The Poop flowed!

Well I dont think she is backed up anymore :) She pooped 5 times Sunday (1 blow out), 5 times yesterday (2 blow outs) and 2 times already today (i don't know how the one did not blow out). Her poop now sounds like a geiser and I could hear it coming out across the house today. I talked to GI last night about stopping the laxative and they agreed with me that we should stop until we see the dr on Friday because we dont want her pooping too much. I feel like it is a balancing act with her poop... and a balancing act I never thought I would be spending this much time thinking about. Oh poop!
During the day yesterday she was crabby and was still kind of crabby last night, but I would be too if I was pooping that much. Someone was complaining about Jillian's mood the other day and all I could think about was all that she has been through. Many babies take weeks if not months to be weaned from a bottle of milk and Jillian had to do it in a day. It is not like she is older where we can reason with her, we just took it away. In some ways it is easier because she is so young but at the same time I cant help but think how confusing this must be for her. We poke her frequently with needles and tubes and make her go through a lot of tests and some of them we cant hold her hand during. She has reflux and tummy troubles that I am positive are very painful.  She is such a strong girl and so i guess if she is crabby sometimes I understand. I would probably be crabby more often if I was her but she is just happy to be held or stand in her jumper. She is such an amazing little girl. I know her crying can be overwhelming at times but she is a very happy child if something is not wrong.
Last night she really liked going for a walk around our yard. We live on a highway so taking a walk around the block is not an option for us (something we miss) but we have some land so that works to walk around on. Last night Brent was insisting that we go outside and walk. I went along with it but thinking in my head that we had several things to do. We walked to the front yard and Brent had a surprise for me... Daffodils! I LOVE daffodils! We moved into our house last fall after the daffodils are done blooming for the year so I did not know they were there so I was so excited to see them there. It was the highlight of my day to stand in our yard with my little family looking at daffodils.
Tomorrow Jillian has a doctor's visit with her pediatrician but for now I need get some things done around here :)

The weekend

Friday night we were amazingly blessed by a family from church with food and other things to take care of us! We were brought to tears by there generosity just as we have been by so many amazing people. We are so blessed to have people around us that love us and Jillian. Just knowing people are praying is amazing. We have had people we barely know come up to us and tell us they are thinking about us and we have created many new relationships with people in our journey with Jillian. Looking back on the last few months we can see several places where God has placed just the right person in our life. Like just the other night Jillian needed to go on a new med that needed to go in her tube and our doctor was able to call our pharmacist and ask for a recommendation on a med. She has able to give him not only a professional reference but also a personal one because she has a kiddo with a tube too.
Friday night our friend Dan came over and spent the night so he could help us around the house on Saturday. We are so blessed by his friendship. He gave up his Saturday to come and help Brent with projects around the house. We are currently on working on getting our house ready to have a 25th anniversary party for my in-laws here. When we bought the house 8 months ago we knew it needed work but it has been a lot more work then anyone was expecting and with Jillian we have not been able to get done very much lately so now we are in a little bit of a rush to get things done. We are fortunate though that next weekend some of our friends are coming out to help us work on projects!
Saturday Jillian was very cabby. Between having an ear infection and not pooping since Tuesday she spent most of the day crying. She did poop in the afternoon but it was not a pleasant experience for anyone in the house. The boys vacated to a different floor from the smell. Honestly I am not sure if I have ever smelt anything that bad before!
We went out to dinner for Seth's birthday and then the girls went to Kohl's to get me some summer clothes. I am down 4 pants sizes since before I got pregnant meaning I did not have any clothes for warmer weather. I was excited to find some clothes that fit!
Today we got up and went to first service for Church and then a class for Jillian's baby blessing next weekend. We had pictures taken for the service however Jillian decided she was sleepy at picture time and was crying. She ended up getting her picture taken with her asleep with her passy in her mouth.They told us that we could send in 4 more pictures for the service and Brent and I were talking about how we have great pictures of her from the hospital last week. Tonight as I was sending the pictures it hit me that thinking that I have great pictures from the hospital is not a normal thought but to me was normal. Sometimes it hits me how different some parts of our lives are. Some of my best pictures of Jillian are in hospital rooms and for us that is reality.
Jillian has been making up on poop today. She has pooped 5 times. I left a message for GI tonight to see if they want her to stay on the laxative with all of the poop today.
She has also started refusing the water this weekend. She only gets 15ml at a time of water at time. Yesterday she refused her water and today she refused it until 8pm. On my message for GI I asked if they had any suggestions for the refusing of water.
Jillian's cold has been getting better this weekend although there have been a few times that she has choked on the mucus that she has choked the mucus that she coughed up. Her eyes are not as goopy today and her nose is not a faucet. I need to figure out a way to clean the bridal in her nose. It is green now from her cold but if you touch it she c
ries and they said it hurt her, but the thing is so nasty!
Well time to put her to bed. It is kinda nice her not having an exact bed time anymore. There are some advantages of being on a pump 24 hours a day :)

The eyes, the ears, the nose, the poop!

We have been figuring out Jillian's extra appendage. The nice thing is that we can place it in the middle of the livingroom and she can get to most places in the room. We tackled going to the doctors office and visiting work. I have decided that I need a bigger carabiner to clip her backpack to things. The carabiner that we have now is not big enough to clip onto the things I need it to. Supposedly Walmart and Target carry a bigger one that is meant to clip onto strollers to hold shopping bags.
Last night Jillian got a bath. Those seam to be one of her least favorite actives. She screams like we are hurting her. We have tried many different things to make her not scream but nothing seams to work so we just do what we have to do to get her in and out. We found the the door knob in our bathroom is a good place to hang the backpack.
After her bath she fell asleep in daddy's arms. She was so out that she did not even notice when she swaddled her. When I went up to bed she was coughing. She was coughing and then choking on her mucus. Poor little thing. I stayed up for a while to make sure she was ok. It is not a good night sleep when your kiddo is coughing. She was also up at 6am coughing and crying.
This morning Jillian and I both woke up on the wrong side of the bed (poor Brent!). During the morning Jillian and I hung out at the house and I got things done. She slept a lot. She did take her 15ml of water, which she choked on :(

