to figure more things out, or figure more things out then place the tube.  We said we want the tube placed now. He said he would have his assistant call us monday to set it up. We were then discharged and hit the road.
Overall it was a long day with her. She did not sleep much at night nor during the day. We did have some happy time with her new toy though and she did like not having a tube in her nose. 
Now we wait for the phone call again... I just keep reminding myself the HE must have a plan in all of this timing. There has to be a reason!

Jillian 6 month photos

During Jillian's 6th month she went to Door County for the first time, spent a day in the ER but no long hospital stay, learned how to sit up, and started liking baths.

Whirl wind!

I woke up Thursday morning to Brent making me chocolate chip pancakes that were shaped like Mickey!They where so yummy. We talked to a few people on the phone and finished packing up all of our stuff.
We took off for the zoo around 9. We stopped on the way to get gas and sunscreen (I forgot to pack that... ops!) As we were driving I kept getting a whiff of poop...
We got to the zoo around 10:30. We took Jillian out of her carseat to put her in the stroller and she had poop to her hair. After cleaning her up we sunscreened her up and went into the zoo. First we visited the penguins and then we went to the ape house. Jillian liked watching the monkeys jump around! Next we walked down to the animal hospital and looked around and showed Jillian that the animals do some crazy things too! We then took off to the reptile house. She loved the fish and snakes. She thought they where funny!

We went by the giraffes and Jillian took a nap while we ate our lunch of lunchables! We woke Jillian up and took her by the giraffes. They were all the way in the back of their cage and Jillian was not able to focus on them. We went to see the elephants and the big cats. She liked the jaguars because they were jumping all around. They liked looking at her too. We went by the elephants, had a fresh squeezed lemonade and then back by the giraffe and made her a mold-a-giraffe. We went over to the kangaroos and she was getting sleepy again. We stopped in the gift shop (that was too overpriced for me!) and then headed back to the car.
We stopped at Starbucks for my free birthday drink and Best Buy for a new phone charger. We then headed to the hospital. Our parking spot rated a 7 out of 10, lol! We checked in at the skywalk and they told us to go to admitting. They got us checked in and gave Jillian a handmade blanket! We then headed up to 4th floor day surgery.

They told us to have a seat and then her doctor came over all scrubbed up. She said she was glad she found us because a hospital policy changed and she might not be able to do the surgery but she would let us know. We were so confused about what was happening. Then the receptionist took us back to a room.
The doctor came in and said that in the past week the policy changed and they no longer place tubes in the surgical department but now in interventional radiology.  She said that if Jillian was in desperate need for the surgery they could do it right away but that Jillian fell into the gray zone. She said she was really sorry for the inconvenience and that she would go and work on getting us an appointment as soon as she could for IR to do the procedure. She came back in and said that they could not get us in for Friday and the soonest they could do was Monday so they where going to have to send us home. She said to wait there and she would check to see if they could get us meal tickets for our inconvenience. The doctor then came in again and asked when Jillian had eaten last (1:30 like they told us) and she said she decided that she was going to go ahead with the surgery! It was then a race to get all of the vitals and check in stuff done.
They then took us down to the 3rd floor general surgery because day surgery closes at 5. We went into a holding room and each of the doctors came in and talked to us. They gave her Versed and she became like a newborn again. It was kinda funny. Then the anesthesiologist  came in and carried her into the room. It is so hard watching your baby go through a set a double doors that you are not able to go into. We then headed into the waiting room.

After a while the GI doctor came in and asked to speak to us in a separate room. She that that the biopsy went fine and they got a lot of samples. She said the Jillian has a Hiatal Hernia. She said they went to place the tube but they could not find a good place because of her stomach and the surgeon did not feel it was safe to continue surgery so they stopped. She said we were being admitted and we would figure out what to do next since Jillian had no tube at all. We went back to the waiting room again.
A nurse came to get us. She said Jillian wanted us NOW and was screaming. We walked into the recovery room (Jillian was the only one) and the gave Jillian to me and she curled up on my shoulder and went to sleep. The anesthesiologist told us that she did great but she can pack a punch (I have been known to get violent going in and coming out of anesthetic). The surgeon then came by and said that he could not get a good enough view to continue, and that he felt like if he cut then it would not have been safe and he wanted to do the best thing for Jillian and did not want to put her in danger. We thanked him for looking out for her. We then talked about our options.  We can do the surgery a different way where surgeons place the tube with multiple incisions or there is the option of altering the anatomy of her stomach. We currently feel like we do not know enough about what is going on with Jillian to alter her in a way that cannot be undone.

