Thursday, October 29, 2009

Still doing good.

Jolianne is having a pretty good day today. She weighs 5.5 lbs and they have increased her feeds to 14 cc's an hour. She is still on continuous feeds. They decided to hold off on the feeds every three hours to give her tummy time to adjust to the feeding tube being placed there instead of in the intestine. They just moved it up to her stomach yesterday. We will see how she does with the increase. The speech therapist wasn't able to come today but they are going to try again tomorrow with the bottle. They are still practicing with the pacifier to get her use to the suck/swallow motion that she needs to have to eat by mouth. She had an eye exam today to be sure that the vessels had formed correctly. The doctor said that everything looked really good. He will examine again in 4 weeks. She also had an echo cardiogram today to be sure her heart is still doing ok. We haven't gotten the results back yet from that exam. Yesterday she had a head x-ray to be sure that her brain is growing correctly. Results from that test came back that everything looks great. We had been concerned that her head was small (microcephaly), but the doctor said that she isn't showing any signs of a lack of growth in her brain. Jolianne is one month old today so they are doing a bunch of routine tests to be sure everything is in working condition.

I also want to say happy 5th birthday to my niece Emma. She is such a sweet heart. She is very glad to welcome her first girl cousin to the family. I am excited to see them play together!!!

Wednesday, October 28, 2009

Family Game Night

I know this is a blog page for Jolianne but I just had to share this picture with you. We were having family game night over at my mom's house and we decided to play Monopoly. Ronnie was cleaning house and buying all the property he could. At the end of the game we added up our money and property values. Andy was declared the winner which immediately brought tears to Ronnie's eyes. He was so sure that he would win because he had the most property. Andy went ahead and allowed Ronnie to think he won the game by placing his name on the Trophy. Ronnie was so excited, so I took this picture of him hold his "most properties owned" trophy!!! I am so touched when I see Andy looking out for his brother and wanting him to be happy. God has truly blessed me with three AMAZING kiddos!!!!


Trip to the store to get a game $5.00
Newest Monopoly game $15.00
Look on your 6 year old's face when he thinks he is the winner $PRICELESS :)

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 ;)

Tuesday, October 27, 2009

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.

Monday, October 26, 2009

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

Sunday, October 25, 2009

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.

Saturday, October 24, 2009

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

Tuesday, October 20, 2009

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

Monday, October 19, 2009

Update on Jolianne

The doctors made their rounds and they think that Jolianne may be sick. They are doing blood work on her now. They said that it could take 24 to 48 hours to come back. If she is sick we will limit the opening of her isolette to Doctors and Nurses only. We hope that she isn't sick, but it is flu season and very easy to transfer germs. The doctors also told us today that the test for DiGeorge came back normal. We are very glad to hear the good news. We will continue to focus to getting Jo Jo ready for her surgery. Please keep her in your prayers.
Love,
Jeremy and Crystal

Mema and Jolianne

Mema and Jolianne
I wanted to post this picture because I thought it was so sweet. My mom holding her first granddaughter for the first time. Don't they look so cute together!!!! Jolianne really enjoyed her Mema singing "You Are My Sunshine".

Still not tolerating the supplements

Little Tater Jo taking a nap.
Jo Jo taking her pacifier.


Hello everyone,


I went to see Jolianne yesterday and she was awake the entire time I was there. It was so good to see her so alert. Andy and I both read a few stories to her from our Fairy Tale book. She really seemed to like it. While I was there she did get sick and she held her breath for about 15 seconds. It was really scary to see her do that. She did catch her breath again with a little stimulation and went back to breathing like normal. When I called to check on her this morning they told me that she got sick three times last night. She is back on her supplements and I wonder if that is still making her sick. They told us the other day that with the feeding tube in her intestines that it should prevent her throwing up. I am waiting on them to do rounds so that we can find out what the doctors say about her getting sick again. She still weighs 4 1/2 lbs so she is not gaining weight like we want her to. We will keep praying for her and her doctors and nurses so that we can find a resolution to what is causing her spit up her feedings.

