GI

So I was going to start writing this earlier but then I started watching Speechless and I just kept laughing!

Yesterday morning we all slept in a little. The beds at rmh are very comfortable... and I am a person who is not a huge fan of hotel beds cause I never can get comfy enough but these beds are great. We got up and went to the kitchen and had breakfast (they have cereal and oatmeal available all of the time) and then we went down and did some art in  the art room. We headed over to the hospital around 11 and grabbed lunch at the Subway in the skywalk. Jilli decided she needed her blanket and slippers with her to go over to the hospital.
We went up and checked in for Lydia's GI appointment. The dietitian said her weight gain looks amazing and has come back up really well now that she is getting food in the best way for her. Our advancement plan is to increase by 1ml and hour every other week with a target of 49ml/hr. Little miss has developed rolls :)
The doctor came in and first asked about how Jilli is doing since her ER trip. She asked what we were going to do about the daytime draining and we all agreed that it was best to continue as she needs it.
Focus then turned to Lydia (this was technically a Lydia only appointment). The doctor looked at the tube. She said it was a bit of a fight to get the tube... that my least favorite IR guy said no but she talked so someone else and reasoned with them why this was the best thing for Lydia and the other guy agreed to do it. I get policy but I also get doing the best thing for a child and my kids are really good at not fitting into policy. We talked about the clip that is on the tube and how it was too close to Lydia's skin and decided we needed to do something about that at the end of the appointment. I asked her about the med dose and she said she would look to see if Lydia is on the right dose. We also talked about ways to drain Lydia's g port and decided that for now a diaper was probably the best choice (her g port is the size of a med port so many of the other extensions and draining solutions wont work) She talked about how the goal is to get Lydia a button when she is around a year old. With the new clip on it, it is much easier to manage then Jillian's GJ PEG. During the appointment Jilli almost accidentally pulled out her GJ tube but thankfully I caught it before it came out although she said that her tube spot now hurts.
The doctor left and a little while later two nurses came in to look at the clip to see if they could loosen it but decided they needed to page someone else to come do it. They asked us if we wanted to wait or come back a different day and I said that since we were already there that it is best to just do it. The third nurse came and showed up how to adjust it (apparently it comes with a special tool but a finger nail works just as well) so we were able to get it loosened so it was not digging as much.
We then headed back to rmh to start packing. I got a message from a friend who's kiddo was in the hospital that things were not going how anyone wanted with his health so Brent took the girls to art therapy and I headed over to the hospital with chocolate. Medical mommas have to stick together and sometimes what is best for the soul is a hug, time to vent and a little chocolate. I headed back to rmh and we got things packed up and worked on cleaning the room up. By this point it was time for dinner and we decided it was smarter to eat there and then leave.
Friends that we met at rmh were there for dinner too so we hung out and talked and checked out. Jilli was having a little bit of a hard time breathing but started to do better. We then headed home.
We got to Mooreland Road and there were cop cars all over and since I had been living in the hospital bubble I had not idea that Trump was in town and they were closing off the interstate for him to head back to the airport. Brent was in his own car and was a little behind me so he got a little more stuck in the mess. Jilli started freaking out that someone had hurt her daddy and that was why there was all the lights. She was crying that she didn't want someone named Trump to hurt her daddy. She didn't understand why someone going to the airport needed that many cops.  She kept saying that she still needs a dad and she doesn't want him gone. It was heartbreaking! Eventually I ended up calling Brent so she could hear his voice. She offered him an ice pack incase Trump hurt him. Daddy told her not to worry, that Trump would not hurt him. We all got home and cuddled for a little bit and then put the kids to bed and Brent made formula and I worked on picking up the house a bit.  I also sent GI a message. I had forgotten to ask them about adding salt to the girls' diet like genetics asked and I realized that we never found out the new dose of her reflux med. Hopefully I will hear back soon!
This morning we had Lydia's nurse. She said that since Lydia is doing so well gaining weight with the j feeds that she is discharging us. I really liked our nurse but am grateful that we are past the point of needing to do weekly weight checks! Oxygen came today too. Jilli also wanted to spend time today playing with Lydia which was sweet! Jilli also decided today was the day to ask where babies come from... oh miss Jilli! She also asked if I was old enough to have lived with dinosaurs...

Yesterday the doctor made a comment that really hit me. We spend a fair amount of time around other kids with special needs and you try not to compare kids of who has more needs and such. The doctor told us yesterday that she is amazed at how well our children do cognitively considering how nasty their medical charts look. Yes the word nasty was used to describe the girl's medical  charts... and she is rather right (if this was a new doctor I might have been a little put off by this comment but this comment come from a doctor who cares a lot about the girls, and she really is impressed) We always try to put a positive spin on the girls stuff, partially because it overwhelms people if we don't and we try not to dwell in all of the challenges. It was just a reminder of how medically complex our kids really are. Sometimes I question if other families need things more and if it is selfish of us to use things like Katie Beckett and Ronald McDonald House... I think it is a mix of wanting to make sure that other people are taken care of, not always admitting to ourselves how complex the girls are, and not wanting to overstep our bounds of things... I think this also plays into why we struggle when people ask us what we need because our thought is about others, but we are so thankful for things like Katie Beckett (Jillian's med costs are CRAZY!) and Ronald McDonald House (Jilli was so sad to leave there yesterday)

Thank you for all of the prayers the past few days! We really appreciated them! Thank you for our tribe of people around us!

Broch, throat scopes and a GJ

Whirlwind of a day!

Yesterday afternoon the girls and I checked into Ronald McDonald House and played and hung out. The girls got to go to the magic room and pick out a toy... Jilli was so excited for Peppa Pig bath toys and Lydia got a baby doll! We did art and played dress up until Brent got done with work. He then joined us and we got everything in the room and organized. We went and had dinner which was provided by volunteers (yummy berry chicken and rice and beans... a nice healthy meal!) and we caught up with friends we have made here. We then headed down for music therapy where Jilli got to make music with a music therapist and some friends. She LOVED it! Lydia was having a bit of a rough day and music therapy calmed her right down too. Brent and Lydia then headed to the room and watched the debate and Jilli and I went to the art room and hung out with other families. There is a reason this place is called a house... because they try to make it as much like home as possible and the other families here are in situations like yours and it is so comforting to be able to spend time with other families like yours. We hooked the girls up and neither of them thought that anyone needed sleep. I walked the halls with Lydia for a while and then we all worked at getting Jillian to sleep.