She had a 1:30pm doctor appointment with one of her pediatrician's colleges. They weighed her and said she was 13lb 6oz. I am pretty sure that is not a correct weight. I know she is eating more now but I am sure she did not gain 6oz in 2 days... She is suppose to gain about an once a day and three ounces a day would be crazy. The nurse also said the another parent questioned their scale this week so I think it is them. I want her to gain weight but in a healthy manor.
She was running a 99.5 temp when we got there which does not surprise me because she had a shot 10 days ago and she is sick... 
The doctor then did the exam. He went to look in her ears and they were so full he could not see in them. He ended up cleaning them out and then looked at them. He said the one ear drum is tilted which is common in  kiddos less then 2 months old but is kind of odd in a 4 month old. I'm not sure what that means... He also noticed that she has an ear infection :( He said that because she has an ear infection and eye drainage that she needs to go on antibiotics.He called the GI clinic to see if there was an antibiotic that they thought would be best to be put down her tube since we are trying to do as little by mouth as possible. He called me back tonight and said he never herd back from GI so he called our pharmacist and they figured out a good antibiotic to go in the NJ tube.  Hopefully it helps her to feel better.
While we were at the doctor office she pooped! It was a good amount but not nearly as loose as you would think it would be for a little girl who has been on laxatives for a week.
I noticed the other day while I was on the Aurora website that you can reorder your supplies online. I figured I would try that today before she is in desperate need. I got an email back saying they got my message. The one thing I noticed though is now I don't know when they might be coming. If I don't hear from them Monday then I will need to call them. I wish I could get it to automatically set to deliver the same supplies that we always need on a certain day but it seams like I need to contact them each time.

baby in front, pump in the back

After the doctor office we went to her daycare and taught her teachers how to do her tube. The nice thing is that I work there so if there is questions or problems I am able to help. Luckily the Kangaroo Joey pump is pretty user friendly.
Tonight she is very cuddly :) We are weighting right now to head out and get her meds.

The First Night

We have been home less then 24 hours now and so far it is going just fine. Last night she curled up on the couch with Brent for a while and I went to Walmart to get her meds and some food.  Funny how things expire when you are not home.
She was coughing a lot during the night. She seams to cough more when she is sleeping. She spends all of her day in an elevated position so that would not be a factor. 4am is seaming to be a bad time for her cough. She coughed a lot from 4-6 this morning. She and I ended up hanging out in bed most of the morning just chilling. It was so nice to not have people in bothering us all of the time. I'm not sure why but I seamed more annoyed by that this time around.
Her congestion seams to be off and on too. Sometimes her nose is a faucet and other times it is dry. When she woke up this morning her one eye was so full of gook she could not open it. I wiped it off with a wet wash cloth and she like that because she could hold the wash cloth.
I just ordered her a new backpack from Pumpkin Packs! They are feeding tube backpacks that should be a little easier to use then the some that came from our DME. I still think the backpack we currently have is meant for a different brand of pump because ours does not fit into it right. I am excited to get it in the mail. I feel a little bit like a five year old waiting for a toy to be shipped and it said on their website that it will be a 3 plus week wait to get it. Before Jillian went into the hospital my mom and I ordered a canopy for her car seat and that arrived while we were at CHW. She currently has a winter cover but this will be nice for when it rains and springtime. It is like a blanket that has Velcro on the top to attach it to the car seat handle. It will be nice to eventually take off the winter flower cover that she has.. it just has to warm up. It is April and we just had to have more propane delivered to our house because we need to have the heat on still. Wisconsin!
I think overall Jillian is happy to be home. She has loved standing in her jumper and she had the biggest smile when we put her in her rock-n-play last night. She has been enjoying being in her swing this morning and "talking" to her toys as she tries to eat them.
Well its diaper changing time.. still waiting for normal poop. We have had no poop again since Tuesday and she has been on a laxative since Monday...

HOME!

Jillian was up a few times last night whining and coughing. We got a lovely wake up call though at 5:50 this morning (she was up from 4-4:30). I woke up to Jillian out of her bouncer and in her crib, her pulse ox monitor on the bouncer and someone I had never met standing over my child. This is not the way any mom wants to wake up! The unknown person introduced themselves and told her she was there to draw blood... at 5:50 in the morning! I know they don't sleep at the hour however I had finally gotten my kid back to sleep and myself. After being poked Jillian decided it was time to be up for the day...
The first doctor came in and asked me what my goal was for going home. I said that I was not taking her home while her our plan for feeding her included something she was choking on without a plan to get the choking to stop. So it was decided that she would not get any milk mouth so she would not choke.
Rounds started and they decided we would try two 15ml water bottles again today. She also got another dose of laxative because she still is not pooping right. They briefly talked about switching her to Enifamil AR, but the dietitian said that was not a good idea. I have a milk allergy so I am dairy limited and Jillian is on Alumentim which is for kiddos with allergies so it has milk broken down differently. AR is milk based and they don't want to rock the boat and move to something that has more dairy in it just in case it is a problem. After round's Brent's mom came to visit Jillian and I for a little but. 
Case management came and visited us. They called our DME (direct medical supply) and had it arranged so we will get NJ supplies now. She also called our home pharmacy with our insurance company to let them know that Jillian grew (YEAH!) and her and her dose of antacid needed to change.
The dietitian came back and asked when and why we switched to 24cal milk. I told her it was switched when we were admitted and I have no idea why. She said our current amount of food per day is significantly more then when we came in and that is why we have been seeing the amazing weight gain (plus she is not letting any of it go!)
I then had the joy of getting all of our things into the car. It took me two trips without Jillian first. Then I came back up and signed the discharge papers. On our way out we had to stop back at the GI clinic to have Jillian  weighted on the same scale she was weighed on last Friday. Her weight was 13lb!!!!!!
Jillian's swabs came back negative for any nasty viral infections so she just has a run of the mill upper respiratory junk.
We now have follow ups to do! We see one of her pediatrician's partners this Friday to check on her upper respatory junk. We see her pediatrician next Wednesday for a weight check and follow up. We follow up with GI next Friday for a follow up and our genetics appointment was set up for June. This momma is going to be running :)
Tonight we have been trying to adjust to life with an attachment. I think this next 24 hours will be the hardest.

And....

