Post Op Update

The most beautiful baby ever

I took Cayla to Lubbock on Monday for her post op appt. We were there for five minutes!! I love that we never wait at the office, but hate that I have to drive 6 hours (3 there and 3 back)for that 5 minutes.

The neurosurgeon came in and said his hands were freezing so he didn't want to touch her. Then he said wow, "I can't believe how great she looks." I said, "wait a minute you told me she would look like this." He said no swelling and she looks perfect, then he dictated his letter to our pediatrician and said she is the most beautiful baby he has ever seen. I have to agree. She is perfect. It is amazing to see the difference already. Even people who have only seen her at church or the store or something can't believe the difference.

Cayla started back to daycare and is doing great. She is getting back to a routine, so she is sleeping better at night. I am so glad. Twice now she has gotten up once in the middle of the night and then slept until 6 or 6:30. It is great!!

Thank you for all the prayers. She really is a miracle baby because of God's abiding love. He really takes care of His angels on earth.

I will post more later, but right now the "angel" is crying for mom.

Day 7 Pictures

These are pictures from day 7 after surgery. She is happy (that she's eating) and happy at playing. Of course, she did get a little fussy a little after these pics were taken, but I think she was just sleepy and didn't want to go to sleep and maybe teething a little too.

Cayla at home

Updates

Sorry I haven't blogged in a while. We have been busy since coming home. We got to take Cayla out of the hospital on Monday morning about 8 am.
Shan had postponed her flight so we went to eat at IHOP and then went to Wal-Mart so we could get a few things for Cayla. Then we took Shan to the
airport and dropped her off. Gran and I went back to the hotel for a short while. I rested for about 30 minutes or so, then we left at noon to come home.
Cayla made the trip wonderfully. She slept the whole way. We got in around 3 and I was exhausted. I didn't get to rest much because I had to take Amanda to pick up pictures at the fair, then had to get Zane. Cayla didn't sleep very well, but I had to go to work Tuesday anyway (I was so sleepy!).

The rest of the week has gone smoothly. Cayla is sleeping better at night and is not fussy any more than usual. She is teething on top of everything else and I never know if she is fussing about that or something else. I have to take her back to Lubbock on Monday for her post op appt. Then we shouldn't have to go anymore for a year. This surgery should be the only one she has to have. It is remarkable the difference already. I hope this weekend, Melissa and I can post the before and after shots. I will also post some more pictures then.

Thanks for all the prayers. We knew God had sent angels to surround us during this time. Cayla was supposed to look like she had been in a street fight, swollen and bruised. Her eyes were supposed to swell shut and stay shut for a few days. Instead, she had a small bruise under her right eye and her eyes were only swollen shut for one day. Amazing. Even with our scare, it could have been so much worse. I truly think she was just hurting and had been crying so much she lost her breath, even though she wasn't crying at the time. The nurses in PICU were wonderful. They took good care of her and us. Even more than that, I was able to take emergency leave at work. I only worked 5 days before the surgery--and they gave me PAID leave. God is so good.

I will try to post pictures this weekend and promise to blog at least once a week. Until then, best wishes to all of you.

Day 6 Update

Becky just called to say they are on their way back to Abilene from Lubbock. Cayla was released around 8 this morning. Gran will be staying with her the rest of this week. Becky will go back to work tomorrow, so please pray that she makes it through the day. Cayla is doing well and slept through the night much better than previously. Becky will try to write an update later this evening.

Day 5--back in the PICU

Day of Uncertainty

The neurosurgeon came in around 6:30 and said he was glad we had stayed in Lubbock. He said we would definitely stay till Monday. The head of PICU is a pediatric internist. He is really great and is trying hard to get to the bottom of everything.

Cayla woke up around 8:30 or so and the nurse checked her out and said she could have a bottle. So she drank 4 oz and kept it down. Praise God. We decided to wait till a second feeding to turn off the iv. Cayla and Mammy hung out together while Gran and I ran to get laundry soap and some goodies for the baby.

