Trying new things

Jolianne is having a great day today and is trying something new. They have changed her feeding to every 3 hours instead of a continuous feed all of the time. They have also started letting her practice taking a bottle. Today she weighs 5.7 pounds. She looks so healthy. I was noticing in her pictures that she looks like she is filling out more. Here are some pics that we took today with the speech therapist.






Jolianne is tasting formula for the first time on her pacifier.



















I am holding her while the speech therapist gives her the bottle.







I changed her diaper and she woke up a little more, then I got to give her the bottle. She didn't take very much today. We are going to try again tomorrow when she is more hungry from her change to 3 hour feeds. We will keep trying so that she gets use to what she is suppose to do. With babies who have been tube fed it doesn't really sink in at first that they have to work for the food. They are use to it just going into their stomach. One day at a time, we will take baby steps ;)

Doing Good

Jolianne is having another good day. She is up to 13 cc's an hour with her feeds and is still at 24 calories of supplements. Today she weighs 5.5 pounds. She is still tolerating her feeds with no problems at all.

Last night we carved pumpkins for Halloween. We all got our own to design. Daddy even did one for Jo Jo.

Jo Jo's 1st Halloween Pumpkin

Andy, Ronnie, and Jo Jo's pumpkins from left to right.

Shopping for a little girl.

Jolianne had a really great weekend. She is up to 8 cc's with her feeds and is at 24 calories from her supplements. She is tolerating it very well with no episodes of getting sick. They are talking about putting Jo Jo in an open bed again, but we need to be sure that she is going to tolerate her feeds. She is 5.2 pounds so she is making progress.

Now I have a funny story to tell...

A few years ago my friend Sonja and I went school shopping at lunch for Andy and Ronnie. We drove over to the outlet mall and went into the Old Navy and within 15 minutes I had 5 outfits for Andy and 5 outfits for Ronnie. Everything was interchangeable. No fuss at all. I was good to go and ready for school to start. Sonja said to me, "Wow, I can't believe that you got 10 outfits so quickly." Until today I didn't really see what what so amazing about my shopping for the boys.

Today I was once again at Old Navy, this time I was in the girls section. I think a better description would be that I was GAZING into the girls section with twinkling eyes. Everything looked so cute. In front of me was a cute little sweater with a bunch of different colors of pink. I looked to my right and there was ANOTHER cute sweater with butterflies and flowers, beside that were some little blue jeans with butterflies embroidered on the leg, oh and look beside those pants some little pink pants with flowers. And look at those cute little Mary Jane shoes....and on the wall, there is a gold sweater dress and some burgundy pants and some cute little shoes....and beside that a little ballerina skirt and a frilly pink top. I am whisked back to being a little girl and dressing up your favorite dolly. I see super cute hats and coats and leggings. So much to choose from, WHICH ONE DO I LIKE THE BEST...I can't choose, I like them all. I look down and I have around $2oo dollars worth of clothes in my hand. At this point I had to say to myself, "Crystal, if you go home with all of these clothes, Jeremy will divorce you. No counselling, no trying to work it out, just divorced!!!!" So I slowly start to put the sweaters back and the shoes back, and the legging, and the blue jeans, and the ballerina skirt and the hats and...everything else. I walk down the aisle empty handed toward the door. "You can do it Crystal just keep your eyes on the door." But wait...now I am in the boys section and they have jackets out. I remember that Ronnie lost his jacket on the playground last week and I promised I would get him a new one. So I am looking at jackets with Wolverine, and Hulk, and Spiderman and Superman. Which one, which one. Which superhero would my little Ronnie like the best. They are all so cute. Then I remember, this is for Ronnie. Ronnie doesn't care about cute, he cares about a jacket being warm on a cold day. My mind was still in girl mode and I needed to get into boy mode fast before I ended up with 4 jackets ha ha. So I pick a gray jacket with no Superheros, that happened to be on sale. (yeah me!) I paid for the jacket and left the store. When I got to the car I realized I was there for an hour!!!! Now I know what Sonja meant. With girls there is no grab something and go. You have to coordinate, and plan and make several different outfits to see which you like the best!!! Not the case with boys clothes. =)

I realized two things today:
1. If you go girl shopping you better have a good chunk of time set aside.
2. Never go shopping for girls and boys on the same day, my brain can't handle it!!!