Saturday, October 17, 2009

Back to Basics

Since I have last written there have been a few changes. Jolianne started getting sick and vomiting on Wednesday night and was not able to hold down her feeds. She was getting sick every few hours. They stopped her feeds and started them up again on Thursday evening at
6 cc's an hour. On Friday their goal was to work her back up to 10 cc's and readjust her feeding tube to go into her intestines to be sure that she was getting the nutrition that she needed. Jeremy and I went to see her on Friday and when the doctors did their rounds they decided that they were going to put Jo Jo back in the isolette. (That is the bed she was originally in when she got there.) The attending physician felt like maybe Jolianne was being over stimulated and that is what was causing the feeding problems and the bradycardia. Bradycardia is when your heart rate drops below what is normal for you.In a premature baby it is less than 80. It went down into the 80's when my mom and I were visiting her on Thursday causing the alarm to go off. When it happens it is scary but the doctors and nurses say that it is a common problem for premature babies that usually stops when the baby reaches "term". They are holding off on moving her up to the 8th floor because they want to be sure that she is able to tolerate her feeds along with the supplements that she needs to grow bigger. Jeremy and I are really glad that they have placed her back in the isolette. We have to remember that she is still 6 weeks away from her original due date of November 25. The isolette is the closest thing that they have that creates an environment similar to the womb. It blocks out noise and light and creates a nice warm environment for her to get bigger and bigger. Hopefully this change is just what she needs to get big and strong. Daddy is going to visit tonight so I will update with any new information when we get it.

Wednesday, October 14, 2009

Movin' On Up

Jo Jo had a realy good evening last night. No problems at all. They are going to be moving her up to the 8th floor today as soon as they get a bed ready. We will let you know when we have any new info about the move.

Love,
Jeremy and Crystal

Tuesday, October 13, 2009

Making Progress

Daddy holding Jolianne for the first time.
Jolianne's new bed.
Jo Jo made a lot of progress this weekend. After her tube was taken out on Friday she seemed like a whole new person. She opens her eyes and tries to look around. She tries to turn her head to get you in focus or try to see who is talking. She responds best to her Daddy's voice. Every time he talks to her when she is sleeping she tries to open her eyes to look for him. It is the sweetest thing in the world!!!! Daddy held his little princess for the first time on Saturday. I know that the picture is a little blurry but you can still feel how proud he is to be holding his little daughter. Jolianne also moved into a different kind of bed over the weekend. It is more open so it gives her a chance to regulate her own temp and get used to outside noises. They have increased her feeds to 10 cc's every hour. Not really sure how much that is because everything is in metric system!!! I really wish I would have paid more attention in school when they were teaching us that stuff. =( The thing that I do know is that is the max amount of food she can take at this stage. She is receiving no extra fluids, just the breastmilk. If she continues to remain stable she will be moved up to the 8th floor sometime this week. The doctor told Jeremy and I today that the 8th floor is the cardiac floor so she will be monitored for her heart only. The only things that they are watching right now is her temp, breathing and heart. If she continues to do well with her breathing and can maintain her temp on her own there will be no reason for her to be on the floor she is on now. I think that is all that is going on right now.
Thank you so much to Nana for the cute clothes she brought Jo Jo on Monday!!! She was wearing a pretty little pink onesie when I got there to see her today. I will post again when we get more news.
Thank you for all of your thoughts and prayers. We are so blessed to have such wonderful people in our lives.
Jeremy & Crystal

Saturday, October 10, 2009

A Very Special Evening

First time to hold Jo Jo
Jeremy and I went up to the hospital last night to see Jolianne and we had a wonderful experience. Because they took her breathing tube out they had her on her belly to sleep. She looked really comfortable with her pacifier in her mouth. After we were there for a little while the nurse swaddled her up and let me hold her. It felt so good to have her in my arms. I never would have thought a week ago that I would be holding my sweet little angel!!!! I also heard her cry for the first time. It was a little raspy because of the breathing tube being in her throat for so long. It was still a very good sound to hear. After I held her the nurse let me help give her a sponge bath. She got very upset with her bath. She was crying and very upset. After her bath she was very alert and opened her eyes to look around. That was the first time that we got to see her with both eyes opened. I know that she can't see very well right now but she was turning her head to the sound of our voices. It was such a special evening of firsts I can't put into words how much it meant to me!!!!

Crystal

Friday, October 9, 2009

Moving Right Along

Happy Friday Everyone,
We got very good news today about Jolianne. They have removed her breathing tube and she is doing very well breathing on her own. They gave her a pacifier this morning and she really liked it. She use to try to suck on her breathing tube so I am glad that she likes her paci!!! They have not taken off her blue light yet, but they plan to this afternoon around 4:00 as long as her numbers are good. Daddy is going to visit this evening so hopefully he can get a good picture of her without her tube in.

Her bracelets came in yesterday so I will have them for family this weekend!!!

Love,
Crystal and Jeremy

Thursday, October 8, 2009

Blue Light Special!!!

