I welcome life because it makes me feel human and yet it stresses me out. I like getting out of the house and going to things because I feel like I'm not shut up in a house and I actually have a life and yet, most things I do - stress me out. For example, Walmart shopping the other day, made me feel productive and it was nice to come out of my hole. But the part of Loren screaming and spitting all through Walmart was not so pleasant. Loren has just started her temper tantrum 3 year old phase. I love this girl and it is a good thing. : )

We visited my nephew in Cincinnati and ended up taking Loren to the ER for 8 stitches in her cheek - same cheek with the dog bite - she fell on a sharp object. Another reason, we need to stay home. She doesn't get hurt in our house, just ones in other states. : )

The twins are in their twin beds and are doing well. They have actually taken naps the past two days. We painted their room purple. Very fun!!!!

I really should be ironing right now but I'm not....(just thinking)

Alyssa is doing much better with her orthodontist appointments. She has her expander in now and has taken responsibility to make sure we tighten it and are on top of things. Now, we need to get back to patching her eyes. But she came up with a good "reward" system. If she wears it two hours a day for 7 days, she gets to go to ToysRUs. (We really need to budget in her reward systems).

She is doing very well in school. She had wonderful grades and has a really great teacher.

Loren is growing up fast. But you can't say anything about her being in school because she is not, she is in preschool. She will correct you in a heartbeat. She is in love with horses. She is currently wearing her outfit for the 3rd day now because it has horses all over it....yes, I will choose which battle I'm willing to fight and this is not one of them.

Emma is doing extremely well!!!! Her speech has taken off!!! We will be getting her hearing tested soon with a sedated hearing exam but I really think she is hearing. At least way better than before her surgeries. She is possibly done with physical therapy - we are currently reevaluating to see what the next step is. We are wondering if her eye is tracking. We have an appointment coming up to see what the doctor thinks.

Olivia is doing well - being loud and using a very whining, high pitched voice and saying "why?" ALL the time. She is a ham and loves attention.

Twins are destroying my room so I must go....augh!!!!

So I started writing a post last week and ended up not publishing it....I was having a very down day and sometimes I just don't want to bring the whole world (whoever is reading this) down with me and I hate sounding like "Poor me". I know things could be a whole lot worse but it never diminishes the feelings I have and need to deal with. After riding the long wave of adrenaline through this summer of 5 surgeries and an MRI and starting orthodontics, I crashed and had to deal with all those emotions. I've learned and know that this is a part of it - being numb, anxious, going because there is no other way and then when all is said and done and people are healthy again - at that point, you deal with the emotions. Not fair, probably not the way to do it but I don't know that there is any other way. Especially when I have to hold it together for my daughter. I have to be strong for her.

So after lots of tears, I think I'm back on the up. Alyssa's MRI results came back and shows that she is mild and not yet severe and they think we have another year. She also does not have to go on medication, which was a possibility. I'm very thankful for this. I just could not throw this at her right now. She is at a very fragile point right now. We have been rubbing her scar some to break up the scar tissue. She has been wearing her contact to school and I was able to get the patch on tonight for about 2 hours. Baby steps but they feel like giant mountain steps. To ask her to wear her contact and patch is to ask her to give up her vision. She is doing very well in school. She loves her teacher and I'm so thankful for that. Her orthodontic work is hell....I'm not going to lie. She has been bleeding every time and I hate to see her go through this and I pray that it gets better. That is all I have to say about that. : )

Emma is doing well. I have no idea what she weighs or how she has grown. I need to get her in again but I've had to cancel the last few appointments because of scheduling conflicts. She is doing well in her physical therapy and speech therapy. I cancelled her music therapy. It was just one more thing on our plate and she didn't seem to be working on any one thing that was significant in my eyes. She kept getting annoyed and not cooperating after 10 minutes. Plus I work a lot with her on singing and motions, etc. Anyhow, it was just one thing I needed to cut.

She seems to be handling colds better. I think she has to have grown new lung tissue. I don't know how her ears are. She seems to be hearing better and talking more but we won't be able to do a sedated hearing exam for awhile...until her ear drum heals.

I think I've covered most areas. I'm hoping the next several months are down months for us. I mostly have to concentrate on Alyssa's eye and mouth.

Loren is loving preschool. She is learning a lot and I'm very thankful.

Olivia and Emma have hit the twos and are pretty much driving me crazy!!!! Both are into everything and testing me. If I survive this, I can survive anything. : )

Well, I just wanted to update this since it's been awhile. Thanks for all the love and support and prayers!!! They do more than you know!

This is Alyssa's 1st day of 1st grade. She is beautiful!!!