I hope everyone is having a good day today,
Love-Crystal

Jo Jo's New Room

New lights installed by Daddy and Andy

New top trim installed by Mema and Pepa.
New floor and floor trim by Daddy

Jolianne's room is comming along very well. Thank you so much to Jeremy, my mom, my dad and Andy for putting in such hard work to get her room together. I know it will mean a lot to her to know that you all did so much for her. These are a few pictures of Phase I of getting the room together.

Ups and Downs

Sorry I haven't written in a while. We had a pretty crazy week. Tuesday evening Jolianne had a fever of 104. Wednesday morning they decided to do a lumbar puncture to take spinal fluid to test for infection. They also took a few blood samples and a urine sample. They stopped her feeds and started her on a general antibiotic until they found out what was causing the fever. While they were trying to take blood she got sick and threw up three times. The last time she got sick there was a little blood. This was very concerning. Having two boys I have seen my share of scrapped knees, bloody noses, and scratches. I usually do pretty good assessing the problem and doing whatever it takes to get the "boo boo" taken care of. Nothing can prepare you for seeing your 3 week old daughter throw up blood. I tried my best to keep it together but I finally had to turn around and cry. The nurses said that she was fine, I just had a hard time believing it. Luckily Jeremy was there and he hugged me and told me everything would be ok.

Thursday they still held off on her feeding and decided that they needed to place a suction tube in her stomach to take out the extra air she had. They said that this could be causing her discomfort. She seemed very unhappy on Thursday. She would cry out every now and then and looked like she was in pain. Once again, nothing for me to do except for stare at her through the glass. I really feel very useless when I can't touch her or comfort her. I hurts in my sole. All I want to do is pick her up and cuddle and tell her that everything is ok, but that never seems to happen. Thursday evening they called to let us know that she had a urinary tract infection. We were very happy to hear that she didn't have an infection in her spinal fluid or her blood.

Friday she had a wonderful day. No fever, no getting sick, no painful look on her sweet little face. They let me hold her. They said that she needed to be cuddled a little bit after such a hard week. Truth be told, I needed to cuddle her also. It felt so good to have her snuggled in my arms. She slept like a baby!!!! Very peaceful and very happy.

Jeremy and I are on our way to see her now. Thank you so much to everyone for your prayers and you understanding. We are doing the best we can to juggle work and the boys and Jolianne. Sometimes it gets very overwhelming but we are able to make it through because we have such an amazing support system.

Love,

Crystal

New Oxygen Tube

Update on Jo Jo:
They have placed an oxygen tube in Jolianne's nose to help with her oxygen desaturations. They moved her roommate out of her room because she had a fever. We are still being very cautious with Jolianne because we do not want to expose her to any illness. Even the simplest of colds can cause her a lot of trouble. We will continue to keep her in our prayers with hopes that she does not get sick.

I would also like to ask you to pray for my nephew Christopher who has been diagnosed with Swine Flu. We hope that the family and those that have come in contact with him will not get sick also.

Love,
Jeremy and Crystal

Blood Test Results

Daddy & Jo Jo

Jolianne's blood culture came back normal so she is not sick with a cold or the flu. She did not get sick last night so hopefully she will continue to do well. The nurses told Jeremy last night that she does need the supplements or she will not get bigger. They said that since she has a heart condition it makes it harder for her to put on weight because her body has to work extra hard to process everything. She is still in the isolette and will continue to stay in the ICU until they figure out what is causing her to throw up the mucus. I will keep you updated as I find out more info.

Love,

Crystal & Jeremy