Recovering...

Well..we survived another surgery. Alyssa had her surgery on Christmas Eve and has done really well pulling through. They sent her to the pediatric unit instead of recovery #2 so they could watch her more closely being a cardiac patient. She was a trooper. We are amazed by the difference. I'll post pictures when I get home. She still has packaging in her nose and that is annoying to her plus all the dry blood.

We are very blessed to have the surgeon that we had and I know this has been a good move. Thanks for all your prayers and support!!!! Hopefully it will be awhile until our next surgery. Have a Happy New Year!!!

"Mom, is Loren going to have nose surgery too?"

Yesterday, Alyssa says to me "Mom, is Loren going to have nose surgery too?" "Her nose is a little pointy", I think the doctors can go in and sharpen her nose down". Too funny!

We are having our "Christmas" on Wednesday since Alyssa's surgery is on Thursday. We have been talking with her and so far she seems to not be fighting it too much. They are giving me special permission to take her back in the ER until she falls asleep. So we have had a talk about if she wanted me to do that and that if I did, she still has to get up on the table and breathe in the mask until she falls asleep. Just because I am there doesn't mean you can get out of it basically. So that went really well and I think that is how we are going to do it. The hardest part of these surgeries is me holding it together. The children que into a lot of how the parents are acting. If the parents are crying and blubbering, the children will react the same. So we really try to act like it is not a big deal and just distract her with crafts beforehand. The doctors have mentioned that sometimes they would like to sedate the parents as well. : ) So we'll see how well I do.

Alyssa's ears are healing well. She told me that things were too loud when she got home. So that is good news.

Emma will be having surgery on her ears - she has Keritan Pearls. Probably a genetic thing - we think that is what Mike might have had as a baby. But they have never proven this one way or another. So we are having all our kids checked out. Emma's surgery will probably be in February.

It has been hard for us to enjoy this season. We are feeling the stress of these surgeries and the recovery period. I hope we can breathe a little after Alyssa's surgery but three days after we get back, we have Emma and Olivia's surgeries. I hope that we can take the time to relax a little but it also just might be this year is crazy and next year won't be as much.

I think Emma has labored breathing due to the cold weather. It really does a number on her lungs. We are just continuing with the breathing treatments in hope that she is not losing weight. The formula and rice cereal seems to be helping. That is really good. Easter Seals will come out and evaluate her in January. I really hope she is walking by then. She has taken 4 steps but isn't really trying for more. She knows that she can crawl much easier.

We are very grateful to friends and family that have supported us throughout this journey. The best gift for us this Christmas is just to have all our children alive and well and with us. We couldn't be more grateful for the love that we have for them.

P.S. Olivia likes to get on the table and walk on it while I'm out of the room. The other picture shows her cute self just being cute. Enjoy!

Alyssa's surgery went well for her ear tubes. She did not want to do it...she told me over and over but didn't fight too much. Grandma Miklik was there so that helped a lot. She had some crafts to do while we were waiting. That helped also. After her surgery, she was in pain but once the tylenol kicked in and the puple popsicle, she was much better. We were getting ready to leave and I asked her if I could stay and sleep in the bed for a couple of days. Alyssa turned to me and said very matter of fact, "This is not a hotel". We got a good chuckle out of that.

While she was in surgery, Mike was at the specialist with Emma for her ears. She has what is called Keritin Pearls. I'm sure I didn't spell that right. She will need surgery to remove them. She will also need a CTscan to see if they go into the ear drum and see if there are some on the "mast"????? This is all second hand from Mike. So I think that won't be until February.

So Alyssa has her surgery next week for her facial reconstruction. I'm not ready for that now but I should be by then. Please keep her in your prayers.

What a week! Full of updates...

After spending 5 hours at the hospital Monday, we found out that Emma's kidneys are improving enough that they don't want to see us for another year. Usually it is 6 months. Her kidneys are growing. She was also very positive in saying that she did not think that Emma would need growth hormones but that she would grow in her own time and at her own rate. She said most patients like Emma will just take off when they are ready. Very encouraging!

We also had her 18 month checkup and she has gained a pound since November 19th. Looks like we need to continue the formula and rice cereal. She is at 15 lb. 9 oz. Olivia is at 23 lbs.

