Day 341 - New Year's Eve

Ava had a good night  and a good day. She is such a joy to see her. She smiles so big when she sees Anthony and I. She really needs to come home now. Hopefully Monday we can change the trach and get on the home vent and GET a home vent. I am going to push for her to be out before her birthday on the 24th but we still need to get nursing so hopefully we can get a temporary discharge date.

Thanking God for the gift of Ava and praying that 2011 is more miraculous.

Day 340 - 25 Days until Ava's First Birthday!

Ava had a good day. Very happy and smiling. She did go down in weight so they went up to 33 ml.

Thanking God for Ava's progress and praying for Ava's lungs to grow strong...

Day 339

Av had another great day today. She worked with Occupational and Physical therapy today. The nurse played a recording on the tv of me reading a story to her and Ava perked up and got all excited when she heard my voice. Tomorrow she gets weighed again. Still have not heard that we got a home vent yet.

Thanking God for Ava's happiness and praying that Ava's home vent comes in and we can get her home before her birthday...

Day 338

Ava had a great day and slept from 5:30 pm last night until 7:30 am today. She was up all day today smiling and went to bed about 9 pm. Absolutely nothing else to report which is good news.

Thanking God for Ava and all good news and praying for Ava to continue to grow stronger...

Day 337 - 28 Days until Ava's 1st Birthday

Ava got her mickey this morning and it went well. They also got a blood gas which was 40 and got labs for her immunoglobins. She got weighed and she actually weighed less - 6.5 kg, she lost .04 kg because her food was getting backed up into her stomach and then being drained out of her stomach. No wonders why she was trying to nurse the other day - she was hungry! The lung center is still going to try and see if Ava can use a larger uncuffed trach because if she went home on a cuffed trach it could cause scar tissue and we don't want to cause any more damage because the only reason she has a trach is for her lungs. Also because Ava would have to come in and get changed to an uncuffed trach and probably spend the night and this would be after she was already home for a while. I'm not too fond of that idea because at that point she would be used to being home with her family. I also found out that all the home vents are on back order from two weeks ago, and they are looking to get one in for Ava. There are also some other children in need of vents too. Hopefully we can get one next week, and they are hoping to put her on one then after the lung center talks to ENT.

Thanking God that we are finally talking about Ava coming home and praying that we no longer need a trach...

Day 336 - 48 Weeks Old!

Ava had a good night and today they found that her GJ tube (for feeding) was coming out a bit so they took an xray and it looks to be in the right place. Her secretions though, look to have some formula coming back so they are going to have the doctor look into it and possibly give her a mickey (which would be flat against her tummy instead of sticking up like a hose). I forgot to mention yesterday that Ava was rooting and wanted to breast feed. It was unbelievable but I was too afraid to just in case it could hurt her progress. Still pumping though...

Our friend Nancy, who has been a big supporter of Ava from the beginning, came in from Texas to visit Ava. This is her cute pic with Ava.

Thanking God for Ava's excitement for life, and praying for Ava to be strong and healthy...

Day 335 - Christmas

Ava had a rough night last night. She had to get her trach changed from an uncuffed trach to a cuffed trach with .5 in it. She kept alarming the vent and also her O2 saturations went down to high 70s - low 80s. She did fine once that was changed. So she will probably have to go home on a cuffed trach. She is on 30% O2.

Today overall was a good day, but I did break down in tears a couple of times because Ava wasn't home with us. I never thought I would be feeling this way, and I don't cry about Ava very often, but today completely moved me to tears missing her so badly. I cried when I was talking to her nurse, I cried afterward, I cried when we got home tonight from seeing her and I am crying now. I have never ached for something so badly my entire life more than I have ached for Ava. Alexandra even asked our night nurse tonight if we could take Ava home and when she could come home. The kids want so desperately to bring their sister home. They are taking it well, but it breaks my heart. Overall, I am so grateful to God that Ava is here. A year ago, we were told Ava's amniotic fluid went up, but as you know, it did go down a week later. It's unbelievable that a year has past and what has transpired within that year.

Thank you to everyone for your cards and well wishes and to our favorite nurses for Ava's gifts and for the generosity of some wonderful people. May God bless you and I can't wait till the day we can pay it forward.

Thanking God for Ava's life and praying that Ava can live without a trach AND vent and we never need to be at the hospital again on Christmas...

Day 334 - Christmas Eve - 11 Months Old!

Ava slept pretty well through the night and woke up around 7:30 am. They changed her trach soon after and she did well. When I came in this afternoon, she was sleeping in the swing and the vent was alarming. After she woke up she wasn't alarming anymore. We put her bed a bit later, and she didn't alarm either. When she went to sleep later, the vent would alarm and her O2 saturations were in the 80s - 90s so they were thinking of putting the cuffed trach back in.

Thanking God for Ava to be here on Christmas Eve and praying for Ava's lungs to grow healthy...

Day 333

Ava slept through the night but I heard she didn't sleep really well. She was kind of fidgety. But in the morning, she wasn't upset so they decided they were going to change her trach to an uncuffed trach with hopes of the home vent on Monday. They didn't get to change it though because the ENT doctor couldn't come in.

Ava did have a great day and she even weighs more: 6.54 kg = 14.42 pounds.

Thanking God for the gift of Ava and praying that Ava's lungs will continue to grow and never need a trach again...

Day 332

Ava had a great night sleep but her respiratory rate was a bit high (in the 50s). They still kept her cuffed trach to no fluid and hopefully we will change her trach to an uncuffed trach tomorrow. She would be fine when she was sleeping. Her O2 saturations would hover in the low 90s when she was awake so she was on 30% O2 again or sometimes 27%. Her face was really red today and we don't know if it was too hot in the hospital. Hopefully next week now will be the home vent, but we know how that changes, right?!

Thanking God for Ava's life and praying for Ava's lungs to grow strong and healthy...

Day 331

Ava had a good morning today. Maybe it was the Miralax prescription that helped. They did go down to half the amount. She is down on her cuff to no fluid in it. Yeah! They also went down to 25% O2 and all of a sudden after a bit she went down in her O2 saturations. So they went back up to 30% O2. They also gave her some antibiotics, not a huge amount to fight the infection but it won't bother the colonization of her trachea. She went right to bed so it was a really good day again.

Thanking God for Ava's progress and praying for the left lung to grow into a healthy one...