I'm ready for things to slow down. Had a crazy week last week with Alyssa's MRI. It went well. It was a very long day! We didn't leave the hospital til 4:00 p.m. She required an adult dosage of drugs so it was harder to get out of her system. She missed school the next day because she was still achey and her stomach wasn't feeling right. We did do the Versaid (sp?), with numbing cream for her veins and an i.v. She prefers that for next time. She argued with me at first about all options. So then I stated that she had to do one but she could choose which one and she choose the i.v. instead of the mask. I carried her to the room and I put her in the arms of a nurse. They took her from there so I couldn't see if she was scared or traumatized and it was very hard on me. I went to get some food and a drink and lost it in the cafeteria in the middle of ordering my stuff. I put my wallet up beside my face to hide my tears and told the lady what else I wanted...it's a good thing it was in the hospital because they probably see it at least some. Complete breakdown....oh why couldn't it be in the bathroom? So I got back to the waiting room and got my composure and the nurse came out and told me how she did. She was only scared for a short time and then they were able to distract her. But she did fine. Her MRI took 2 1/2 hours. We might find out the results tomorrow. We'll see...I'm not really ready to find out if we are facing open heart surgery soon. I'm hoping I have more time.

Mike's grandmother passed away last night. It's been a long road and we know she is in heaven...still doesn't make it easy. We will be heading to IN tomorrow night. She was an amazing lady! We will miss her dearly!

Alyssa starts her orthodontic work tomorrow. She is scared it will hurt and she won't be able to eat or drink but I told her she could. We'll see how tomorrow goes.

Emma is dealing with siunitis with infections in both ears. Lovely! So we are trying to get that cleared up. I am hoping and praying for slower weeks to come. We need some down time.

I'll post when I know more.
Love,
me

So I keep going back and forth whether to keep up this blog...my life feels crazy most of the time and usually I feel like I'm fighting to keep my head above water and not drown. Most of the time I can't remember what I've written in the previous blogs and yet I don't have time to go back and read them. It has been a crazy summer and I wish I could say that it is going to settle down for me to write more but I don't know that. I think it is also two sided - somewhat theraputic to talk about things and also very stressful to talk about these stresses. Interesting...So I guess for now, I will keep doing what I can. : )

My girls are growing up! Alyssa just started 1st grade. The first week was not good. She had a tummy ache every morning, didn't want to go and wouldn't eat breadfast. Once she realized it wasn't that much different from Kindergarten, she began to really enjoy it. She tends to always be scared of the unknown. Alyssa and all her cousins had the chance to go on a coast guard ship last month. She didn't want to go and cried and cried so she didn't go. Once her cousins came off safe, she cried because she wanted to go. Such a silly bug! Alyssa is the sweetest, most sensitive of my children. I adore her and think she is beautiful! She has an MRI September 15th. It will be the first time that she will get an i.v. without being masked or sedated first. It should be very interesting. This MRI will tell us if she is ready for her open heart surgery to replace her pulmonary valve. The x-ray and echocardiogram showed that her heart is enlarged significantly more. The MRI will show an exact measurement. I am nervous to do this. I'm not ready to go through such a big surgery. But I know it will be soon. The more she grows, the more her heart holds too much blood and stretches. We can't let that be stretched too much for too long. Alyssa also starts her orthodontic work this month. We will start with an expander and then progress to braces and headgear. All this will lead to a bone graph surgery taking bone out of her hip and putting it in her gums. They will also do any orthodontic work while doing the bone graph...taking out extra teeth, moving things around, etc. Thankfully, she is looking forward to the braces part of it. She really wants her teeth to be pretty and straight. As far as her eyes go, she is wearing her contact to school but patching is very limited. She is very smart and does very well in school. I'm so proud of her!!

Loren is starting preschool next week. She is very excited and has been putting on her shoes everyday since Alyssa has started and cries when she hears that her school doesn't start yet. She is at a very cute age. She says all her c's and k's with t's. So she said "Mommy, tan we eat tomorrow?" and yesterday she said, "Mommy, tan we please go to bed?" She is trying very hard to be a big girl - wiping after peeing and washing her hands. Those are big things for her! : )

Emma is doing incredibly!!! I can't complain. She has been through 5 surgeries on her ears. She seems to be hearing a lot better. Her speech has improved by leaps and bounds. She still has a ways to go but has come a long way in a short time!! Her physical therapist said she is walking more flat footed now and that is great! She is very happy with her improvement since her last evaluation. And that is without therapy. We have to go in and remove her packing next Thursday. I'm anxious to see if she can hear any more. We will also be doing a sedated hearing exam to see if the surgeries show any improvement. I'll be anxious to see those results. Overall, she has just come out of her shell more than ever.

Olivia - what a character!!!! She talks bigger than she is. She is very sweet! Her and Emma's favorite thing now is singing the itsy bitsy spider. They do the motions and they want it sang over and over and over and over...get the point. : )

I'm doing well, I think. I've been more emotional this summer and I'm pretty sure it is because of all the surgeries. If I can stick to a regular exercise routine I think a lot of my stress will be dealt with that way. I'm trying to sit more and play more with my kids. I'm not stressing as much about what isn't being done and just trying to enjoy this time. Sometimes I think if time would just pass, life will get easier. In some ways, yes but it will also be hard in some ways too.

