Day 1042 - A year ago today...

If you look back to a year ago today, you will find that Ava came off the ventilator for 15 minutes. It was the start of her quick journey to being vent free. I remember Ava's doctor saying that a year from then Ava could be off the vent. I remarked that a year from now she could be trach-free. They laughed and I hoped (and prayed). Fast forward to now and God has granted our prayers. In addition to be vent & trach-free, we were told that Ava does not qualify for a special needs teacher anymore. Ava is "normal" or an average child. She is so much more than that but after being told that Ava would be severely mentally handi-capped and also being in the hospital for so long, Ava has surpassed everyone's dreams of her. I look forward to seeing God's plan unfold for her.

Today is also the last day that Ava has to take Viagra aka Revatio for her heart. One more medication is gone - Woo hoo! I am also going to ask her GI in the coming weeks to see if we can get rid of her Prevacid for acid reflux. How amazing that would be! She would only take her inhalers and vitamins!

Ava also has been up and down in her weight - 13.5 kg, to 13.1 kg to 13.15 kg. It's hard to guess how much Ava is eating but she is still on 600 ml of Pediasure. Our goal is for her to be fully fed orally by this summer and no long need the g-tube. She has some issues with chewing, her mouth gets tired, so she just needs to strengthen. Same thing with her legs. She needs to strength them as well. The physical therapist who came in to test her said her ankles were still weak and need to get stronger. We will be working on exercises for her since we fired the PT last week due to her scheduling issues and gossiping with the nurses. Ava's sisters really enjoy helping her "work out" and come up with activities to motivate Ava to work. Ava does go up and down stairs but we need to continue to work on those often.

Praising God for Ava's growth in a year and praying for Ava to eat and strengthen...

Day 1016 - World Prematurity Day

Ava didn't win the trip to Disney but thank you to everyone that voted! Hopefully we can make it there in the next few years. As soon as we get her prize package, we'll post a photo of that as well.

Thanking God for the past 3 years and the amazing results and praying for Preemies & their families across the world...

Day 1014

We met with Compassionet from Univera today. They are thankfully keeping us on their plan until the cold & flu season is over as well as Ava's surgery in the Spring. They have helped our family so much the past 2 years with art therapy for the girls, massages for Anthony and I, and much more. The nurse practitioner mentioned that Ava looked exactly like another little girl in Rochester who has Arnold Chiari Malformation. I have looked it up and I don't know how you can diagnose someone with that nor does Ava have any of these symptoms. I know that Ava does look like a child that has been on steroids but our eyes have an almond shape appearance almost like a child with Down's Syndrome has. I don't know if that is why people in the medical community like to diagnose Ava as having some sort of syndrome? It is hard to believe that Ava has come out of being a 24 weeker without any sort of issues, heck, I find it hard to believe. It's quite amazing. But then again, isn't our God quite Amazing? I can't explain it. I can't explain how I have looked at my daughter with investigating and open eyes, and not finding anything wrong with her. The gossip while we were in both of the hospitals was that "mom doesn't get it". I get it. But I knew (and know). I know that she is perfectly and wonderfully made. The only thing abnormal about Ava is how unbelievably happy, loving and smart she is. She is an absolute riot. I looked into her eyes a few weeks after she was born to see such a pure intelligence behind them and I felt peace. To live and be with Ava every day is such pure joy that is hard to describe. Our family is finally complete and at peace. And now we can breathe.

Saturday is World Prematurity Day and March of Dimes asks for people to wear purple in honor of that day. 1 in 8 babies are born prematurely. And speaking of which, a couple from our Taste of Buffalo family had twins born at 25 weeks. Please pray that they too may know the peace that has been given to us and that the babies grow strong and healthy.

Also Saturday is the day that the Hand to Hold organization announces the "Preemie Power" award winner. We got email saying we were in the running for the trip to Disneyland. What a blessing that would be for our family. Ava is the smallest preemie that is in the running as well as had the longest stay in the hospital. All our preemies are little miracles...

Thank you God for our delightful family and praying for continued peace...

Day 1008

Ava had a hard time last night with coughing. She did fine though but we called Lung Center in the morning and got her on steroids right away. Ava definitely recovers nicely with steroids but she still gets sick when her sisters do. Everyone is sick except for myself. Hopefully we won't have to go to the hospital for a tiny stay. Her sisters always seem more sick than she is. She is also eating pretty well. She is chewing and swallowing appropriately. She spit up last night once and that hasn't happened in quite some time.

