Growing Big!

Last Thursday we had to run to the doctors office. They wanted to see her about her spitting up. She was excessively spitting up even with her reflux medicine. They can't up her doseage until she hits 22lbs and she is 16 lbs 13 oz. She has a long time to wait and hopefully when she does hit that weight she has already outgrown the reflux. For now they want us to add 1tsp of rice cereal to each bottle for every 2 oz. She was doing great and hadn't spit up since the appointment until last night. She only had a few spit ups so hopefully it was just because she was so worked up trying to go to bed on her own. We spent the weekend with the family at a cabin on Lake Anna and we all slept in the same bedroom so it threw her off a little when she had to sleep in her own room last night.
Oh....she crawls!!!! She was hanging out on the floor with Aunt Jessica and cousin Sylvia when she spotted Sylvia's bottle next to them and off she went. She must have been pretty hungry to be that determined to get to it. At 6 months and 1 week she is mobile! She has done nothing but scoot around since. I have to do a major overhaul of our house and Autumn proof it. The dog is not going to be happy when he realizes she can go after him now!
We are super busy trying to get ready for the holiday's. We got our Christmas tree last night and put it up. Zack has soccer tonight so I am sure we will be decorating it tomorrow night. We are so excited for her first Christmas!

6 month check up

We went on Friday and had her 6 month check up along with her synagis injection. She ended up having 5 shots and one oral vaccine. She had the same reaction to her flu shot that I did. It was swollen at the injection spot and red. She was a little fussy this weekend but over all I expected worse. She weighs 16lbs, and is 27 1/2" tall now.
She had a lot of fun on Sunday having pictures done. Her personality grows everyday. She talked and talked on Sunday evening.
We were told from her pediatrician to go ahead with the Ferber Method over Thanksgiving break (cry it out method) Sounds like so much fun, but if it works then she should sleep through the night. I can't even imagine what that is like. She has been drinking anywhere from 3-5 bottles a night but she doesnt drink much during the day. The doctor said she will very soon be either crawling or walking depending on what she wants to do. She now gets on all fours and starts to rock back and forth. She will crawl but only using her head to move her front not her arms. We have to go through and baby proof the house because it is going to be soon that she is mobile. We have also started her on a sippy cup and was told to introduce water into her diet. Stay away from juices because it is just extra sugar right now that she doesn't need and is already getting from the fruit baby food. She likes to use her sippy cup to teeth on. She sits there and just chomps on it. I am nervous because she has started to drool again and chews everything. I am hoping it is just from the bottom two teeth growing a little and that we aren't starting the top ones already. She needs a little bit of a break. Hope everyone has a great holiday. Hopefully we wont have to go back to the doctors until December's synagis and second dose of the flu vaccine. Keeping our fingers crossed.

First lesson in video games!

Pictures

Back to the doctor's

Autumn and I had to venture back to the doctors yesterday. She weighed 15lbs 4 oz this time. She has her first cold. They wanted to check her lungs to make sure she wasn't at risk for anything. They said they sound great right now. We were told to watch for any fever or changes and to notify them immediately. She hasn't been very happy the last few days. She has the worst cry right now. It will break your heart. She is so hoarse from her sore throat that she sounds the same way she did in UVA when she cried all night long the first night when they wouldn't let her eat.
We just got a call from the prescription people who fill her synagis order. They are checking with her doctor today to see what her weight is and how much they need to send then putting it threw insurance and calling me back with the co-payment amount. Hopefully since we had 50mg left over they should only need to send another 100mg. I had the nurse look yesterday and we guessed her at being around 16lbs on the 21st. But that is only a few weeks away and I don't know if she will actually gain that much.

It's back.....