Day 330

Ava had another rough morning and woke up at 6:30 am. Her O2 saturations were hovering in the high 80 - low 90s again. The nurse had respiratory come early and give her the albuterol treatment. It seemed to help after a half an hour. Ava went back to sleep and woke up later in the afternoon. Because the doctor hadn't seen her weight yet and because Ava was acting funny, he said he wasn't going to get rid of the fluid in Ava's trach. One of the theories as to why she is acting upset in the morning is because she could have some gas in her tummy and it's bothering her. They put her back on Miralax to help her with her stool.

When we say "mama" to Ava, she has started to turn towards me now when it's said. She knows her mama! ;)

Ava weighs 6.4 kg = 14.11 pounds, her length is the same at 62 cm = 24.41" and her head circumference is a bit more at 40.5 cm = 15.94".

Thanking God for Ava's growth and praying for her get on the home vent and home to us asap...

Day 329 - 47 Weeks Old!

Ava had a cranky kind of morning again. She must not be a morning person, just like mommy. ;) She took a nap and woke up much happier the rest of the day. Her nurse told me that she had a desat to 85 - 87% O2 yesterday morning, but I never heard about it. Respiratory said she had a horrible spell but that kind of spell is really nothing for Ava.

This week is a big week with her hopefully weighing more. She looks so much bigger to me today than last week. They are hopefully going to go down to no water in her cuffed trach and if that goes well, to have an "uncuffed" trach and then maybe, just maybe on the home vent. She still is having a bit more secretions, but it doesn't seem to be causing her troubles. She slept soundly in my arms today for a half an hour and it was heaven.

These are two photos of her in her "First Christmas" outfit. Notice in the second photo how her arms come to "midline". That's a good thing for baby's to do.

Thanking God for his grace and love and praying for Ava to have an AWESOME week...

Day 328

Ava was upset a bit this morning. It seems to be every morning. She was better later in the day and sat up in her red chair. She seems to be having more secretions coming out so they took some to be cultured. They came back with a few white blood cells but that could be because they are part of her trachea now.

Thanking God for Ava's daily progress and praying for a successful week...

Day 327

Ava had an odd day today. She wanted to lay in her bed and not sit up in her red chair. She was able to get back down to 25% O2. Every morning she seems to have a bit of trouble. They checked her cuffed trach and she was at .5 of water so if she has a good weekend, they will go down to no water in the cuffed trach with hopes to get her onto the normal uncuffed trach. Once that is successful, they will try the home vent.

Thanking God for Ava's progress and praying that the home vent goes successfully and we can bring her home soon...

Day 326

Ava's gas was 48 and she even weighed more. She now weighs 6.34 = 13.98 pounds. She seemed to be doing a bit better. Her nurse thought she acted like she didn't feel good but she seemed better later in the afternoon and she didn't look pale anymore. She did have a desat episode down to the 40s but I guess her heart rate didn't go down. I really don't know what happened and if that 40s was even accurate since she was wiggling around but she did change colors.

We now have over 10,000 pageviews of Ava's blog. Thanks everyone for your support.

Thanking God for Ava's progress and praying for Ava to get home to us and become vent free...

Day 325

Ava was a bit agitated this morning. When I came in she was sleeping and I instantly noticed that she looked pale and looked very tired. After she woke up she would smile at me. Then I held her and she fell asleep but I could tell she didn't feel well. She got agitated when she woke up suddenly so I put her back in bed and the nurse couldn't hear any air moving in her right lung. So they gave her a treatment. Her heart rate and respiratory rate was high. The volumes of air she was breathing was also low. She only had .5 of sterile water in her cuffed trach so they went up to 1 and it didn't change anything. After that she got upset and we had to bag her with O2 and after putting saline into her lungs and suctioning her 3 times, she finally sounded better. Her lungs absorbed two viles of the saline and we couldn't even suction anything out. She took a nap and she was a bit better but her respiratory rate would be in the 50s one minute and the next it would be in the 30s. She definitely doesn't feel good. My theory is she is sick but her body is handling it better than before. She fell asleep around 7:30 pm.

Thanking God for Ava's strength and praying for her lungs and body to grow more...

Day 324 - A Year Ago Today...

Ava had a good day. They sized her cuffed trach to 4.5 with her Doctor. I didn't get to see her today because we had too much snow. I miss her so much. I need my baby home.

A year ago today, is the day we went to the sonographer and found out Ava didn't have any amniotic fluid left. I vividly remember the doctor telling me to have an abortion and that if she was my mother, she would tell me to have an abortion. We are so thankful to God for intervening and letting us keep Ava. Thank you God for putting it in my heart that Ava was going to live and for giving us peace along the way.

Thanking God for Ava's growth and praying for Ava's lungs to continue to grow and get rid of the need of the trach...

Day 323

Ava didn't sleep well last night. Her nurse would wake her up and check her vitals etc. Most of her night nurses will let her sleep. She was a little crabby this morning and she was breathing a bit fast. But she went back to sleep until after 12 and woke up happy and smiling. None of her cultures have come back positive but she is back to her old settings at 25% O2 and satting well. The Lung Center said this wasn't going to hold her back going home, but who knows. I'm glad I got to see her like that to assess how to handle her when she is home.

She did go up in weight to 6.16 kg = 13.58 pounds. Yeah! Quite the increase.

The girls got to come in today and meet the Buffalo Sabres through Stone's Buddies at Children's. They made tshirts and cookies and take a photo with the goalie - Ryan Miller. They had a fun day.

Thanking God for Ava's growth and praying that Ava's lungs continue to grow and be exactly how God created lungs to be...

Day 322 - 46 Weeks Old!

During the night, Ava had another episode where she desatted to 60 and her heart rate went down to 80. She easily was bagged up with O2. I came in this morning early to find Ava respiratory rate in the 50s to 70s. She also was satting around 92 - 93 and her heart rate was 150s and 160s. The doctors rounded and they got cultures of everything but the trach since there were no secretions there. Her white blood cell count came back at 21.5 so they gave her an antibiotic since they think she has another urinary trach infection. Her blood gas came back as 54. After they gave her the shot of the antibiotic she was back to her normal happy self. We shall see what they think tomorrow. I hope this doesn't push us back again.

Thanking God for Ava, and praying that God continues protecting Ava and gets her home to us...

Day 321

Ava had a great day but her respiratory rate was a little bit higher. I was a bit nervous something didn't seem right especially since we are going to go away tomorrow until Tuesday night. Her O2 saturations hovered a bit at 92 but then the nurse changed her pulsox (sp?) to her other foot and it went up to 95 so I thought all was ok. Her heart rate looked fine and she seemed fine the rest of the day.

Thanking God for Ava and praying for Ava's lungs to grow strong and healthy...

