Name that Rash

Let's play the game "Name that Rash." Bailey has had a rash on her lower legs forever. Originally everyone said she had dry skin but in March when I looked at her legs in the sun I could see that it was a rash. Since March it has gotten so much worse. It spread to her upper legs, arms, and face. She also now has it on the back of her legs. The pediatrician, much to my dismay, does not seemed concerned. The first time I said something he said to put lotion and steroid cream on it. I went back and told him I did not put the steroid cream on it because I did not feel comfortable putting that much steroid cream on her. The steriods are absorbed through the skin. He gave me a RX and said to change her soap to dove. I did not get the RX filled because it was a tube of cream for $135. I believe we need to fix the problem and not mask it with steroid cream. All opinions are welcome. I know what I believe is the problem but would love to hear from some else. It hard to get a good picture of the rash. Click on the picture to enlarge it so you can see the rash better.

Another Life Down

If I were a cat I would now only have 6 of my 9 lives left. The babies are going to be the death of me. To any of you that don't know (that is if anyone is still checking my blog since I have been absent) Bailey was life flighted to Children's Hospital . Another life down for me...
What happened:
On Wednesday April 13 I took both babies in for ear infections and a cold. Bailey was also running a fever. The big kids had brought yet another cold home from school. We went home with antibiotics in hand hoping this would be over quickly. I called the doctor's office back the next day because Bailey's fever was not going down with Tylenol and Motrin. They said fevers of 101-102 were normal till the antibiotics kicked in. I call back again the next day and asked the nurse if she should not be at least a little better by now. She said give it another 12-24 hours. BIG MISTAKE!

At 5 AM on Saturday morning her fever was 103.2. We took her into the doctor's office. They did a chest xray, and they said it looked like she had a little pneumonia. They also did a pulse ox check and the highest oxygen saturation they could get was in the 70's. No one believed it. We got a shot of rocephin and was sent home. I had a pulse ox machine at home so I knew I could check her at home. I had to charge the machine before it would work so we were unable to check her until 6 PM. We were shocked with the number we got. I called the doctor, and I don't think he believed it. She did not look like a child that was in distress. I told him we were going to take her up to the hospital to my office and check it there. It was 63% (normal for her is 96-99%) and when we blew oxygen in her face it went up to 89%. We called the doctor back and he arranged for us to go to Children's. Unfortunately we had to go through the ER first. She spent 7.5 hours in the ER before she was flown to Children's.

She spent 4 days in the specialty care unit. On Sunday the doctors were talking about all kind of things that could be affecting her oxygen and none of it gave me warm fuzzies. Lee started calling me "the runner" because every time something bad was happening I would leave. I guess I deal with stress by running away from it. LOL On Monday she had a virus panel done and the culprit was found. She had the metapneumovirus. It is in the same family as RSV. The doctor came in that evening and said it explained why she was so sick. One doctor said this virus was RSV on speed. So to all the preemie moms there is something worse than RSV. Bailey finally woke up on Tuesday afternoon. She had literally been sleeping since Thursday afternoon and it was good to finally see her awake and playing.

By Wednesday night we were only wearing oxygen at night. On Saturday I talked to one of the nurses and she said she had seen some kids stay on the unit 2 weeks just on oxygen at night. I got upset and requested to talk to the doctor. The only thing Bailey was receiving that was not her norm was oxygen. I told the doctor I wanted to go home with oxygen, She agreed that could happen since I was a respiratory therapist. She said she would have to wait till the weekend was over.

Monday was crazy. They got pulmonary doctors involved, and they started talking about us being there till Friday. I told them I was going home. I might have gotten a little crazy eyed. They finally saw it my way, and we got home after 10 PM that night.

Oh I will one day post pictures from Walt Disney. We also had a late first birthday the weekend before Bailey went into the hospital. I have pictures somewhere. I just need to find my camera......

We are still alive.