Emma took 4 steps a week ago with the visiting nurse. I think she will be walking very soon. Won't that be a day!!!!

Alyssa had her plastic surgeon appointment. We are very encouraged to see what he will be doing and seeing the before and after pictures. I know this will be a hard surgery to get through but I know Alyssa will benefit in the long run. We will be needing to do crafts over Christmas to keep her from rough play. : )

Alyssa's ear surgery is Monday, Dec. 14th. He will be putting in another set of ear tubes. This should be minor and she will hopefully be back at school the next day. There is a Christmas party she really wants to go to. So let's keep our fingers crossed.

Emma had some findings in her ear exam and we are now going to be going to a specialist for her Monday morning. We will be seeing if she needs surgery. I don't know much about what is wrong but I will inform you as soon as I understand what the problem is. They also found fluid on Emma's ears so I'm not sure if they are considering ear tubes also...we'll see...

We will also be checking Loren's hearing. Why not? Maybe we should just have myself and Olivia tested too that way the whole family can go to the ENT. : ) There just gets to a point where you have to joke, otherwise you will cry. Yesterday, when we found out that Emma had ear problems too, I felt like I was trying to eat what was on my plate and someone was just loading on more food. Here I am trying to resolve the issues we are dealing with and here is someone else just loading more on. So Mike will be taking Emma on Monday while I am with Alyssa during surgery.

I heard great news today of some old school friends of mine that are pregnant with twin girls...they also had TTTS and just had surgery and their babies survived when there was no chance just like ours. Praise God!!!

Great day...

What a day!!!!

We had a home visit with the nurse. Last week, Emma weighed 14 lb. 10 oz. This time she weighed 15 lb. 6 oz. Awesome improvement!!!! The formula must be helping. Anyone that has extra Enfamil coupons, please send them my way.
So then she is just playing around and she is standing by the trunk. She turns and starts walking to the nurse...she took 4 steps. I could not believe my eyes. I think my jaw hit the floor. : ) Then she crawled over by the door and stood on the rug for about 10 seconds all by herself not holding onto anything. Little showoff!!!!! I've never seen her do any of that. I'm so proud of her. She really is a fighter and she proves it everyday. I love good days and steps forward. Keep them coming Emma!!

Getting excited...

I'm getting excited to see family - Thanksgiving and Christmas. I'm really having fun this year finding presents for people. : ) We have some surgeries coming up. Alyssa's ear surgery is now scheduled for December 21st at 3:30 p.m. Her reconstructive plastic surgery is still scheduled for Christmas Eve. I'm trying to think of a good present to give her in the hospital. Let me know if you think of any good ideas.
Emma and Olivia's surgery for their eyes is January 7th.

We started Emma on two breathing treatments and we are hoping this will help her lungs. She has lost weight...we are now at 14 lb. 10 oz. So we are starting her back on formula. Frustrating but we will do what it takes. She is growing length wise so that is great news!!!

Olivia just woke up from her nap so I must get going.
Love you all and thanks for being with us along this journey. We have appreciated all of you and your prayers and support. We couldn't have done this without you.
Love,
Bethany

Surgery, surgery and more surgeries...

We had Alyssa's cleft clinic last week and found that she has fluid behind her ears and is not hearing well because of it. She will need her 5th set of tubes put in and we have it scheduled for December 14th as of right now. She will also be having some reconstructive plastic surgery on Christmas Eve. This will take 3 1/2 hours and she will have to be very careful for 3 weeks not to bump her nose and lip.

Today I took the twins to the eye doctor. They both need surgery and that is scheduled for January 7th. They have blocked tear ducts. So we have 4 surgeries within the next two months.

Ending with that, it has been a long day and I'm tired.
Good night to all!
Bethany

Museum

Last weekend we had a bit of a breather. I think that is really what we needed. We took the twins to my parents and Mike and I took the older two to the Children's Museum in Indy. It was really great and I think the girls just soaked up our attention. Then we stayed in Kokomo for the weekend for Tom's birthday party.

I guess sometimes I just need to break down to feel better. Letting all those emotions and stress out probably helped.