5am came fast. We got the girls dressed and headed out the door (we had to check into the hospital at 6am). I am so thankful for the skywalk to be able to walk right over to the hospital. We checked in and they sent us to the 3rd floor. Surgery check in was full because all of the first cases of the morning were checking in. They took us back to a pre-op room. Thankfully they let Jilli and Brent stay with Lydia and I. The anesthesiologist came in... he was AMAZING! He read up on Lydia before he walked in the room, he knew all of the precautions to take with mito and EDS and make sure we were comfortable with the plan. He said we would keep her on sugar water the entire time to prevent some issues that can arise from fasting and mito. You could tell by the way he was talking that mito was not new to him. Brent and I were impressed... and between our two kids we have been in the OR 9 times so we are use to the drill and this guy made Brent and I say wow. Our doctors came in and we talked. Lydia's pulse ox was ranging between the low 80's and 100. I asked the nurse if she could make a note about that incase Lydia starts having more breathing issues like Jillian so we have a record of it. They then took Lydia back. Jilli, Brent and I headed to the waiting room. A volunteer brought Jilli some pictures and crayons (Jilli also got a sticker book from rmh to play with during the surgery). Once the surgery was done they brought us into a  room to talk to the doctors.
First the ENT came in. She said for the most part everything looked good on her end except she has a spot above her voice box that is floppy and probably the cause of some of the funny breathing we hear. It is intermittent and nothing they can do about it now. She said it looked like it was waving to her. Then the pulmonologist came in. She said for the most part things looked good. The trachea is suppose to have defined ridges but Lydia's are not defined and are glossy. She said that indicates swelling. She said the entrance into her right upper lobe is higher then is should be but is not a concern. She took biopsies and we will get those back in a weak or two. She said there was a little bit of stuff in her lungs but not a ton (not as bad as Jillian's) and the lungs don't look infected.
They then had us go back to the waiting room. A few minutes later someone came and told us that Lydia was headed to IR to get her tube changed to a GJ. We were talking before surgery with the nurse about the tube change and the anesthesiologist walked in and said that he would personally make sure that it got done. The ENT said she asked the anesthesiologist after surgery if he needed help getting everything lined up for the tube change and he said that he had it. Lydia was taken right from the first recovery room right to IR to get the tube changed while she was still sleepy which was perfect and the best thing for her. They told us that once she was done in IR they would be bringing her up to the 4th floor to finish recovering. They had us then move to the 4th floor waiting area.
A little while later they came in and said that we could go back by Lydia. A nurse that we had before was in with Lydia which calmed my heart. We have had the opportunity to meet many great staff members at Children's and we are grateful when we see a friendly face.
We hung out in the recovery room for a while. The anesthesiologist wanted to make sure she was really good after they were in the lungs which I appreciate him wanting to make sure that Lydia was ok. After a little bit we took a look at Lydia's tube and opened the g to drain and started running water at a slow rate into her j. I ran down to the cafeteria and grabbed us some food since we had not really eaten and it was now 10am and my blood sugar was starting to have issues (I just can't eat before big things... I have rather lived on coffee today). We hung out for a while in post-op and Jilli watch TV and Lydia napped. The anesthesiologist came in to personally check to make sure that Lydia was good enough to leave. We then were discharged.
The original plan was to get a chest x-ray when she went to IR (pulmonology wanted it to have a baseline) but since she was able to go to IR sooner the chest x-ray didn't happen so I figured we would head back to rmh and I would call scheduling and see when we could get in but we ran into a friend on our way out who told us that you can go to x-ray without an appointment and they will slid you in between other kiddos. We headed down to x-ray since we were already at the hospital and they could not find the order so they had to call pulmonology to get it figured out. Once it was all figured out they brought Lydia and I back to x-ray... it rather sucked. She screamed and they had to tape her head in the right angle. Once that was done we headed back to rmh (honestly I was done being at the hospital... everyone had been great all morning and super nice but it was still emotional)
We decided that since Lydia was going to spend the day napping we might as well let Jilli do something fun. Ronald McDonald House has passes to different things in the area that you can check out so we decided to go to Betty Brinn. Tuesdays in September is a great time to go! Jilli had a lot of fun and Lydia rested. We met a family there who had a little boy around Jillian's age who wanted to know about her oxygen so they kindly came up to us and asked us if he could ask Jillian questions about her oxygen and we told them sure. We all had a good conversation as he asked Jillian about her different tubes and why she needed them. Jilli did an AMAZING job explaining her tubes and why she needs them. I am so proud of her. Then the two kids when off and played together. They had fun playing in the ambulance together. It was so sweet and these parents did a great job teaching their kiddo that while Jillian has differences it is ok to talk about it, its not scary, and that kiddos with differences are still fun to play with. My heart was so touched. The museum was also so sweet... they comped our parking for us... not something we were expecting but we were so grateful!
We then headed back to rmh and rested for a little bit (not that the kids took naps lol). Jilli played for a bit and Lydia puked ALL OVER Brent. It did not surprise me that she puked after the surgery but poor Brent took a ton of puke. Then we headed to dinner where the yacht club made ribs for dinner... they were AMAZING! I wish I didn't have hospital stomach so I could have enjoyed more of it!
We then headed down for art therapy and Jilli and I colored for a while. Now we are back up in the room and Jilli is playing iPad, Lydia is debating sleeping (she is cuddled up next to me as a type) and Brent is working on getting formula and meds ready for the kids.
Tomorrow we had GI and we will see where the day goes from there.
THANK YOU so much to everyone who prayed for us today! We are so grateful. Also a HUGE thank you to everyone we interacted with at Children's today, you were amazing. Thank you to everyone who donates to Ronald McDonald House... this place is amazing for the kids and it is so wonderful for us. To have dinner prepared so we don't have to think about it (and the food costs add up fast while we are in the hospital so this majorly helps with that), a place for the kids to play between appointments and other families to hang out with, it really helps. Thank you to everyone who loves on us!  

Doing art at Ronald McDonald House

she did this by herself- pink sky, Ronald McDonald House, flower and a tree

She LOVES the dress up costumes!

Lydia LOVES this toy snail... I think we might need to find one for home, it makes her smile so much!

Jilli at music therapy

The girls matching this morning (somehow Jillian peed through two pair of pants today...)

Lydia in pre-op

Jillian coloring while Lydia was in surgery

Lydia in post-op

Jilli at Betty Brinn- she loves the market part

Brent is such a great dad! We are so blessed!

Jilli in the pretend ambulance

Lydia after puking (we are working on figuring out draining and feeding with the PEG GJ tube that Lydia has)

Jilli in her pajamas (last night she wore her George pajamas from Caroline)... she was SO excited that we finally found slippers that are her size (she has tiny feet)

Brent and Lydia at art therapy

Jillian coloring with colored pencils

Road Map

I like plans... I like having plans. I am the type of person who likes that Disney World does dinning reservations 180 days in advance before your trip because I like to have things planned. I have felt like since the girls' surgeries like I have been flailing my arms around asking for a plan, guidance or something... and today I got it, and in turn my heart feels so much calmer tonight.