Autumn ended up getting Thrush again. She went to the doctor yesterday to confirm it. It doesn't look like it normally looks. They said we caught it pretty early and it is not that bad of a case of it. She weighs 15lbs 2oz at 5 months old. She gets bigger everyday. She had been sleeping really fitfully. I thought that the two bottom teeth coming in were to blame. Turns out it may have been the thrush. She started meds yesterday and had the best night in a while. We did three three hour "naps". She took better naps today at the sitter's than she had been and is already asleep tonight. She needs to catch up on sleep though. She has bags under her eyes and they are always red rimmed. The doctor said she is most likely sleep deprived she can tell by her eyes. That makes me feel so bad but no matter what we do she just won't stay asleep. Even with me laying next to her she wakes up almost hourly to toss and fuss then will settle back in. My goal this weekend is to keep her sleeping until she is refreshed(and me too!).

First Halloween

Even though we aren't going to go trick or treating we still dressed her up.

Hard to watch

Oh my goodness I didn't, nor did Autumn, like the injection. She had one in each leg and both cries were the worst things I have ever heard. It was a turn your head and cringe until it was done. I felt so bad for her. I immediately scooped her up and she just continued crying. It was the absolute worst thing. Once we got out and into the car we had a few fits on the way home but other than that had settled down. Did a little talking in between the fussing. Once home she was completely different little girl. She stayed up until about 8:15 completely laughing and playing then it went bad. She did fall asleep easily, and we will see how long it lasts. I stole the time to update everyone. She only had weight done today.........14 lbs 12 oz! She has gained a whole pound in two weeks. That is great.
She has just been doing so well lately it lets you forget all the stuff she has gone through. The way her scar is healing is very impressive. The surgeons at UVA really did quite a job. It will barely be seen when she gets older.
She only needed part of the dosage that was sent of the synagis so next order they won't need to send as much. Apparently as long as the vial isn't punctured it can be kept in the refridgerator for up to a certain amount of time. Her next dose is on November 21st and I already don't look forward to it. It may have to be Daddy's turn that day!

Many Thanks

We did not get to go to her doctor's appointment yesterday. They called to let us know that the injection did not arrive as it should have. They have already called this morning to let me know it has arrived. We have a 4pm appt today.

On another note we would like to say a special Thank you to all of the Fauquier county employees that participated in the Working together program for Autumn. We received the letter yesterday and I was sincerely touched and so very appreciative. I will be sending a Thank you letter to Melissa Dargis' attention in the next few days. Thanks again! We really appreciate everything that everyone did to put that together for us. Also a special Thanks to Deborah Dotson for getting us set up on the program to begin with, along with her daughter and Autumn's Aunt, Briana Long. Thanks to all!

Ready, Set.....More Shots!

I heard from the company that makes the Synagis injections today. They finally got everything straightened out. The shot was supposed to be delivered to her doctor's office today for her Monday afternoon appointment. They were calling to tell me that for some reason the Anthem denied the claim at first then approved it as they should have since they sent me approval letters months ago. They were confirming that they will have the shot there by Monday at 10:30. We found out that our Co-pay is 20% and which is currently $200 per shot. The dosage is done by weight and so is the cost. The more she weighs the more it goes up. She will need one injection once a month until March. We did find out that one of our sitter's sons are prone to getting RSV so we are glad we chose to get her the shots.
Other than that she has been enjoying her fruits and cereal. She is still getting the hang of the whole spoon thing but all in all I am impressed. She has been sleeping better at night, unless she has gas issues, which has been the last two nights. She goes to sleep around 7-8 and sleeps three hours then does two's still. But hey, we have reached a steady three hours the first time down so it is getting better. She is 19 weeks now and growing fast. I am curious to see how much she weighs on monday now that she has been eating solids!
Oh yeah she laughs now. So cute. Starts giggling and squealing when she sees someone she recognizes. Getting bigger everyday! I will update everyone after Monday's appointment. Have a great weekend!

Yuuummmmyyyy

MMM.......Applesauce!