I'm thankful for Mike and his job. I'm thankful for medical people and the abilities God has give them. I'm thankful for wonderful parents and in-laws that support us. I'm thankful for our families that love us. I'm thankful for our children and hope that we do the best job of raising them. I'm thankful that God always knows what I need and can carry me through all that comes my way.

I'm completely wiped out and Olivia is in her bed screaming at me so I shouldn't write long. It has been a crazy summer! Ups and downs for sure...

Emma is going in Friday to remove the packing in her ear. It will be a short 15 minute surgery but it will be in the operating room. Her biopsy came back and there is no cancer. They were very baffled by the tissue but they seem to think they know what it is and it was good they removed and might have less a chance of coming back. Her next surgery for the other ear is scheduled for August 19th.

We took Emma to the emergency room Sunday night. She was just struggling to breath - she had a cold - and needed a little help from her friend - oxygen. We were in the ER til 1:00 a.m. then admitted. We were discharged the next day. I came home to Loren bawling because she said her ear hurts. So off I took the kids to the doctor and she had really bad ear infections in both ears. So as of today I think we are on the upswing.

Loren's face is healing. I know the scars should look better over time.

Alyssa is going to have an MRI. The doctor thinks it might be time for her open heart surgery to replace her pulmonary valve. The x-ray showed her heart is enlarged more and they can't let it go too long being too big. It will stretch out her muscle wall so much that it won't bounce back and they need it too. So the MRI will tell us exactly how big it is and then we will decide. The one day I dread more than any other is telling Alyssa she needs open heart surgery. Not sure how I'm going to go about that one.

So that is where we are and I need to get off of here and take care of my littles.

Thanks for hanging in there with me through the lack of writing and posting pictures. Once school starts I might have some more down time to update. We'll see...: )

Emma had surgery in July on her right ear. The four hour surgery ended with the doctor coming out and saying that they removed tissue but they don't know what it is. They sent it to the lab and have gotten back the pathology reports. The nurse called today and said they can't tell us the news, the doctor has to and he is on vacation for another week and a half. So she was going to see if the other doctor in the practice could let us know on Monday. He is Alyssa's doctor and knows us well so hopefully we can get a report on Emma's surgery and hearing exam and get a report on Olivia's CTscan. Emma seems to be healing well. It's over a week and she is still draining blood from her ear. Today she was holding her ear and kind of pouting. After that it started draining again.

Loren got bit by a dog last weekend in the face and had stitches in two different places and they glued the 3rd spot. She is doing fairly well but needing extra attention. I think we'll be dealing with some scars but only time will tell.

Alyssa had her chest x-ray, echocardiogram and dr. visit with the cardiologist today. Her heart is enlarged more. They want to do a MRI as that is the most accurate way to measure how big her heart has gotten. The concern is as her heart takes on more blood and that chamber walls increases to hold the blood, they don't want that wall expanded too much for too long. Like a rubberband they want that wall to bounce back. But if it is expanded too much for too long, it might not have that elasticity. So a MRI will let us know if we need to start the pulmonary valve replacement process. We will be getting a call from the scheduler on the that date.

I think I covered all four kids this time. : )

Emma is walking everywhere and climbing everything. She walks a little more on her toes so she will be starting physical therapy. She is starting music therapy and is already in speech therapy.

Emma got an owie on her leg the other day...so she sat down and lifted her leg and she kissed it herself, got up and walked away.
Olivia and Loren were playing with a ball and Loren took it away from Olivia. Emma stood observing from a few steps behind. After she stood there, watched and thought...she walked over to Loren and hit her on the head, turned and walked away. It was hilarious!!!

Olivia likes to throw tantrums and can be a handful and yet is the funniest, snuggly person.

Alyssa is getting so tall and is so grown up. I can't believe she is starting 1st grade.

Loren is cute and she knows it. She talks like she has an accent, especially with the word "not". All her c's or k's are spoken as t's. So she says, "Tan you tiss me?" Then I kiss her and then she says, "Don't tiss my nose" and giggles and smiles. Such a cutie!

Wow! Has it been this long??? Since I have written last, Mike and I and my parents, my siblings and their spouses all went on a cruise to Bermuda. It was beautiful!!! The beach was fabulous!!!! Swimming in the ocean was wonderful and I'm not usually a fan of the ocean. Loved it!!!! Had some really good meal times with the fam and had some good laughs...made some memories...especially taking pictures in our red outfits. I would tell you but you would probably have to be there to think it was funny. : ) We took no children and that was very nice. I would have been too concerned of them jumping overboard and instead of 20 people telling me I had my hands full, I would have had 3,500 people telling me that. Mike's parents and my cousin, Jennifer and her daughters, Lauren and Renee, watched them the kids. I think they had a pretty good time too.