They then got us a room on the 11th floor in the exact same room as last time. It was after 7pm at this point and we got some dinner. Jillian was going between sleepy and fussy because they pumped a lot of gas into her and it was coming out. We put Jillian to bed around 10 and by 11 she was up screaming again. The night was long with little sleep because she was up crying a lot.
This morning we have seen a few doctors. While we are here and she is tube and food free we are going to do the PH probe study. It is a 24hr long test and will tell us how much reflux she is having. To do this test they have taken her off all of her acid reflux meds. This was hard for her last night because she LOVES her pink medicine and I think she is more upset about no pink meds then not eating. The probe is to be place sometime today and she will have to be on IV fluid during that time.
Surgery is also going to come in and talk to us today and come up with a plan. I will update once we fingure out what is going on there.
We are also working on figuring out if Jillian currently has a ear infection. She has so much ear wax they cant see her ear drum so they are putting drops in to "eat" the wax so we can figure out what is going on. She is pulling at her ear a lot today.
She is still fussy today. She did spend a 1/2hr today playing with the new toy we got her for the hospital. She is very sleepy from last night and she still has gas.

We will see what today brings!

Got Milk?

I think I am coming to the end of something that I thought would end a lot sooner then it has. Something that has taken a lot of time, emotion and dedication.
Before Jillian was born I decided I wanted to breastfeed for as long as possible. My goal: one month. I figured it would not work well and I probably would not have enough milk based on my mom. I figured I would try and thought that any milk that I did get was a blessing but I was not too attached to it.
After my C-section I insisted that they bring me Jillian right away (they wanted to wait an hour for me to rest, but the surgery had already taken a half hour longer then expected after her delivery). I knew from all my reading that if I was going to give breastfeeding the best shot I needed to start right away no matter how drugged I was or the pain I was in. I made all visitors wait and gave it a try. With help from the nurse she ate.
Jillian was born on a Friday night. The following Friday we went in to see the lactation consultant. Jillian had lost more weight then expected but with the assistance of a shield she was latching and eating, just it was coming back up. The consultant suggested that I pump extra milk and give her 15ml after each feeding to get extra calories in (If only I had known then the significance of 15ml bottles and how long they would last...). Jillian started to gain a little weight. I would pump throughout the day to have the 15ml bottles ready to go for her. After a while we backed off to her only getting "extra" milk a few times a day!
When Jillian went into the hospital the first time in February we started measuring her intake more along with the amount that came back out so I started nursing less and less to be able to make the measuring work. She went to see GI to follow up after the first hospital stay and they decided she was not making good weight gain and needed her bottles to have Alumentum added to give it extra calories. By the time Jillian went back into the hospital in March she was only nursing about once every few days and I was pumping the rest and giving it to her by bottle. Nursing at that point was really too messy too because she would puke while eating and both of us would need new clothes by the time she was done eating. Right before she went in for her second hospital stay was my last time nursing her. During that stay we put the NG tube in and everything became exact measurements.
Since then I have pumped milk around the clock for her. I have filled a small chest freezer and a good portion of our freezer with milk. I am easily about to get out over 50 OUNCES of milk a day and Jillian takes around 28 ounces a day. On top of the daily surplus there have been tests and hospital stays that have equated to large amounts of time without her "eating" and me still pumping.
I had looked into donating the milk but because Jillian is on a feeding tube and I take daily medication for asthma I am not able to donate. I looked into selling it but it is not really legal or illegal and I'm not hopping onto the gray market this week and the thought of meeting strangers to sell them my milk was kinda strange to me. If it was someone who needed it that I knew it would have been different.
So that brings me to now and what do I do now. I have debated back and forth about keeping pumping. This has been far more emotional then I thought it would be. For someone who was not all that attached to it before hand I have become very attached! But at the same time I am dumping milk everyday because I have no where else to store it. I even have an extra stash at my parents in-case we lose power. Pumping however dictates my life sometimes. I have to schedule things around it and try to squeeze it in and the pain sometimes of waiting too long is frustrating.
So I think I am going to let it go after Jillian's surgery. I dont want to have to bring frozen milk with us so I will keep pumping until she is out of the hospital and then ween down. My goal in nursing was to provide Jillian the best start to life I could and I think I have done that. Even though I will not have a fresh flow of milk she still has a chest freezer and part of our freezer to use up. We are estimating that will put her close to 10 months old, if not longer before she runs out of breast milk. At that point we will switch her over to formula.
I have missed a few times lately that I don't nurse her anymore, even though she always had to use a shield because she could not latch without it. I am glad however that she is not nursing now while she is teething. I guess one of the advantages of the tube. 
Man even as I type this I continue to have the debate in my head. The thought of what if the freezer dies? Remembering how much better her body seams to do the less formula we add to her milk and wondering what it will be like what she will be on just formula. The questions cycle my brain round and round. But on the flip side pumping is wearing me out. But at the same time it delaying a period is nice. But it takes physical time away from Jillian. I wish this was a completely cut and dry choice. I feel like both sides have merits, but what one is right? Does everyone struggle with this choice this much? I just want the best thing for Jillian and sometimes I am not positive what that is. Oh motherhood! 