Day 320

Ava had a great day. She slept from 9 pm to 6 am and went back to sleep at 7 am till 8:30 am. She took a couple of nice long naps. Monday is the next day they are going to weigh her. If she goes up in weight, they are going to go down in the amount of fluid that is in her current cuffed trach. We are hoping she won't need a cuffed trach and will go home on a regular trach. Once that is figured out and she gains weight, they will put her on the home vent.

Thanking God for Ava's coos and praying for Ava's ability to handle an uncuffed trach and home vent...

Day 319

Ava's gas was 34. Yeah! She now weighs 5.64 kg. = 12.43 pounds. She went up .04 kg. They went up in her feeds to 31 ml. She is also at 25% O2. Another great day! Smiles and her oohhhh face all the time. I got to meet physical therapy and we worked with her and Ava got so excited to show Mama what she could do. She was trying to roll over both sides!

Praising God for the miracle of Ava and praying for Ava's strength and lungs to grow...

Day 318

Ava had another great day. We are so blessed to have her. She smiles at everyone and loves to touch people and play with them. She grabs at people's fingers to hold them and when they pass by her, she smiles at them. They changed her GJ feeding tube today and she has less secretions from her tube (only 10 ml) from the past which was 100 ml. This could have been the problem of why she may not have been absorbing all her food completely. They don't want to give her solids yet due to the reflux, but I am hoping that we can maybe start having her taste foods. Her nurse said there is such a thing as a "tasting bag" that we can put foods into and she can suck on. Neurology came in today and reviewed her because of her past possible seizures. They think they were seizures and they are keeping her on her seizure medication just in case. If she did have a seizure, they don't think it seemed to affect her. Praise God for protecting Ava! The neurologist spoke softly under her breath that "Ava might not be too bad off neurologically." Praise God for all he has done for Ava and our family! Tomorrow they will get her gas again and check her immune system with blood tests and get her weight.

This photo is Ava's new funny face she makes.

Thanking God for Ava's progress and praying for continued protection...

Day 317

Ava had another great day. She slept through the night again. I spoke to her Lung Center doctor today who told me that we do not have to wait a month of her growing to put her on the home vent. We just need her to grow a couple of weeks since she has already proven she can grow to make sure that the home vent isn't stopping her growth. They also are going to check her GJ tube that we have been asking to be checked. The other thing the doctor wants to see is if she needs a cuffed trach to come home. He would like her to not have one since it can cause damage to the inside of her neck as well as she can pull it out and it could cause severe damage. Ava will be weighed Thursday to see if she weighs more. At least we know we don't start over waiting a month once she weighs a bit more.

Thanking God for Ava's life and praying for Ava's weight to grow steadily and her lungs to continue to grow stronger...

Day 316

Ava slept great through the night. She did lose weight though. She is now at 5.66 kg again so they went up to 28 ml per hour from the 26 ml. Not too happy with that since this is something we can control and that is what is holding her up from getting on the home vent. Her length is a bit more - 61.5 cm = 24.22". Her head circumference didn't change either. At least she has shown she can grow despite not having enough calories. Ava is always moving too. Even more when she was on 31 ml before.

Thanking God for Ava's development and praying that Ava gains weight and continues to grow stronger and healthier...

Day 315 - 45 Weeks Old!

Ava had another great day! Praise God! She slept from 9 pm until 8 am again. Tomorrow she'll be weighed so hopefully that will be good and she will increase steadily.

Thanking God every day for the gift of Ava and praying for Ava to continue to grow, grow, grow...

Day 314

Ava has a great day. She actually slept from 9 pm until 8:30 am. Yeah! She takes her two naps during the day and sits in her chair, swing and high chair. This video is of her getting her chest physical therapy and smiling at a male nurse at the hospital. Oh how we are in trouble with a three girls. ;) The nurse that had the kids next to Ava told me that she walked over to turn Ava's movie back on because she was crying it was off. She must have put her hand near Ava, and Ava grabbed it and held on. She must really want some attention. Hopefully tomorrow I can see her a bit longer.

Thanking God for Ava's will to live and praying for Ava to fight any kind of illness...

Day 313

Ava's gas was 46. She will only be getting gasses once a week now. Yeah! That's a really good sign. She also got blood taken for her immune system. The results came back but I don't know what they mean. They were a bit out of range, but I haven't heard anything so it must not be a major concern. I'll have to find out on Monday.

This is a movie where the nurse is showing Ava our family photos and Ava smiles at them and says good night.

Thanking God for these wonderful days and praying for Ava's continued protection...

Day 312 - Ava's First Tooth

Ava's gas was 35. She was satting a bit lower earlier today around 93 to 95, but went up after having a nap. Today I found out we received the Care at Home Approval Letter that is dated for January 3rd. We are able to take her home and get nursing for January 3rd. She isn't ready to go home yet, but this is a huge step that we have been waiting for. Now we just need her to get on a home vent and get discharged. We can change the date and it only takes less than two weeks to get that approval once the hospital gives us the exact discharge date. We are heading in the right direction and at least we aren't waiting on the government to get our approval.

Ava's first tooth finally came in! It is on her bottom left side! My baby has a tooth poking through! Praise God!

Thanking God for Ava's life and her growth, and praying for Ava to be protected from any sickness...

Day 311

Ava's gas was 28 today. REALLY Great! It must change based on how the nurse gets it. She got her second shot of Synagis for RSV last night. She slept all night from 8pm until change of shift. Unfortunately, due to our horrible weather tonight I didn't get to go in and see Ava's smile. We are missing her like crazy. Tony was gone for two days, so he has missed her for 3 days.

Ava weighs 5.66 kg =  12.48 pounds. Last time was 5.6 kg. So she gained a bit of weight.

Thanking God for Ava's great gasses and strength and praying for Ava's left lung to grow stronger...

Day 310

Ava's gas was 47. She slept most of the night and woke up at 3:30am for an hour and went back to sleep until 7:30am. She was all smiles today and PT had a great time with her working on her head control and sitting up. Everyone loves walking by her bed and see her smiling. She will be weighed tomorrow and this is one of the big things holding her from coming home.

Thanking God for Ava's progress and praying for Ava's continued protection from sickness...

Day 309

Ava's gas was 37. She slept from 9pm until 3:30am. She did lose weight again - she now weighs 5.6 kg = 12.35 pounds. They decided to up her feed to 26 ml and they will weigh her on Wednesday instead of Thursday to make sure she is gaining. If she doesn't, they will go up in her feed again.

Thanking God for all of Ava's smiles and praying for Ava's lungs to continue to grow strong and healthy...

Day 308 - 44 Weeks Old!