SSSSSSSSSSSLLLLLLLLLLLLLLLOOOOOOOOOOOOOOOOOWWWWWWWWWWWWW Day here. I was hoping for more tests however we really did not do any.
Jillian choked on her 15ml bottle at 9pm last night and continued choking off and on for a long time. During the night she developed more of a cough and my mom and I sat straight up multiple times during the night. Around 3:30 the coughing was so bad that mom decided she would just stay up with her. I got up at 5 to pump and took over so mom could get some sleep til a little after 7.
The morning started out like any morning here... with a lot of visits from different doctors. We talked about several different things with genetic disorders and feeding concerns. I brought up that GI had mentioned on Friday about the possibility of  a GJ tube to see if the tube in her throat was making it worse and the doctor said we would talk about it at rounds but we did not. I don't want to seam like I am begging for my child to have surgery but if that is something that is going to help her then I am at the point that we need to consider options that might help. When the team came in for rounds they said that they wanted to try mixing rice cereal into my breast milk and give her that in a bottle. We also decided that she would get more stool softener and suppository today  since she was not seaming to regulate herself yet. Lastly we decided that since Jillian was coughing, and had green gook coming from her nose and eyes that we would test to see if she currently has some sort of viral infection going on that we might be able to catch or help before it got too bad. It will be a little while before we get those test results back. Until then we are in isolation now so everyone that walks in gets to get all decked out in gowns and masks. I feel bad for them.
Jillian got her bottle of 15ml of fortified breast milk with 1/2 tsp rice cereal around 12:30. She took it down just fine like normal, the only difference being that it took her a little longer because she was drinking thicker milk through a size 1 nipple. Shortly after she was done eating you could hear her refluxing and then she started choking again. The nurse came in and she said she could hear her refluxing from the door. Jillian was able to keep the food in but she had to work very hard at it and was very crabby. Around 4:30 she started refluxing again (she had not taken anymore orally since 12:30) and started choking. She has been refluxing on and off all night and choked again while she was playing in her crib after getting ready for bed. For now we have gone back to nothing by mouth.
After the 12:30 choking we decided to do a 24hr pulse ox study to see if she is table to keep her numbers up while choking. So far she has been pretty good about keeping her numbers up and has only gone off a few times when the machine was not also reading low reading. Pulse ox is so hard to take on little ones.
Today we had some visitors.  My mom came up last night and spent the night with Jillian and I since Brent headed home last night so he could work today. She had taken today off to go to genetics with us and instead just spent the day hanging out with us here. She is so amazing! She also ran to Target for me to get me some more leggings and plain T-shirts and to get Jillian a few more outfits that snap all the way from head to toe and don't have feet. The gowns here are way too big for Jillian but they need to get at her often so it is easier to have her in a quick opening outfit.
Our friends Gary and Kathy came up this afternoon and hung out with us. Brent came back up after he got done with work today. Tonight our friends Jaime and Jason came over and mom hung out in the room with Jillian while the four of us went to Cafe West for dinner. It was so nice just to talk and pray together.
Jillian ended up spending about 85% of the day sleeping which is not like her so I know she is fighting something. She just wanted to be held today and I figure with everything we are putting her through right now that is ok, it is just going to be hard to break her from it when we get home because she will not get held like this at daycare.
Well I am going to follow the advice of when a baby sleeps you should sleep too!

We are so blessed!

Jillian and I are so blessed by so many people in our lives but one person that is amazing to us is Brent. I am so fortunate to have such a wonderful husband that loves me and baby girl. Last week he came home and said that Jillian had a gift coming in the mail. I asked what it was and he said that she would have to wait and so would I. The onesie came in the mail on Friday.
He is so thoughtful! When Jillian first got a tube I started researching stuff and came across the feeding tube awareness site.  I found these onesies and thought they were so cute! She is our little supper tubie!She will have to wait until she is a little bigger to wear it but it should be sooner now that we are on the NJ tube!

Yup... I thought so

Jillian taking an afternoon nap

So after the swallow study speech went to the team of doctors and said that she thought Jillian could take whatever by bottle because she was not aspirating. Thus the team said that the three 15ml bottles a day that Jillian was getting of water was going to switch back to milk. I did not think this was such a great plan but I went with it figuring it would not last long anyhow, and if it was not going to work I rather it fail here then at home. Well it lasted even less time then I thought. Jillian got her first milk bottle to drink at 9:00 tonight and within 5 minutes she was choking and turned red and has been coughing off and on since. I have decided no more milk bottles for now. I want her to continue the skill of sucking but I can not have her choking on milk... that is why we are in here. I guess we will discuss it more at rounds. I am willing to keep doing water as long as she does not choke on it.
The stool softener and enema have worked today. She pooped twice today. Once this morning right after getting it and the second time was while choking tonight. It is not her normal poop though and I can tell why she needed some help getting it out. :(
My mommy came back tonight to hang out with us. She will be with us tomorrow while Brent is at work. I am so fortunate to have such amazing family and friends that love us and take care of us.
Well I need to go watch Jillian sleep. She is choking a lot again and just started turning red again while she was sleeping in her bouncer. If it keeps up like this my mom and I will end up taking turns staying up tonight with her. Right now she is back in grandma's arms.

We know its not something we knew it was not

After rounds speech decided that they did not need to watch her take something by mouth before they did a swallow study so we went ahead with just doing a swallow study. Jillian sat in a chair like contraption and i fed her. She sucked just fine like I thought she would and did not choke while she was eating, which she does does not do anyhow. They completed the test at that point and said she was fine and that she does not aspirate. I did not think she aspirated while eating, but when it comes back so it was frustrating that this test did not last long enough to see it come back and if she was aspirating on that. She has however the barium mixed milk has been a yo-yo in her system since the test. She has not puked any of it however she only got 15ml (1/2oz) of it. I know we needed to do that test to rule the swallowing out but it kinda feels like a waste and frustrating because they were trying to say that she defiantly does not aspirate without watching the time of concern for aspiration.
Genetics also came up today too. We met with a resident first (who was on rotation on this floor last week so we have seen him twice now in two different rolls) and her asked us what is new since the last time we met with genetics when we were inpatient. A couple of hours later a geneticist, the resident, and  someone else came into the room. They looked her over and said that she is cute and that in their line of work that is a good thing. They noted something with her ears and chin... not sure what. We talked a little bit of the possibility of a mitochondrial disorder. The only thing they can do for testing for that is blood work and urine. They can do a muscle biopsy but they don't like to do those on a 4 month old. They said for now we just need to focus on getting her food and that we would talk more later. They also said time would tell more about all of this...
So for now we sit again and wait for rounds to see what is next...
We have had some visitors today. One of our ministers came and visited us and my aunt and cousin. We were laughing when my aunt and cousin because my cousin is a frequent visitor to this floor of the the hospital and one of the nurses heard his voice and came in to see why he was here. 

