Sunday mornings bring some lounging time at my parents house before we have to leave for church. Time to read the paper and the sale ads. Jillian and I were moving a little faster then normal because Brent had spent the night at home after moving Dan in and was coming in early to get breakfast with Jillian and I. Around 9am I stopped Jillian's pump to give her meds. Connect the water syringe, push, nothing moves, push harder, nothing moves, give it everything, water sprays at me... Clogged line! We try all the tricks and then Brent gets there. He tries a few times and then we decide its clogged and we are not going to be able to unclog it. We throw some stuff in the car (forgetting my pump parts however, but we remembered my pump), left my car and most of my stuff at my parents and hit the road. You make good time at 9:40 on a Sunday morning.
Made it to the ER and they were not busy at all. Infact we got a close parking spot. If you have ever been to the children's ER you know it is impressive to get a parking spot at all in the ER lot. Got checked in and they took us right to a room. Dr and nurses came in and looked at her. They decided they would try club soda because the carbonation can sometimes get it unclogged. We waited for the soda to come up from the kitchen and then tried it. Waited a hour to give it sit time and then tried again. Still no luck moving anything in, but people were getting showers of any liquid we tried. Jillian was being such a trooper! She was smiling for everyone and being a ham. She did not like it when they would try to plunger the tube and it seamed like that hurt her, but as long as people kept their hands off the tube she was happy! I love that about her. Around 3pm they gave up trying and paged the interventional radiologist to come in. We were lucky because we have always been told if it clogged on the weekend we were stuck in the hospital til Monday because the radiologist does not work on the weekends, however he came in on Sunday! Normally when they place an NJ tube there are a lot of people in the room, but since it was a Sunday they only called in the radiologist and a lab tech, thus meaning they needed more hands to be able to place the tube then they had on staff. So Brent suited up in a zebra print led vest and white paper jumpsuit and joined in the "fun." Normally on a weekday they have parents wait in the waiting room, but today there was no one in the tech room so I got to hang out there and watch the screen of her insides as they placed the tube. It took about a half hour of her screaming for the tube to be placed but at last it was over. When they handed her to me so Brent could get undressed she grabbed on like never before. We went back to the room and they had us do the first 15ml of her feed to make sure it worked and then let us go home a little after 5. We were exhausted.
My parents packed up all of our stuff from their house and drove my car out to our house and brought us dinner. It was so nice to get to bed!Monday:
Jillian and I hung out during the day. We ran to Target and Walmart, one of her favorite things to do! At night Jaime and Jason came over for dinner and we all celebrated Jaime's birthday. It was a lot of fun!We are looking at getting Jillian a special kind of belt that will go under her clothes to hold the extra tubing coming out of her tummy after surgery. We found a company that looks to have really nice ones at a good price and hundreds of fabric options. Jaime and I spent a little bit of time picking out what fabric we thought would look best. We also were picking out fabric for these little disks that you put around the tube that help soak up any drainage. She is going to have a styling GJ site :)
Tuesday:The day started with a trip back to Children's but this one was planned. At this point we should just own a house there since we have been there three separate days in one week. This time it was to see the genetics department. We caught them up on what is going on with Jillian. She has been doing this weird thing lately where we can not get her attention and she looks blank. You can get up close to her and make faces and be a goof and she will not look at you. You can make loud noises (brent dropped a pan) or call her name and she does not move. It lasts for a few minutes at a time. They are concerned about possible absent seizures and are referring us to neurology. They also want us to check in with audiology to make sure her ears are still good. They said that I need to call central scheduling for both appointments and that neurology is backed up. They said she does not need to go see them again for a year unless things change. They said that normally someone with just a feeding issue they would dismiss but with her other things (she still does not roll over) they do not feel comfortable doing that.