Lydia had her appointment with the airo-digestive clinic today. Thankfully we know all of the doctors there already so we didn't have to dig through all the family history and such, we were able to dive right in. First the pulmonologist, ENT fellow and speech walked in together. The pulmonologist and I started talk and discussed about the choking and such. She said that she wants to do a scope of Lydia's lungs. We know she is presenting in so many ways like her sister but we also don't want to overlook something either so we need to make sure there are not any structural problems. She said that Lydia sounded overall gunky and not as clear as we would like.
The ENT fellow did an exam of Lydia and said that there is fluid behind her ears. Lydia has had green drainage from her nose since getting the tube in her nose so we talked about that a little too.
Speech and I started to talk and the other two left. We agreed to keep everything the same from an eating standpoint. I expressed to her my frustrations with the questions from GI that keep coming up about g feeds. I also explained how upset I was getting that GI was not calling me back. She and I brainstormed some solutions together. I love how she really looks for what is best for the girls and is willing to help us in any way that she can.
Speech headed out and then the ENT and her fellow walked in. They said they would like to do a scope too while pulmonology is doing their scope. They want to start her on an antibiotic before surgery to try to help the ears drain and with nose drainage just incase there is anything growing in that to help prevent any problems.
The ENT fellow took us into a different room and they swaddled Lydia and dug out the ear wax in her ears. Lydia didn't really mind.
The doctors all mentioned how helpful it would be if we could get the tube out of Lydia's nose and move her to a GJ but none of them are in charge of that.
Here is the plan:
1. Start her an Zyrtec daily to help dry her drainage up and reduce the inflammation
2. Get a chest x-ray to have a baseline so we have something to compare it to when she gets sick or as she gets older
3. Start her on a daily inhailer
4. They gave us rescue meds for when she gets sick so we can start those right away (yeah for planning ahead)
5. Watch her for ear infections, if those start to crop up we will have to look into tubes
6. Lung and throat scopes next week in surgery (that will be on Tuesday)
7. Antibiotic for the next week
8. Saline and bulb suction her nose to try to help with all the gunk that is flowing from it due to the tube in her nose.

It was a very productive appointment! I like this clinic because everyone works together and you come out with a plan of care.

Brent and I met for dinner in Milwaukee because there is zero point of getting on the interstate at 4:30. It was actually kind of funny... as we were leaving Children's we were in the clinic elevator with a nurse we don't know. She asked Jilli where we were going and Jilli said to dinner with dad. The nurse responded to Jilli to enjoy her food and Jilli commented back that she would not be eating. She said it so matter of fact and like it was no big deal at all. I think it caught the nurse off guard, but to Jilli it was no big deal that she was not going to be eating, she was just looking forward to playing ipad which to her is far more interesting then food. I think sometimes it annoys her that everyone else eats, not because she wants to but because to her it is a waste of time, but she does enjoy when we go out to eat because she gets to play iPad.

On our way home GI called. Oh I was so happy to her the doctor's voice. She said she just found out today that I have been trying to get a hold of her. We started off talking about Jilli. She appologized that the surgery made Jilli worse. She said she didn't think that would happen and was just trying to help Jilli and she feels bad for pushing us to do this. She said for now all we can do it keep draining Jilli's stomach, support her lungs as well as we can (we were down to one neb today... yeah!) and just wait for the Botox to wear off. She said we will never be trying this again with Jilli which made my heart do a big sigh of relief. She did bring up that at some point when Jilli is having another surgery anyhow that we need to look into doing a separate J tube. GJ tubes are not meant to be a forever fixx because they how the pylorus open and they have to be changed in IR every three months which means that she is under an x-ray machine every three months and while they use as little radiation as possible it is still radiation. Having a separate G and J would mean not needing to go to IR for tube changes. While we don't need to do thing asap because she does handle the GJ tube well, it is something we need to think about for the future. We agreed tonight that J feeds are what is best for Jillian and messing with things just hurts her. We talked about how Brent and I feel like if J feeds is what helps her to grow and protects her lungs then we are ok with that as a long term plan. She also said she would look at the chest x-ray she had in the ER last week to see if she notices any GI issues on it and to double check that her GJ is in the right place after surgery.
We talked about Lydia and how the choking has decreased and how draining the g is working well for her. We talked about getting Lydia moved over to a GJ tube and about how all of the other doctors talked today about how beneficial that would be. She said that she would talk to IR and see what she could do to get it done sooner rather then later.
This conversation did a lot of good for my heart. She never asked when we were going to try g feeds and agreed that j feeds is what is best for the girls. All the crazy things I am getting from the nurse and GI fellows I do not think is coming from our doctor... I have no clue where it is coming from, but when our doctor and I talk it is totally different then when I talk to anyone else. I was getting really frustrated with the department (and the lack of the nurse getting back to me still needs to be addressed, but the bigger need today was a plan for the girls) but my confidence is renewed after talking to the doctor today. She really cares about my girls and doing whats best for them (and that shows since she called me at 6:10 on a Tuesday night from a blocked number, so most likely her own phone).

Tonight my heart feels calmer. Tomorrow I will call Ronald McDonald House to put our name on the wait list for next week since Lydia is in surgery on Tuesday and has a GI appointment on Wednesday. I like plans and right now I feel like we are going in a good direction for both girls. Thank you for all of the prayers. Pray for our hearts as we get ready to send our baby into the OR for a second time in a month. Pray that IR realizes a GJ tube needs to happen sooner then later, and prayers that her new meds help her.

On the way home Brent and I stopped at pharmacies. It ended up with the antibiotic at one and the rest at another so Brent and I divided kids and each hit a pharmacy. He was sweet and he and Jilli got me nail polish and chocolate too!  

Its been a busy day... time for bed :)

Emotions

Oh emotions! These darn emotions are getting to me today. Its funny cause at this very moment Jilli is making emojis with play doh (Jilli thinks emojis are amazing).

I will admit, I always think I need to be perfect at handling emotion. Not sure where I got that from but it is how I am and something I struggle with. I feel like if I let my emotions get to me then I am not strong enough to handle everything. I feel like if I let it all out I just sound like I'm complaining and I don't want to come off as whining. I also worry that people would think I'm looking for attention, actually that has worried me enough at times that I have almost stopped blogging but then I get reminded that there are reasons I blog and it's not to do with attention. I LOVE my life. I love my girls, my hubby, my family and friends. But I guess I have to admit that sometimes emotions are hard. Today I am sitting between wanting to ball and scream, and I need to be honest with myself and let myself have these emotions. Do I want to sulk... no, that is not productive, but its also not productive to not let myself feel.

