Loved and blessed

I write this with tears still welling in my eyes with the feeling of love.

Brent and I looked at each other this afternoon and just talked about how blessed we are. Blessed by God, friends and family.

We are blessed to be the parents to these two amazing girls. I feel honored that God would let me be their mom, its humbling. They are two incredible girls.

We are blessed by our church family. I was reminded once again today that our church is a family and that we are loved. It has been hard for me these past few years taking a step back from serving. Serving at church is how I grew up... my parents have always been involved and taught us to serve as well and since having Jilli I have taken a step back and Brent has done most of the serving for our family while I take care of the girls. But I have felt like I'm not doing my part in the church family to serve others... Brent and I are both do-ers... and we are also very much people who look at the world as there are so many other people going through so many things that we want to make sure everyone else is being taken care of. I see the world as everyone has their own "stuff" going on, sure our's is health, but everyone has something going on, and I never want to make life harder for anyone else, but today as I talked to two different friends who offered to help bring us some meals so when we get home from the doctors we dont have to worry about that, to a committee at church helping us with some of the expenses of being at doctors and the hospital so much, to people just coming up to us and asking us how we are doing... I am overwhelmed by love! I am humbled that people have taken it upon themselves to love on us! We are the type of people who are too stubborn sometimes to ask for help when we need it but are overflowing with gratitude that people would see past our stubbornness and love on us anyhow.

We are blessed by friends and family. We have some amazing people around us! Some people we talk to often and some who we don't see as much but still feel their love. Thank you for answering texts when I'm overwhelmed and being the hug I need.

We are blessed with a great medical team. We have a team that has come around us and really works to do the best they can for our kiddos. Sure there are times of frustration, but this is a high emotion situation and I am a momma bear for my girls. I ask for prayers this week. Jilli is having a test done on Tuesday where they have to put needles in her legs and run an electrical current through them to test how some things are working but for this test to work right she has to be awake and it is not going to feel good. It is hard for this momma's heart to take her to something that I know will be painful, but I also know we need this piece of information. On Wednesday we follow up with the doctor who ordered this test to get the results. It is going to be a long week here but I am thankful that our medical team cares so much about my kiddos that they work their best to help.

I just want to say a HUGE thank you to everyone! If you read this blog, or smile at us passing by, or like our post, or love on us in one of the many ways the people do... thank you! thank you! thank you! Your kindness is noticed and SO appreciated!

Miss Lydi-boo sleeping last night!

Jilli getting ready to swim!

I am blessed to have Brent with me in this journey of parenting!

Never dull here

Parenting while on Benadryl brings a whole new level of "fun"

At this point my hives look like a healing sunburn which is much better then the red tomato look I was sporting. I'm still living on the cocktail of Benadryl, prednisone, zantac and hydrocortizone cream but I am hopeful that soon those things can all go back to the medicine cabinet. I finally figured out on Wednesday what the cause of these lovely hives are... detangling spray! Last Friday night I took a shower before bed and put my hair in a bun. I woke up Saturday morning and had a huge knot in my hair and I was headed to get my hair cut so I did not want to show up with a rats nest so I used Jillian's detangling spray. What I didn't realize was her spray has coconut oil in it and I am allergic to coconut. I was racking my brain trying to figure out what caused these hives until Wednesday morning when we used the spray on Jillian's hair and then I remembered I used it on Saturday and sure enough when I read the label there is coconut in it. I read all the labels for my own hair products but I didn't even think to read it for Jillian's. Lesson learned! Detangled hair is not worth a week of hives!

Wednesday morning I took Lydia for her OT eval at the same place Jilli gets all of her therapy. They said that Lydia's bottom lip has lower tone then her top and her left side has lower tone then her right. They gave us some exercises to do but they only temporarily help tone. We are going to meet with OT twice more over the next 6mo and then see what she needs from there. As a 6 week old she is not really behind yet cause there is not much to be lacking at this point but we are trying to help her not get behind given that we know she has tone issues.