Ava's gas was 33. She slept through the night again. She had a great day and her nurse loves to give Ava her work outs. See Ava's video with her doing tummy time. She slept in my arms for over 30 minutes and I got her snoring. Her nurse said she cried when I left but I'm not sure if it was me leaving. Can't wait to see what the week brings. Ava's smiles light up my world!

Thanking God for Ava's lung growth and praying for her to keep amazing us...

Day 307

Ava's gas was 32 again today. She didn't sleep much throughout the night but was very happy and smiling big smiles. Ava loves to sit up and she doesn't like to lay down anymore. I am going to have to try and come in more. She loves to play with her feet now. She is acting like such a normal baby. She even likes to watch hockey with Daddy.

Thanking God for Ava's abilities and praying for her to be constantly protected from illness...

Day 306

Ava's gas was 32 today. Another good day. She didn't want to sleep much during the day but she did go to bed at 9pm. The news from the doctor of the CAT scan was different from what the scan reads since the person that reads it wasn't exactly looking for what Lung Center was looking for. Lung Center didn't find out anything different from the scan, but I am going to read the report tomorrow.

Thanking God for every day with Ava and praying for Ava's constant protection to get her home... Also praying for Ava's little baby neighbor who is need of prayers...

Day 305 - Happy Thanksgiving!

Ava's gasses were 28 last night and this morning. Later this afternoon, her gas was 32. They went down to her rate to 10 and she still is on 30% O2. She is completely off sedation this afternoon as well. She wakes up a bit when she hears a noise in the PICU. I think I have some good news about her CAT scan but until I have it confirmed from a doctor, I'm not going to say yet. ;)

We want to thank everyone that has helped us this past year. Without you (and of course God), we would haven't gotten through this. There is so many people to thank so I am only going to name a few: my parents for watching the girls anytime we need them to and everything else they have done, Amy and the other people from my Mom's church that have made meals for us twice a week now for many months, Rachel for coming to our aid and letting God guide you to help us save Ava, my MOPS friends who were willing to watch the girls while I was in the hospital and fervently prayed for Ava the day she was born, Nickole who has helped clean my house numerous times, Connie for you constant listening to our daily adventures and sympathetic ear as well as becoming "Aunt Connie", Becky for all the days you have watched the girls, helped me organize and prayed for Ava countless hours at a time, Knox Church for all your prayers and donating to our family so we could have freezer meals, Jessica for organizing our freezer meals, and the nurses who have fallen in love with Ava and take awesome care of her, who have also listened to me every day and night (probably for hours) talk about Ava and how God has told me she is going to make it. I really could go on and on because there are so many of you, so please don't think I am leaving you out, because we are so thankful. So here's a list of just a few other things that you all have done: watch the girls, bring us food, pray for our family, clean the house, send us cards, gift cards and presents for Ava, surprises in the mail, phone conversations and constant support. God has brought all of you into our lives to help us through a time where I really wish we didn't need any help, but we do. I do hope that Ava's adventures have changed your life as much as she has changed ours.

Most of all, I want to thank you God for letting us keep Ava here. My life has never had such incredible highs before. I sometimes leave the hospital so high on Ava's smile, it's unbelievable. You have shown me how wonderful my life is and how much I need to be one with you. Thank you for bringing me my husband, my beautiful girls, my parents, and all our other family and friends. Our life together is about as wonderful as you can get here on earth. Most of all, thank you for your promise with Ava and showing me how great you are. Every day is another day closer to my three ducklings.

Thanking God for Ava's amazing journey and for God letting Ava be here with us and praying for Ava's continued protection...

Day 304 - 10 Months Old Today!

Ava's gas was 32 today. She is just on a little sedation. After we got the approval to have photos done, around 10:30 am, we got the call that a nurse was going to put in a PH probe to test and see if she has a lot of acid reflux. It's a tube than runs through her mouth down her esophagus into her stomach and the test last 24 hours. She was scratching at her mouth and eyes so they were pretty red when we took pictures. Thank goodness for Photoshop.

Thanking God for 10 months with Ava and praying for things to get easier...

Day 303

Ava's gas was 35 today. She didn't get the CAT scan done until later this afternoon and the bronchoscopy didn't happen till after 5pm. We did find out the Ava's left bronchi's look bigger and more open and the doctor was easily able to maneuver down them. Praise God! She only got one a couple of weeks ago, so there has been a good change. They also saw no irritation and no secretions. They let her off the paralytic around 6pm and she got agitated but I was able to calm her for a bit by patting her back just like she gets when she gets chest physical therapy. She finally went to sleep with more sedation. We did find out that she has a urinary trach infection. My poor baby has one of those already.

Tomorrow we are supposed to get family photos done for our Christmas cards. We'll see how that goes and hopefully she is not completely sedated ;)

Ava grew to 61.5 cm = 24.21" in length, and her head circumference measured less at 40 cm =15.75".

Thanking God for Ava's continued progress and praying that we can figure her out and get her home...

Day 302

Ava's gasses came down to 35 and 32. Her white blood cell count went down to 10. Her O2 is back down to 25% and all of her other vent settings are the same except for her breath per minute rate was 30, then went down to 25, just because she is still paralyzed and doesn't breath on her own. I tried to get her off the paralytic yesterday and that didn't work. I tried to the point of crying. I really feel there is some missing info through this whole thing and I know the doctor who was on-call the night this happened, was scared for Ava and didn't exactly know how to treat her, otherwise he would have taken the paralytic and sedation off that night. Her ears are clear as well.

They are going to take advantage of her being paralyzed and check out her trachea and lungs tomorrow. They are also going to have a CAT scan to find out what happens when the peep of the vent is off her lungs and see what happens - if the lungs collapse or not.

They said that missing two doses of steroids probably wouldn't have caused this. Her blood pressure didn't change which is one sign of missing a dose. The only thing variable is Ava, and you can never understand exactly why her body reacts to things. It's kind of ironic that the staff basically blows off Ava not getting her two doses, when if we forgot to give her the doses we would probably be considered bad, negletful parents. If a nurse was in our home and forgot to give her TWO doses and not realize she was even on steroids, we would probably want the nurse to be let go because, after all, that IS her job.

I also had another discussion with a staff member about Ava's growth and she insisted that Ava had grown on her 20 ml of food that we had decreased to. She feels that Ava has a growth problem which I completely disagree with. Look where Ava came from - 1 lb 2 oz. - Sister's Hospital had no problem fattening her up.  I told the staff member at least 3 times, that Ava did not grow on 20 ml and that is why she hasn't grown in a couple of weeks. I looked up when she went down to 20 ml of food, and when that happened Ava weighed 6.2 kg. Soon after, Ava got sick and she ballooned up to 6.48 because of retaining fluid which is typical when she gets sick. After she got better, her weight went down to 6.18 kg and then 6.16 the week after that. That shows she never had a true weight gain on the 20 ml as the staff member said she had. What bothers me, is that she would not listen to me and after I repeated it 3 times, she finally said we could look it up. I feel like my knowledge of Ava is viewed as inaccurate and that I am ignorant to Ava's history. These stats are numbers I memorize without any effort and live by.

