Brown and Pink Polka Dots : GI, one month and birthday

I feel like we have been running lately!

Saturday we took Jilli to zoo class. She loves zoo class! Brent and Lydia hung out in the zoo while Jilli and I went to the class and then we met up and hung out in the zoo for a while. After we left we headed to Buy Buy Baby and Babies R Us to pick a few things up and then went over to Southridge. Brent and the girls took me out to dinner to celebrate my birthday. Overall it was a really nice family day together.

Monday morning we had an 8:30 GI appointment for both of the girls where a lot was planned:

Jillian:
-We are upping her formula from 22cal to 22.5cal. As she is getting older and bigger she needs more calories in a day and we have not adjusted her cal intake in over a year. She has finally reached 35in tall!!! This will make her very excited to be able to ride the rides at the carnival.
-Jilli needs an endoscopy every year to check on how her stomach looks. This year her doctor wants a different doctor to do her endoscopy as this other doctor is studying this abnormality in the pyloric sphincter and they want to see if Jillian has it. They are also talking about possibly putting a balloon in the sphincter to dilate it and/or putting botox in the sphincter. The dilating and the botox would be to possibly help her gastric emptying however that would not solve the reflux or the aspirating problems that she has so I am kind of unsure about them. If she was not already needing an EGD I wouldn't even consider the other stuff because I'm not sure they are really going to do anything for her but since they will be in there anyhow we will have the conversation. The EGD is going to be sometime this fall, I am just waiting to hear when.

otherwise everything is staying the same for Jilli

Lydia:
-She finally made it over her birth weight!!! She is now 8lb 2oz! It only took her almost 5 weeks but she finally made it!!!
-They changed her feeding advancement plan a little because her weight for length is not what they want yet (she is long and skinny) With tube feedings in little ones you adjust their amount by a little each week just as they would take a little bit more if they were nursing or bottle feeding.
-We are trialing different formulas. I had been pumping all of her milk for her but they want to see if she has any cow milk issues so for the next two weeks she is on Similac for Supplementing and then based on how that goes we might be trialing Alimentum and Elecare. Based on how these trails go will determine what she is on. Because we are ruling out milk issues she needed to go completely off breast milk. For now I am still pumping a small amount and freezing it incase she is able to go back to it later but at this point she will most likely be formula fed. What is best for her is what we need to do however I am having a little bit of a hard time with it. I was never a person who has been an absolute have to breast feed person but I feel like I pumped til Jilli was 9mo old that I needed to do that for Lydia too... even though pumping and tube feeding with two kids was rather overwhelming. It is honestly probably best for all of our sanity that she moves to formula but its still hard.
-Lydia went NPO as of Monday. The choking was just getting too much and the other day she started to turn colors with it. We need to protect her airways.
-We will be placing a GJ tube in Lydia. It is better in the long run to have a tube in the stomach then in the nose and it does not look like she will be going back to orally eating anytime soon. The girl's GI dr suggested that we have the doctor who places feeding tubes for kids in the NICU place Lydia's because she is so small. We are going to give her a couple of months to gain a little weight before she has the surgery but it will most likely be sometime this fall.
-Before the surgery her GI wants to do an upper GI study just to make sure all her GI organs are in the right place. This is becoming an interesting endeavor that the doctors are trying to figure out because it can't be done with the tube in her intestines so they are trying to figure out the best way to do it. I am letting them just figure it out and let me know what they decide.

By the end of the GI appointment I was mentally exhausted but it was a good appointment (it was several hours long). After that we headed to Starbucks for lunch and then to Discovery World to celebrate my birthday. Jilli loves museums and I love to see her happy! Spending the day with my mom and the girls was a great way to spend my birthday! After the museum we headed to Babies R Us to buy formula and then to Red Lobster for dinner. When we came home Brent had baked me a cake and used frosting to make daffodils since they are my favorite flower and they are not in stores right now. Thank you to all the people to called/text/facebooked me to wish me a happy birthday on Monday!

Tuesday Jilli had therapy. She worked pretty hard especially for therapy getting moved to Tuesday morning this week because of her appointment on Monday. Her PT and I talked about how pulmonology wanted Jilli to try going back down to .5lpm of oxygen this summer however there are still weeks where Jilli starts therapy in the low 90s so it does not make sense to try to lower her if she is not staying where she needs to be all the time now at the higher amount. I talked to Jillian's ped about it and she agreed that it is not a good idea to lower her now.
After therapy Lydia had her nurse visit at the house. Her nurse is really nice and it is nice to not have to drive someplace for weight checks. Tuesday night Jaime and Jason came over and we all hung out. Jilli loves being silly with Jason!

Wednesday Lydia had her one month ped appointment. They said she is looking good and they are happy with her weight gain! We are going to continue to hold off on shots because Lydia is showing so many similarities to Jilli and Jilli does so poorly with shots that we just don't want to risk it. Her doctor is also sending a script over to New Berlin Therapies (where Jilli goes) to get her started with therapies. The goal is to not have Lydia fall as behind as Jilli did and to be more proactive.
In the afternoon my friend Bethany came over with dinner for us and her kiddos and Jilli got to play together. We have been SO blessed by some friends who have brought us meals and I can not say thank you enough or even start to explain how much it means to me. Since Lydia was born it has been a crazy run between doctors and I am so grateful the people would take the time out to bring us food so that is something we don't have to worry about. Just typing this I am tearing up with thankfulness that people would love on us in this way!
Wednesday evening I went to Bible Study. I had not been since Lydia was born and Jilli was begging me to go so she could have daddy time lol! It was really nice to go and hang out with other women. I brought Lydia with me but she just hung out and of course since we were at Cheddars she needed to poop (we have been to Cheddars twice since she was born and each time she has had a large poop... our first trip there is known a poopagedin)

Today is going to be a low key day. The only thing we have to do today is oxygen delivery which is nice to not have someplace to have to run in the morning today. Right now Jilli is still asleep and Lydia is hanging out in my lap. Yeah for a calm day!

Miss Lydia on 7/15

Miss sassy pants being cute!

I figured out last week that an infinity feeding pump will fit in the pocket of an Ergo baby carrier! This makes my life easier! Yeah for mommy hacks!