We started speech therapy last week with Emma. We still don't know if she has any hearing loss. We have a sedated hearing exam scheduled for the end of this month so that will tell us if she needs any amplification with her therapy. Olivia goes to the ENT tomorrow to get a CTscan scheduled to see if she has any cholesteatomas in her ears/head. Emma's 1st surgery is scheduled for July 8th. It will take 4 hours. She should be starting physical therapy soon but I'm still waiting to get that set up.

Alyssa has her heart appointment scheduled mid-July - x-ray and echocardiogram. I am always anxious to hear how her heart is doing. I think her energy runs out faster and she needs to catch her breath more often but she still has enough energy that other people don't see what I see. Her heart is enlarged which is crowding her lungs which would make it a little harder to breathe. Last year she would run around the block with me (1/2 mile) and run most of it. Now she runs about 20 feet, bends over, catches her breathe and then will either run or walk a little more and repeat it. Last year she would walk but never bend over. So we'll see...I always get anxious because I know I will dread the day that he says it is time to do open heart surgery to replace her pulmonary valve.

Emma has really come out of her shell and taken off now that she can hear (since her surgery in late February). She is babbling a lot! She is up to about 4 words. She is delayed about 54%. Most of that is because of the thick fluid that has kept her from hearing for almost 2 years of her life. I think she will continue to take off and improve just with time. What better therapy than having 3 sisters who don't ever stop talking. : )

Well, I'm going to post some pictures. Enjoy!

The picture of Olivia with the diaper is funny because I wasn't planning on her getting in the pool so she had on a regular diaper and it of course filled with so much water and she kept grabbing at it because it was so uncomfortable. It was very funny to watch her!

Quick update...

Emma will be having two surgeries. Her first ear surgery will be July 8th. We are not sure when the second will be. They are 4 hour surgeries per ear.

Emma weighed in today at 17 lb. 12.5 oz. Olivia was 25 lb. They are both doing fine. We will continue to have Emma seen every 3 months. We won't have Olivia seen for another year.

Things are going well and the kids are growing and loving playing together. Enjoy the pictures!!!

Hello!! Yes, I'm still here...just too busy to really show it. : )
Actually I'm too busy cleaning up poop and pee to really blog. That is not a joke! I wish it were. The twins lately especially think that getting in bed means stripping naked and then of course peeing everywhere or taking off their diaper and flinging, smearing poop everywhere!!! Aughhh!! And then Loren is wanting more attention. Even though she has been potty trained for a long time....she now needs me to drop everything and take her potty as she is doing the potty dance. So if she waits too long or I take too long stopping what I'm doing, pee everywhere ...even one foot from the toilet. Oh...this too shall pass....

Medically we are doing pretty good. I did take Emma in to a prompt care in IN for an ear infection. Then the next night took her into the ER in Peoria because she cut her lip pretty good on the inside. One doctor was going to do something with it and the next doctor said let's not. But they did listen to her lungs and heard some wheezing and stuff in her right lung so we did x-rays. Nothing bad so they just sent her home on breathing treatments. She seems to be doing well.

This morning is her ear appointment. We had a CTscan on April 23rd. They did call and the results showed something but they couldn't discuss it over the phone....not really what you want to hear....but we have to come in and discuss our options. So whatever that means, we'll find out this morning. If I had to guess, probably surgery but we won't know until we hear what he has to say.

I'll blog afterwards and let you know. Need to get going but I'll be back.

I know it has been FOREVER...

Here I am finally posting.... : )

Thanks for hanging in there. We spoke at church two weekends ago for the first time about our journey. It was a hard week preparing for it. It brought up a lot of emotions and hard times. But it was so good to go back and think about everything we learned through it. If you want to hear it, here is the link. http://greatoakscc.org/
click on message player and the message is titled Hope:Destinations. It is about 43 minutes long. It was very hard to put into words what we learned and to take 8 years and minimize it into about 20 minutes. I hope that it touches even one person. We want good to come out of the pain that we went through.

I can't believe Loren just turned 3 and the twins will be 2 in May!!! I'm still amazed! Emma is doing really well. She has started to say a few words since they did surgery on her ears. She is walking well and seems to think she is way bigger than she is. Olivia likes to sit on Emma's back and Emma just laughs and laughs. Today I told the girls they needed to come...so Emma turns around and goes behind Olivia and starts pushing her to come. She really is a stitch. : )

The only update right now is that Emma had a CTscan on Friday. Mike took her. It was really nice that I did not have to do another round on my own. They had to sedate her so Mike was great with her. He came home and made mention of how draining the hospital is. Even for an appointment, it is draining. We haven't heard the results yet. Either there is infections in her bone mast and ear drums and we will need to do surgery or she is clear from any internal infections and we are good to go. We'll see. I'll probably call tomorrow to see if they have heard yet.