So, what am I stressing about?

The girls...

Jilli's last dose of the steroid was on Saturday and she is still needing nebs every 4 hours. Now the gunk coming out of her nose is turning yellow. I called the ped's office about that today and they said if she gets sicker then they will put her on antibiotics... while I don't like her being on antibiotics, her pulse ox in therapy dropped down to 82! This child is shaking from all the steroids. She has been getting nebs for over a week now. She did the walk on Saturday but spent in reclined in her stroller and slept part of the time. Before the walk started she was out of her stroller a little it but also spent a lot of time resting. This is not normal even for her... but she is also not at the point where she needs to be in the hospital... she is in this stupid gray zone.
I also have not heard anything back from GI since last Tuesday. I just left another voice mail today. I sent a message on Friday, Lydia's home nurse called them on Thursday... apparently they are not returning phone calls. They called last Tuesday and said someone would call me back but that has not happened yet.
Jilli has her PT goal eval today... lets just say she bombed. Between her injuring her ankles, her overall tone getting weaker, and the sickness she is now battling from surgery, she has gone backwards; to the point where there was talk about taking one of her goals off because maybe it is just to far away to be a practical goal. We still have a few more weeks until we have her appointment for braces for her legs. 
Tomorrow Lydia has an appointment with the airo-digestive clinic where we will see pulmonology, ENT and speech. I am really hopeful that it is a productive appointment. They will decide tomorrow if Lydia is having surgery on the 27th to scope her throat and lungs. I know this is a surgery we need to do at somepoint so I would rather just get it done, but it means going into the OR for a second time this month.
There is also some extended family health stuff that has me stressed.
We got a letter in the mail the other day that insurance is not paying for Jillian's neuro-psych eval that happened LAST FALL!!! Apparently the insurance company sent Aurora questions about why it needed to be done on a 2 1/2 year old and Aurora waited to respond until JULY! The contract our insurance company has with Aurora states that they have 180 days to respond to questions, not over 6 months, so insurance said they are not paying (and rightfully so) but I have a feeling this is now going to be a mess I have to fix on top of whatever mess comes from the Botox that Children's did not get insurance approval for before they did it. I just love dealing with insurance messes... especially ones where its not the insurance companies fault. Maybe by some chance both of these health care companies will see that these were their errors but I'm dreaming big. 

We will get through it, we ALWAYS do. I am not sure why today is hitting me so hard. Maybe its the lack of sleep from giving a child neb treatments in the middle of the night mixed with a baby who does not sleep though the night most nights, or the fact that Jilli has not felt good in 10 days so she does what most kids do when they don't feel good and whines til you want to pull your hair out (I don't blame her, she doesn't feel great, but I'm human and whining... oh whining) or the fact that I don't often admit or deal with the impact of all of the health tests on me. Jilli handles most things like a champ... this is the only life she has ever known, and while some things are hard for her she is still little and does not remember a lot of it... me on the other hand. Putting her in the special chair for a chest x-ray last week was ripping the band aid that holds in the emotions of all of the emotional experiences of that stupid chair. Shoving a ph probe down here nose, multiple times where she was too sick to support herself, times where she had turned blue before that chair. For a stupid little chair that helps get good chest x rays, I sure hate it and it invokes emotions that I try to hide. I try to pretend this all does not rock me emotionally but it does. I guess I'd be a robot if it didn't. 

Yesterday I got the privilege of listening to an awesome sermon about dumb things Christians say. So many of them have been said to us about the girls, to the point sometimes I avoid conversation about the girls cause I can't handle hearing one more cliché but I get that most people don't know what to say. But I found the sermon encouraging as he talked about John 9:1-3, about using health stuff for the glory of God. I have seen over and over and over again how God is in this, how He is using this for His good, and in that I find encouragement. 

I also find encouragement in amazing people. Thank you to the amazing friend who sent me a note of encouragement today. It's what my heart needed! Thank you to my hubby who let me go to target by myself tonight. It was running errands but there is something therapeutic about target and I just needed some time to process. Thank you to a couple of friends who stopped out on Friday with food. Thank you to the people who rally around us. You are the hands and feet of Jesus. Thank you. Thank you for listening when I whine and have compassion on us. Thank you! 

I'm amazed she doesn't get more tangled. Right now she has four different wires running off her (j feeding, g draining, oxygen and pulse ox) 

ER trip

Wednesday morning Jilli got up and had a little cough but it went away within a minute or two of waking up so we didn't give her a neb. She spent the day playing and acting like Jilli. My heart did a sigh of relief that we had made it past the after surgery sickness. Jilli normally has a little bit of a cough and such after surgery but this was lasting a long time.

Thursday morning she woke up and was coughing so hard she was having a hard time caching her breath so I gave her a neb. She also slept over 13 hours that night which is not like her. Her pulse ox looked good and her heart rate was a little high but after a neb that is to be expected. Lydia's nurse came over for her visit and said that Lydia's tube site is looking great. Jilli was rather whinny while the nurse was here but I thought that she was just looking of attention and didn't feel great. As the day went on Jilli continued to lay on the couch. I tried to bribe her to go play but she said she would rather just lay on the couch. She made it to the 3 1/2 hour mark after her first neb and started coughing so bad she couldn't catch her breath. I started another ned (you are suppose to wait at least 4 hours between them) and called the ped's office to check in. If she was not a week post op I might have waited longer before calling but with her reflux being so much worse and now she was having a hard time breathing and her pulse rate was not lowering I just wanted to check with one of her doctors. The nurse called me back and got a little info and then told me that they talked it over and wanted us to head to Children's. I asked walk-in or ER and they said ER. I may have muttered a few words and packed up the car to go. I called Brent and let him know what was going on and then called Jaime because we were suppose to have them over for dinner. I called my mom and she said she would meet us up there so she could help with Lydia.
We got up to the ER and the parking lot was full (check out Milwaukee news yesterday and you will know why) which is never a great sign. I got the girls in and checked in and then Brent joined us. The ER staff recognizes us when we walk in. We try to only go there when we have to because they are very busy, but we still end up seeing them a fair amount. The waiting room was full and as we were checking in there was a family saying they were leaving because the wait was just too long. They took us around to do Jillian's vitals. The nurse looked at me and asked if we had enough oxygen for a little bit and I told her yes. She said that they had a few people they were discharging and would get us into a room asap. I felt bad bumping everyone in the waiting room but when the girls end up at the ER they try their best to get them in a room quickly. A kid on oxygen not breathing well is not good and they know us well enough to know how quickly Jilli can turn. Wile knowing the Children's ER staff was not on my life goals list, I am so grateful for them because they work hard for my kids. We sat in the waiting room less then 5 minutes before they took us to a room. A doctor was in shortly after and we came up with a game plan. A duo neb (a nebulizer with two meds mixed together instead of the one med we give at home), a dose of steroids and a chest x-ray. I love how we are a part of the medical team there and they ask our opinions and want to know what has worked in the past. They also called up to pulmonology to make sure they agreed with the plan. Within minutes of the doctor walking out of the room the head doctor walked in to check to make sure this was the best plan for Jilli. As soon as she left the respiratory therapist walked in to do Jilli's neb. She said she was making shallow breaths. While we were doing the neb x-ray came in and wanted to take her back but they asked them to come back after the neb. Once the neb was done they gave her the steroids and then took her to x-ray. They moved very quickly. Once all of that was done Jilli was very jittery from all of the meds. The doctor came back in and said the x-ray was clear. She said this is most likely from all of the extra reflux Jilli is having since they put the botox in her pyloric sphincter. She didn't have pneumonia yet but was headed in that direction. Thankfully we caught it before it got there.
We came home and  she was very tired but was having a really hard time settling her body with all of those meds. She was yelling at us and not making any sense. Oh the joys of steroids! I ended up just rocking her for a while but once she got to sleep she stayed asleep til morning (we gave her another neb right before bed)
Today she woke up coughing again but not as bad as yesterday. We started the morning with another neb and she is just hanging out playing ipad. Her pulse rate is still high but her body is working hard.
Today is a low key day here! Right now Jilli is next to me playing iPad and Lydia is asleep in my arms.

