Little bit of this and a little bit of that.

First time at the pumpkin farm

So I have not posted in a week. It has been kinda a long week and on top of that my laptop corded ended up bent and had wires that were exposed and I did not realize how bad it was until I plugged it into an outlet and we lost the power to that part of the house, it made a bright flash and a lot of smoke... Add to that a laptop that has a very short battery life and you end up with no posts.
Last Friday I was diagnosed with a sinus infection and the doctor gave me a 10 day supply of  antibiotics and a refill in case the infection was not gone by the time 10 days was over... thats never a good sign. Well 8 days later this infection is still going! On top of it this week I got a stomach bug. Oh well. I think lack of sleep and a little stress might be playing a roll in not being able to kick it.
Monday Jillian went to her Ped for her 9mo check up! On their scale she was the exact same weight as last month at GI. Her doctor looked her over and said that she looked good and she got 1 shot. :(
Wednesday night we had some family time and went for a walk in the park and to Target. That night she started up with the seal cough again. She had a hard time sleeping. The cough continued through Thursday and Friday we ended up giving her a neb because she just could not stop coughing. That seamed to really help and cut down the coughing a lot.
Friday morning the three of us went to GI. I have to say I was a little nervous! Big appointments make me nervous for the couple of days before because I feel like there is always a little bit of uncertainty. It takes work to mentally prepare for them.
Friday when we weighed her she was up 2oz since last month! I know that is not very big compared to other weight gains she has made while on J feeds but I was worried she had gone down a little so a positive number is good even if it is small!
When we got into the room we found out our normal nurse and nutritionist where gone! This sent me into a little bit of a panic. To be completely honest, those two are part of the reason we go there. A different nurse came in (that we had an interesting experience with inpatient before) and a different nutritionist came in. At first the nurse asked us some odd questions (like we are always asked "safety" questions inpatient but never at a clinic visit... today did we look like gun all over our home?) They then asked us about how the last month has been and I filled them in. The nutritionist asked if Jillian was on any vitamins. I told her no, but that we were wondering if she should be. She said she and the doctor would talk about it.

Hiking the Pottawatomie trail in Lake Geneva

When the doctor came in Jillian let her pick her up! Jillian is starting to trust her. We talked about the choking on nothing and how scary last Friday was when she choked after crying. We talked about the test results from the gastric emptying scan and how Jillian clinically commonly shows the opposite of the results. We talked about how Jillian needs laxatives daily to poop. The doctor then said that clearly she has a motility disorder. A name to this! The definition of a motility disorder from the Children's website is: "condition where a person's nerves and muscles in the gastrointestinal tract are not working together correctly. Typical symptoms of a motility disorder are constipation, a swollen stomach, pain, nausea, vomiting and diarrhea." Jillian has everything on that list except a swollen stomach (most of the time) and diarrhea. This make sense because it means that everything is not coordinating together the way it should. Yup, sounds like Jilli! For now at least, the name does not change anything. It gives a name to her symptoms however the coarse of treatment she is currently on is what we will continue for her.
The doctor looked at her diaper rash, which has come and gone since she pooped out the stuff they gave her for the gastric emptying study. She said it looked like it has turned into a yeast infection. That made since too because she has had a funny smell around her tube site a hew times this week and they said it might just be one giant yeast infection so she is now on a med for that.
She looked at the tube site and said that it looked alright. She asked when she was moving to a button and we explained the conversation with the head of IR. You could tell she was trying to keep professional and said she guessed it was fine to wait until December. I'm positive the head of IR never sent anyone notes like he said he would...
We talked about what to do when the breast milk runs out. I stopped pumping over Labor Day weekend, however we still have a lot left in the chest freezer. I wanted to have a plan in place for what to do once that was gone. She said that she would go to Elecare. That is an amino-acid based formula that is broken down even farther then the formulas in the baby isle. It is for kids like Jilli and has a price for kids like Jilli... around $45 a can and when she switches to just formula a can will last us 3 days! Ouch! I told my dad that we are doing are part to keep hist Abbott stocks healthy!
We also talked about vitamins and decided that we would add one to her tube. They are going to send a scrip to our mail order pharmacy.
The dr. also decided that she would like Jilli to be evaluated by the feeding team again and would be placing a referral in for that. She has not been evaluated by them since April so it is probably a good idea! We will see what they have to say.

In the afternoon I called our insurance about an issue and asked while I was on with them if they would cover Jillian's formula. They said they would cover it after we met our deductible for her for the year of $2,000 and then pay 80% until we met our out of pocket for the year of $3,500 for her. We hit all of that already this year but that will be how it is come January 1st. At $15 a day for food, $15 a day for pump rental and about $2 a day for the pump bag, it costs her $32 a day just to eat. It will take her 62 days to meet the deductible for the year for her if all she does is "eat" in the first two months of the new year and does not see a single medical professional. haha! I bet we hit our our of pocket max by the end of February like we did this year. Lets just hope next year our out of pocket max kicks in on time next year and I'm not still fighting it in September...
I talked to med supply also and they do stock Elecare so we can get it through them. I try hard to keep away from the insurance company's "recommended" company because all I hear about from the feeding tube community is that they are no good and just keep getting worse. So while at times I get annoyed with our supplier they are better then many others!



Well it is Saturday and in my house growing up that meant cleaning day. The boys just got home from Home Depot and we are going to start on cleaning/house projects... if anyone has a magic wand that would like to complete all of it for us I would take it... :)

Got Milk?

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