We got back at noon and found out that Cayla took one ounce of bottle and then screamed. That has us worried. We all three went to the cafeteria and when we got back she had taken two ounces of formula and kept it down so the iv got turned off. Then around 2:45 or 3 she took 3 more ounces of formula, but has been spitting up since. Not throw up like last night, but spit up!! I really don't know what they will do for her next. I have been wondering if she could have some baby stuff for stomach ickies. I know lots of baby's take Zantac.

I needed a break, so I came to the room. I will try to nap for 30 minutes and then go back after doing a quick load of laundry. Gran is with her now.

Shan is feeling horrible. She has fibromyalgia and really put her health on the line to be here. She left to come back and nap around 1:15 or so. She leaves in the morning.

Gran is tired and her back is aching from being in the hospital.

The mom is (huhh--big breath out) feeling frazzled to say the least. I just keep clinging to the verse in Joshua (1:9 I think) that says, "have I not commanded you do not be afraid!!" Commanded is a strong word so I refuse to fear, at least outwardly. Inwardly I am scared! I feel guilty because I made the decision to put her through the surgery. But I know she needed it and in the long run I will be glad I did it. I am also so frustrated that I keep having to explain why John is not here so the nurses will give him info. I am mad that he didn't answer this morning when we tried to let him know that we were in PICU. I am furious that he did not put the baby first and that he is not here. Especially after last night. All in all I am an emotional wreck. But (deep breath in and out)I have faith that everything will be fine.

I better end this and try to nap. Then will do laundry in case we don't get to leave tomorrow. Then back to the hosptial to sleep tonight next to the baby, listening to every noise and praying for the best.

Thanks for your prayers. Thank God for his faithfulness in watching over us and helping us through this. Thank God for Shan and Darleen, what would I have done without them?

Day 4--Out the door and back again

All Good Things must come to an end

Today is day 5, but I am going to do a day 4 update and the a seperate entry for day 5.

Day 4 started really great. Cayla had a fussy night, especially during antibiotic time. But we did get some sleep. The neurosurgeon and his team came in around 8 and said we could go home as both eyes were open. That was so great. After all the day 3 trauma, I was happy to get good news. We left the hospital around noon and went to the hotel. Shan had a flight booked for 6:55 am on the 17th so we had to stay for that.

I took a nap and Shan and Gran took Cayla up to their room. After about 3 hours I went up to check in. They said Cayla had slept, but fussed the whole time (in her sleep). Then when she woke up, she wouldn't take a bottle or any solid food. She felt slightly warm, but I wasn't too concerned. Gran and I decided we better drive to the airport to refresh our memory of how to get there. So we gave Cayla tylenol and fed her a bottle then left between 6 and 6:30. We got "lost" sort of and ended up driving around in circles for a while. We knew where we were, but that silly airport wasn't in the right place. We finally found it and started back. We made two brief stops, one for ice cream which cures everything for The MOM. At the second stop I ran in to get teething gel and some other stuff and when I came out Cayla had thrown up twice. So we went back to the room and I took her temp. An hour and a half after the tylenol, she had temp of 99.8 rectally. So I called the doctor.

He said just go to the er to have her evaluated. So Shan and I took her in the stroller. When we got there, Cayla was laughing and playing like nothing was wrong. The er doctor decided to try to give her pedialite to see how she tolerated it. She promptly spit it out and started screaming. So of course they had to stick her again. Mammy Shan stayed with her while she got her iv. I went back in and found out they had had a hard time with it. Shan said she cried when they did it. Glad I wasn't there. At that point we got Cayla pretty calm and I called a couple of people to update them. I was on the phone with Gran telling her we should be back in 45 minutes, when the bottom dropped out of our world.

Cayla made a funny sound and then stopped fussing. She wasn't screaming at that point but was crying. Shan was holding her, so she lifted the baby away from her shoulder and looked at her, then listened for a second and looked again. Then she said Cayla-- in the meantime I said did she stop breathing! Shan said yes and started to lay her down. At that point she startled and started breathing again. I yelled for the nurse and they came right away. It was only 5 to 10 seconds of no breathing but those were the longest seconds of mine and Shan's lives.