We are starting therapy in June for Emma. Occupational, speech and physical therapy. We will go to Easter Seals every week for this. Me and all my kids. Should be fun. : )

Enjoy the pictures I've posted. They are of Easter.

I haven't updated very much lately and I do need to get my camera going again. Doctors appointments seem to be slowing down but I seem to be getting busier. I think a lot of it is this stage we are at with Emma and Olivia. They want to be held ALL the time and I'm not allowed to sit down....I must be standing up holding both. Boy, do my arms hurt? : ) I hope this stage will pass soon but we'll see. Emma is growing strong. She is up to 16 lb. 10 oz. so I am thrilled. We have her on plain whole milk right now. Olivia weighs 25 lb. 6 oz. Emma is walking around like crazy which I love to see. I hope she starts talking a lot more here soon. We will probably go ahead and start speech therapy soon.

I can't write long but I will hopefully get some more blogs and pictures up soon.

Doing well...

Everyone seems to be doing well here. Some snotty noses but overall good. We went to Emma's pulmonologist last week. We waited for 2 1/2 hours before we were seen but when you've hauled all the kids and waited that long, you just can't leave. Olivia snuck a crayon out of the lobby and took it back and colored (red) all over their office floor. So she probably was paying them back.
Anyway, it was a very good conversation and I feel like we've touched bases and established him as her lung specialist. So next time she is in the hospital with another lung issue, I can have them contact him to come see her and that makes me feel good. This last time around was pretty frustrating in there.
He also said to stop the treatments - they weren't doing any good for the condition she has. That was music to my ears. Trying to hold down a strong girl and get her to breathe that stuff in is trying to accomplish the impossible. Now we will still do the albuteral treatments when she gets sick. But I can handle that. She is holding steady at 16 lbs. He said a lot of her size issues are due to the TTTS. I've, since then, have been researching the long term effects of TTTS. I'm hoping to understand things a litle more.

We have recently done the older girls room. Enjoy the pictures!

Emma had her ENT appointment today. There were no new cholesteatomas so that is good news. There is no fluid so that is great too. So we will be doing a CTscan soon and we will go from there depending on what the results are. I'll go into details once I know results. It could anything from good news, to monitoring to surgery. Any of those three. I'm hoping for the good news. : )

Emma is walking everywhere and doing really well. Her weight is only 16 lbs. and Olivia is 25 lbs. We are almost out of the formula so I'm trying to decide where to go from here. I'm looking into pediasure so I think that will probably be our next route. High calorie and it would be all liquid which she is more into now. I'm looking to find coupons because it is expensive. If anyone knows where to get coupons, please let me know.

Loren is potty-trained which is wonderful!!!! One less in diapers. Two more to go. : )

We are slowing down with our medical issues at this point. I'm glad for the break. I won't completely be able to breathe until we find out about Emma's ears but after that we should have a break. Alyssa will start her orthodontics this summer. She will have a spacer put in to start spreading out her upper jaw/mouth to prepare her for her bone graph in a year or two. They will take bone out of her hip and put it in her upper gums. We are going to check up with the plastic surgeon but I think we will be taking a break. If anything I will see if there is a surgery they can combine with her bone graph.

Alyssa's eye is showing improvement with the contact. So that is now our focus where she will be wearing her contact to school on some days. It seems to be helping even when we don't patch.

I'm hopeful for a relaxing summer. It has been a crazy couple of months and I'm looking forward to some down time.

Thanks for all the support and encouragment! We always cherish that!!!

I cut the girls mullets off. I'm feeling better...just had to get out there and exercise some of the stress off. Emma is doing very well. I was very excited to see that Emma has all her 2 year mollars and Olivia doesn't have any. It was just cool because it was the first thing that Emma is ahead in so that was cool! Olivia is cutting hers and she is not a happy camper. Enjoy the pictures!

Dealing with the stress...

Once again, here we are, and Emma is doing great and I find myself picking up my pieces or at least trying to. This last episode in the hospital, with Emma's lungs starting to collapse, really scared me. On Saturday, I thought we could loose her. I mean these two little pieces of her body that were supposed to work weren't working....they were shutting down. Now she is doing great and I find myself a mess. I know this is usually how it works but I'm still not used to it. The adrenaline carries you through, then she gets better and you crash. I'm hoping this "down" time isn't too long. Her surgery went well and she is really thriving. Her sats yesterday before surgery were fabulous...between 96 and 100. That is really good! I think today her walking is more steady and she is babbling more. She seems much happier! I'm so grateful for her doctors and nurses! Her pediatrician is incredible and is the one that found this problem with her ears. If it were missed, the growth/infections could have eaten her ear drums and left her with no hearing. We are so very grateful. God seems to always have a plan and put stuff in our paths that we could have easily missed had His hands not been guiding us. We are very grateful to God that we are still holding our baby girl!!! She is a blessing to us!