After the appointment we stopped at the mall for lunch and then went over to Buy Buy Baby. We were looking around and noticed 2 of the next carseat I want for Jillian sitting in the clearance section. I am a big person on research when it comes to carseats and all baby products. It started when my like brother Howard was born. I wanted to buy just the right gift (I was in middle school) so I started researching. Well between the time of Howard and Jillian I still loved researching baby products. I am very picky in this area. Car seats for me are no different and I have spent a lot of time researching what one to buy when Jillian outgrows her's soon, so when I noticed 2 of the one I wanted in the clearance section I was really happy. I looked all over the boxes which where kinda beaten up and could not find a price. I then found an employee and asked them about the car seat price and they looked at me like I was crazy talking about car seats in the clearance section. They looked at them and then asked around to find out that they had just been set there hours before when someone was stocking shelves and no one put them away. Bummer! With the condition of the boxes I doubt they will sell them for full price, but they were not willing to give them to me at any discount for the messed up boxes that day. I then looked at the car seat mirrors, the reason for the trip and they were way overpriced so we left.
Next stop was Babies R Us where I knew they had a car seat mirror for a better price. Jillian has only been in Brent's car a few times but one of those was this weekend on the trip to the hospital and we noticed we did not have a mirror in there to see her in the back seat and that was a pain. I wanted a new mirror for my car that was lighted and we would put my plain mirror in Brent's car. When Jillian starts screaming it is so nice to be able to look back and see if she is screaming because she is a baby or if she is pulling on the tube and about to take it out. I walked all around the store and was only finding a plain mirror or one that lit up if Jillian touched it, and that would not work because how am I going to convince a 6 month old who is screaming to turn on a light so I can make sure she is not pulling her tube out. I figured I would just get the plain one again. I stopped at a clearance rack on my way out and noticed that tucked behind everything was the lighted mirror that I wanted on clearance $10 cheaper then Buy Buy Baby had it! I grabbed it and checked out. When I went to pay for it another $4 came off plus Jillian had a gift card! I love a good bargain! We then hit the road before Milwaukee traffic got too icky and came home. We had Tacos for dinner and we all hung out. Jillian took a 15ml bottle and puked a large portion back. She showed us how good she is getting at sitting and we had fun playing on the floor and reading books before bed.
Wednesday:
Jillian was up a few times during the night moaning and it continued into the morning. Eventually I just got both of us up. I got her dressed and gave her meds and then she fell back to sleep. I figured I would get some of the clothes cleaned out of my closet while she slept. I had to wake her eventually so we could go to work.At night she was kind of fussy. She did not poop all day so I am not sure if that was the problem. She is all messed up again after missing Sunday's laxative. She also has buds for 2 more teeth. Im not sure what the deal was but she would be playing for a few minutes and then scream. Brent was out with a friend but Dan was a huge help! He got her meds for me when she was screaming and got me a rag when she puked 1/2 of her 15ml bottle up. She did find it a fun game for a few minutes to be sitting and playing and lift her legs and fall over. I was working on ordering something online and would grab her and lesson the fall. She thought this was so funny until one time I was not as quick. She was on a thick blanket on a rug so I knew she was fine, I think it just stunned her. Brent got home around 10 and she was wide awake. He took her for a little bit so I could get a couple of things done quick. We put her to bed sometime after 10:30 and she still fought us. We were up multiple times during the night again with her fussing. Not sure what this is all about... the mysteries of Jillian.
Thursday:
She slept and fussed off and on all morning. I gave her extra laxatives since she had not pooped in a few days and I figured it was making her belly hurt. She spent the morning playing on the floor naked because I figured when the poop came it would come with force. It finally came around noon and did not have as much force as I was expecting but it did smell like a skunk was loose in the house. Alumentum does some bad stuff to the air when it comes out. I spent part of the morning trying to make dr appointments. I got the audiologist appointment scheduled for July 9th. I tried to schedule the neurology appointment but she has to be referred to them first and genetics did not do a referral yet so I sent them a message letting them know we needed the referral. Jillian thought the hold music was funny while I bounced between all the people. She is so goofy sometimes like how she just fell asleep on a book while doing tummy time today.
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