Hyper Active

Zack took Autumn to the doctors yesterday. She has not been sleeping at all the last few nights so we thought we may want to make sure there isn't an underlying problem keeping her up. She was also due for her 4 month shots so off they went. The doctor she saw said she is a hyper active baby that is why she doesn't sleep. That she is the most active 4 month old he has seen in a long time. She thinks she needs to be up doing something. He said to get her out of my bed ASAP. That when she senses me there or sees me she wants to wake up and be active again. Last night she slept in her crib for a few hours then in the co-sleeper in my room for a few hours then I was so tired from getting up to go give her a pacifier back that I finally said oh well two hours in my bed won't hurt anything. She has also been given permission to start on fruit baby food and cereal. We had been giving her cereal by bottle (I know everyone says something different about this, it was a tough decision) We are switching her to by spoon over the weekend. Normally when she gets it at night she is too tired to care about the spoon. She weighed in at 13lbs 12 oz! In the 75th percentile for weight and is 26" tall. She is in the 95th percentile for height. That I am sure will change. Either way she is growing perfectly and caught up on everything. We are so very thankful of the way everything has turned out so far. I thank god every day for taking care of her during her hard times and seeing her through it. The only pending issue is that for her Synagis vaccine shot she is supposed to get once a month from Oct to May was denied and she didn't get it. She apparently was approved through my health insurance and denied from the company that makes it. It is so expensive that you can not get it unless approved. They are pushing more papers to get her approved. If she does not qualify having open heart surgery so young I feel really bad for the babies/kids who do qualify. They must be really bad off. Hopefully they get it settled quick since RSV season is here!

Playing today

This is a little fuzzy because it was taken with a cell phone. The sitter just sent it to me.

Rollin'

We hit a milestone last night! Autumn rolled over last night and pushed her head and chest up off the crib mattress. She was in her own crib and supposed to be going to sleep. We were watching the monitor because she was migrating all over the place. All of a sudden she started to roll onto her stomach. She couldn't figure out how to get her arm out from under her. Once she did that was the end. We flipped her back over onto her back and she continually rolled onto her stomach everytime.She had such a workout she spit up everywhere when she was done.
She kept flipping onto her stomach last night while sleeping to and I had to move her back to her side. She would get a little upset with me but nothing the pacifier couldn't handle for me. She still is doing every two hours. Not sure when she will break that habit. Hopefully soon. We took new pictures recently I just need to find the time to upload so everyone can see how she looks just like daddy!

We are here...

I know right, it has been over a week and no update about a doctor's appointment. Can you believe that we didn't have to go last week. She has a slight rash and has had it for a week or more now but we are thinking it is heat rash and no reason to go to the doctor over it. She is doing so great right now. Her medicine seems to be working well because she has been in a great mood. We changed her over to medium flow nipples to see if she will start to eat more less times a day. We started her on these sunday night and yesterday when I got home Great Grandma Long stopped by on her way through town and fed Autumn a bottle and she drank 6 oz! She has been sleeping during the day for the sitter which is awesome. Over all she is just growing up fast. She loves to listen to people talk to her so she can laugh at them. She has giggled a few times but nothing consistant yet. I am lost not knowing what she weighs right now. Her 4 month check up and first Synagis shots are coming up so I will just have to wait til then.

Didn't even make it one week this time!