Ava did have an increase of weight due to the increase of 24 ml of food. She now weighs 6.04 kg = 13.32 pounds.

Thanking God for Ava's stats to be back to normal and praying for strength and knowledge...

Day 301 - 43 Weeks Old!

I don't even know how to begin this post. Ava went down to 87% O2 at 6am this morning and stayed there. She was a bit upset and we thought it was because she didn't like her nurse. Her heart rate was a bit high as well. They gave her the asthma treatment and chest PT and she was fine all day until 4pm. Her nurse (who normally doesn't have her), noticed she was getting a bit agitated in her red chair and put her back in bed. They gave her chest PT and she got really mad and desatted to 67. I heard she popped off the vent too, but I'm not quite sure what happened. By the time I got in, she has an IV line in her hand. They told me what happened and I said she was sick. She was on 30% O2. The doctor on call for tonight, decided to put a femeryl line in since her PIC line was gone. He asked what % steroids she was on, and her nurse said none. I showed them Ava's steroid wean calendar and told them what dose she should be on. Her nurse today didn't even know she was on steroids. She didn't get her 8am dose of 6mg, nor did she get her 4pm dose of 4 mg! If this went longer, it could have major side effects! The doctor put her on a sedative and paralyzed her again. She was at 100% O2, but now is down to 40% and a rate of 40. Her gas only went to 69 and I'm hoping she gets off the paralytic tomorrow. I am thinking she may just have an ear infection since it wasn't checked.

Oh how I wish I had nothing to post like last night.

Thanking God for him catching mistakes, and praying that the docs and nurses have wisdom and knowledge... And me too...

Day 300 - 65 Days until Ava is 1!

Ava didn't get a blood gas today because she only gets them Monday, Wednesday and Friday's. So unbelievably (and thankfully), I don't have much to report. I didn't get to go in today because I didn't feel well. Anthony did and he said that Ava looked really happy sitting in her chair.

Thanking God for these great days, and praying for Ava's continued success and growth...

Day 299

Ava's gas was 41 today. She is doing so great. She slept from 9pm - 6pm. We are having so much fun with her. Her heart rate is around 130 sleeping and she sats from 95 - 98%.

Thanking God for these great times with Ava and praying for continued protection over Ava and our family...

Day 298

Ava's gas was 34. She is only getting gasses Monday, Wednesday and Friday now. They went down in her O2 to 25%! Room air is 21%. So if she continues satting above 95, she may not need the O2. Praise God! They also went down on some of her back end pressures.

This is a funny photo of Ava - propped up in her chair and watching a movie, with her remote in hand. I guess she laughs so hard at Sesame Street and all the staff get a kick out of her.

Rehab saw her and they want to get her hearing evaluated. They do think she is only corrected to the age of 1 month - 3 months depending on what she is doing. They are going to continue to work with her on a multitude of levels.

Unfortunately, I have a slight cough and runny nose, and the girls have slight runny noses so I am wearing a mask at the hospital and I get so concerned. I could just have allergies though.

Thanking God for the O2 levels going down and praying that she continues to grow stronger and healthier with that left lung looking normal...

Day 297

Ava's gas was 37. Awesome! She slept from 10 pm to 5:30 am. She also slept through most of the day and that could be because she got her 6 months shots today. The doctor from rehab came in and evaluated her today and she was happy with her head control and grabbing at toys. Her heart rate is a bit higher than normal when she was sleeping - about 120 - 130, I am hoping this not a symptom of illness especially with our ladies at home having slight runny noses.

Thanking God for Ava's great gasses and praying for continued protection from viruses and germs...

Day 296

Ava's gas was 44. It's great they are pretty staying the same. They took her PIC line out today. She also slept from 10 pm - 5:30 am and woke up really happy and went back to sleep a little while later. She had a great day with her nurse and physical, occupational and speech therapy saw her today and worked out all those cute body parts.

I made another DVD of our photos from this year and she absolutely loves it and stares at it. The nurses say that her favorite part is looking at her photos.

Thanking God for all of her smiles and praying that she continues on a healthy road...

Day 295

Ava's gas was 53 today. She has been happy all day and slept from 9 pm to 4 am, up for a couple of hours and went back to sleep. They might get rid of the PIC line tomorrow since it has caused her infection.

Ava weighs 5.86 kg = 12.92 pounds. She went down in weight which I thought was happening when the went down 9 ml of milk. They went up to a total 24 ml of food. She is still the same length and head circumference.

Ava did make the move to the other side. It's a big larger but could possibly be more noisy since there is only a curtain. I made her a DVD tonight of Ariana's first birthday and she loved it. I held her and she fell asleep really happy (and I was too).

Thanking God for moments of pure joy with Ava and praying for God to continue to protect her and our family...

Day 294 - 42 Weeks Old!

Ava's gas was 44 today! She is completely off sedation and very happy. We don't get much mucous from suctioning and she is still sleeping really well. She slept from 9pm - 5am and only woke up for a half an hour twice.

Alexandra came in today and she played with Ava a bit. Ariana is home a bit sick and daddy's asthma is acting up. Alexandra had such a wonderful day with a sister. A day Alexandra and Ava have never had with each other. They played with each other, smiled and at one point Alexandra was holding Ava's hand, pulled it away to give Ava her dolly and Ava held her hand out for Alexandra to grab again. She didn't want her dolly but to hold her sister's hand. Ava has only seen Alexandra probably around a dozen times, but they are still bonded to each other. Thinking of it makes me tear up and I love that even despite all that all of us have been through - without each other - we still are really all together as a family and nothing can change that.

I finally got to take photos of Ava in her second Halloween outfit - a flower - today. She was sick on the day of Halloween that we were going to put her in this outfit. Enjoy!

I heard that we are moving tomorrow to the other side of the PICU because RSV and flu season is coming and it's safer on the other side for Ava. Oh boy, another place to move to and after we just decorated Ava's room for Thanksgiving. ;)

Thanking God for lots of smiles today, seeing pure joy in Ava's eyes with her big sister Ali, and praying for more days but with us at home...