A few updates...Alyssa's eye is not improving so she will be fitted for a contact next week. She will wear this along with the patch. So we'll see. We are down to our last options. Emma is up to 14 lb. 13 oz. I'll be very glad when she breaks 15 lb. They will be 1 and a half years old on Nov. 22nd. Olivia is 22 lb. 13 oz. So they are exactly 8 lbs. apart. I hope that Emma starts walking soon. They will be back in a short while to evaluate her again and we might have to start up therapy. We'll see...

Enjoy the pictures!!

Unload..

So I'm just going to unload. I had a biggest loser moment...not that I lost a lot a weight (I wish). But every week everyone cries on the biggest loser. Today as I was running I just felt all these emotions surface. How did I get this way? So I was thinking about why and was just overwhelmed. It's like all this stress has been built up and it all just came tumbling down. I realized that I eat a lot more and worse when I'm stressed about my kids health. Which only leads me into more of a downward spiral. Not getting breaks that fill my tank so that I can give to my children and husband what they need is not helping. So part of what has been stressful lately is I think Emma is losing weight. We ran out of formula and the dr. said it was o.k. to do whole milk. Well, she is not drinking as much and I've tried to mix it and put it in her old bottle but it is not mixing well. So I went out and bought another can of formula and she is taking it. But we can't do formula forever. I just don't know. The H1N1 scare is now keeping us out of the nursery at church and I can't put the in daycare at the gym so I can have some time to myself. Frustrating!!! This whole insurance thing...with OSF not being in our network as of 6 months from now.....we will have to switch all our drs. Alyssa's eye appointment is tomorrow and I know it's going to be worse. Since school has started, she hasn't been able to wear her patch even 1/8 of the time. All this responsibility is so overwhelming. Then I see my cousins with their 8 year old who have had tons of surgeries his whole life. And I think how do these people have the strength to keep going? How can I have the strength to keep going? Some days I think someone else could probably do a better job. And then a lady from my neighborhood just came to my door and asked if we would put our Christmas lights up early and let others know too. Their neighbor's boy is dying from leukemia and only has til Christmas if he can make it that far. So they are seeing if everyone can put up their lights so he can see them every day. So I guess that answers my question. With tears streaming down my face... I would keep stressing every day if it meant that I could have my girls with me one more day.

I think "Crazy" is the only way I can describe things right now. Emma and Olivia are getting into EVERYTHING!!!!!! So if I accomplish anything during the day, it is a miracle. It seems like we are going through a phase right now where they are all very much needing attention. For example, if I'm sitting down where the twins can sit on my lap, they will sit and then they will go about their business and venture off...however, if I stand up, they will cry. So even though I'm not holding them or for that matter, doing anything, I have to be sitting down just in case they want to come back over and sit on me. Olivia also does the thing right before she gets to me where she'll turn around and then walk backwards until she gets to my lap and then sit down. I seriously would love to get a back-up beeper for her.

Emma is much quieter but still demanding. She soaks her shirt daily drooling. Her and Olivia are cutting their last 4 mollars. Olivia has 2 to go and Emma has 3. It's so much fun!! O.k. so maybe not. : )

Alyssa likes school but she doesn't like office time. I guess this is where they have to put up these barriers so they can't cheat off the others papers. I don't think she wants to cheat, she just wants to socialize. Who knows??

Loren is regressing some with her talking...she is talking more baby talk and I know it's cuz she thinks it's cute and she wants some more attention. How much attention do these people need?????????????????? Aughh!!

Loren is very close to being potty trained. We might go and try to buy some big girl panties this weekend. She has some at home but I think it might mean some more for her to pick them out herself. We'll give it a try.

Mike and I are so done with traveling. We have overdone it this summer and we seriously need a break!!! But I have a feeling that won't happen until January.

As far as health goes, I meet with my urologist tomorrow morning to hear what is going on. I know he wants the surgeon who aspirated my cyst to take over until we know that it hasn't grown back but I don't know much more than that. In my opinion, if there is a chance this will turn into cancer, I say we just take it out. Then we won't have to worry. I have a feeling that the chance of that is smaller so they'll prefer to just watch it. We'll see what he'll say tomorrow.
Emma seems to be doing well. We have transitioned her over to just liquid. That is fun! She does very well drinking it. She is eating well. I don't know how much she weighs so I don't know if it has affected her. Last weight we had was 14 lb. 9 oz. I'll be anxious to see what her next weight is. She is one strong girl I just say. The H1N1 scares me for her. I don't know that her lungs and weight can handle getting that. So we'll see...