Today when I went to see Jo Jo she was under the blue light for Jaundice. The doctor says that she will have it today and over night tonight and that should be all she needs. We still don't have an answer on when the Heart Cath will be. They should have a decision in the next week. If they decide that they will do the Heart Cath next week they will take her breathing tube out tomorrow. They have changed her from a Ventilator to a CPAP. The CPAP allows her to do more breathing on her own. CPAP stands for continuous positive airway pressure, which allows for an easier transition to be off the breathing machine. Today when she was upset her nurse Libby showed me something called "cupping". It really helps to calm Jo Jo down. It creates the feeling like she is still in the womb by cupping her feet and her head. I tried it a few times and it worked to settle her down and get her calm again. They want her to be closer to 10 lbs before they do her surgery. As long as she is stable, that is the plan. If something happens and she needs the surgery, then they will do it sooner than 10 lbs. Her nurse today said it would probably be a few months before she will be ready, they want her to be closer to her original due date of November 25. Please keep Jolianne in your prayers, that she will get to 10 lbs so that she will have an easier recovery.
Crystal & Jeremy

Tuesday, October 6, 2009

My little sister yay!!!!!!!!!!!!!!!!!!!!!!!



On oct 2nd I met my little sister.I couldn't belive how amazing she was. I saw her at night time so she wasn't very active but whenever she moved she went crazy. I stayed for about 30 mins and then left to go to my aunt kims house where I stayed up for a little while and then went to bed. After I woke up I watched some movies,ate,and played video games.The next day I went to go see my little sister again after that I went home ready to start the school week.
Love you Jo jo, Your oldest brother Andy (monkeys rule)

PICC Lines & CT Scans

Jo Jo after her PICC line
Jolianne had a very busy day today. I got to the hospital at 9:40 and right when I walked in they started telling me about the PICC line they were going to do today. A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. To perform this procedure the doctors had to put her under general anesthesia. They whole process took about 1 hour. After they brought her back up to her room she was sleeping comfortably. I read her a few stories from our Fairy Tales book. I really enjoyed that part of the day. It was nice to sit with her and share that special time. Around 3:00 they took her down stairs again to do a CT Scan. They are looking to see if she has too much blood going into her lungs. If she does, they will do a Heart Cautheterization this evening. The results won't be ready until around 8:00, so we will have to be patient and wait it out. They will also be able to tell from the CT Scan what kind of surgery she will need. Sometimes they do a full repair of the heart and sometimes they do it in phases. We should know for sure tomorrow what the surgeons plan to do. Daddy is up with Jolianne right now keeping an eye on his baby girl. I will update with more information as I get it.



Love,

Jeremy and Crystal

Monday, October 5, 2009

Monday Update

Jolianne had a pretty good day today. Doctors orders stayed the same except that they added checking her abdomen every six hours for swelling. The swelling has gone down since they took out the umbilical line so they want to be sure that it stays that way and doesn't develop an infection. When I spoke to her nurse at 3:00 she said that they were still not able to redo her IV. They hope to have a nurse practitioner come down tomorrow to do the IV. If they can't then they will take her to Radiology to have it done. They put No-No's on both her wrists so that she would not pull her feeding tube and her oxygen tube out. They are really called wrist restraints but when my nephew Christopher had to have them put on when he was younger we would call them No-No's. I am taking her some socks tomorrow to put on her hands to prevent her from pulling on her tubes. I hope that she will like that better than the No-No's. If I know my little Jo Jo she won't like any of it. She wants to do it her way. What a little Diva. I love it!!!! Daddy is going to the hospital when he get off work. He has been thinking of his princess all day.

I Want To Hold Your Hand


Oh yeah, I´ll tell you something
I think you'll understand
When I say that something
I wanna hold your hand
I wanna hold your hand
I wanna hold your hand

And when I touch you I feel happy, inside
It's such a feeling
That my love
I can't hide
I can't hide
I can't hide

Yeah you, got that something
I think you'll understand
When I say that something
I wanna hold your hand
I wanna hold your hand
I wanna hold your hand


Lennon/McCartney
One of my favorite Beatles songs. I couldn't help humming it to myself when we were holding hands yesterday!!! I am all by myself this morning for the first time in 8 weeks. I woke up early to help Jeremy get the boys off to school. I really enjoy getting to spend time with them again. I am going to rest today and try to recuperate a little bit. Tomorrow I will see Jolianne again. I took a few videos of her this weekend that I like to look at but they always make me cry. Jeremy called the hospital this morning and they said that she is doing very good. She is very active though and she keeps pulling out her tubes. She always was pretty rowdy!!!