The plan

Jillian did pretty well over night. She tried ripping her tube out this morning. With the bridal in it is not taped to her face (it is taped behind her ear) so she can get her whole hand around it. She screamed like crazy from that... one more reason the bridal is not my favorite thing.
Rounds this morning brought a packed house. Monday is doctor change day so we had last weeks and this weeks doctors all in the room. (I like new docs a lot!). Here is the plan:
1. Jillian has not pooped since Friday and is getting increasingly upset when she has to pass gas. We have decided to give her a suppository and a laxative. Someone may need to save us from the poop later today!
2. Jillian's blood work was off in a few different areas when we were admitted. It looked better yesterday but still not back to normal yet. They are looking at running those labs either tomorrow or Wednesday.
3. The first thing they want done is for speech to come evaluate her swallowing. I don't expect this to do much because they have watched her eat once before, but it will be good to have done second  time.
4. They are talking about having a swallow study done if speech thinks it is a good idea. Im game for this:)
5. They have currently decided that we are not doing a PH study, at least today. We will see what tomorrow's idea is about this test. They said that because she is not eating anything but negligible water they don't think this test will show anything right now.
6. We had an appointment to see genetics tomorrow. They are going to call down to genetics to see if we can just do the appointment as a consult in our room.

Currently we are here until at least tomorrow. Our new attending looked at me and said she will be here all week and hopefully we leave before she does...
 

Jillian's 3rd Month

I have wanted  to get Jillian in for photos for the last month but between time and money it has not happened, so I decided to share the photos I have taken with my phone with the world instead! I have decided that I want to start taking more of her photos with my camera since they are better quality... however my camera battery just died. While I like the features on my camera I will never buy the same kind again because it has a battery pack and I cant just replace the batteries with AA batteries when they die. This leads to me forgetting to charge my camera so more often then not I have a paper weight with the abilities to take photos... if only it turned on :)

cue the Jeperdy waiting sound...

Today was wait day.
Jillian developed a cough over night that kept waking her up. The nurse had the doctor come in and listen to it and they decided it was either irritation from the new tube and bridal or she is coming down with something. As the morning went on her cough continued and she developed a runny nose with lovey green gook. By tonight the cough and nose are a little bit better except now she has started to cry when she coughs. I would imagine her throat is quite irritated.
Other then the cold symptoms today has been rather uneventful health wise. She is going continuously on the pump (I had a nurse want to shut it off this morning) and seaming to do well with that. She had 3 bottles with water in them and did well with them. You can still her refluxing anything that she takes by mouth (including her acid reflux meds) but because she is getting so much less by mouth it is not as bad.
Today I left the hospital for a little bit to go to church. It was our church's 90th anniversary! Jillian is the 6th generation attending the church and it has been such a large and important part of my life and our family's life. It was good to see my dad up on stage playing guitar like he has for so many years. Our church first started a contemporary service on Saturday nights when I was little and my dad has played in the band ever since it started. I enjoyed the service and the celebration, it just would have been nice to have Jillian and Brent there too.   
Tonight we had more visitors. Dan came over and he and Brent ran to REI. It was good for them to get out and spend some time together and in a place they enjoy. My parents came up this afternoon too. Seth stayed in Kenosha to work on homework and he was not feeling well. He went to the walk-in clinic after church because he was afraid he had pneumonia again (He was in the hospital for 15 days in November with double pneumonia, a staff infection, infected shoulder, and sepsis that led to organs starting to shut down). Luckily he does not have pneumonia currently however he is experiencing chest discomfort.
Our friends JR and Heather came up with their kiddos Eli and Jolie tonight. They brought everyone cookies which was a good ending to the Cheesecake Factory take out mom, dad, Brent, Dan and I had for dinner. It was fun to visit with others.  
While dad and Dan went and picked up dinner mom took Jillian for a little while and Brent and I walked to the family lounge so we could have a little bit to catch up with each other. Even though we have been with each other most of the day for the past two days we have been in take care of the baby mode so it was nice to get to catch up with each other and talk about the week ahead.

All the people still in our room after visiting hours were over :)

Well, it is starting to become a trend of everyone around me snoring so I think I am going to pump and put little miss to bed in her bouncer (she is "helping" me type right now by sitting on the mouse pad part of my laptop asleep). The hospital crib is just too big for her to sleep in and she ends up at the end of it turned sideways so we are very grateful that grandma and grandpa brought up the bouncer from their house. I will update tomorrow as we know what is happening. Tomorrow we should have a new plan of what the next few days will look like and what tests we are going to run.
Goodnight all!

sleepy by and goodnight...

The sleepiness is hitting right now. We did not sleep much last night so I am really hoping for a few hours tonight. This afternoon my parents, Seth and Dan came. Once they arrived my mom and I went down to Cafe West to buy some parent meal tickets for while we are here and my mom and I sat down and talked for a bit. When we leave the hospital our lives will be different than from how we came and there will be some adjusting that we need to figure out.
Once my mom and I got back to the room the boys left to play disk golf for Seth's birthday. Mom and I spent part of our time looking up backpacks for the pump and the rest of the time playing with Jillian. She spent a lot of time sleeping today but when she was awake she was happy. She loved playing with her O ball and links however she kept getting them caught on the bridal. Around 3pm we gave her 15ml of water. She played with the bottle but she took it all and kept it down. Around 3:30 her pump ran out of food after I called them to let them know she was getting low. After about 15 min a nurse came in with more food we were able to get her started again. The boys came back around dinner time and Seth wanted sushi for dinner so we found one in the area that does take out. My mom and I went and picked it up. While we were gone Jillian was playing with grandpa and laughed for the first time. I'm sad I missed it but Brent took video for me. Hopefully she will laugh again for us tomorrow because we have not gotten her to do it again since. While mom and I were out we stopped at Walgreen's to buy some soda. While we were there we decided Seth needed birthday dessert and we bought him the Walgreen's brand of cupcakes. We headed back to the hospital and we had a feast. Jillian slept through it all but she did get to join us in eating... just in her own way. Hospital visiting hours are over at 8pm for anyone who is not parents or grandparents so a little after 8 Dan headed out. At 8:10 we decided to give her a little more water. She had a very small choke and spit up some of it around 8:40. Around 8:30 Seth started to not feel well and they decided to head home. Around 9 they came in with her meds (since the nurse shift change at 3:30pm I have felt like things have gone a lot smoother and things have been done on time!). Around 9:20 we swaddled her and put her in her bouncer that my parents brought up. I'm hoping they let her sleep the night in the bouncer since last night I kept having to get up and readjust her in the bed. Jillian only sleeps in a bed in the hospital and this time she has a large crib so she slides around in it a lot and kept ending up sideways at the end of the bed so she was no longer at an incline. Hopefully she sleeps better too in the bouncer since it is more like her rock-n-play.
Well I think it is time for me to get some sleep. Brent is snoring on the couch and Jillian is putting up her last fight before she finally goes to sleep.