This is pure craziness Mom that you have not posted in so long.
Surely all our wonderful friends understand the situation.
We have been crazy busy!! Bailey keeps trying to go on vacation. (I don't blame her)
Wyatt won't keep his clothes on.
I promised myself that I would post at least one time before the big kids got their surpirise so here goes one long post.
2/13/11
How can you tell if a baby is ready to stop using the swing?

No batteries are needed any more because their twin can swing them. We will soon try to phase the swing out. We still use them during nap time. For anyone who is interested they still take two naps a day. The first is around 10:30 for one hour, and the second is around 3:20 to 6:00. This is the schedule we used for the older two when they were little. Brianne still naps from 4:00 to 5:00.
It is so hard to believe how much Brianne has changed during the last year. I can't believe she will be 5 this summer. She loves the color pink and what could be better than a cowgirl wearing pink.

We have been having a lot of acting out with Brianne. Not only has she been peeing in her pants, but she has done stuff like color her bed. She even colored the side and top of the van. Hopefully some time with her during spring break will help.
We had a Valentine's full of love. Tyler finally got his book about Lego Star War's. The little ones got balloons. Bailey only gets to play with them when Wyatt is away.

2/21/11
Poor Brianne no longer has her kitchen to herself. Both Bailey and Wyatt are constantly going over there to pull the dishes out. This kitchen was definitely worth every penny I spent.
Dr Wyatt is here to fix all your ails. He loves to walk around with the stethoscope around his neck. He must remember seeing all the NICU nurses with stethoscopes around their necks.

Another sign that the babies are growing up and we must put something behind us. When they can climb into their own infant car seat it is time to change to a bigger one.

They gang up on you and before you know it one has a plug in their mouth.

2/28/11
We have a dilemma at our house. Wyatt refuses to sleep without his nap nanny. Bailey prefers not being in the nap nanny and we only put her back in it when she was sick and could not breath. We don't even strap Wyatt in his nap nanny anymore. If he falls out he gets back in it and falls back to sleep. He is a picky sleeper. I can say though he loves to sleep in the mornings. We usually wake him between 7:30 and 8:00. Little Miss Priss is an early bird and wants to wake up between 6 and 7. She chatters in her bed till we get her up between 7:30 and 8:00.

Tyler and Wyatt are great buddies. Tyler is so good with him, and they love to wrestle with each other.
Wyatt is into everything. He is definitely my most fearless baby. He climbs on everything and can figure out just how to get to anything. He has been known to take the wipes box over to something just so he can climb up. I turned on the water in the shower the other night to get it warm and I look back and here is what we see:
He loved the water hitting him. We let Bailey try it also, and she loved it. Both are little water babies.

We have still been going to medical appointments. OT is going well. Bailey does not like her at all. Mrs. Terry said that is normal. This is the first time she has shown a dislike of anybody. I am fine with all the crying as long as it is helping. We went to the NICU follow up clinic in Birmingham the first part of February. Wyatt is within normal limits. Bailey is catching up. She is now only 1 month behind her adjusted age. We were worried about her hearing, but it was normal. We discussed the lack of response to her name and her lack of good eye contact. They mentioned autism again and said they would test her in 6 months. I would just like to find out one way or the other so we could get a game plan and all the services she needs. I am worried. What else can I say about that? I have shed many, many tears over Bailey. She better grow up to be a momma's baby. We got their last synagis shot Feb. 21. Now we hold our breath and hope we don't get RSV. While at that visit we came home with what we call the plague. It has spread through our house like wildfire. Bailey got really sick and had to go to the Dr. She had 103+ fevers. She got a shot of antibiotics and meds for nausea. Her ears were so infected it was obviously making her sick on her stomach.

I will post again as soon as I can after the "surprise." Thanks to my mom, dad, and Aunt Brenda for making the surprise possible for the big kids.

Walking

Wyatt can walk for long distances. He will not do that for the camera. I got him to walk a couple of second for this video.