Day 293

Ava's gas was 47 today. She is off of her Fentaynl sedation - Yeah! She is doing so good. Praise God. So we need 3 more weeks of her doing good and not sick and then they will try the home vent and then we need four weeks on the home vent. She is so happy and smiles pretty much all day. The only time she gets upset is when she needs to be suctioned or she is tired.

Thanking God for these days when all she does is smile and stick out her tongue and praying that these days last forever...

Day 292

Ava's gasses were 48 and 49 today. REALLY good. She was very happy today, and I got a great video of her smiling and sticking out her tongue. She did good with her physical therapy and held her head very well.

The meeting went well today. Three of Ava's primary nurses came in today for her meeting. Two of them even came in on their day off. We are so blessed to have them and I hope God blesses them. We discussed Ava getting sick and how to react to it as well as getting more physical and occupational therapy. They decided to get rehab involved and they can start a plan. We also are going to have a "clinic" day so that all the docs can see Ava that need to. Believe it or not, it has almost been 6 months since they have checked her eyes. We had hoped she would be home by then. It was discussed that we are going to get her off the sedation and lower her steroid dose. We will keep her vent settings stable so she can grow and then try her on the home vent after those settings have been stable for a month. Then they would want her stable on the home vent. In the meantime, she needs to fight off any illness.

I love what our friend wrote yesterday that she was an addicted to Ava. I think I will call all of us who are addicted to Ava as "Ava Addicts" and we will all have to have "AA" meetings. I can't wait to the day we will celebrate Ava's victory over prematurity.

Thanking God for our beautiful daughter, and praying that her immune system can learn to fight off any illness...

Day 291

Ava's CO2 blood gas was 67 and 48. She slept pretty much all night and was happy most of the day. The only time she was crabby was when she needed a nap. She loves to sit up and watch tv. When I came in tonight, she would look at me, then back to the tv, then to me, then back to the tv. Her nurse tonight said that if she blocked the tv, Ava would get mad. She is so funny. Oh how I just want to scoop her up and love her up all day.

Tomorrow we are meeting with all of the attending docs and the lung center doctors. Hopefully we can get some decent news since she is doing pretty well this week.

Thanking God for Ava's lower blood gasses and praying for that left lung to not be collapsed...

Day 290 - 75 Days until Ava is a Year Old!

Ava's gasses were 55 and 65. She went down on her Fentynal to 3 and hopefully they will go down tomorrow. She didn't sleep to much last night again. She's been up partying with her nurse. This photo is with another one of Ava's favorite nurses. I came in tonight and rocked her to sleep a bit again. But then she woke up and we played for a little while and she was in her red seat that helps her sit up. She LOVES that seat.

They re-weighed her today and she still is 61 cm and her weight went down to 6.19 kg.

Thanking God for Ava's head and back strength and praying for the meeting on Friday with the docs to go well...

Day 289

Ava's gasses were 68 and 61. They went up to a peep of 10. My concern with that is that it's going to push the right lung even bigger and it won't open up the left lung. She didn't sleep from 1am on this morning and had a fit around 7am. Her trach cultures came back still positive so she is sick and that's probably why she is still upset.

Ava's former NICU nurse came in with me tonight to visit Ava. This is a photo of her with Ava. I am so glad to have her and be a part of Ava's journey.

Thanking God for Ava's head control and praying for Ava to grow stronger...

Day 288

Ava's gas was 65 amd 60 today. Pretty good gasses. She didn't sleep from 1 am on but did take a couple of naps. When I came in, she was all smiles and sticking out her tongue at me. Oh how Ava has my heart and makes me turn to mush. I got to hold her standing up and I rocked her and she was basically asleep in my hours. They didn't give her any Ativan today and was down to 4 on the Fentanyl (sedation). Tomorrow it should be lower.

Ava went down in weight - 6.16 kg = 13.58 pounds, her length went down but that just means it wasn't right either last week or this week - 59 cm = 23.23", and her head circumference went up from to 40.5 cm =  15.95.

Thanking God for Ava's smiles and praying that she can get sleep...

Day 287 - 41 Weeks Old!

Ava's gasses were 65 and 66. They were able to come down on her Fentanyl sedation to 5 and she didn't need any Ativan (sedation too) at all today. They made the Ativan available if needed and not every 6 hours. She was pretty much all smiles today. She has been desatting a bit and having to bag her to suction her out. Her heart rate goes down a bit when that happens as well. This doesn't happen very much but it scares her nurses. She didn't sleep from 3am to 6am this morning and then was crying and the situation that I just talked about happened. They couldn't even bag her very well because her lungs weren't compliant. She is sleeping tonight though.

Thanking God for all the smiles and praying for the doctors and nurses to have peace and wisdom...

Day 286

Ava's gasses were 67, 75 and 67. They went up on her Peep to 8. Her gas then was 59. She had a temp of 100 but it did go down throughout the day.

I didn't feel too well today so Anthony and the girls went in to drop off my milk and see her for a minute. I miss my baby girl. I wish I could be with all day, every day like my other girls.

Thanking God for Ava's progress...

Day 285

Ava's gas was 64 today. She got the bronchoscopy done and it went well. They were able to see the left lung and get down the left bronch and spray it with saline and steroids. They were also able to get some mucous out and also saw some white blood cells. They thought the right bronch looked good and the left bronch wasn't as floppy as the other day. Overall, the doctor said he was encouraged.

When we came in tonight, Ava was a bit upset when get her trach ties changed but when I talked to her for a bit, she opened her eyes (she keeps them shut sometimes when she's mad) and she saw me and she would smile and talk to me. I read her "Peekaboo Kisses" and she talked to me and Daddy for at least a half an hour. When I see her like that, all my fears are wiped away. Praise God for all that he is done for us.

Thanking God for Ava's lungs to be growing...

Day 284

Ava's gasses were 77, 70 and 70 again. They didn't do any changes to the vent settings but her gasses went a bit higher than yesterday's and the day before. Ava's nurse today who hasn't had her too much, mostly when she is getting sick or is paralyzed, said she was really crabby during the day and kept giving her drugs to sedate her. I came in tonight and the night nurse didn't want to wake her because of that. But Ava woke up to my delight and she was acting a little spastic which I hear about, but I walked over to her, talked to her, suctioned her trach, changed her wet diaper and she immediately got better. I picked her up and rocked her and patted her back, which I love to do, and she loves as well. She has all these lines from her antibiotics, sedation, and monitors, so it's kind of difficult. I can't wait for the day for everything to be gone and it's just Ava smiling at me. I read her our favorite book "Peekaboo Kisses" which she absolutely stares at and has parts were you can touch and feel. If you haven't seen the book at all I highly recommend it. All babies seem to love this book and they even have a few others, but my little ladies when they were babies, tore the two books we had apart. We put her back in bed in her red seat that helps prop her to an almost sitting totally upright position (depending on how much you prop it up) and I put her monkey around her neck to stabilize her neck and she went to sleep. She kept looking at me when she was trying to fall asleep and it looked like she was thinking "you're not going to be here when I get up and I like you." Maybe she really is getting used to certain people and if we aren't around, she can't help but be sad. Oh how I wish I could care for her 24/7.