The difference a year makes

(Before you read this post, it is me reflecting, not upset or being negative so please read with that mindset)

This week I turn another year older and if you ask my students that puts me somewhere between 15 and 99 :)

I woke up this morning in a reflective mood. I started thinking about this week in the past few years of my life. Last year on the week of my birthday we went up to Door County with Jaime and Jason. Before we left for vacation we found out that Jillian was a girl. The year before on my birthday I drove to work in Madison and stopped at Penara Bread on my way and while I was there I started bleeding... A LOT! I was several weeks late for my period and was loosing the baby. It was one of the longest days! The year before my mom and I were at Disney World having a good time!

This year is a little different then my normal birthday week (yea, I said birthday week). This year we are preparing for Jillian's surgery (I spent a few hours last night reading as much as I could about the surgery). We are going to try to go to the zoo before Jillian's surgery since we dont have to be to the hospital until 3. Normally my birthday week is spent going out to eat at different places with birthday coupons (I did not get many this year because UWW got rid of my email address without me realizing it and thats where they all go to, man I love coupons!).  So far this year we have no eat out plans.

But this year i have someone to hold in my arms. Someone who is sleeping on my chest right now in a pink tutu. Someone I would not trade for the world!

This time last year I was dreaming about what now would look like. I cant say I imagined all aspects of my life right now but I am glad to have the people by my side that love me. I imagined a little girl who was rolling around and this week she has started to. She also said mumma the other morning. I know she does not associate that with me yet but the fact that she stated making consistent sounds this week is huge!

This year is a little more stressful then last although last year we were in the midst of all of the drama of trying to buy a house and it falling through again and again. Last night after a huge bill came in out of left field from Children's (we have already paid the out of pocket max for our insurance this year on Jillian) Brent asked me when the stress lets up, and I have no idea. What I do know is we are blessed. We are blesses with the gift God gave us of Jillian. We are blessed for the friends we have. We are blessed so much by some of our family. We are blessed with heath insurance. We are blessed with great doctors to help us in the journey. We are blessed for the tubing running out of Jillian's nosed. We are blessed with the opportunity of surgery this week.

So while the bills still come, the pump still goes off at 2am, the bags for the pump have not been working well this week, the dishes still pile up, and I am not off trotting around Disney, I am just as blessed this year. I have so much to be thankful for! I have a husband who works hard to keep our home, a daughter who smiles when I walk in the room, a mom who listens even if it is just to me venting, a daddy who is my supper hero, friends that help us out in ways I could not imagine, and other people who have come around us in prayer. We are blessed!

So this year I'm going to try to take a new perspective. While I am not off running around partying I am loved and that lasts!

 

 

My 18th Birthday eating an Icee and Cheesecake!

2010 (above and below)

 

 

 

2011

2012