Everyone else seems to be pretty healthy. We will be going to Alyssa's yearly Cleft Clinic November 12th. She hasn't been for 2 years though. I'm anxious to see when they will start working with her mouth. She has lost 2 teeth and I know that might affect their decision as to when she will have her bone graft and oral surgery. Also, she will need to have her hole in her ear closed soon too.

I think I'm at a stage where I'm tired of everyone evaluating Emma because there is obvious pressure with that. For the most part, I feel that she needs more time. But by feeling that way, I wonder if I'm right and therefore, am I doing the best thing for her? It's just how it is. I don't think that feeling can go away. I think it's probably just part of being a mother.

There is a doctor I've thought about taking Emma to in Florida. He is a homeopathic doctor. We will be getting closer to the possibility of Emma getting growth hormones. This is a shot every single day for years. This is also $20,000 a year. It is looking like insurance will not cover it. Which leads me to possibly taking Emma to this doctor who is my best friend's dad. His visit, which I think involves 3 days), would be $1,200. But I think it would be worth it. The twins are 17 months and we will start talking about these growth hormones as we get closer to 2 years old. So...it's just something that is in the back of my mind.

I am to the point where I need a break but I need it in my own home. I know that sounds crazy but I have so much to do here and so many little people trying to help me out that I might as well sit down and forget it. : )

Well, Alyssa and Loren are fighting over candy so I must go break it up. I love what sugar does to these people. Aughh!!!!!

Love to you all!!
Bethany

I'll make up by posting pictures...

So I'll try to make up for being a not-so-good blogger anymore by posting some pictures. Enjoy!
The Barbie picture is actually Alyssa's birthday cake. She just turned 6 and is growing up fast!
Mom and her twin are from a conference we went too. That is also where we took the picture of us sisters with mom.
The picture of Mike and I is at a Colts game back in September.

Test results..

My test results came back from my cyst basically saying that it was infected. The cloudiness in the fluid that was drained from my cyst was not cancer cells but blood and cells that were trying to fight off the infection. I meet with the dr. on the 30th to discuss where we go from here. If he is concerned that it could go into cancer or the infection might come back then we might talk about going in and taking it out. If he isn't concerned then we will probably just continue monitoring it. But overall, great news!

The girls are getting over a sinus infection. Lovely!!!! I'm so ready to be done with this. We have a crazy, busy month traveling and busy, busy!!!!! I'm be ready for November. : )

This was short but I need to go see what Olivia is tearing apart. : )

Fewer and fewer....

Well, these updates are getting harder for me to keep up with. Things are just crazy!!!!! I'll try to give you updates on each of us.

Emma - had a viral infection which then her skin had a bad reaction to it - broke out in hives or something. She is doing much better now. But two weeks of not eating well hasn't done her weight any favors. She is at 14 lb. 9 oz. So I'm praying we get back on the uphill climb. She has a cookie swallow Wednesday. They will x-ray her while she eats to see if she can have non-thickened milk so we can transition to a sippy cup or at least have the freedom to do what we want. She is almost walking. She walks holding onto things. She is becoming louder by the minute. She is still very sweet and I love watching her grow.

Olivia - is a character. She loves to play and have fun. But she also has a temper like Loren had/has. She swings her arms around and throws herself on the floor and is rather humorous to watch. She is very loving and like to snuggle. She is doing very well.

Loren - is currently sick with a fever. Lovely! She has started talking so much since Alyssa has started Kindergarten. It's very cute! She is also calling the shots as far as potty training is concerned. It is only when she innitiates it. So today she has gone pee pee twice and poopy once. I'll take whatever I can get. : )

Alyssa - is thriving and doing so well in Kindergarten. She scored third highest in her class on one of her testing with letters and sounds/reading. Very cool! She is also behaving very well. Today was pajama day and they had popcorn and had a great time. She loves to beat up/wrestle with daddy.

Mike - working hard. Putting in long days. He has lost 43 lbs since the girls were in the NICU. He loves to go mountain biking when he can. We try to hike with all the kids on Sundays. It's been fun.

Myself - I just had surgery on Friday to aspirate the cyst on my left kidney. There were some unexpected issues but I think it went well. We sent out some stuff to get tested and we'll know more tomorrow. Just trying to get myself better now that my kids are getting there.