After OT mom, Jilli, Lydia and I loaded up and headed to the Kohl Children's Museum in IL. Jillian LOVES museums and we got a living social deal for this one. When we first got there the place was really full with day care groups (Jilli was very overwhelmed by the noise and we had to go outside) but then they all went to eat their lunches so the museum calmed down a lot. Jilli went into the music room and stepped up a 6in step to look at something. She went to step back down and fell. Jillian falls a lot... it is part of her low tone. It is probably not an exaggeration to say Jillian falls at least once a day just walking. We are use to her falling and most of the time she just gets up and keeps going. If she is tired she is more likely to get upset about falling but most of the time it is very short lived. After this fall she was really upset. We tried telling her to just walk it off and that she was fine. She tried walking on it but each time she tried her leg gave out and she fell. She started crying that she needed to be carried which is not like my independent little girl. We took her over to another area that had seats to play for a little bit to try to distract her and see if just sitting for a little bit would help. She tried to get up and walk on it and fell again and was crying that she couldn't walk. We decided to try and go to the market play area because that is her favorite and see if she would push a cart and we could not get her to walk on it. After an hour of trying to distract her she still could not put weight on it and we decided we should get it looked at. We drove to the walk in clinic in Lake Geneva. We ended up with the same dr I had Monday night (he attempted to tell me while I was sitting there in pain on Wednesday that my hives were gone... while I still looked like a lobster...) They did x-rays of Jillian's leg and ankle (they took her to x-ray in a double wide wheelchair lol) and nothing looked broken. The doctor assured me that she would be walking on it by morning and to wrap it up and keep it elevated and just carry her around. We got home and she laid on the couch the rest of the night until bedtime when she told us she needed her bed. Thursday morning she got up and still could not walk on it without falling and crying. Thursday she laid on the couch until 2:30 when we ran to Walmart. Thursday night she took a couple of steps with help but you could tell it still hurt her. Friday morning we were able to get her to take some more steps and Friday afternoon she had her Fancy Nancy party at the library. She has been waiting for this party for weeks and was so excited! She decided she needed to wear her Sofia the First dress and she wanted me to wear either my Minnie mouse dress I got at Disney last year or the outfit I wore the Mickey's Not So Scary Halloween Party... however much to Jillian's disappointment, my body 6 weeks after having a baby does not fit into either of those outfits so I wore a dress I was able to get zipped and called it a good day (never thought my post baby body would disappoint my three year old lol... trust me kiddo I would like to fit in my pants too!) Jilli had a great time at the party and was so well behaved. One child was poking at her oxygen stickers and Jilli politely asked her not to and then when the child did not stop Jilli without making a fuss just came and sat on my lap. I was so proud of how she handled the situation. We had a great time together. They did a fashion show at the end and Jilli was limping on her leg but she was determined to participate with everyone else. I could see in her face that her leg hurt but she wanted to join in with everyone else. When she got home she wanted to do an art project with grandma and then she hung out on the couch. By 7pm she was asking to go to bed which is really rare for Jilli and by the amount of crying going on you could tell she was really tired. She went upstairs around 7:30 and laid in bed however she did not fall asleep until closer to 10pm. Right now it is 9:45am and she is still sleeping!

Lydia's visiting nurse came over on Thursday. In the 9 days since switching over to only formula she only gained one ounce (she is at 8lb 5oz). She was also having green poop which can sometimes be a indication of a milk protein allergy (we were trialing with a milk based formula, however when she was getting breast milk it was dairy limited because I watch my dairy intake). I called the dietitian and she switching her to Alimentum at 22cal to see if that will help her to gain weight. Her nurse and I also talked about some of my frustrations with getting med supplies from them and about how they will just leave oxygen sitting outside my house. She said she is going to go back and talk to her manager because she agrees that some of the stuff that is going on just is not right. Hopefully this helps.

We are having a low key weekend here. Lydia got up around 7:15 this morning and she has been cuddling in my lap as I typed. She is such a little cuddle bug!

Big thank you to my mom this week! She came and helped me with the girls this week and I really appreciate it!

Jilli doing the scavenger hunt outside at the museum

Lydia is working on keeping that passy in

 

Jilli loved the water room

 

Telling grandma about her boo boo

Her leg leaving the walk in

My little peanut

Lydia like tummy time

Jilli resting on the couch

Lydia deep in thought

Jilli and mommy  at the party

She got to make her own crown!

and her own necklace

Lydia chilling in the mamaroo this morning

Little miss making faces!