Thanking God for Ava's ability to eat and praying that she is healthy...

Day 1001

We had a great time with Ava on Halloween. She was Wonder Woman. Our little Super Hero. After the first house she knew exactly what to do and was trying to run down the street. She was so excited to be walking on a sidewalk and seeing trucks and cars drive by her. It's amazing how little things excite her.

Today is the last day to vote for Ava to possibly win a trip to Disneyland. She is currently in second place. Thanks for voting and here's the link: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761

Thanking God for Ava's love and life and praying for Ava to chew and eat her food properly and to stay out of the hospital...

Day 997

Ava has been doing pretty well the last couple of days. She weighs 13.70 kg = 30.20 pounds. She is also climbing on the furniture and sneaking up the stairs all the time. She ate chicken noodle soup, squash and pumpkin ice cream last night for dinner. My little chow hound! Of course that doesn't happen at every feeding and she did spit up her lunch this afternoon. We are awaiting Hurricane Sandy, but thankfully we have a generator to keep her meds cold and her equipment running. Hopefully our nurse can get home safe tonight. Please pray for her safe journey. Ava is also talking quite a bit more and trying to repeat what we are saying. What a joy this is!

I just saw on "Preemie Powers" FB post that Ava is in 2nd place for their contest. Thanks for voting & here's the link to vote again: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761 We have until Friday to vote and you can vote every day. In case you didn't know, the winner receives a trip to Disneyland with their family. What a gift for our family that would be!

Since I have your attention, I thought it would be nice to start praying for other people that need some prayers. I have written about this young man before, but unfortunately he is still in a coma. He was hit by a car on his bike over a year ago. Please pray that he comes out of his coma asap without any brain damage and is able to walk, eat and enjoy the rest of his life.

Thanking God for Ava's life and praying for Ava's immune system to be strong and for Andrew to awaken to his mom and sister's loving smiles...

Day 990

I spoke with GI in Syracuse today and Ava did well on her emptying scan. Her tummy emptied for the perfect amount of time. We are now able to stop giving her Eyrped and hopefully she will continue to eat and keep down her food. 1 more med down - Yeah! It's so great. Hopefully she no longer has reflux and we can get rid of the Prevacid as well. She is also chewing much better and just loves her mac n' cheese.

Thanking God for Ava's progress and praying that she continues to eat and enjoy life...

Day 986

Today Ava ate cheerios. She did an amazing job chewing them up. In fact, last night Ava ate a hot dog and some mac n' cheese with her friends. All of a sudden now, she seems to be chewing and swallowing her food. It's an incredible miracle.

Ava had an emptying scan done on her tummy on Monday in Rochester. It was supposed to be an hour long scan, but the 50% of the contents of her tummy went through in a half an hour. We were able to go home quite earlier than expected and she only had to be scanned 3 times. We still haven't heard from GI about how it exactly went, but with the contents moving that fast, we are pretty sure it went well. Hopefully we can get off Eryped for that.

We have entered Ava in a contest for "Preemie Power" where she can possibly win a trip to Disney with your votes. Voting starts tomorrow and you can vote once a day. Here is the link: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761

Thanking God for Ava's amazing progress and praying for her to continue to eat and chew...

Day 981

Today we had a wonderful photo shoot with our friends from "Through the Years" Photography. They blessed us last year around this time with photos of our family. It's amazing the journey we have had in a year. A year ago, Ava was on the vent 24-7 and we were taking off the vent for a couple of seconds to take photos and put it back on quickly. Now she has no need for a vent and doesn't even have a trach! Amazing progress! Praise God! She was running around with her friends and just enjoying life. We couldn't be happier. Below are some photos. Enjoy and Thanks to Through the Years Photography!

Thanking God for friends and for Ava's progress and just thanking God today...

Day 976

Sorry for the delay in getting these posts to you. We have been very busy and we did manage to get sick the last couple of weeks. We got some good news today - Ava doesn't need immunoglobin infusions this winter, unless she is getting ill frequently. We found out they don't believe she needs the Synagis shots during the winter to fight against RSV, because although her test was negative, her numbers for the psuedococcal (I think this is correct spelling ;) ) showed that her body reacted. Her IgG numbers went up from 509 to 545 (this is still low for her age) and IgA from 20.9 to 21.6 (also low for her age). We still need to be very careful with her but we can also get out and have a little more fun than last year.