Since last friday she still hasn't been sleeping well and started to arch her back crying again. We were almost out of her acid reflux medicine so I called and set an appt and we went yesterday. She weighs 12lbs 6 oz and is other wise doing extremely great. I was told that Zantac is one of the few medicines that you can become immune to and it can just stop working for you. Dr. Wolfe switched us to Prevacid instead. She only has to get this once a day compared to the twice a day for the Zantac. It must be a different tier drug because it runs $30 for 30 days supply after the insurance pays $40 and Dr. Wolfe told me that they make them submit a paper stating that she has already been on Zantac and it did not work for her. I was told that the reason she doesn't sleep more than two hours at a time most of the time is because she is waking up in pain from her belly and the only thing she knows to soothe herself is the bottle so she will cry for it and eat everytime to help herself feel better. Which makes sense when we were waking up every hour. The other night we actually did four hours, then three hours, and then three hours again. I woke up feeling like we had accomplished something then last night we were three then two then two then two. It must have just been a night where her stomach didn't hurt as much. Autumn decided that we needed to wake up really early this morning and was up talking to me by quarter till five. She sat in the kitchen in the bumbo seat while I made coffee (something I normally don't do at home but wait till work)lunches and steamed her bottles. She got so excited watching me she started talking so loudly she was yelling at me. She woke Zack up who came in around 6 to play for a few minutes. Hopefully we will get a good report from the sitter today. Yesterday she slept for her first two hour nap for them. Only because when she wakes up she normally only drinks about a half an ounce and then doesn't care. So I stopped giving her anything when she first wakes up. She gets dropped off around 7:15 and the sitter has her wait until 8am to eat her first bottle. Since I started doing this on Monday she has been drinking the full 4oz her first bottle and actually napping for them, at least in the morning.

Once a week drs.

This was supposed to be the first week that we did not have an appointment that we had to go to. Yesterday that was not true. We have conjuctivitis again/clogged tear duct, and a slight cold. She has been eating funny and sleeping funny. Well not sleeping is more along the right lines. Weds. night we woke up every hour and was up for about 20-30 minutes, she actually ate every time also. 2-3 oz each time she woke up. We mentioned to the pediatrician (hers wasn't available) that we were considering starting her on cereal to help her stay full and sleep but we got a roundabout answer on how really it is only to teach her how to eat properly not really to help her nutritiously. I will have to wait and see how it goes sleeping this weekend. Last night we slept the two hours but she woke up sometimes an hour later wanting her pacifier and spitting it out 2-3 times so she slept I didn't. I am not sure how I can function with less sleep than I am already getting. I about hit our BMW into the side of the garage door and our fence yesterday morning because I was so out of it when I was leaving, I was so tired I couldn't figure out how to get out of the garage without hitting something. I finally pulled all the way back in and tried again, which is what I should have done in the first place. This weekend our mission is to catch up on sleep and get back to our routine. I think we were thrown off a little this past weekend because we did a lot off out of the normal visiting people. Oh, on a good note......we now weigh 12 lbs 2 ounces. We gained 7 oz in the last week! We also found out that the hiccups and sneezing is a sign of the acid reflux. I thought that was interesting. I had been wondering why she gets the hiccups like 7 times a day, and she sneezes a lot, like her daddy, I would have never guessed the sneezing was part of the reflux. We were told to keep an eye on her and let them know if the reflux seems to be getting stronger again. As she gains weight they will have to up her dose.

Cardio Update

Doctor said if he called in some drs. and they didn't see her scar they would have no idea that she had a heart repair done. She weighs 11.11 so she is gaining about 5 oz a week. He was perfectly content with that.He said her Echo looked fantastic and that she has a perfect repair! We now only have to go once every 6 months until she is two years old and then once a year until she is full grown. And of course her normal pediatrician follow ups. When he walked in he said "oh my what a porker now." He was so impressed that all the wrinkles are out of her thighs and that she has thighs now. Overall I just left there really pleased and happy. He said the only reason we will be doing the once every 6 is to check the scar tissue to make sure it doesn't close the veins. He said it happens in 1 of every 20 kids.I told him that she has been doing so well that this is the first doctors appointment I got to go to and not have any questions or concerns. Autumn just sat there talking away to the nurses and the doctor. They all wanted to take her home because she was so entertaining and just being so good. Our appt was at 2:30 and we didn't leave there until 5:15 pm. They are so slow it is a little annoying to have an infant there for that long so I was glad she did so well. We didn't get home until 6:30pm and She stayed up for about an hour whinning and drinking then she passed out for....wait for it......5.5 hours! A new record. I of course only got 3.5 of those because I got sucked into watching Hancock that Zack had downloaded and burned to disc for me. Then of course since she slept so well we were up at 5:30 and playing. Mommy was so distracted playing with her that even getting up that early she somehow still left late and was late to work by 8 minutes. At least that was the first time since having her. Pretty good. 1 month of dropping off at daycare and only late to work once. Plus it was pouring down rain. Thats it...I completely blame the rain. Not that we were playing and talking to Daddy.