Hives, Endocine, Surgery

I'm So Sunday afternoon I am sitting at lunch and feel my face and it feels like I have the start of a couple of zits... no big deal, its 5 weeks after having a baby and my body is still trying to regulate hormones. By the time we got home it felt like a couple more zits and at bed time it was really starting to bug me so I looked in the mirror and noticed it was not a couple of zits but a rash that was on both sides in front of my ears. I get rashes that are weird. I didn't think much of it and took two Benadryl and went to bed. Well Monday morning I woke up to it spread across my face and starting down my neck! Joy, we had a day of Jilli appointments and broken out was not the way I wanted to go. I put some anti-itch cream on and headed out the door. Once Jilli's first appointment was done I headed to the pharmacy and asked what they had for hives. The pharmacist grabbed me some stuff and asked me if I had an epi pen and if I knew how to use it.  We then headed to Jilli's next appointment and then to lunch. We had lunch at Mayfair and after the first store we went to I was just in too much pain from the hives and needed to head home. Brent got home from work and asked if I needed to go to the walk in since I had now been treating these hives myself for almost 24 hours and they were growing. I told him no (I'm stubborn) but a while later I decided to suck it up and go since they were starting to spread faster and had now become very painful and my lips and tong started to feel funny. My mom took me to the walk-in. They prescribed prednisone zantac, skin cream, and Benadryl because they were so bad and told me if they got worse that I needed to go to the ER. Thankfully they meds have stopped the spreading, the pain is not as bad and they are not as bright red. The one half of my face is still covered in one giant hive. This was not really needed to add to this busy week but it is what it is. I have no idea what caused the hives... just my body acting like my body!

Yesterday Jilli saw endocrine for the first time. They said her overheating is not caused by her thyroid and that it is probably either brain or muscular based but that they can't help with either. They said that Jilli is really really short based on Brent and my heights and that if after we have more of the puzzle of Jilli figured out that if we wanted to come back to discuss growth hormones we could however she pointed out that making Jilli tall just for the sake of tall does not make sense especially if she going to need long term mobility help. Brent and I talked last night and decided that at this point growth hormones is not something we are interested in at all. She is on enough meds already... we don't need to add meds for things that are not medically necessary. She is shorter because of her poor nutrition when she was little and we can't change that now.

Jilli also had her tube change out yesterday. She is such a brave girl. She had tears in her eyes and said a couple of times that it hurt but she laid still and was such a big girl. She did tell the guy doing her change out that he is not her favorite because she like the other IR guy better however once he was done changing her tube she looked at him and said "thank you for everything you do." That melted the hearts of everyone in the room.

Today the GI office called. They decided they are going to have the guy that is doing Jillian's surgery do both girls' surgery on the same day. September 9th is the big day! Lydia will have to be in the hospital at least overnight for her's while Jilli should be released later in the day. I am trying to figure out all of the logistics of it but I am sure this is not the first time Children's has done siblings in the same day.

She also made me proud yesterday. My mom and Jilli were playing and Jilli sang a Daniel Tiger song when she was mad about how to help calm down. My mom said that Daniel is her hero because he taught Jilli good things. Jilli looked at my mom and said "No grandma, God is suppose to be your hero." She is one smart girl!


Well that is enough fun around here for right now :)

Captain Jilli! Mom and I took the girls to the Rockford Children's museum on Friday to get out of the heat... we had swimming plans but it was too hot!

Jilli putting a body together

Watch out world!

Lydia just hung out!

Jilli and I both got hair cuts on Saturday

Bumpa and Lydia cuddles

Rummage sale score! A cool tummy time mat!

she loves her giraffe

apparently the tummy time mat is good for a nap lol

Tubie Sisters! Lydia is wearing Jilli's first Christmas dress!

My parent's new stroller!

Birthday cake at Buca di Beppo's! Yum

Jilli waiting to go into IR

Not a very good picture but this was the rash around 1 yesterday... it got a lot reader and larger by the time I agreed to see the doctor and was covering my entire cheek and in patches on the rest of my face

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!

I love when she is just hanging out and happy!

Jilli read her a book

A Jilli-fish

She was so excited to have a tail!

Her new cooling vest to help her with overheating

We went to the big exhibit at the zoo... Jilli did not like it! She kept telling us that she does not like huge things!

Lydia thought the zoo was a good place for a nap!

Jilli fell asleep in the car!

Daddy and Lydia cuddles

My cousin and grandma came over on Sunday

Jilli playing at Discovery World

Don't let Jilli drive a plane... she crashed this one upside down into Lake Michigan

watching her fish toy get made

Jilli and the Jelly fish

a mommy and Jilli selfie!

The cake that Brent made me. He is so sweet! I love that he took the time to decorate a cake for me and make me daffodils on it! 

Jilli has been pretending to be Izzy for days! I had bought this after halloween last year on clearance and just pulled it out. She was so excited!

Lydia hanging out this morning