Thank you for all the prayers and well wishes yesterday. A huge thank you to the Children's ER. They were AMAZING yesterday and did everything they could to help her. They included us in decisions and reached out to other doctors to help make the best choices for Jillian. They were great and I am so thankful for their amazing  care of my little girl. They reminded us again yesterday why we love Children's so much. There is a reason we drive an hour to go to the ER and they reminded yesterday about their high level of service. 

We are so thankful.

How are the girls?

We are chugging along here :)

Jilli:
Her lungs still have not been so happy and has been needing nebs but this morning her cough is not as bad. What is not all that great is her reflux. Her therapist commented on Monday how much worse her reflux is since surgery and all of us who spend a lot of time with her agree. To the point she cycles her Erythro of 3 weeks on and one week off and she just went off on Thursday but I went and picked it up yesterday and started her back on it early to see if it would help. She was audibly refluxing the entire time we were at the pharmacy. GI called yesterday and asked how the girls were doing (I was protesting calling them for a few days, the girls were safe on the plan we were following and I need a couple of days without fighting for the sake of my blood pressure, so I just waited until they called me) They asked how Jilli is doing and I explained that we feel she is worse. Now they are saying that can happen with botox before it gets better but offered no suggestion of how long worse might last. I sent a message to my friends over at Feeding Tube Awareness last night to get thoughts from other parents who have been there and they are all shocked that they put Botox into Jilli's pyloric valve without there being a problem with the pyloric. No one had any experience of it getting worse before better. I spend my afternoon reading case studies (yes I read medical info about things that is going on with the girls so I know what the doctors are talking about) and could not find any info about Botox making things worse before better. Brent is hopeful that it will magically start working... I guess I am being more realistic at this point. I'm frustrated. Jilli has been enjoying her Barbie house that she got from her grandparents on Monday and has been playing with it with her Barbies.

Lydia:
Lydia's tummy is healing nicely. The pain seams to come and go, but my tummy hurts for a while too when they cut abdominal muscle. Today the tube in her nose is really sensitive and I wish for her sake that we can get it changed to a GJ tube soon but when I talked to GI yesterday the nurse said Ir is saying she has to be 7.5kg to get a GJ but they are going to see what they can do. I am starting to feel more and more like we are not getting it until at least 7.5kg :(

GI also asked if we have fed either of them into the G. This is where the huge disagreement is right now. Lydia is still choking... it is a TON better then before surgery now that her stomach is draining into a diaper but not 100% fixed (I was not expecting it to be 100% fixed, I am happy with the improvement that we have seen and I feel like Lydia is a lot safer with the level of choking we have now in comparison to what she had before surgery) She is still choking and refluxing, so why would we feed her into the g? And the whole point of the surgery was so that we could drain her g but if we are putting formula into  her g then we can't drain it because then all her food would drain back out. Feeding into the g was NOT the point of the surgery so I am very confused why now after the surgery that is something they want to do. Jillian's reflux is worse since the surgery, why in the world would we feed into the g right now when she is not handling her own saliva? I get they need to see if the surgery made things better but I can tell you as of right now it did not without putting anything into the g. The nurse said that she would share what I said with the dr and someone will call me back. I'm just so confused by this. The girls thrive on J feeds with venting the g. They grow, it lowers the risk to their lungs, they reflux less, and choke less... why try to change something that is working? I get that so many people see the tube as a negative thing, however we see it as a huge blessing that keeps our kids alive. We are not one of those families that is begging to get the tube out. Our kids are able to do all that they do because of the tube. Without the tube they would be very sick, not growing and likely living in the hospital.

A few people have asked about second opinions and such and I really don't feel like that is a good option because:
1. Doctors are human. Our relationship with our doctors is like any relationship, there are times of frustration. We will get through this and we all will be stronger in the end. They will learn more and I am learning things too. Is this process fun? no, but jumping ship every time someone makes me mad does help build relationships or help the girls. We are working with other humans thus there are going to be times of frustration.
2. We are at an amazing hospital. There are so many people there that care about my girls including the people I am frustrated with. When I look at things that happen at other hospitals we are blessed, and some things that we get frustrated with happen everywhere... once again, the medical system is run by humans... do you ever have a bad day at work?
3. We did get second opinions for genetics and neuro in February and they said that CHW is doing the best things for the girls.
4. There is no book written on how to treat an unknown genetic disorder. We are all making educated guesses. There is no treatment plan to follow. Sometimes guesses will be wrong and that is why it is my job to research what I can so we can have educated conversations with the doctors. 
5. Sometimes other forces are involved in situations... bosses, insurance companies, other departments ect. While no one has said that with this situation, sometimes that is going on in the background.
6. These doctors have been with the girls since the start and having a history with a doctor is not something you can pay for, its built over time.
7. Despite this I still trust our doctors, and know they want the best for them, if that feeling changes we will do something about it, but there is something about a momma's gut.  

We had a guy come and work on our AC this morning. We were trying to see if we could coast by without by the girls overheated yesterday with the doors open and fans running so we didn't have a choice. Thankfully we didn't have to buy a new AC... some lovely mice decided to build a home in it and broke one of the parts but they fixed that and cleaned out the mouse home. The house is already cooling off which is amazing.