A new plan

I finally have a clue of what is going on here! Rounds can be the best time of the day and sometimes I wish they happened more then once a day.
Jillian took a bottle around 9am and started choking promptly after. Rounds started around 9:15 and Brent stayed in the room with Jillian because she was choking so much and I went into the hall for rounds. They asked how the night went and I told them that it was uneventful. I informed them that she had been choking for several minutes at that point and they stopped and listened to her choking. They then decided that all breast milk feeding would stop by mouth. She is now on continuous feeding 24 hours a day at a rate for 34 ml/hr with breastmilk fortified to 24cal. She gets to try 1/2 an ounce of water 3 times today but if she chokes she is done with oral intake. The purpose of the water is to keep the eating skills however the volume is not being counted into her needed fluid intake. We are also trying to figure out how to make up for the calories lost yesterday... That frustrates me because she did not need to get as behind on calories as she did but lack of communication caused that.
We also talked about a few tests. I asked about a swallow study to see if she is aspirating and  the doctor told me that she can hear her aspirating just by listening to her so she did not feel that was needed. We also talked about a ph study. The problem with that is it is a second tube that needs to go down her nose. Since Jillian is so little they cant put two tubes down one nostril and she is too little for a tube to go down each side so they said the feeding tube might have to come out to do that test and it is a several hour long test.
The decision was made that no tests would be scheduled until Jillian's GI doctor is back in on Monday (right now we have floor drs) This means we will be here until at least Monday and longer if they decide to run tests on Monday.
There has been a little talk of doing surgery and placing a G or GJ tube. With that she would no longer have a tube coming out of her nose, instead it would be surgically placed in her belly. This would make it less like likely that she could pull it out. She currently has a bridal (plastic piece that holds the tube in place and is looped around the inside of her nose) on her NJ tube to try to secure it better then just tape. I'm not a big fan of the bridal since it hurts her if she pulls on it, however it was placed when the NJ was placed. It is really hard to keep a 4 month old from pulling on a tube coming out of their nose and she hits it with toys all the time. I am not excited about handing my child over to surgeons but the past few days have proven even more that this is not a short term thing and having the tube surgically placed might be the best thing.
Around 9:50 this morning I ended up calling the nurse in to see when we were going to hook her back up to the tube (she had been off for over 2 hours). She came in after a while and told me we would start again and that our care partner would bring in a bag. We got the bag and I hooked up her tube and got everything started. Right now she is in and out of sleep. They brought her a mobile and she seams to like it (its not her animal friends though, which she finds fascinating)  We are just hanging out.
Jillian would also like to note here that she wishes her uncle Seth a very happy 21st birthday. You said you did care what we did today, so she decided that we should spend it at Children's. Next year... make a plan :)

We got a good view this time! I can see the mall :)

frustrated

This morning brings the reminder to be kind to others even when you are overly sleepy and frustrated. I currently dont know what is going on here and that is annoying. It seams like each person we see tells us a different story of what is going on and what the plan is. I am not sure if they just dont know what is going on, but if that is the case we have an even bigger problem here. We were told last night that the pump would be running at 23 ml/hr and then they set it at 30ml/hr. They said we would give her a bottle when we turned off her pump during the 1 hours brakes. Then the pump was turned off and we did not get a bottle. I called and they said that she would get a bottle as the tube was starting back up. They just came in to give her a bottle (it is 9:00 and she has been off the tube since 7:50) but they did not hook her back up.
This time we are on the GI/pulmonology floor. The do not seam to be be very use to babies here. The one thing that was nice about the other floor we have spent time on was that all kids on the floor where under 2 so they had spaces for storing breast-milk that mom's could access and areas to make a bottle. On this floor we have to rely on the nurses for all of that and the urgency to eat at a specific time is different for an infant then an older child. I think that might be where some of my frustration is stemming from. Even being at a children's hospital you don't realize how different it is from an infant floor to an everyone floor until you make that transition. The staff has been having to figure out how to order labels for my breast milk and  they did not know how to fortify breast milk.
Jillian has developed a very runny nose while we have been here. Normally she sounds really congested but this is a lot more