Big Girl!

Autumn has been through so much so quickly that she thinks she is a big girl already. You put her in a boppy or the car seat and she tries to sit up. She will lean forward and lift her head and legs like she can just get up and go already. She is such a big girl she sits in a high chair at the sitters already and absolutely loves it!

Snoozing

I just received this picture from Cindy, Autumn's baby sitter. Look how cute my little angel is!

Never get a break

I sware this poor baby will never go one week with out a visit to the Pediatrician's office or being on medicine for that matter. We were put on Zantac last Friday which has helped a lot. She is now burping when fed and passing gas a lot easier. She doesn't seem to be as fussy either unless she is tired. But noticed the other day her tongue was white again so I waited a day and sure enough yesterday morning it was completely spotted white and her cheeks have huge patches of white. Thrush has hit again. She weighed in yesterday at 11lbs 6 oz! We are off the cal diet and gaining on her own. I am so excited! It just shows me in another way that she has recovered and is doing things for herself. Pretty much she is normal now. I love it. Well other than the monthly bout of thrush. I need to research reasons for it to constantly come back once a month almost to the day. And to see if there is any preventative measures we can take. Next week is the big appointment that I have been waiting for. She will most likely have an echo done to check the status of her heart and how it is healing. Oh I can't wait! I love hearing that she is recovering, it helps to ease the mind.

Drs. yesterday

Shots suck! She had four, two in each leg and then one oral vacination. She loved the oral one. She latched on and started sucking and wouldn't give it back when it was gone. She is now 11lbs 1oz! Just since friday. That is amazing. I was complaining about her being so constipated but when we give her juice it makes her sooo gassy so her Dr went ahead and took her off the 24 cal diet and said that if she is gaining steadily by the time we go to the cardio. on the 27th then she won't have to go back on it. Also to watch for the next few days and see if her bm's get better if not call by friday and she will figure something else out. She is now a little over 23" and in the 90th percentile for height, already in the 75th for weight and for her noggin. Pretty impressive! She doesn't have to go back until 4 months old unless she doesn't gain weight well then they want her back in a month. She is now on the sensitive formula and seems to be doing a little better. Hopefully we are getting closer to getting her belly normal. She has started to sleep 3 hours and 3.5 hours randomly in the night. She will start off with 3 then end up sleeping 2 hours right before we get up. She definitely is a morning baby. She wakes up and starts to eat then realizes I am staring at her and bust out in big goofy grins and spills the formula right back out her cheeks. After that she is not interested in eating she would rather talk to me and tell me about her dreams. If I can figure out how to do it with my digital camera I will take a short video and try to upload it this weekend.
Hope everyone who reads this is doing well. Love you all!

Gaining quickly!

Autumn went to the doctors on Friday. I had called to ask what else we could do about her being so gassy and they of course wanted to see her since she had just had surgery. They told me to go ahead and try the sensitivity formula we make, she was already on the gentle, and if that doesn't seem to help we can try the lactose free one but definitely don't use Soy with her because the constipation would be so much worse. We tried to take her off the prune juice but that was not helpful at all. I lowered the amount that I gave her yesterday and she seemed to do better. She spits up/throws up a little more on this formula but it still isn't out of the normal I have just gotten used to her not doing it at all. She weighs in at 10lbs 8oz now. And she has a slight hernia in her belly button, they told us to just watch it and make sure that the belly button is able to be pushed back in when she is not straining. Oh and she also has her first ailment from daycare. She has eye conjunctivitis, which I am not so sure about. She has a goopy eye but it is not red at all. They gave us eye drops to use. I am wondering if the doctor was just trying to be safe. They wouldn't do her two month shots because we had to go to another office of theirs because her office was booked full. We will still have to go on Weds to have her check up. I am going to follow up with her actual doctor then about the formula changing. I am pretty sure we won't be able to fix anything until she gets off this 24cal. diet.