Yesterday the girls and I went to Target and they had a ton of their character stuff and back to school dollar section stuff on clearance so we picked up stuff for Ronald McDonald House. Our last day there they gave Jilli a backpack of stuff to play with while her sister was in the hospital and it was full of little things like that. Jilli was so excited to be buying stuff for rmh! If you check out their website they have a donation list of things they are always looking for.

I was also in contact with CHW this week about bouncer and mobiles for kiddos on the 11th floor. Watch for details in a month or so about how you can help us with that. Our goal is to buy them 4 bouncers and 2 mobiles. They use a specific bouncer that runs around $25 each and the special hospital mobiles they use run $100 each. So we will need about $300 to buy what we are looking for. Any extra we raise for this project will get more bouncers and mobiles. Contact me if you have any questions.

Thank you to everyone who prays for us, loves on us and supports the things that we do to give back to the places that give so much to our kids!

Note to add: I just got the mail and found out our insurance denied the claim for the Botox... Ahhhhhhhhhhhh

Lydi-boo!

She is too cool!

Jilli with her Barbies

Two surgeries

Its been a long few days here and I am going to try to write this in a lot of detail partially to tell the whole story and in part for record keeping for me.

Thursday:
Thursday morning Lydia's nurse came for her visit. We were excited that Lydia is over 5kg. Her nurse called GI to let them know her weight. Oxygen came at 11:30. Then I started packing the car which was quite the task as every time I brought something outside Lydia would start to cry and vomit. We had told Ronald McDonald House (rmh) that we would be there around 5 once Brent got done with work so we had a little time so the girls and I went to the zoo for a bit. It was a really nice day out and the walk was really nice. We even got to watch an elephant paint! Once we were done at the zoo we headed over to rmh and we checked in. First we met with a staff member who did all of our paperwork with us and then three volunteers took us on a tour. They took us to the magic room where Jilli got to pick out a toy and book for both her and Lydia. She decided Little Mermaid Play-dough was perfect. We then went up to our room and got settled. Thursday night they had dinner at the house provided by a group of volunteers. It was really yummy! After dinner we headed down to the art room where art therapy was happening. An art therapist from the hospital was over helping with art projects and there to talk. We met another family in art therapy and we were able to talk about of medical journeys both families are on. Being a parent of a medically complex kiddo puts you in a club, not a club you really signed up for but sure pay lots of dues on, but when you meet another member there is a connection there that is hard to explain. A strange medical language is spoken and conversations are not about the latest movie or pop culture but about what doctors work hard and what doctors make you want to scream.  After art therapy we gave the girls baths (in a stand up shower so it was an interesting adventure) and then tried to get them to sleep which neither of them were very interested in. Brent ran to Walgreens because I forgot to pick up Jillian's laxative from the one by home on the way up and then he came back and everyone attempted at sleeping, however  it was a night of little sleep.