I'm exhausted most of the time but I'm keeping up. Obviously not with this blog but I'll do what I can. : )

I'm off to sit and have some down time before bed. Hopefully I can get better with this and posting pictures. Love to you all! Bethany

Took Emma in...

I took Emma in to the doctor today to make sure her cold hadn't gone into her lungs. It hasn't. Yea! It ended up being her sinuses. Lovely! There really hasn't been any drainage out her nose just congestion in her head. So we started her on antibiotics to help things along. She is doing well though. She doesn't act like it is affecting her. So that is good. We did weigh her and she is up to 14 lb. 8 oz. I'm very thankful for that. Every little bit helps. We will be starting speech and feeding therapy as far as I know. They are supposed to call us and set something up. We'll see how that goes.

Hello

Things have just been really busy lately. We have traveled a lot this month to see family. It's been really good. We have gotten a lot more done on mom and dad's house which is really exciting. Emma and Olivia have had a cold this past week. I'm sure Emma has probably lost a little weight but hopefully not much. It seems to be better now and the good thing is we didn't end up in the hospital with pneumonia. We have a home visit tomorrow so they might weigh her... not too sure.

The twins and I will be on the news tomorrow night. That should be interesting. : )
Friday, I have an ultrasound for my kidneys. We need to see if there are any more cysts and if my one big cyst is any bigger. If there are more cysts than what I have, they will test me for Polycystic Kidney Disease. If my big cyst is bigger, they will need to have it drained. It will be interesting to see what the findings are.

I think that is about it for now. Until then, enjoy the pictures!

15 month checkup...

This will be quick...gotta get ready to pick up Alyssa from Kindergarten.

Olivia is right on the money. Caught up completely. Is in the 50% with her height and head, 15% with her weight. 20 lb. 12 oz. She is doing well.

Emma hit 14 lb. on the nose!!! I love to see that next number. Seems like we have been in the 13's for awhile. She is not on any chart - not even premee. But she is growing and doing well and has her own chart going on. We still have her on Enfacare for the extra calories. It seems to be helping. She is really doing well. And she has grown a lot in length so that is good.

Anyway, must get going.

Small Wonders Miracle Walk

http://jmpradio.com/pods/gd/Podcast0817/POD_4_082009.mp3

This link is to hear the radio interview I had yesterday promoting the Walk. All proceeds go to the NICU. Our family is one of the two ambassador families this year to raise money for the walk. If anyone would like to contribute to the cause, you can send the donation to me and I will take it that day. Anyone is welcome to come attend. Here is the link below of the registration form if you want to walk. All are welcome!

http://www.childrenshospitalofil.org/top/foundation/Small+Wonders+Walk.htm

We are very grateful for our miracles!!!

Trip to the ER, Home makeover and 1st day of school

So much has happened since my last blog. Life is crazy and fast! What to share first....

Well, Mom and Dad went to Africa 3 weeks ago. Alison and I and a lot of help from family and friends, made over Mom and Dad's kitchen and bathroom. So these are before and after pictures. Mom was very surprised and that was fun to see.

Loren fell off the furniture that she shouldn't be climbing on at Grandma and Grandpa's house in Kokomo, hit her head and we got to take a lovely trip to the ER. Loren got 8 staples in the back of her head. We get them taken out Friday. Mike and I could definitely say we've seen our fair share of hospitals and ER rooms. Now we're just curious....humm....wonder what this hospital is like?

Alyssa started school today and was very brave. She LOVED every minute of it and is very excited to go back tomorrow.

I have been asked to do a radio interview about our experience in the NICU on Thursday. Should be interesting/fun...not sure yet. I hope that we can send a message of gratitude and that we can touch people out there that have been through what we have.

Oh yea, and I found out that I have hypothyroidism. I have an underactive thyroid. I was glad to figure out what was wrong with me. I have had the hardest year having energy and strength, my hair falling out, trying to lose weight and not succeeding and just struggling to get out of bed every day. So I had some blood work done and this is what they found. My thyroid was damaged during my pregnancy. I had almost all the symptoms, I just didn't know anything about this. So they started meds and I'm hoping we are going to get back to normal sometime. They said it should take about 2 months. So I'm trying to be patient. But I'm so glad to know what the problem is so that we can fix it.