A new floor

Today we had a 12:30 visit with GI to discuss Jillian's choking and vomiting. She proved to us once again this morning why we needed to come when she puked everywhere for the second morning in a row. My mom joined me at the appointment. We did the typical first. A weight check (she is up to 12lb 12oz), length (24im) and head circumference (I did not pay attention...ops!). Then we were visited by someone who I think is like a CNA or something. She asked a few base questions and then a nurse came in. I filled her in on everything that has been going on. She then left and reported everything to the doctor. The doctor came in and verified what the nurse told relayed to her and took a quick look at Jillian. She then said that we could not continue like we have been and that she needed a NJ tube (this is a tube that goes into the intestines  instead of the stomach). She then said something about getting paperwork started and a bed. My mom and I looked at each other a little confused about what exactly was going on. After a few minutes the doctor came back in and said they were securing a bed for her to be admitted and that we needed to head to radiology to have the tube placed (Because these tubes go into the intestine they have to be watched being placed). We then left GI and headed to the hospital section. (Children's here is all connected, GI is in the clinic building and radiology and patent room are in the hospital. The two are connected by a skywalk)
We got to the skywalk check in desk and GI was calling my cellphone. They said that radiology had a 2 hour back up and that a bed was not ready for us either. We had not had lunch yet so we decided to stop at a bathroom and head to cafe West in the hospital. I barely got a few bites into my lunch and GI was calling again letting us know they had a bed secured and once we were done with lunch I should head to admitting. Within a few minutes of that the loudspeaker in the hospital announced that the parents of Jillian needed to call a certain number. I then went to the desk and asked where a phone was to call that number. They told me there was a phone around the corner. I did not find a phone around the corner but I did find the admitting desk. I then went and checked in with them. They said that it would be another 10 minutes before her bed would be ready but that I needed to bring Jillian into the admitting office to get her a name badge. As I was walking out of the admitting office I was greeted by someone from radiology. Apparently admitting was not the one who paged me, that was radiology and they came looking for us since I told GI that we were in the cafe. She told me they were ready now for Jillian. I ran Jillian back to admitting quick to get a band and then headed to radiology. We checked in (this took a long time because the orders were for us to have the test done once we were in the hospital and she was still yet to have a bed) and had us wait. They then called Jillian and I back to a work room where many people came and explained what would be going on and I signed consent. Jillian was not too pleased with this process of people talking to me and let us know, however they provided sugar water for her passy so she was tolerating it. I then had to hand my baby over to complete strangers and go back to the waiting room with my mom. It took a lot to not sit in the waiting room and cry. My mom and I watched Lady and the Tramp as we waited. Eventually the radiologist came back and said it went well and she would be out shortly. After a while a nurse came out with her and escorted us up to West 11.
Once on the floor we had a care partner come in and start Jillian's vitals and the nurse came in. We then sat for a long time seeing no one. After a while the nurse came in and went through the long list of admitting questions. We also had the first resident come in and do a physical exam on her. After a while again a second resident came in and took Jillian's history and did a physical exam. Around 7pm we were finally given the go to feed Jillian a bottle of 45ml. She took it like any other bottle (not like she had been starving, which she should have been since she had not had any food since 11am).
It is now around 10:45pm and we are still waiting on orders to be figured out for feeding. They are talking about a continuous feeding schedule where she is hooked up for 21 hours of the day with three 1 hour brakes. Jillian is sleeping comfortably like none of this is going on, which is a blessing that she is not screaming but it is also concerning that a child who should have been hooked up to a feeding tube for 3 hours now is not asking for any food, plus she missed one of her bottles today.

It is now 10:50 and the nurse just came in wanting to start her on just plain breast milk going into her tube because she thought she needed 24 cal Alimentum. We explained to her how you fortify breast milk and I looked up the recipe online for 24cal. We then mixed it and she set up the pump (we had to explain to her how to set it up and still there is a bag with  150ml in it with a pump set at 3000ml and a bag with a ton of air in it). We are running at 30ml/hr. Hopefully this helps! I will try to keep posted as things go on. We have no idea how long we will be here or what the plan is right now. There has been a little talk about a few tests that if they decided to do them would have to wait until Monday because the appropriate people are not in on the weekends but we will see. For right now we wait... and try to get some sleep!

I'm 4 months old... thus I can do what I want!

Jillian turned 4 months old Sunday! Hard to believe that my baby is that old already! She decided that she wanted to give herself a gift... no tube for a few hours. We were at church Sunday morning and Jillian decided it was scream time. We ended up spending most of the service in the hallway instead of in the service. I was walking with her trying to get her to sleep. She was almost asleep when she started to cry again and throw her body in reflux pain. In her flailing she got her hand under her tube and pulled it out. I then had to get all the tape off and clean up the mess. Thankfully I had some helpful people around!
We put the tube back in her in the afternoon with the help of my parents. Each time we have needed to put a tube in they have been with us so we have gotten into a routine. It probably looks a little like hog tieing a cat on the dinning-room table.
Jillian has gotten into a lovely patten of choking around midnight. At that point she has been on the pump for 4 hours. I am not sure what about this time is causing problems but I have been waking up each night with her then. Some night are worse then others and some nights she has some regular coughing mixed in there too that sounds like a dog bark.
Today we went to the doctor for her next shot. She was up to 12lb 9oz. She got the Hib vaccine and really did not care about it going in. She was more upset that while we sat there for 10 min after to make sure she did not have a bad reaction immediately, I tried fixing her tape. Since we changed her tube on Sunday we have not gotten the piece of tape by her nose just right so they keep falling off (we use duoderm by her nose) and I wanted to fix it when it started falling off so we did not end up putting a new tube in again. I ended up having to redo it again in the car before we left because the replacement was already falling off. I think I have it good this time... hopefully! She ended up eating her 11am bottle in the car too before we left. We had a 10am appointment but the Dr was not in today and they had a hard time figuring out what shot she needed today since she is running on her own timeline so we did not get the shot in until 10:40, and then wait in the office around 10min to make sure she is ok and it is time for her to eat. There is a part of me that is hopeful that part of the screaming in the doctors office was for food because she has not seamed to be very vocal about wanting to eat lately. She would be ok with sleeping through some of her meals if we let her, so while I don't love the hear her cry there is a part of me that is grateful when she asks for food.
I want to put a big shout out to all of the people who have done there best to make our lives a little bit easier lately! Some of you have gone out of your way to do kind and helpful things for us and it is truly appreciated! It has been amazing to have someone bring us dinner in the mix of crazy dr appointment schedules or come over and wash a few dishes.
We are not currently at a point that we feel ready taking Jillian out while she is hooked up to the pump (we will get there) so it is amazing when people are willing to come to see us, or eat dinner early so we can be home in time. We appreciate it so much when we don't have to explain over and over why something or a situation has to be a certain but when people just roll with our craziness right now. Through all of this you really find out who cares about you and who has your best interest in mind. I have felt a little guilty lately that I have not been able to be as involved in our friends lives as I would like or that I have not been as emotionally available to others. I really do love my friends and I am grateful for the forgiveness that some of you have had to extend lately when I am not able to be as good of a friend as some of you deserve. But like Brent said, our true friends and family really love us enough to love us where we are right now and walk the journey with us and do not judge us and for these people we are more grateful than we can express!

Jillian with her giraffe friend this morning. She liked eating his feet!

Our next appointment is with GI this Friday but until then I am going to cuddle up with my little girl with her shot and love on her. I might also try to get some cleaning done..... maybe!