Friday:
We got up at 5am to turn Jillian's pump off and get ready. We had to check into the OR at 7am. We walked over to Children's around 6:30 and grabbed breakfast at Cafe West. We headed up to surgery and checked us in. They started to do vitals on Jilli and he had a little freak out with the temperature probe. It took me a second to figure it out but then I realized how much like an  EMG needle that looked like so once we showed her that it was not a needle and we used it on Peppa Pig first then she was fine. She was very chill waiting as she watched TV. We also had a nursing student and her instructor working with us so it was a full room. The nursing instructor was enjoying holding Lydia... until she pooped all over :) Jillian's surgery was scheduled for 8:30 so around 7:55 they gave her relaxing medicine. Jilli is so funny on that stuff. Every time she starts grabbing for things that are not there and tries to get up however she looses all control of her muscles so it is always an adventure to keep her in the bed. Everything looked like it was going to happen on schedule. Our GI dr stopped by (not the one doing the surgery) and we talked for a little bit. She said there was a possibility that Lydia would get a GJ tube during surgery and that made us very happy. Then the doctor for the surgery came in and we talked about how we only wanted to Botox if there was the webbing they were looking for and how we did not want it if it was not needed. He said ok and then stuff started getting a little weird because there was a bunch of stuff about if IR was needing to be involved in the girl's surgeries and suddenly it was after 9 and Jilli still had not gone back. Jilli's relax meds completely wore off before they wheeled her back into surgery at 9:30 but the anesthesiologist let her watch Frozen on her phone on the way in so she was happy. We hung out with Lydia in pre-op during Jillian's surgery. Around 10:30 a med student came in and said that Jilli's piloric sphincter looks great and does not have webbing but they called up to our GI and she said that she wanted the Botox anyhow so they were coming to get our permission. This is a crappy spot to be in because your kid is already in surgery. Honestly its not the Botox itself that was my concern, it was the mention of g feeds that was making me nervous. Brent and I had to make the choice on the spot. While there are little risks with the Botox itself all of the implication with us is what had us scared but we felt a little backed into a corner at that moment because everyone said we needed to try it. Brent and I debated for a moment and then agreed to it because we knew it was a hoop we had to jump through to get our kid what she needs even if it does not help her they need to try it to see if it might. As the med student walked out of the room I broke down. Around 11:30ish they came in and said that Jillian's surgery went well and she was in recovery. The doctor came in and showed us pictures. Her piloric valve looks perfect, she has some extra folds in her stomach but don't know why or what it means, and she has a couple of sores in her stomach from the holes of the g port of her gj tube because sometimes stomach lining will get stuck in them and that is likely the cause of the blood we sometimes see in her g drain bag. Then he said that we will need to test to see how the Botox worked (this is the part I am stressed about) so maybe we should pull her gj tube next week and put in a g and she how she does. This is where I got mad. No, that will NOT be happening. You put Botox into a valve that was not broken and somehow think you fixed her genetic disorder... We will not be feeding all of her food into her stomach for a week because I can tell you what will happen... you will fill her lungs with fluid and we will be in the hospital with a very very sick child and I am not willing to risk killing my kid for this experiment. Aspiration pneumonia takes a ton out of her and sets her months behind in all areas and she gets it when we feed her 10mls of baby food once in 24 hours... I can only imagine what would happen if we put 1,160ml into her stomach. The doctor said we could talk to our GI about it (I think he was done talking to me at that moment) and said we didn't have to start anything that day. My mom called to check to see how stuff was going and at that point I was pissed and she said she was leaving work to come help. A few minutes later they came and said they were ready to take Lydia back. After they left Brent and I just stood in pre-op and tried to hold ourselves together. They then walked us to the waiting area to wait for Jilli to wake up enough. That wait felt like forever. After a while they came back and said that one of us could go by Jilli so I went. She was just waking up and gave me a little smile. She said she had a boo-boo and we played guess the body part until I figured out that it was her ankle that hurt because that is where they ended up getting the IV in. Jilli looked like they had done the Botox in her lips as they were very swollen but that slowly started to come down. The nurse turned Sofia the First on for her and she was happy. The nurse and I talked and she agreed that if it was her she would not pull the gj and feed into the g (the thought behind pulling the gj is because the j keeps the piloric valve open but she can't handle g feeds because Botox into the piloric does not fix the reflux or the aspirating). It made me feel better at that moment to talk to a medical professional who is fresh ears and hear them as concerned about the plan as we were at that moment. There was also confusion if Jilli needed to go to IR (she didn't they were able to get her tube back in the right place during surgery) and about a test that neuro asked for them to run on a part of the stomach tissue they biopsied (still not sure if that got worked out). A little while later Lydia came out of surgery screaming and it broke my heart to hear her scream and not be able to go to her. Thankfully they called Brent back a little while later so he was able to comfort her. Brent and I then popped between the girl's recovery rooms. I went into Lydia's room and noticed she still had a NJ tube in so I knew they had only put a g tube in and my heart was sad since before the surgery it sounded like a real possibility that she could come out with a GJ (when she went into surgery we did not know what kind of tube she was going to get). When the doctor talked to Brent he mentioned that we could see about getting it switched to a GJ next week.
 Jilli was ready to move to the next recovery area while Lydia still needed to stay in the first area so Brent went with Jilli and I stayed with Lydia. A little while later my mom met Brent and Jilli is recovery. Lydia's nurse went on lunch and a different nurse came in. We have had him multiple times before in recovery so it was a friendly face and we talked about the upcoming walk and about remodeling houses as Lydia slept in my arms. It took my mind off the frustration we were experiencing and that is just what I needed at that moment. It took a while for the room to be ready for Lydia on the 11th floor but then he took us up.
We were on the floor for a few minutes and then Brent, Jilli and my mom joined us. Then our friends Stacy and Caroline came up (they drove 3 hours each way on Friday just to support us and love on us). I was so grateful for friendly faces and Jilli was so excited to see Caroline.  We got settled into the room and then a med student walked in. We talked a little bit about the plan and then he said we should think about feeding Lydia in the g. I literally gripped the chair as my blood pressure rose to a level I am not sure it has hit before (after he left Brent, Stacy and mom said they are all amazed I didn't deck him) I explained to him that would NOT be happening and how this child vomits and chokes on her own saliva multiple times a day and that was the point of doing the surgery, so that we could drain her g... not to feed into it because that is dangerous. He also said that she now could not get her GJ tube until she is 7.5kg (she is 5kg, at first we were told the rule was 5kg to get gj, then turned to between 5-7kg at the discretion of IR and now it suddenly got higher meaning we are going to have to keep her NJ in longer) That med student left the room and never came back. I didn't yell at him, I just very bluntly stated that what he was telling me was wrong and was not going to happen. I ended up with a headache from my blood pressure spike from that conversation. I could not fathom how my kids both had surgery to help with issues but neither of them would fix the underlying issues and for some reason GI suddenly thought my kids were "cured." They were looking only through a GI lens and a narrow GI lens at that. I am a logic person and this all was so far from logic. Stacy, Caroline, Jilli and I took a walk to the gift shop. Caroline wanted to buy the girls balloons (they only have the safe kind there thankfully! I love when places don't use latex) so they picked out a Little Mermaid one for Jilli, a smiley face for Lydia and Caroline got Paw Patrol. Stacy and I were able to talk as we walked and it was good for me to walk for a minute. 
Genetics had ordered some labs that they wanted done during surgery however they couldn't find the orders so they were not drawn so I asked for them to be drawn on the floor. A lab tech came in and it was one of the roughest blood draws we have had (and we have had lots between the two kids). She walked in and told Brent to put Lydia on the bed and then just proceeded to poke Lydia with a needle and dig around for a long time. She pulled the needle out and stuck another one in right next to where she was digging. She got about 1ml out and then couldn't get any more. Mom, Stacy and the girls were out in the hallway playing during this. Then the lab tech walked out of the room. I had no idea if we had enough blood and her bedside manor sucked. She talked to a nurse and I'm sure she probably overheard me talking to mom and Stacy about how rough that was. She walked back in the room and said that someone would be back at 11:30pm to get more blood.
Dan then came with dinner for us all. I really don't eat much when the girls are in the hospital so a few bites of dinner was a smart thing since I had not eaten in 12 hours. We all hung out in the hospital room and Lydia slept. Jilli was so tired but wanted to stay awake. Brent ran over and picked up our shirts for the walk since it was shirt pick up day.Jilli and Caroline mainly hung out next to each other playing and they watched a movie together. Once it was past crazy time on the interstate Stacy and Caroline headed home. I was so grateful for them coming. Brent walked over to rmh to meet his brother because his brother's computer was broken and he needed Brent to fix it. Dan hung out for a little bit and then headed home. Brent and Brandon came back to the room and hung out for a bit and mom and I took Jilli to see the fish. Brent and Jilli then headed back to rmh to sleep since Jilli can't stay the night in Lydia's room. Mom was going to head home back thankfully decided to spend the night and help me with Lydia (mind you she left from work in the middle of the day, had nothing with her to spend the night but saw a need and jumped in). That time from 9-11:30 crawled by and I was so tired I was starting to get sick. I had asked if there was a mobile on the floor or a bouncy seat so Lydia could lay and look at some toys (she wanted to lay still) but the nurse said they are hard to come by and if we could find one in the playroom then we could use it but there was not one there. Maybe we need to do a drive for bouncers and mobiles because this is not the first time we had this problem. 
The tech that came in at 11:30 was much better and got Lydia on the first stick. Her interactions with us were so much better too which is what I needed at that point. She got all the blood she needed quickly. She put the blood into a vile at had an acid in it and put on the lid. Well something happened and the lid shot off the vile like a rocket and blood flew everywhere. Like it looked like a murder scene everywhere... walls, Tv, floor, bed, papers, chair, garbage can, everywhere. She said she still had enough blood from the other stuff she took that it was ok and she called for someone to come clean it up. Lydia went back to sleep and my mom told me to get some sleep too and she would wait up for the cleaning crew.
Our night nurse was amazing and I was so grateful for some calm from our medical team.
Saturday:
Around 3am mom and I both shot out of bed to the sound of Lydia choking. It was her first choke since the surgery and it was rough. Once it was over we got her calmed down and we all attempted to sleep. Around 6am we woke up to the next choking fit and she puked. Even with these two events she was doing so much better then she had been before the surgery. Since the surgery her g tube was left open to drain into a diaper so she was not refluxing her stomach acid anymore giving her less to choke on (this was the goal of the surgery). The surgery fellows did their round and then a different GI fellow came in and talked to us for a little bit. When the GI fellow left she said my least favorite GI would be in soon. Mom went down and grabbed us breakfast and then Brent and Jilli came. A little while later the GI dr came in and we had one of the most pleasant interactions with him that we have yet (he is not the one who did the surgery or our normal GI dr but we have had many interactions with him) He thought the tube in her nose was a NG instead of an NJ so he asked when we were taking the tube out of her nose and we explained the situation and he said ok that the tube would stay in her nose and said that in a couple of months we could change her to a GJ. I just let it be. I was tired of fighting with people about this and figured I will pick up the torch with this again with our GI doctor and stop fighting with people I would not see much after this visit. He said that if she continued to do well that we could go home in the afternoon.
One of the care partners came in with a bouncy seat for Lydia to sit in and I was so grateful for her kindness. Our nurse was really sweet and we went over some of the different things about the tube she has (Jilli never had a PEG g, she had a PEG GJ so this tube is a little different). Lydia took a nap and Brent worked on packing our stuff that was at the hospital up. Mom and I took Jilli over to rmh for a little bit so she could paint. We came back over the the hospital and grabbed lunch. We hung out for a bit and then the nurse came in and said we were being discharged. We packed up all of our stuff and then headed to rmh. Brent worked on packing stuff up and mom and I hung out with the kids. Brent and mom loaded the car and mom headed home. Our friends we met at rmh on Thursday were headed outside to play so we all went out to the playground and rmh gave Jilli a bag for being a great big sister to Lydia while she was in the hospital. Brent took care of doing check out. At that point it was almost 6pm so we hung out and ate dinner at rmh and then headed home. Jilli fell asleep on our way home. Once we got home Lydia needed more pain meds and we realized they discharged us without instructions for pain meds so we worked on figuring that out. We also realized that our air conditioner was not pushing out cold air so Brent messed with that for a while and then turned it off for the night to see if it just needed a break. We brought the kids up to bed and then went to sleep.
Before we went to bed I checked Lydia's mychart and found that at 2am the one blood test came back and it is still off. Her lactic acid should be between 4-15 and her's is 23 (was elevated at her last hospital trip too). Now we need to figure out what that means and what we need to do about it. I spend until I fell asleep researching it. 