They did a chest xray and ct scan and the neurosurgeon's pa came in. We knew that we would be admitted to the hospital at that point. I left John a message on the only number I had for him and then Shan called John's mom to ask her to call him at home. I left for the xray so she had to explain everything to him.

We got to PICU at about 11:30 and they gave Cayla morphine right away. She had been crying uncontrolably for a while at that point. The nurses tried to get her settled in, but it took a while. At 1:00 Shan and Gran left. Shan had managed to change her flight!! At 1:30 Cayla got more morphine. She finally settled good to sleep about 2:30. At 3:45 the nurse turned on the lights because Cayla's IV had infiltrated. They had to pull that one and start a new one. I left her in the care of the nurses. When I got back one was holding her, one was talking to her and one was doing a toe stick. She didn't even fuss when they did that one--thank God. At about 5:15 we got Cayla to sleep and she and I slept then for awhile.

Days 4 and 5 Update

Cayla was released from the hospital yesterday (Saturday). All things were good until she spit up her food and started running a fever. Becky called the hospital and they told her to bring her back. She was put on IVs and given morphine. This morning at about 8am, she had been sleeping for about 3 hours. That is all the update I have right now. When I get more I will post it. Becky has had trouble logging on from her laptop, so that is why there aren't more updates.

Day 2 Pics (Late!)

Sorry the pictures are so late in coming. In the first pic you can see how swollen her eyes are. In the second one you can see where her stitches are (they go all the way around her head.) In the third pic you can see how much she likes her blankies. In the fourth pic she just got a bath and is happy, playing with her legs and feet. In the last pic she is happily resting on Mammy's lap.

Day 3 -We got a room

A season for everything

Today has been a day of ups and downs. I don't have time for a long post, but wanted to give a quick update. Before I start the update let me say, pray for me today.

I slept until about 3:30 this morning. Nice to sleep in the bed. When I got to the hospital around 4, Shan was rocking Cayla and giving her a bottle. Cayla had managed to open her left eye and was happy to see people. She thinks people were created for her sole entertainment and will smile at anybody if they stop to talk. I was thrilled that the swelling had gone down enough for the eye to open. She had a great night and didn't need any drugs. Amazing.

Shan and Gran left to get some sleep and I held Cayla. She got a little fussy, but not bad. Then the trouble started. The nurses had to come in for a blood test. They decided to try the left heel as it had been bleeding good. It didn't work!! I think they tried a finger next (it all ran together) and sent it off to the lab. Two hours later the lab called and said it wasn't enough. So here we went again. This time they tried a toe. It finally bled good, and the nurse double checked for clots. I got Cayla calmed down and the doctor came in. He said we could go to a room today and possibly home on Sunday. That was such good news. I started feeling like Super Mom. Strong enough to handle anything. Big mistake.

We got ready to move to a room and it has been down hill. The boy in the room next to us crashed today. The parents were very upset. I feel so stupid for being stressed over the little things when it could be so much worse.

As we came down the pedi hall the nurse said the lab called and the blood test was no good. So once again we had to go through the "sticks". Cayla spit up a lot. I think the move might have given her a little motion sickness, so she was upset anyway. The lab came in to do an intravenous draw. She tried both arms and couldn't get anything. The nurse came in and tried the top of Cayla's hand. Nothing. I just about lost it. Cayla was screaming and out of control. I decided I am not the super mom, and called in reinforcements.

Shan and Gran came in and I left. As I was leaving the lab was about to send in their "best" person to do a heel stick. I just couldn't do it anymore. So here I am blogging and giving them time. If that stick didn't work they are not doing anymore.

So the good news is--we got a room! The bad news is Cayla is a pin cushion! The good news is both eyes are opening! The bad news is she doesn't feel well.

They gave her some Tylenol and I hope that after this last heel stick she can rest.