Tomorrow they are going to do another bronchoscopy probably in the early afternoon. They are going to put the camera right into the left bronch and spray a steroid right on the spot of her left lung that is bad. They think that it's not getting the pulmicort that she needs because the tube is so small. They are also going to spray another type of steroid onto her left lung that will help clean the lung and get rid of any mucous that is there. This could possibly make her lung grow a great deal, a bit or not at all. Pretty exciting though. Now I feel like we're getting down to business. Coming up with ideas and implementing them.

I also wanted to edit yesterday's post but I couldn't for some reason so this is a video from yesterday.

Last night I found a great podcast from InTouch for Living featuring Dr. Charles Stanley called "The Thrill of Trusting God". It basically told me that if you really, truly believe in God and you have prayed to God to help, and you have had a mental image of the result of your prayer from God, then you must stop asking and thank God for what he is going to do. Coincidentally, a friend of mine told me the same thing earlier yesterday before I even heard this podcast. Now, I'm not sure if I have ever shared this with any of you before, but while I was pregnant with Ava, we were walking out of Target and I turned around to look at my two other little ladies and they were walking behind me in a row, from tallest to shortest, just like little ducklings. I instantly felt like one is missing, and I could just see little Ava walking behind Ariana. I have felt that way for some time and I have shared it especially when I was in the hospital hoping Ava wouldn't come right away. That image has given me faith and a sense that I am supposed to have three living children. God has given me that image and I feel like he gave me one more. I can imagine Ava standing up in front of a room full of people, when she is older, and speaking about her life journey and how God has changed our family and saved her life. I look forward to that day, and hope that you all can be there to see it as well.

Praying for Ava to have peace and thanking God for the miracles he has done and will do for Ava...

Day 283

Ava's were 57, 62 and 58. They took her off the paralytic today and she was a bit crabby and they gave her some more sedation. Her shot of Synagis finally came in today. Synagis is a monthly injection designed to help protect preemies and other high-risk babies from severe RSV disease during RSV season. Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups like Ava

Ava weighs 6.48 kg = 14.29 pounds.

Praying for Ava's lungs to grow and not need a trach...

Day 282

Ava's gasses were 56, 61, and 59. She is still not off the paralytic and she had her CAT scan today. They found that her right lung has still taken over for the left lung but that they right lung looks really good. They said the left lung looks a bit more open but it still is collapsed and the left lung stem looks much smaller than the right. They don't know if she will outgrow this and get better. They think maybe it would help if her left side was facing up and allowing the left lung to spread. I spoke with a lung center doctor that I haven't talked with before and we were going over her CAT scan. We looked back and noticed in May that she had another CAT scan and WOW - what a difference it is. It looks moth eaten and white and grainy while this October and even the August one looks quite clear on the right side. He said it gave him hope. There is a surgery that can be down to take out that bad part of her left lung, but it is very risky and with seeing that scan, he feels better about her lungs growing. They don't understand why the right lung can't compensate and cause the CO2 gasses to be lower. He even said that going 6 weeks without fluid should cause BOTH lungs to be terrible, not one, so he has no idea if that was even the cause of her illness.

I found something on the internet about Johns Hopkins. Does anyone know anything about them? Should we get help from somewhere else? The lung center doctor did mention speaking to other docs across the country. Maybe I can mention Johns to him.

Praying for the doctors and nurses to gain wisdom and knowledge to heal Ava's lungs... Please God...

Day 281

Ava's CO2 blood gasses were all really good today: 63, 50, 52, 46, 42, 63. They got her O2 down to 40%, her pressure back to where it was at 24, and her rate is at 25.

They did a bronchoscopy today to see how her her left bronchi is doing. They found the right lung to look normal and growing well. Her left top opening looked better but the one part of her lung is still collapsed and doesn't look any better. They are planning to do a CAT scan of her lungs tomorrow to see if they have changed and to formulate a plan in moving forward. The doctor says he still doesn't understand why she gets high blood gasses when overall her lungs look pretty good. He also said Ava does not relate to any other baby he has seen before and that he is trying to figure her out. He is our favorite doctor right now and he goes off as the attending doctor the end of the week. Thank goodness he was on this week. I wish he could really be Ava's primary.

I was able to talk to neurology today who told me that the EEG brain waves had slowed in her brain but that was because she was/is on methadone and adivan.

Ava is a bit longer: 61 cm =  24.02" from 59 cm last week and head circumference is 40 cm = 15.75" from 39.5 last week.

Praying for Ava's left lung to grow...

Day 280 - 40 Weeks Old!

Ava's gas was 100 this morning. She went black again but they didn't have to do chest compressions this time. They were able to bag her up. They got another gas of 130 and put her back on the oscillator. So sad and devastating. Then her gas went up to 135 and they put her back on the conventional vent. She was at 100% O2 most of the morning and then got it down to 60%. She went down to 104 and then they got a gas of 67 and 55. She didn't look really good (dusky - grey & purple) this morning but she started to look pinker later in the afternoon. She had a moment of desaturation when her O2 went down to 60% and they upped her O2 to 100% then they were able to get it down to 60%. They put her on anti-seizure medication because they think she had one on Friday and they wouldn't know if she has a seizure when she is paralyzed. They think she may have had a seizure because they were randomly giving her adivan and not weaning it properly if she really was getting a lot of it. They also gave her immunoglobulins to boost her immune system. Her trach culture came back with signs of an infection in her trach again.

The doctor showed me her CAT scan and told me that the spot where they think she had a seizure is small and that part of the brain controls her upper limbs movement. We have seen her move her arms really well, so it most likely doesn't bother her. The area of the brain where the fellow said was dead, may be that her brain stopped growing or it could be fluid. Please pray that her brain continues to grow. We have seen her head grow, so hopefully that is not the case. Overall he said that if this was his daughter's brain scan, he would be pretty happy with her being a 24 week preemie and being on 100% O2 multiple times. Thank God for this! I have always felt like she was and is being protected. But it's hard when you still have to go through these awful situations.