Emma's surgery went very well. They removed 4 cholesteatomas from her ears along with very thick fluid. Some of the thickest he had seen. He also put tubes in. She is doing very well with the help of Tylenol. Hopefully we'll see an increase in her verbal development now that she can hear. Enjoy the pictures!!! The bottom one - she is riding in the wagon waiting to go back to surgery.

We have to arrive for Emma's surgery at 8:15 a.m. I'll let you all know when we are done and how things went.

Evidence that she does eat...

Checkup

Emma had a check up on Monday. She sounds good and weighs 15 lb. 15 oz. She is doing really well and is a very sweet girl! She will be having ear surgery next Thursday, February 25th. They will be getting rid of her Keratin Pearls and will also be placing tubes to get rid of the fluid. Unfortunately, we have to do things a little backwards. We need a CTscan to know the extent of the surgery but as long as she has fluid they can not get a good read as to how extensive the keratin pearls are. So the only way we can do it is the way we are doing it. Which only means, that we might have to have another surgery once we can get a CTscan if the Pearls go into her bone mast or beyond the middle ear. It's complicated but we have no other options. And the first surgery should not be a big deal so that is good.

Other than that, we are just winding down from everything being in the hospital. I hope I regain some energy soon. : )

Please keep my friend, Megan, in your prayers. She is getting a new heart as we speak. It is from an 18 year old so I'm sure there is heartache there too. We need Megan's new heart to work and for her body to accept it. They said they usually know within 24 hours. Thanks!!!

Emma is home now and doing great!!! Thanks for all the prayers! She did have pneumonia in both lungs and bronchialitis. Doing great now! Enjoy the video!

Much better...

Emma is off of oxygen. What a week this has been!!! It has been extremely difficult and trying and I'm glad it is almost over. She will probably be coming home tomorrow. Yesterday, things were not looking good. We discussed giving her one more day and restarting lasix and then if no change we would start steroids. But with a few changes that morning - a new cannula and Emma's 4th feeding tube coming out, she improved tremendously. She fell asleep in my arms and for two hours I stood holding her watching her sats and timing how long she was satting 99/100. The nurse was great and kept weaning her down. My arm hurt so much but there was no way I was going to move and chance waking her up. In two hours, Emma went from 8 liters of oxygen down to 2 liters. Overnight she was weaned down to 1/4 liter. This morning we weaned her the rest of the way off. The doctor said her lungs were very clear with no crackling sounds. We are so thankful she has pulled through. Thanks for all the support! I'm very tired and need some time to recoup but I don't know if that is going to happen. : ) Hopefully she'll be home tomorrow. Thanks again for all the prayers!

The same...

Not much to say...there is no change. She was in better spirits towards the end of the day though. She would throw her toys on the floor and watch daddy pick them up. I know I got a lot of pleasure watching that one. : )
I hope to see some improvement soon. 7 liters of oxygen at 90% is not good. We can't let her lungs get damaged worse than they are. I have some questions for the dr. tomorrow about some options...please pray that we know what to do.
I feel better after a very stressful day. I was able to talk with some good friends to help me with some of the issues I've been having and I do feel better. I hate to vent frustrations out on other people but it does help just to be heard. Please keep praying that Emma's lungs will heal. I'm getting concerned as the days go by that there is no improvement.

Step back...

We started the day improving on oxygen...then it went downhill. She is not happy and that is hard on me and then I feel guilty for feeling that way. I'm tired and frustrated. I've broken down several times today. She is very frustrated going 5 days without eating and not feeling well. I can't blame her. I just wish I could feed her. They suctioned out one of her lungs today...it had blood in it. I don't know if that set her back or if they turned down the oxygen too much and it sent her back up...I don't know. And there is nothing I can do about it. I hope tomorrow is a better day.

quick post...

Quick post because I'm exhausted...

Emma is holding about the same today. We had a rough day of a girl not feeling so hot. She is hungry...I can't even drink a water in front of her without her throwing a fit. I can't even put her down so I can eat because I can't eat in front of her...it is too much torture. Anyway...they put in a NG tube (to feed her) at 11:00 a.m. They took an x-ray. It wasn't positioned where they wanted so they came back and redid it. Then we had to wait on another x-ray. So we were able to start the continuous feed at 6:00 p.m. The bad thing is they are bypassing her gut and going straight to her intestines because of the type of respiratory support she is on so bottom line - she is still hungry. The good thing is she is on pediasure which is 30 calories vs. my 22 calorie Enfacare. So that is a good thing. I would LOVE it if they could put some weight on her. However, she'll probably just be making up the weight she has lost since she has been here with the 4 days of not eating. Oh well, at least we are turned around in this area.

They stopped her respiratory therapy. They felt like it was irritating her. I personally think it is helping her but I do it during the day so I don't feel that she needs any more. She loves it when I do it and I think it is breaking up a lot of the crap in her lungs.