Now I want to make a comment about parenthood. God created man and woman to be parents. His intention was to provide children with a support system. (and sometimes I think to provide parents a support system when they are old--but that is another story). He wanted parents to work as one and build each other up and support each other. Now I know sometimes that just isn't possible, but there are instances when selfishness gets in the way of parenting. Today Cayla needed her mommy and daddy to be here. That way when mommy couldn't take it, daddy could step in. Unfortunately, her dadddy thinks calling to check is being a good dad. I am just upset that I am dealing with this and he is off doing his thing. I must pray about that today.

Better get back. We are in Covenant Medical center children's hospital, room Pedi 205. One of us will be in there at all times if you would like to call.

Hopefully new pictures will be up later. Until then, here's hoping for a better afternoon.

Thanks for the prayers and the sweet comments.

PICU Day 2 upate

Update from the MOM

I am at the hotel "resting" but wanted to blog for a second. I got to come back and sleep for about two hours today while the "aunties" and Gran took shifts holding the baby. The PICU staff has been so great about letting us bend the parents and grandparents can come anytime, but everyone else has to wait rule. I told them that Shan was surrogate dad 1 and Melissa was surrogate dad 2. Yesterday everyone was confused over which one of us was the "real MOM" that gave us all a good laugh. Today the nurse asked Melissa (AKA Sissa), Shan (AKA Mammy) and I if we were sisters and we said sisters in Christ and sisters of the heart. I have been so blessed to have them with me. Melissa must work, but will be missed.

The dad didn't come. He called a lot yesterday, but I didn't hear at all today. Guess he is reading the blog along with the rest of you. He was crying yesterday and realized the seriousness of the situation. I just think he was not man enough to choose the kids over all else. Makes it hard on me to be the sole decision maker. But here again the nurses all know the situation and are super great.

Cayla is doing miraculously well. I know prayers are being heard and answered. Her eyes are still swollen shut but not as swollen. She can peek out of the left eye. Her right eye is black, but that is the only bruising. I have been saying she looks like an alien baby. Hopefully Sissa will get the pictures posted and you can see what I mean. The central line has to stay in until we go home, but is not connected to any iv's. She has run low grade temp all day. Don't know what that will mean as far as getting out of the PICU. She had to have morphine after she poked herself in the eye and again before her bath, but that was hours and hours ago. She had tylenol and that helped. Cayla is little miss attitude in the PICU. Even the nurses commented on it. She can scream down the house, but as soon as she gets what she wants she is fine. After her bath she and one of the nurses had a cooing match it was very cute.

She was fussier than expected today, but I think it is because her eyes are swollen so much.

I am doing fine, surprisingly well!! Again prayers answered. Well I better log off. I will try to post more tomorrow or will call Melissa and have her post.

Pray for John and pray for the kids. Pray for those in PICU that have uncertain futures, and for their loved ones. Pray for all those involved in Cayla's healing and remember to Praise HIM for the miraculous way everything has gone.

Love to all,

Cayla's mom

Day 2 in PICU

Cayla is in the PICU today. She is being well cared for by the nursing staff. She has several IVs coming from her neck. I'm not exactly sure what most of them are, but Becky might be able to tell you when she blogs. She has been sleeping most of the time. She gets fussy if she's hungry and fussy if she is in pain. They have been giving her morphine for the pain. Her eyes are swollen and she has stitches going all across the top of her head. I will post pictures once I get them downloaded. (And change the pics below. I think they came out better than what it seems.) We got to take turns holding her and my turn was today before I left to go back to Abilene. She slept most of the time, but I gave her a bottle and she kept it down. I think they said they were taking her off her "food" IV sometime today since she is keeping her food down and taking her off the antibiotic IV tomorrow. I will update the blog when I get more information. All in all, God is to be praised for the smooth surgery and great care she is getting. Thank you for your prayers.

Day 1 Surgery Pics

Here are photos of Cayla sleeping in the waiting room with Mammy holding her, awake in the pre-op room in her little hospital gown, one pre-op smiling really big for the camera, one post-op with Mom and baby, and another post-op sleeping in the bed.