Play Ball

Party with the Cabinet

I caught the end of Bailey partying with the cabinet. She spent several minutes dancing and talking to the cabinet. She has become very verbal in the last few days.

More and More Medical Appointments

We spend more time seeing medical personnel than we do anything else. At least it feels that way to me sometimes. I am sure Grandaddy and Maw feel that way also since they have to go with me all the time. We still see the vision therapist and physical therapist every other week. They both seem to be pleased with Bailey's progress.

1/11 Maw and I went to Birmingham to see the GI doctor. It was a pretty ride up there because there was still snow on the ground. When we arrived we discovered that they were closed! I was MAD because no one had the sense to call us. It ended up being a God send because they saw us on that Saturday, and Lee was able to go with us. The doctor was pleased with their weight gain and Bailey even went up on the percentile chart (mind you she has not really reached a percentile). I told him that I guess force feeding works. He gave us samples of some high calorie milk products. The one we were going to use was pediasure 1.5, but it is just simply more than we can afford. It would cost us $600 a month. We will stick to the regular pediasure for $300 month. The 1.5 has more calories. Having premature babies is very expensive. The copays at the doctor alone will kill you. Each time we take them to the doctor it is $60.

1/13 Grandaddy and I went back to Birmingham to see the Urologist. It was not a fun visit and as I told the x-ray tech we will not be doing the VCUG every year. It is a good thing the x-ray showed no evidence of reflux of the kidneys because I will not let them catheterize my babies every year. The doctor said that you can't say that the relux of the kidneys is gone based on one x-ray, but we can stop the daily antibiotics. If they start getting infections we will have to go back, but if all is well we go back to see him next year. Praise the Lord one medicine eliminated!!

1/14 I started noticing at the Urologist's office that Wyatt was pulling his ear. I have also had a problem with Brianne wetting her pants. We became concerned that she might have a kidney infection. We ended up taking both to the doctor. Wyatt has another ear infection, and there is nothing wrong with Brianne. I think she is needing extra attention. She told us the other day we needed to give B and W away so we could spend more time with her and Tyler. That broke my heart. They have been through so much and have been so good through it all. She ended up recanting and saying she did not want me to give them away. Hold tight baby girl Daddy and I have something special planned for you in March.

1/18 We went to the pediatricians for their 15 month check up. Bailey weighed 18 pounds 7 ounces and Wyatt weighed 19 pounds 3 ounces. They both have finally reached the percentile chart based on their "actual" age. They are now 0% for height and weight. :) He was pleased with both of them. I expressed my concerns with Bailey still lacking good eye contact. She also does not recognize her name. Of course we did not get any answers.

Drum Roll Please:
1/21 and 1/28 We finally got an appointment with another occupational therapist!!! She is very expensive and does not file our insurance. Insurance will only reimburse us 50% of what she charges so our part will be $3000 for the year. Is it worth it to keep Bailey off the feeding tube? I hope so. She seems to think that Bailey will not need a tube and that she can help her. She said she is more worried about the stress on the parents because they tend to give up before the child. It is very hard on us emotionally, and it is hard on a marriage. It becomes all consuming. We will see her every week. She also said that in the future she may recommend we see a neurologist because of Bailey's history.

1/25 We went to the feeding clinic through the state. There you see a dietitian, RN, OT, social worker, and speech therapist. They recommend she see OT once a week. We need to introduce new foods. (hard to do folks when she wants to eat nothing!) I did not really learn anything new, but I was pleased to learn that the dietitian will have us come in for monthly weight checks. They also set us up to see a neurologist that comes to the clinic. I am pretty sure we are going to cancel it and see if our pedi wants to send us to a doctor in B'ham.

Please remember to keep Bailey in your prayers. Also remember to pray for all the little babies struggling to survive in the NICU and pray for the parents because of the emotional and financial stain they are enduring.