The nights are hard

Tonight I broke down and I let the supper mom exterior come down. Jillian has been choking more and more this week and I have been waking up more during the night this week to her choking. Before Jillian I was an 8 hour a night sleeper, and I really function best on at least that. Thursday night I got around 4 hours and I feel exhausted.
Last night I was up for a few hours in the middle of the night with her because she developed a barking cough. Yesterday during the day she was running a 99.3 temp under the arm and had a 5 minute long coughing spell and several other smaller ones. By the time we got home (after spending the day in just a onesie) her temp was down to 98.7 rectally (at least that is what the calculations looked to come to because our thermometer is stuck in Celsius). While I was up she was throwing her head back and moaning a bit and choked a few times.
I am really worried about the amount of choking and I am so nervous about her choking while I sleep. Today my parents, Brent, my brother and I took a refresher course on infant CPR and we bought a sleep monitor that should arrive in the mail early next week. I ended up getting a monitor that clips onto her diaper since the pad ones will not fit in her rock-n-play. I am hoping it works since Jillian sleeps in a sleep sack swaddle so that  she can not touch her tube at night, but that also keeps her rather bundled. The least we can do is try it because a little piece of mind right now could go a long way. I worry about sleeping. I worry about something happening to her while I sleep and I not catch it for a few hours and it be too late. This makes me feel guilty about going to bed but I know at the same time that I have to in order to be a functioning person and a mom. But I also know at the same time that they figure many children that die of SIDS had something preexisting going on. However my body wont let me stay awake all the time. I have always had the gift of randomly falling asleep if I am tired enough. We stopped going on to a movie the is not Disney a while ago because I just sleep through it and my bed is a lot more comfortable then paying $8  or more to sleep in a chair in a cold room with a lot of people.
I feel that God is working a lot in my heart right now. I have to keep reminding myself to let Him in right now, just like getting sleep sometimes, I know He is the best one for me right now, however I am stubborn. I like to try to carry it all on my own. For me dealing with heath issues has always been a part of life, and in my family I kinda expect it, however it is different when it is your kid. But as much as I try to be supper mom, I have to remember that even supper mom has to rely on the one who gives strength to have strength. Somedays though this concept is a lot easier to spell out in a blog post
Thank you for all of the prayers. They are truly appreciated. We are so fortunate to have so many people that love and care about us. Well off to bed, that pump goes off at 2am not matter what time I hit the pillow :)

One good news

We are happy to report that her kidney ultrasound came back normal :) Thankfully the thing on her ear should just be a cosmetic thing that I think is rather cute! (and one of the first things I remember about her)

This good news however does not change the puking and choking. Yesterday morning she did not wake up puking or choking which excited me, however she did choke with her 8am and 2pm feedings. Today however I was eating breakfast in bed (not as ideal as it sounds, I pump and eat in bed while I wait for her pump to alarm, the delicacy of the day was a protein bar) she started to choke. It was not as loud as her other chokes and probably would not have woken me up from my sleep however it freaked me out. How many times is she choking like this during the night that I don't hear? Could she be aspirating in her sleep and I don't know? One of the hardest things would be to loose her while I was asleep less then a foot away from her. My heart has just been crushed all day with the thought. However I need sleep too, so we need to find a solution here. She also puked this morning on the way to school. I did not notice it until I went to put her in her carseat on the way home. We see GI on the 19th and I can't wait to come up with a plan to try to figure out what more we can do to help her.

Tonight my amazing mom came out to help me around the house. She is such a blessing in my life. She will drop what she is doing and come over to give me a hand when I am overwhelmed. Tonight I have been warn out between being scared of the night and the need to get the house clean without the energy to do it. Mom brought out dinner and then hung out with Jillian while I did laundry. Jillian's tummy really seamed to be bothering her tonight. She has not pooped since Tuesday and that could be part of the problem, or it could just be her tummy was bothering her. Mom walked and sing to her for almost 2 hours. It was such a blessing to us all! Now she is asleep and I am looking up the sleep monitors on the Babies R Us website. Trying to figure out if they will work in her Rock-N-Play and if they really do work. We will see, maybe a weekend trip to Babies R Us is in order. For now it is bed time for this mommy. The pump needs refilling in just a few hours...     

More dependant

I just herd back from GI and they have decided to up the amount Jillian gets by tube. They were not able to confirm the schedule with the doctor today because she was gone but the nurse talked to nutrition and they think this new schedule is what the doctor is wanting. It does not currently up her by any ml a day but it gives it to her more slowly. The nurse is going to double check with the doctor tomorrow. This is her new schedule:

She use to take 5 bottles a day and was on the tube from 9-6. Trying to figure out right now the family adjustments to have her hooked up by 8 each night. I'm sure soon it will be second nature to us, but we have been kind of use to having a baby who will sleep anywhere so we just tote her with us. I guess we are just getting use to what it will be like later when she has a bed time.
I also got a call from home medical supply at 4:00 (just before I was going to call them) and they just realized then that I needed more supplies and that they could not get them to me today. I got it worked out so that I am able to have them delivered to my work tomorrow. Sometimes working with all the medical professionals is a full time job :)

I feel like these two pictures tell Jillian's feeding story right now: 

Jillian's Easter breakfast

Her first night with the pump on the pole

The math does not add

Sitting around on my day off waiting for the supplies truck to arrive. It is like getting cable installed or a new appliance delivered... they will be here sometime today... I am looking at having it changed so supplies are delivered to my work so I don't have to spend every-other Tuesday at home, plus the next two Tuesdays that they are suppose to deliver Jillian has a doctors appointment. 
So while we wait we are getting other things done. First thing this morning Jillian had her ultrasound of her kidneys. I was surprised at how well she did. For the other ultrasounds she has had she has screamed like crazy. Today she kept a close eye on the woman but she only made a few little noises and enjoyed grabbing the cord for the wand and holding onto the washcloth the tech used to wipe up her one side after she was done (thus getting the goo all over). I'm not sure if it is the fact that they were not pushing on her stomach today or if she was just in a better mood, I'm just grateful it was not a scream fest :) They said her doctor should get the results today or tomorrow.