Day 1 Surgery Update

Cayla had a pre-op appointment early this morning. We got there at about 6:15am and we waited in the surgery waiting room for about 30 minutes until they called her. She went into surgery at about 7:45am and was out of recovery by 10:30am. Both surgeons said it went very well and the main surgeon said it was the best surgery he's ever done. The other surgeon said it was "textbook." She was in and out of sleep as they wheeled her down the hallway while the entourage followed to the Children's ICU. She has been mostly sleeping all day. There will be swelling and bruising starting later today and into tomorrow and we are prepared for that, but probably only in mind. I only got to see her twice once she got in her ICU room. Becky is staying the night in the room. They gave Cayla sugar water. She did not like that, but she ate it anyway. When I get my camera back from Becky, I will post some pictures. So far, so good...

Ready for Lubbock

Day 0

Today is day 0 in our surgery adventure. Cayla and I will leave for Lubbock in about 2 hours to go to her pre-op appt. At that appt. they will tell me all about what to expect during and after surgery.

Cayla has a stuffy nose, so pray she is feeling okay. She slept well last night and so did mom. I had not slept well the night before so I was glad to get some rest.

Amanda will come up tonight to be there for surgery tomorrow, but will be back tomorrow night. Gran and Shan will be in at 3 today. Melissa is bringing Amanda. Dad is following me this morning. Grandma is coming tomorrow. Graham and Dinah are coming tonight.

I will post more tomorrow after the surgery, or tonight after the pre-op appt.

Cayla's 5 Month Pictures

Here are some of Cayla's 5-month old pictures. She really likes to look at her hands. One pic is with big brother Zane. And, I finally captured a smile on film!! (Digital, that is)

Funny Girl

Cayla's favorites

Cayla is really developing a personality. She is very funny. She will be 5 months old on Monday and Melissa will be over to take pics. I am sure there will be a few posted her next week. I think we have taken over 300 pictures of her already. Usually take about 40 at a time!!

I thought I would take a moment to share some of Cayla's quirks. She is quite vocal. She has the aaa and uuuh's down really well. Sometimes we ask her a question and it sounds like she says uh-huh (yes) or un-ah (no). Very funny. She still has a siren, but it doesn't go off too much. Judy says shee has a warning cough. Cayla will go uh,uh like a cough just before she starts to really cry. It is her way of saying look at me. She is starting to laugh out loud. It sounds like a cough sort of too. But is definitely a laugh. She smiles a lot. Zane says she smile at me, or she smile at me two times. Of course I have also seen him pushing her mouth up and then saying she smiled at him. Cayla loves to grab and hold anything in reach. We have to give her a blanket just to hold. She loves to pull big sissy's hair!!

She is getting the hang of cereal and fruit. We gave her pears to start with and she had screaming fits. Judy (the sitter) and I thought maybe it was because of the shots, so we waited a few days and then gave her applesauce. She did fine with it, actually she lapped it up. So we went back to pears and she had bad tummy pains again. So no more pears for her. I gave her peaches today and she ate them really well. Not much got pushed back out. I am weaning her this weekend so she won't be nursing anymore. I am hoping that I survive. I had hoped to nurse her one more month, but with surgery coming up I needed to get her weaned now. She already takes formula throughout the day, it will just be the nights that are hard at first.

Cayla is sure that people were invented just to talk to her. She gets mad if people don't take time to talk. She really likes it if people get right in front of her and talk directly to her. She smiles the widest when they do.

She has the funniest position. She will lay on her back and put her feet in the air, with her but almost off the ground and then lift her head up. She will do that for a long time. This is her "exercise" and is funny to watch. She is rolling really well. This morning, she rolled from her back to her tummy and then back again and rolled like that across the floor. It was fun to watch. She pushes with her feet and scoots around on her back a lot. Once she can do that on her tummy we are in trouble. She doesn't sit up very well though. Cayla tends to drop her head to her chest and tilt to the left. We are working on that and she doesn't like it.

I am praying the surgery doesn't cause any set backs. If it does we will contact our local ECI office and set up some therapy. I have a friend whose daughter receives help from them and she really likes them. She said they are very helpful and make her feel at ease. I was relieved to hear that.

That is all for now. Hopefully there will be pics soon.