Daycare

She survived her first day of daycare. They said that she did really well. She slept small naps and played. They went out and bought a new bassinet for her and a new bouncer. She was extremely tired when I picked her up yesterday and fell asleep at home around 5 and slept 2 hour increments until about 5:30 this morning. Which is not my schedule. I tried to talk her into going back to sleep until we had to leave at 7:15, I ran and jumped in the shower and Daddy got her to fall asleep in the swing so he could go back to sleep too. I was able to nap for about 45 minutes after getting all our crap together so it was better than nothing. I topped out this morning with roughly 5 and half hours sleep. This is definitely going to take some getting used to. Going to talk to the doctor about her severe gas issues and possibly starting her on cereal in the next two weeks to see if we can get her to sleep longer stretches. Even the sitter noticed her stomach was really tight and gurgling all day. The gas drops help but not much and she is already on our gentle version of formula. I may have to see about getting her on the sensitive version. Her next check up is on the 13th so I guess it can all wait until then. I haven't gotten a picture of her scar to upload yet but I have just thrown on some all of the girls together. Enjoy!

Like it never happened

We have had a great last few days. She has been eating well for me and sleeping well. Not sleeping for long periods of time but sleep is sleep! We went to meet Sylvia on Friday and she was soooo tiny compared to Autumn. Sylvia sleeps a lot and must have had a little chat with Autumn while no one was watching. Autumn slept from Winchester to Warrenton then when we jumped out of mom's car and into mine she woke up and screamed the entire 45 minutes to Orange. When we got home she slugged down a bottle and passed out for 5 hours! And it hasn't happened again since then so she must have forgotten what Sylvia and her disgussed. Uncle Stephen weighed her on their baby scale and it said she is 10lb 2 oz. We are gaining fast. ALL of her steri strips are now off and her scar looks great (I will upload pictures tonight) She is spending today and tomorrow with Grandma L and will start daycare on Wed for a half day. Schedule here we come! At least I hope this will help to get her on one. Her next appointment isn't until Aug. 13th to get her two month shots, yeah I know she is two months now but her doctor wasn't available until then.

First Follow up

Yesterday we went back to the cardiologist at UVA for her first check up. Our appointment was at 12:30 and we finally left at 2:50. What a long wait! I will definitely be prepared next time to sit there for a while. She had an EKG done and they said it looked great. They did not do an Echo nor did they check her oxygen saturation levels as I wished they would. Dr. Hamill said she looks great and she is healing fine so he I guess didn't see the point in it. Her next check up isn't until Aug. 27th. She weighed in at 9lbs 12 oz. I asked what an average baby her age should weigh and he said 12-13lbs so we are just a little behind. They dropped her Lasix dose down to once today and once tomorrow then no more. Yeah! Then she will only be on thrush medicine for a few more days then back to normal. She had her first prune juice bottle yesterday. She is so messed up from the lasix that her belly doesn't know what to do. So we will be glad to get off of it finally. She for some reason is back to sleeping only 2 hours at a time at night and really has no interest in sleeping during the day unless you hold her and don't move at all for two hours even then you are lucky if she stays asleep for an hour maybe three to four times thru the entire day. I am almost excited for her to start daycare so we can try to do a schedule with her that we can both be on, not just whatever she wants.

Thursday 7/24

Well our first night home was rough but last night she decided that she doesn't mind sleeping. She hit the 5 hour mark and I had to wake her up to get her to eat and then it was 4oz. She may be getting the hang of this being healthy thing. The only thing that seems to be bothering her is gas, at least today. We haven't even had any tylenol today. It is amazing how quickly she recovered. We are unable to lift her under her arms for 6-8 weeks. That is a little hard to get used to. She is on lasix two times a day still and now on thrush medicine. Yeah thrush again! Poor thing just can't get a break. She does weigh 9lbs 3 oz as of yesterday's doctor appointment so we are getting there slowly.