Sunday: I woke up at 3am to Lydia choking and then at 7am she woke up crying in pain so I got her more pain meds and she went back to sleep. I came down and watched the Today Show about 9/11 and then around 8 both girls woke up. Jilli woke up with a cough that sounded like a dog bark so we came down and gave her a neb. Brent has been down working on our AC which is still not working. Thankfully it is not to hot today! Lydia is in more pain today then yesterday. Jilli was the same way when she got her tube put in. It is different once you are home and not on the hospital pain meds and just laying in a hospital bed. Its been a bit of a rough morning here but we are getting though. Our friend Annette brought over some lunch on her way home from church and my mom is over now to help with the girls. I need to run errands sometime today to pick up preemie diapers since they have Lydia's g tube draining into a diaper. I am hoping soon to figure out a different way that works to drain into (how we drain Jilli is not the best thing to use yet for Lydia) but right now it looks like diapers is what is working.

Thank you so much to everyone who has prayed for us or sent text asking how we are doing. To be completely honest, we are drained. While my kids are both alive and unharmed, the past few days have been rough and many of the things I was praying would not happen did. I also ended up having to fight for the best thing for my kids multiple times and that fight is not over. I know this week will continue the discussion about g feeds and gj tubes. This all just feels heavy right now but their smiles is worth it. The choking decreasing for Lydia is worth it. These girls are worth the fight. We did have several amazing staff members at CHW that were very kind to us and supportive. Ronald McDonald House was AMAZING and such a HUGE blessing. It made it easier on all of us!

I read a blog post recently by another mom with a medically complex kiddo and she was talking about the exhaustion you feel when you come home from the hospital. When you are in the hospital you are on full do mode. Your adrenaline is pumping and you just do what you need to do. I barely eat when we are in the hospital. Once we are home you deal with the emotion. You deal with the lack of sleep. You work at picking up all the pieces that were left when you went in the hospital. You figure out your routine and what has changed since going in. Being in the hospital is hard but in some ways those first days back home have their own level of hard. Today we are laying low and probably tomorrow too. I need to unpack the bags. We need to figure out what is wrong with our AC because Jilli and Lydia both overheat easily (thankful it is cool today). We need to get our grass mowed and laundry done and run to the store. Thank you to people who understand this time of transition and don't get upset with us for us no tbeing able to do much for others during the transition. I know this is our life and our normal but some hospital stays are harder then others and this one really hit (I knew having both our kids have surgery would not be a cake walk, but with how everything unfolded and the limbo we are in right now with plans for the girls it has been harder) It will also take the girls a bit to bounce back. Jilli's throat is sore and her lungs didn't love surgery. Lydia is sore from her tummy muscles being cut but in time both girls will bounce back. We will get back to our normal and doing all the things we try to do.

The zoo hand almost no people!

Jilli kept calling to the birds to land on her arm

the elephant's painting

Ronald McDonald House of Southeastern Wisconsin

Jilli entering the magic room at rmh

Our room at Ronald McDonald House

Jilli reading a book to Lydia

Jilli playing with her play-dough while we ate dinner

Art therapy at Ronald McDonald House

Jilli in her special her pajamas that Caroline mailed to her for her trip to rmh

The girls on Friday morning before surgery

The kitchen by our room at Ronald McDonald House

The fire place at Ronald McDonald House

Jilli and I at breakfast on Friday

In pre-op

Lydia and daddy cuddling

A family picture

The girls cuddling

Lydia and mommy cuddling while Jilli was in surgery

Caroline and Jilli playing

The girls with their balloons watching a movie

Lydia sleeping

Cuddling my Lydia

Lydia was so happy in the bouncer

Jilli watching flight for life landing

Lydia and daddy cuddling. She loves muslin blankets

part of the toy room at Ronald McDonald House

Jilli and grandma doing art

the art room at Ronald McDonald House

Lydia's new PEG g tube

Jillian checking out Lydia's new tummy tube. She was so excited that her sister has a tube in her tummy like she does

Jilli playing dress up at Ronald McDonald House

a family hang out area

Jilli with Ronald McDonald

Hulk-Anna-Jilli

Jilli doing dot art

Jillian's big sister bag

Jilli during our second dinner at Ronald McDonald House with her balloon

Jilli once we got home on Saturday

Jilli taking her neb