I think this is all for now. :)

Starting to walk...

Yes, Olivia has taken a few steps on her own. She is 100% ready she just would rather crawl most of the time. Most of the time she walks, she is unaware that she is. It's funny!
Emma has taken huge progress in her eating. She is now eating solids. She has 8 teeth which help in the process. She is the strongest I have ever seen her. She stands up and is a fast crawler. It will be interesting to see how long it takes her to walk. By the way, I'm not encouraging any of this (for my sake). :)
Anyway, things are going well here. Everyone is healthy and that is so wonderful!!! Alyssa is all ready for kindergarten and I think I am too.
Well, I'll keep you posted but there is not a lot going on at the moment. Alyssa has her cleft team appointment in November so I'm very anxious to see when we start the next process - which will be with her mouth and teeth. She has already lost one tooth and is growing one in its place so it might be time to get things going. We'll see...She asked for the first time ever if she could put on her patch today. I said yes and asked why. She said "I just don't want to always be like this". Break my heart. Sometimes I do get frustrated ...like ..."Can't she get a break?" It's enough to deal with her heart and her cleft stuff, can't her eyes just be fine? Frustrating...

So...I'm registering Alyssa for Kindergarten today. I don't think I'm ready. Although it will be nice to have a much quieter house. But I'm hoping Loren will take over and start talking some. Not for the noise sake but for the communicating sake.
Emma has done amazingly since she was discharged from the hospital. Has 6 new teeth and is eating very well. I don't know how much she weighs. She is pulling herself up to a standing position and is crawling very fast! I'm so grateful for her health right now.
We just had an eye check up for Alyssa. No improvement. So frustrating!!! She has even worn her patch for some long days...9 and 10 days...oh well, he is content with the fact that her eye has not gotten worse. With school starting, we can only patch once she gets home at night. So our time is limited. We have 3 more years to try and get this eye working. Once she hits 9, it's set.
Olivia is almost walking. Not ready for that either. :) She is a very sweet, squishy girl. Did I mention she talks a lot?!?!!
I must feed these people now. Must go.

Pictures

Florida

Yes, I know...haven't got to blogging about Florida. I came home to 3 sick kids and had to admit one in the hospital with pneumonia. I kind of got sidetracked. So...here are some pictures!! I had the best time! I read "The Associate" (John Grisham's new book) and "My Sister's Keeper". We watched 4 movies- Seven pounds (loved it), He just not that into you (Loved it), Benjamin Button (good but slow going and weird), and Revolutionary Road (Sucked!!!!)(excuse my language). I slept, laid out and enjoyed eating all my food by myself. No one called me mommy and it was nice. No one demanded of me (Even Alison). Just kidding. I was very refreshed to come home and so ready to see all my little ones and Mike! And I really needed that extra energy to be in the hospital that whole next week. So God must have known. : )

So I just need to schedule this trip every year!!!! and I'll be great!!!!

All the girls are healthy again! Yea! We had a check up last week for Emma's post hospital visit. I went ahead and had Olivia checked out too just to make sure I wasn't missing anything. They are both doing great! Olivia weighs 19 lb. 15 oz. One ounce away from 20 lbs. You go chunker! Emma is trying to catch back up and is at 12 lb. 6 oz. She had been up to 12 lb. 13 oz. before the pneumonia. She is eating very well and we are keeping her on the high calorie formula to help in every way that we can. I keep hoping that I will just wake up one morning and pick her up and for once, she'll feel heavy to me. I want her to take off so badly. She is currently cutting 6 teeth. Olivia was the exact same. She had her two middle bottom teeth and in April, when we were at Carribean Cove, she was up the entire night and in the morning had 6 little jagged teeth just poking through or 1 day from it. Emma is duplicating that now. So much fun! Oh well. It has to happen some time. Emma is developmentally doing a lot better. She has started to clap her hands and blow bubbles. She is crawling very fast and gets to a sitting position from laying down on her own. I think she has come a long way. I hope to see her pulling up soon. We'll see.

I'm counting on you...

I love this picture where Emma is just leaning back on Olivia like she looks up to her little sister to take care of her.

Couldn't pass up a little humor...