Emma is still on 8 liters of oxygen so we'll see what the night brings us. It is just going to take time for her lungs to shake this. She is not as labored and that is good. Her respiratory rates were very high yesterday and before ...like above 80 breaths a minute. They should be 20-40. Today they were pretty well under 60 so that is better.

I need sleep so I'm going to sign off now. Thanks for everything!!! I'm sorry I'm not returning every call and text but I do appreciate them all. Love you!!!!
Bethany

Emma...Emma...Emma......

So all this started very minor and quickly...
Wednesday Emma had just a little runny nose and a tiny cough...no big deal. And nothing consistent. She was wheezing a tiny bit so I was giving her her breathing treatments which is also a stimulant. So afterwards she was just playing and playing. Not lethargic by any means. Thursday night I noticed her retracting a little bit - she had her shirt off and when she breathed her skin went in between her ribs. So I gave her another treatment and then another one in the morning. But it was still knawing at me. So I called the dr. and she wasn't going to be in til the afternoon so they told me to go to the ER. I didn't think she was that bad but I took her in. They did an x-ray and by that time she had a temp of 101. At that time, they told me she had pneumonia in both lungs and they were going to admit her. Later I was told that pneumonia is usually in a more concentrated area and Emma's was not. Emma's was all over both sides - very cloudy and wet. So they are now calling it broncialitis. The dr. explained to me that this is just a common cold to people but to Emma - with her lungs and history - not the case. I went in on Saturday and she was so much worse. I watched her work so hard to breathe...by far the scariest thing I've seen. Her oxygen went from 1/4 liter to 4 liters over the next couple of hours. It just kept getting worse and worse. They ordered another x-ray and it was showing parts of her lungs sticking together/collapsing. They wanted her to be under more critical watch so she got transferred to the PICU. That day just got worse. By the time Mike came Saturday night, he couldn't believe she had been like that all day. I was breaking down so Mike wanted me to eat dinner in the cafeteria with him. I could not leave her when she was struggling so much. But the nurses stepped up and said they would make sure she was o.k. We ate and I cried. The helpless feeling of not being able to fix it. No antibiotics were going to fix this. She just had to wait it out and hope for the best. When we got back, the nurse had spent a half an hour with her and couldn't believe how bad she had gotten. By the time we got back, they had made several changes. One of them was to put her on a high flow cannula. This forces the air much faster and would hopefully open her lungs back up. So she was moved up to 8 liters of oxygen and 50%. She was in better spirits. The down side is she can't eat with a high flow cannula. So that much needed weight is now melting off her body. It's now 3 days, no food or drink and she is not happy about that. If she does not improve enough to get off of the high flow cannula by tomorrow, they will put an NG tube in and feed her through that. She won't like it but it will make her feel full and she will be getting the nutrition and hopefully not loose too much more weight. So that is where we are now. She will be in the hospital at least this whole week. We need her to turn the corner and start getting better. Right now she is holding steady and not getting worse. Thank you for your prayers!!! Thank you for all the offers to watch my little ones. I'm so very tired and drained. I must get some sleep tonight. I'll try to update throughout the week. Love, Mom to Emma

Tear duct surgery...

This is my amazing friend Susan. She is an angel to me and has been there for me through lots and lots of trying-I don't think I'm going to make it- times. She has helped me in ER visits with the girls and came and helped me with this surgery. I love you Susan!!!!

Emma and Olivia's surgery went well. They were both extremely blocked. Olivia's surgery went very well. Emma's left side was so blocked that when he unblocked it, it backfilled. So basically we'll just have to wait and see if it filters out over the next few days. If not, we'll go back in and put in a tube. So we'll just pray that it does come out on its own. Emma lost a lot of weight with this recent sickness with vomitting. She is down to 15 lb. 5 oz. and that is on the way up. She probably hit 14 lb. during the worst part. So now we are back on full force trying to get her weight back up. I guess it is just an endless cycle.

The funny part of their surgery...Olivia is bigger so I guess I expect her to be tougher. Nope...she is Miss Drama and kept looking at me like how could you do this? Emma, on the other hand, was just snuggling me and talking and took it like a champ. Just cute and funny! : )

So we have...crazy hair going on with the twins. They like to pull their rubberbands and hair stuff out (especially while they are sleeping). So this is what you get. The one with all the kids is Christmas at the Albright's house. Alyssa's picture is of her not feeling well. And all of them in the laundry basket is them thinking that they are helping me. : ) Enjoy!!

I had an ultrasound yesterday on my kidney and bladder. My cyst that they aspirated is back. I think it is a little bigger than a golf ball right now...not too sure. I have an appointment tomorrow with the surgeon to see what he wants to do. He might want to just watch it and let it grow a little more before aspirating it again. Or he might want to go ahead and deal with it while it is smaller than the previous one. If he does, I want it done either right away or after the mini. I just started my training so I don't want to be down too long. I'll keep you updated after my appointment tomorrow.