We also got our first call back from GI today. I called yesterday to let them know the weekend went well as to see what the plan is now. They called back today and said that the doctor wants us to run the pump for 10hours instead of 9 at 42ml/hr. I thought about that as we went on with the conversation about how often Jillian is getting weighed at a doctors office and before the nurse hung up I asked her how much we would be putting in the pump during the 10 hours and she said another 42ml. This made really question the new plan. Jillian had a hard time with an increase of 15ml, how is she going to do an increase of 42ml. Also Jillian eats at 8am, 11am, 2pm, 5pm and 8pm, to get 10 hours on the pump and me still get to work on time we would need to start the pump at 8pm, however she gets a bottle with 45ml in it at 8pm. I know that she will not be able to handle this schedule. The nurse then says that we might cut out her 8pm feeding then, however that puts us -2ml instead of up 15ml like we were trying. She then decided that she would send nutrition a note and they will call me. So we wait...
Jillian has been having a good day. She had a good size choke this morning with her bottle and food ended up coming out (just as we were getting ready to walk out the door). After we went to the ultrasound I stopped at work to pick up milk because I had forgotten everything I pumped yesterday there. When we got back I put her in her swing so I could eat and pump. After I was done pumping I came back into the livingroom to a nasty smell. I had just been working on cleaning Jillian's lunch box from thirty-one bags that had a bag of breast milk open in it this weekend (note, they are not liquid prof and liquid will leak out everywhere from them). I thought the smell was bad food from this weekend since we had been gone at a wedding from Friday afternoon til Sunday night. I started looking for a dirty dish and came by Jillian to realize the smell was coming from her diaper. These days I have a love/hate relationship with her poop. Since going on fortified breast milk she does not poop consistently so it is a relief when she poops however the smell of it now is a bit much to handle!
Well it is just about time for the 2pm bottle. I need to wake the little girl who is sleeping on my chest 

Up and Down

This week we bumped Jillian up to 615ml per day starting on Sunday (3/31) since her feeding "days" start at 6am one day and go until 6am the next. The added 15ml went into her feeding tube at night and she ran at 44ml/hr instead of 42. This changed showed very quickly to be difficult. On Monday morning Jillian woke up choking. Tuesday morning she woke up throwing her head back (she does this many mornings). Wednesday she screamed most of the day. The crying was so bad I had my mom come and picked her up from daycare (thankfully she was on spring break) and bring her home. Thursday morning I woke up and went down to our kitchen to get my breakfast and Jillian's meds. As I came back to our bedroom I watched Jillian start puking (while the pump was still running). So Thursday I put a call into nutrition. By Friday late morning I still have not herd back and I was getting antsy because we are suppose to up her intake by 15ml each Sunday and I was not sure that was a good idea so I call GI. Luckily they got back to me and they talked with nutrition. The nurse and nutrition decided that we should go back to the 600ml diet and run her pump at 42ml/hr again. They told me to call back Monday and check in with how the weekend went and at that point they would check with the doctor since she was not in on Friday. So far this weekend has been better. She still wakes up throwing her head back but we have not had puke right away either morning and there has not been a major choking fit when she woke up.
Last week she also took to puking after her 2pm bottle. Thankfully she did not continue that this weekend since we were at a wedding away from home with our close friends. She did do little choking spells during the weekend, but not any that sent all the adults in the room out of their chairs.
She has developed a small cough this weekend. It is a little better tonight so I am hoping that something was just bothering her yesterday and that she is not getting sick.
Well there is snoring coming from both sides of me right now and I am thinking I should join their noisy choir since I need to leave for work at 6:40am.

A changing tide

Well it has been a while since a posted on here... the birth and first three months of a baby girl in fact. Our lives have changed a lot since then and in some ways that I did not expect, but I am loving being a mom! Sometime soon I will post the back story of what all has gone on and the timeline, but for now here is an update on all what happened at her doctors appointment yesterday. We went for her 4 month check up with her general doctor (I know she is only 3 1/2 months old, her doctor visit schedule is messed up, oh well!)

She is up to 11lb 13oz. When we went to GI on 22nd she was at 11lb 5oz. So in 10 days she gained 6oz. The goal is at least 1oz a day... But we are happy that it is a gain and not a loss!

We talked about a whole list of things. On Saturday when my mom and I were at Khol's Jillian had 2 nasty poops. During that time of undressing her we noticed that Jillian's toes where purple (like soneone hit them with a bat). By the time we got home they where back to normal. I brought this up with the doctor. She said that if it happens again that we will need to go see a cardiologist. Now I have a reason to look at her cute little feet more :)

When she did her physical exam her doctor noticed this dimple on Jillian's ear. Her doctor asked how long it had been there and I told her since birth. She asked if anyone had talked to me about it and I said no. She said it can mean one of 3 things. 1. It is completely cosmetic and nothing to worry about. 2. It can be associated with hearing loss, which is less likely in Jillian's case because she passed her newborn hearing screening or 3. a problem with her kidneys. We are now waiting on scheduling to call so we can set up an ultrasound of her kidneys to rule that out.

We talk about the pile of paperwork that children's had sent the doctor so she was up to date with what was going on there. That was a little confusing because they sent her results for a test from genetics that did not make much sense. Her nurse ended up calling up there and they said that genetics will go over that with us on the 23rd...

Her doctor laid her down during part of her exam and Jillian promptly started doing her funny breathing. Her doctor asked how often this happened and I told her all the time and that normally it sounded worse then what it was at that time. She looked me in the eye and said "I dont want to scare you, but you know CPR right." Thankfully I just redid my certification, however I REALLY hope to never use it. Her concern is that Jillian will choke on her reflux and she would need CPR until we could get her more help. Thus anyone who will be responsible for Jillian from now on needs to know CPR.

We also talked about immunizations.  Jillian has always been on a modified schedule for shots because I have an egg allergy and wanted to be cautious. She has only ever gotten 2 shots at a time. However the last 2 time she has gotten shots she has ended up at Children's 11 days later. We have decided that for now she will only get 1 shot at a time and we will space them out so she gets one every other week. This is as long as she does not get sick. If she does we are done with shots for now. We are not sure if her immune system just cant handle the stress of them. So for now we will go to her ped's office every other Tuesday for the next two months to keep her on track. She did get one shot yesterday so she is really sleepy today.

So that is the Jillian update for now.

A picture of her sleeping last week. That is kind of what today has looked like. Except today she has spent part of the day sleeping on me in her new Moby wrap from the Easter Bunny. That has been amazing today because she has wanted to be sungled up and this way she has been able to be close while I get a few things off my to-day list checked off.