It was so thoughtful of this company to make a swing for twins. ;) Hey, it works! They actually support each other's backs. Funny! These swings never made since to me..you either have your baby falling forward or lying down swinging. This one actually works to my advantage while they are both still small. Enjoy!

Tell me she doesn't look like she feels better....

This picture says it all....she feels better, she is eating better, she is happier. And I'm so glad!!!

Happy 4th! Emma is home!!!

Emma came home today. We missed her so much!!! Alyssa has been telling us that she missed Emma more than we missed her. She says that missed her 100!!! Whatever that means!!! It's so cute though! Alyssa visited Emma in the hospital with me on Friday night. I think it is good for Alyssa to see that it is not a bad place and they have a toy room and she thought Emma's room was cool and you could have ice cream, etc. because within the next few years we'll be facing open heart surgery and Alyssa will need to be in there. Anyway, so within a week, Emma has cut 3 new teeth and is now going from laying down to sitting up on her own. She is also crawling using both legs. And she does this thing where she throws herself backwards which is fun if there is a cushion behind her. Otherwise...dangerous!

Anyhow, we missed her smiling face. I'm going to go rest now. It's been a long day...and a long week....and I'm....tired. Good night!

Might be coming home...

Emma might be coming home tomorrow. She had a great day with her oxygen being off. We'll see how the night goes and maybe she'll come home tomorrow. That would be a nice 4th of July!

Off and On...

Emma came off oxygen yesterday morning but by her nap she was back on satting down in the 80's. Since then, it has been off and on. I think she still needs a couple of days to rest and heal. She needs to be 24 hours without oxygen to come home. She is in good spirits and wants to be held ALL the time. When you do hold her, she is squirmy!!! Her weight is up which is good. She is 12 lb. 6 oz. We'll take it! We'll see what today holds. Exhaustion is catching up to me. I crash hard at night and then my other munchkins wake me up during the night. :) Probably lack of attention during the day....who knows?

Emma Update

So the bloody nose is from the oxygen, being suctioned and the cannula was a bit big. So I asked for a smaller cannula and she seems to be doing better. She is down in oxygen but still on it. She needs to be off of it for 24 hours before she can come home. They are being extra careful with her because of her history. She is a sweetie and demands a lot of attention at the hospital. They are loving to play with her and hold her. She has been wearing me out. :) I forgot how exhausting the hospital can be. She loved being in her swing. She is down to 11 lb. 4 oz. I hope this morning weigh in is better or at least maintained. Please keep praying. We are being proactive and treating Olivia with antibiotics just to be safe in case her cold had turned into more.

Emma

I went in this morning to find Emma with blood coming out her nose and into her mouth. They said they had to suction her out and it caused her to bleed. The air in the cannula doesn't help and the cannula is a little too big. So I cleaned her up and suctioned her out again and asked for a smaller cannula. Then I fed her for the 1st time. They all tried and couldn't get her to eat. They had called the doctor at 4 a.m. concerned because she still hadn't eaten and her respiration was 80 and they were thinking she should be in the ICU. She also went up to 3 liters of oxygen. As the day progressed, she got stronger and ate better and breathed easier. I ended up feeding her 9 oz. between 11 a.m. and 7 p.m. By the end of the night, she was smiling for the 1st time in a week and bouncing on my lap. I'm glad she is doing better. She is back down to 1 liter of oxygen. She has lost more weight and is down to 11 lb. 7 oz. I hate to see her lose any more. I hope she doesn't. So in order to come home, she has to be off of oxygen and eating well. We'll see what tomorrow brings. Thanks for the prayers!!! Keep them coming!!!

Pneumonia...

Emma was admitted today with pneumonia and two ear infections and dehydration. She looks so pitiful. We just had their check up on Wednesday and she just had the common cold. Lungs were sounding good. Then she has slowly gotten worse. Then started vomitting - like she does when she is dehyrated. So in we went to the ER and they did a chest x-ray and a ton of tests and came back that she has pneumonia. So she is in the Peds and is on an i.v. and antibiotics and is pretty pitiful. Wednesday she was at 12 lb. 12 oz. and she is now down to 12 lb. even. I don't know how long this is going to take. She is on 3 liters of oxygen. Her sats were 84 when we went in. So please keep her in your prayers. She always needs it.