Alyssa played dress up with the girls...

So this morning I woke up to Olivia, in her crib, stark naked with a poopy diaper removed and poop everywhere. Lovely! And to make matters more humorous...today Alyssa and Loren have watched and rewatched (about 30 times) the Huggies commercial where the guy is changing the baby boy and he takes the diaper off and the baby pees all over the ceiling. They guy covers him up and then uncovers him again to change his diaper, thinking the baby was done peeing and the baby pees all over the wall and lamp and pillows, his coat ...meanwhile my girls are laughing their butts off. Loren looks at me and says "Mommy, baby peed wall". I'm thinking that you wouldn't be laughing if you had to clean it up. Just you wait!!!! : )

I'm ready for the girls surgery next week. I'll be a hermit until then making sure we don't have any sickos postponing it. I just want it done. : )

Well, I must go ...someone is calling my name. Imagine that!!!

I am feeling a little better....they always say that blogging is free therapy and it is true. Sometimes I just need to write my feelings out and the weight lifts off me. I'm getting my strength for the two surgeries coming up next week. These will be easy and I'm so thankful that Emma and Olivia are young enough to not know what is going on. Thank the Lord for that!!!! Then we will meet with the ENT for Emma in February and decide when to do that surgery. Then we should have a break for at least a year hopefully. After these next three, we will have had 18 surgeries in 8 years of marriage. And we are still married. : ) Just having the children in the NICU, we were told a lot of marriages do not make it. Very sad...

Well, Emma is walking and I LOVE it!!!! It truly is a joy!!! A wonderful Christmas present! I could not ask for more!!!

I can't wait to see how much she weighs at her next check. I think she will get weighed Thursday when the visiting nurse comes by. If not, I know she will be weighed next week before surgery. I'll let you know how that goes. : )

Have a great night!!
Bethany

So close..

Well, with all the family's help, Emma has taken several steps - up to 12. Her cousins decided it was their mission to help Emma learn to walk over Christmas and it has really helped. She is taking off. Thank the Lord!! I was starting to feel like I would never see this day. Easter Seals will be here next Thursday to evaluate her again. I'm praying that they are very pleased with her progress.

Thank you to those who have sent Enfamil coupons. It has helped tons. I know the formula has helped her gain some weight. I'm anxious to see how much but I can tell a difference and she is much happier. I'm still waiting for results from her Ctscan. Her neurologist is waiting to talk to her eye doctor. He is wanting to know if her eye dr. is concerned that her enlarged ventricles might be putting pressure on her eyes. This hasn't come up as a concern yet in our appointments so I'm hoping that he is not concerned.

We are set for surgery on the twins' eyes on January 21st. They had to move the date back due to scheduling complications. I'm anxious to get the ball rolling.

Alyssa is healing well. Her final scabs came off today. Her nose looks beautiful. Some of her scarring on her columela is questionable but overall we are very pleased. She is very pleased with her new nose. She likes that it is bigger and it's kindof pointy like ours. : )

Alyssa had an appointment with her eye (contact) doctor. He put in her contact and she cried for about 10 minutes. It didn't hurt she was just a little traumatized by it. It was more of a "This is not fair..other kids don't have to do this"...etc. So we eventually read a book and got her mind off of it. She did really well. We took it back out and she will wear it about 4 hours a day, supervised, with a patch for a week. Then we will go back in next week to see how it is doing and make any changes needed. Once it shows improvement, it will be considered treatment and it will cost us $210 for 4 contacts. I pay $68 for 12 for myself. So her contacts are very special. This contact is soooooooo thick. I have never seen anything like it. So we'll see how the battle goes this week. : )

I'm drained. I think I'm going through the emotions post surgery and yet the stress is continuing. We are still having ear follow-up appointments, eye appointments, 2 more surgeries and I'm just ready for a break in it. I go in next week for a kidney sono and a visit afterwards to see if my cyst has grown back. Inside I would just love to postpone that for another 3 months. But I know it has to be done.

I don't know why my emotions are so raw right now...but they are. I think the stress of taking the 4 kids out in this weather is hard too. Plus Emma does not need to be breathing in this cold air....not the best for her lungs. I guess I just feel the anxiety building up when I have the appointments, taking all four and praying that they are good. It is asking a lot...I know.

Well, Alyssa is almost home from school. I'm so thankful that my girls are alive. They are such bright spots in my life. I feel as though all the medical stuff has aged me beyond my years, but they have kept me young. My eyes feel tired. I'm sure a boost of energy will come soon. I hope..

Thanks for all the prayers. They mean more than you know.

A few more pictures...

This bottom picture is of Daddy and Alyssa before surgery. The other two - obviously one is before surgery and one is after surgery....gives a better picture of the before and after.