Sunday, October 4, 2009

Weekend Update

Jolianne is doing very well this weekend. On Saturday they stopped the sedation they had her on in an effort to keep her from pulling on her lines. Saturday evening they called us to let us know that the IV in her arm had leaked into her arm and chest causing it to puff up. They took the IV out and put it in her leg instead. The swelling went down and her arm and chest looked back to normal. On Sunday morning they did a chest x-ray and found out that her oxygen tube was a little too far down so they took it out and reinserted it in the correct spot. When Jeremy and I were with her on Sunday they took out the umbilical line that was giving her nutrition because it was causing some swelling around her belly button. Jeremy assisted the nurse by keeping her legs still. She was very upset when the nurse was taking it out. Her heart beat increased to 179 beats per minute. It is usually 145 bpm. When they were done with that, I got to change her diaper. I was so nervous. I have never changed such a tiny little diaper before. It was harder than I thought it would be because of all of the stuff hooked up to her. I was afraid of knocking something loose. Since we have been home Jeremy called to check on her and the nurse said she is doing fine. Tomorrow they are suppose to start a PIC line to give her more nutrition. They want to do her surgery when she is at 5 lbs. Right now she weight 4 1/2 lbs. They say that she should be up to 5 in a couple of weeks. Please keep our little angel in your prayers.

Love,
Crystal and Jeremy

Friday, October 2, 2009

A Few More Pictures

Her little hats are so big. I need to find her a smaller one!!!
Look at that big toe sticking out. How funny.

Jolianne with her baby doll Hope. I think that Hope's head is bigger than Jo Jo's!!!



Beautiful Flowers sent from John, Kim, Johnathan, Christopher, Tyler & Cameron
Balloon that was attached to the flowers.

Jolianne's diaper in relation to my hand. (so cute and tiny!!!)





Thank you so much for the beautiful flowers. They smell sooooo good. I love the white rose in the center!!!.

After Jeremy was sitting with me for a little while he pulls out this diaper from his back pocket and says. "Oh, yeah, I brought this for you so that you can see how small her diapers are." I was so surprised to see how little the diaper was. He is so thoughtful to bring it to me. He knows how much I miss seeing her. Little things like that mean so much!!!!

Crystal




Surgery Delayed

Thank you very much to Nana for sending the door mum to my room for Jolianne!!! It is too cute. =)



Because Jo Jo is doing well the doctors as CMC have decided to hold off on her surgery for a few weeks. They want her to use this time to put on a little weight. They are going to start giving her the breast milk that I have been sending over for her. They said that with her being a premie it really is the best thing that they can give her right now to increase her weight properly. Daddy says that she looks very peaceful today. Breathing looks normal and less spasmatic than it has looked in the past. They stopped the meds that were keeping her PDA open because the echo cardiogram that they took yesterday morning showed that she didn't require that assistance any longer. I will be so glad when I get to see her tomorrow.
Thank you so much for your thoughts and prayers!!!
Crystal

Thursday, October 1, 2009

October 1 Update

Jolianne is all settled in at Children's Medical Center. Jeremy got a chance to go with her and take some pictures of her room and some pictures of her.
Jolianne's Room
In her bed

Close up in her bed. They gave her a hand made hat. But she pulled it off.


They moved her IV from her head to her arm. Daddy feels much better about that. Still receiving oxygen my mouth to help with her Pulmonary Stinosis. She can breathe on her own but they are trying to make things as easy on her as possible.


Today's update is that Jolianne is stable. She does have anemia. She had a blood transfusion today and they will be monitoring her blood count to be sure she is OK. They did an echo cardiogram this morning and they should know the results of that this evening. She has been diagnosed as having Tetralogy of Fallot. They have submitted a genetics test to see if she has DiGeorge Syndrome. She is showing a few signs that are associated with DiGeorge. Tetralogy of Fallot, low set ears and low calcium levels. If you look up information about DiGeorge it can be a little overwhelming and scary. I urge you to keep in mind that each child's case of DiGeorge is unique. Not all children will present with all of the tell tell signs. Some children have very severe handicaps and some have very little trouble. In the research that I have done I usually find more negative than positive. We just have to take one day at a time. Jeremy and I have complete faith in God that He will keep our little girl in His very capable hands. She is a fighter and will have a long road ahead of her that may be difficult. Please continue to keep her in your prayers.
I will update again when I find out more information.
Crystal


Pictures, Pictures, Pictures

Here are a few pictures of Tater Jo when she was at Baylor.

First time meeting my sweet angel.

Just hanging out in the NICU.


Daddy's hand to show how small she is.






She has a tube in her mouth for oxygen. The started an IV in her head.


These pictures are Jolianne at Baylor. I have more of her at Children's. I will include those pictures when I update her status today.