I am very thankful today for some of the elders and prayer warriors from Knox Church came to the hospital to pray over Ava. They were very respectful of Ava and washed up their hands and didn't touch her, but just prayed over her with all they had. I felt very strongly about James 5:14-15 - is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven.

Praying for Ava and our family to have relief and for it to get better...

Day 279

Ava's gas was 100 this morning when she was upset then they took it again and it was 76. She had a fit today and we couldn't get her to calm down and she started to look purple so they bagged her. She finally calmed down. She must be getting sick again. We never heard back from neurology about her EEG and the fellow on today (because the doctor left 10 minutes before we got there), couldn't show me where the small area was where she might have had a seizure when she was little. She also told me that her brain in front might be dead area or not growing and I said I thought that was water? So we are still not getting answers.

Tonight we got a call around 10pm to tell us that Ava had a fit and turned black and her heart rate went down to 50. They had to do chest compressions on her and she finally sort of woke up out of it and was smiling afterwards. We went to bed having a feeling it was going to be worse. They also said they were going to have neurology come in stat to look at her.

Praying for relief and peace and for Ava to not be sick again...

Day 278 - A seizure?

Ava's gas was 71. Good that it is staying the same. Her nurses today think she has a seizure around 7:30am this morning but they don't know for sure. I didn't find out until 4pm. She kept pulling her arms out in front of her and popping her eyes wide open and she did this until they gave her Adivan. They took a CAT scan of her brain and didn't find anything that happened today. They think she might have had a small seizure a while back but they don't for sure. Otherwise her brain looks pretty good for a baby born at 24 weeks. They did find some water around her brain between her brain and skull, but I guess that's typical of a hospital bound infant. It may also be for any infant in general but I'm not sure. They got an EEG as well and we still don't have the results of that. The doctor also got a metabolic test done to see if she is either being fed too much or too little. They test it by hooking a piece up to her vent equipment and seeing what the amount she breathes and how much calories she burns. If she is being fed too much, that could be the cause for her high gasses. We should know these results tomorrow. We still don't know anything from immunology. She is still on methadone from being sick which I don't even know why she is on and they will hopefully wean.

The other bad part of today is we found out from our insurance that we cannot get any help with our wet basement. We built our home a year ago, and our basement has always leaked. In fact, it got wet all over the floor and we have lost a lot baby equipment, toys, framed pictures, papers, etc due to mold. Our builder told us this was typical, but after talking to the town building inspector and our insurance company we found out it was not. We lost things that I have had for all our children: a car seat, multiple baby toys - big and small, a swing and so much more. I would say at least a couple thousand dollars worth of stuff. Thank goodness our clothes have been in bins. This is something that would be upsetting and hard for a typical family, but for us it seems to be a mountain the size of Everest.

Praying for peace and for Ava to get out of this being a healthy, strong baby...

Day 277

Ava's gas was 71 again. It's good that her gas is the same and the pulmonologist doesn't mind that it's that high. They went down to 40% O2 and she is still satting well. She slept most of the day even when we were there today.

Praying for Ava to come home this year...

Day 276

Ava's gas was 71. They put her on methadone every 8 hours to calm her down. The adivan just wasn't helping enough because she was having withdrawal symptoms. They took lots of blood tests today to test her immune system. I didn't hear from that doctor so I don't know when the results come back. Her fingers were also peeling and I remember that happening when we were at Sister's Hospital. I don't know when it was or if I even wrote what they said it was. They even said it could be because her vent hosing was hot yesterday and she holds onto it a lot. I really hope that isn't the case and that she didn't burn her poor little fingers.

We have reached over 7,000 views of Ava's blog today. I'm so surprised sometimes at how many views we get. Thank you all for caring and praying!

Praying for Ava to come home and be free of the the trach and vent...

Day 275

Ava's gas was 70 today. She was upset part of the day which they feel is due to withdrawing from the drugs. She threw up a bit to on me today. She is down to her rate of 5 and the only thing left to change is her O2 being 40%. Her immunity levels are low so they are bring in immunology to check into her. That could be why she is sick and she could hopefully outgrow any immune deficiencies. Not sure what to think about that. It could be why she has been sick so often.

Ava is only being weighed once a week now.

Praying for Ava to get on the home vent and come home (and then grow enough lung tissue to never need a vent again)...

Day 274

Ava's gas was 65 today. She is awake but not really smiling. They went down her breathing rate to 20 and got a gas of 72. When I was there tonight she didn't want to be held and she had a fit until we put her back. She seems to have quite a bit of stool and her stomach is a bit enlarged and hard.

Ava weighs 6.2 kg = 13.69 pounds, 59 cm = 23.23", and her head is still 39.5cm.

Praying for Ava to be happy, peaceful and grow home to us...

Day 273 - 39 Weeks Old and 9 Months Old Today!

Ava's gas was 66 this morning and they took the paralytic off. She was getting mad every once in a while and they checked her gas and it was 87. She did have some calm times. Her other gasses were 78, 66 and 60. She basically slept most of the day and was not happy but did have some good wakeful times. She did peak her eyes open for me and smile at me a bit. Oh how I loved that. ;)

Praying for Ava to get home and be with our family...

Day 272

Ava's gasses were in the 60s today and they finally put her back on the vent in the early afternoon. Her gas came back 87 but they changed her settings from 30 bpm to 35 bpm and she was better. She still is paralyzed and sedated but hopefully that will come off in the early am. She was moving her toes when we were there today. I think she heard us.

Praying for my baby to come home for Thanksgiving...please God, I know it would be hard but with you all things are possible...

Day 271

Ava's gasses were in the 50s and 60s all of today. They have been able to wean her settings and I'm hoping she'll be back on the vent sometime tonight or early tomorrow. Thankfully it wasn't in her blood so they have been able to give her steroids for her lungs and antibiotics that cover it. She still is being sedated and paralyzed and hopefully they can wean that tomorrow as well.

Thank you for all your prayers! Keep them coming, we need to keep her from getting sick again and to come home. It will happen but we need your prayers still.

Praying for Ava's healing...

Day 270 - 95 days until Ava's 1st Birthday

Ava's gasses have been all over the place. 90s, 80s, 70s in the early am. Then they went back up to the 90s. Finally this evening she is coming back around. They got a gas of 82 at 12pm, 64 at 4pm, and then 55 at 8pm (they went down in her amplitude to 60), 60 at 9pm (they went down on the amount of jiggle that is shaking her on the oscillator). She is still completely sedated and paralyzed. She has start wiggling a bit and they give her some more sedation for her to stop.

This is completely awful but I know she isn't going anywhere. We will never give up hope. Matthew 17:20. I'm telling her lungs to grow.

Praying for Ava to fight this and never be sick again...