Monday

Another rough night last night. She was given pain medication later than normal last night when Grandpa and Grandma Royal we leaving around 8:30 then she woke up around 11:30 screaming so the night nurse gave her some more pain meds. Once she went back to sleep her heart rate dropped to 87 and set off her alarms and scared me awake. They came in and hooked her up to an EKG and by that time her rate was back up because she was awake. The next time she fell asleep it did it again. I was so nervous I didn't want to go to sleep, the pediatrician on last night had me a little freaked out but the cardiologist came in this morning and spoke to me and was not concerned in any way about the drop. He must have come to the same conclusion we did. She was over medicated and just in a deeeeeepppp sleep. They have now taken her off of the oxycodone completely (hmmm wonder what made them come to that decision) she is now only on the tylenol as needed.
She gained weight though, she now weighs 4kg (8 lbs 13oz). We are working with a speech pathologist to get her on a better (any) feeding schedule. She eats every two hours and no set amount. By the time we leave here we hopefully will be a little more structured so when she starts daycare she won't be in for such a shock!
She also had an Echo done this afternoon and the woman doing it said the photos looked great, but the cardiologist would review. I don't expect to hear from him since we rarely see him.
We may or may not be told approx discharge date soon. They said they would do the last echo before discharge so since they did it today I am assuming discharge is coming!

Sunday

Well we were in such a good mood yesterday that we stayed up from about 4pm until 2am with about an hour nap total. Of course as soon as she falls asleep this morning they come in and wake her up to make her eat. She wasn't interested in eating before since she was soooo tired. They also took her weight yesterday when we got onto this floor and she weighed 8lbs 10 oz (3.94k) and then around 3am when they weighed her again since she wasn't wanting to eat she weighed 8lbs 6oz (3.81k) They are still giving her lasiks so that explains some of the loss but still to only be 2 oz bigger than what she weighed when she was born.
The Cardiologist will be discussing her lack of weight gain today and what they plan on doing. It sounds to me that we will be here at least monday maybe tuesday. They have already increased her calorie intake on her formula to try to help. We shall see.
I have to wait to post pictures, this laptop is not happy with my memory disk and won't work with me.

Afternoon Update

We sucessfully got a private room on the floor. We are in a great mood this afternoon and smiling. We are in room 7174a. Pictures to come later.

7/19/2008

We have not been to see Autumn yet this morning, we are waiting for her to get a bed so that we are actually able to spend time with her and not in the way of the PICU nurse. There are two babies including her in the room she is in and we feel like we aren't supposed to be in there for more than five minutes at a time. You can imagine our anxiety to hold her again.
I just got off the phone with her day nurse Rebecca who informed me that they have taken out the "B" line (pacing wire leading from wrist) and she is doing fine. She is down to two lines still in. The normal IV for fluids, and her central line (leading from the neck directly to the heart). She will have the central line pulled right before she goes onto the floor. She did mention that there are 7 kids all awaiting a bed on the other side so hopefully we will end up with a private one. She will call us as soon as they transfer her. She also mentioned that they have already set up discharge orders for her. Rebecca said that they may or may not intend on discharging her tomorrow. I was hoping they would monitor her at least one more day but we will see how she progresses. I will be terrified to bring her home now. I thought I was nervous after she was first born!

7/18/2008

Autumn came off oxygen this morning and was able to hold her own saturation levels. This evening they took out her "A" line (pacing wire) and when there were no complications with that they then removed her chest tube. They also decided to take out her catheter. So she is spending the night in PICU again but only because there is no sense moving her this evening. They will move her to the floor (pediatrics unit) tomorrow morning. Now, knowing what we have learned over the last week of being on the hospitals schedule that will probably mean tomorrow early afternoon. But at least we will be able to stay with her, if she ends up getting a private room. OH please let us have a private room!