We did take Ava to Pumpkinville and she was able to stand next to the Pumpkinville sign that measures their height. It was incredible to have that experience when a year ago Ava was on her ventilator. Ava had such a fun time and has such a joyful laugh. She gives us all amazing joy.

Thanking God for Ava's laugh and praying for Ava to eat solids...

Day 930 - Going home without a trach...

Ava did it! She made it through the night without needing a trach and she breathed on her own! Can't believe I'm saying - Ava breathed all by herself!! Thank you God!

We did get a blood test for Immunology to know her IgG & IgA levels when we go there next week Tuesday. Ava was so funny this whole trip to the hospital. She smiled and waved at every one. Held her hand out to touch people, showed everyone her neck...

What a blessing she is...

Thanking God for the trach to be out and Ava to be breathing well and praying for her to eat well...

Day 929 - The day our dream came true...

So I'd like to say it was a huge extravagant procedure with Ava being surrounded by the most prestigious doctors when they took the trach out... But alas, it was her mama that took out trach and washed her neck. Anthony even recorded it for you to see. Exceptionally easy unlike how she came into this world. But Ava was so proud. She showed everyone that once her trach hole closes up, she will get her ears pierced. She showed everyone where all her body parts were and made sure they knew how smart she was. Everyone was grinning ear from ear when they came by her. If she does great through the night, we can go home.

Thanking God for our joy and praying for much more happiness and joy...

Day 826 - Possible Decannulation?

I got the call today to that Ava might go into the hospital on Monday for decannulation if there is a bed available in the ICU. There currently is, but if it gets busy in there, we won't be able to go. We will hear sometime between 8 - 9 am to get the news to go in.

In the meantime, here's a fun pic of Av and I...

Thanking God for our opportunities and praying for the future...

Day 916 - Happy Day at Lung Center

Anthony, Ava and I went to Lung Center today hoping for some great news. We met with Ava's doctor and at first we thought he was going to say no. Then he talked himself into it because Ava didn't need the vent when she was sick. Then of course she wouldn't need a trach. It was very surreal. We are very excited and so is Ava. Our Lung Center doctor is actually leaving in a couple months. He said that we won't be needing them much anymore. Ava's pediatrician is also an asthma specialist. He asked if we wanted to keep the vent for a bit, but Anthony said that we would have to come in if something was wrong with Ava, so let's get the vent out of our house. ;)

I called ENT as soon as we were in the car and the scheduler wasn't in the office today. She will be in tomorrow.

Thanking God for Ava's life and praying for her to be decannulated...

Day 910

Things haven't been too crazy lately. Just really enjoying Ava walking more, going out to Darien Lake and riding the merry-go-round with her and taking her out on adventures. She has been spitting up the last couple of days and we really don't know why. But she does weigh 13.05 kg. She has gained a decent amount. I did call GI with hopes that we can go down in food and possibly need to go up in meds with her weight increase. I haven't heard back yet.

Tuesday we go to Lung Center and we are praying that the trach can come out soon after. With Ava being sick and not needing the vent, there really is no need for a trach. What a relief that would be for her not to have something in her throat and tied around her neck. Maybe she would eat better?!

These are two photos of Ava playing with some friends... Once of the first times she's been able to play with kids in our house. <3 br="br">

Thanking God for our fun with Ava and praying for the trach to come out and for her to eat...

Day 902 - Ava's 2 1/2 birthday

We just received some great news on Ava's 1/2 birthday. Her immune system seems to be getting better. Her IgG levels went down from 730 to 644 but they are ok with that for now. They should be over 700, but her IgA levels which are her long term immune levels have went up to 43 from 24. That is a huge increase for her! We will get another blood draw the week of August 19th and hopefully her IgG will go up into the 700s. Please pray... We will go to Immunology on the 28th. Hopefully we can soon not be so neurotic about keeping Ava away from germs. Praise God!

She is walking all over the place now. I will take a video and post soon. Thanks for reading!

Thanking God for Ava's improving immune system and praying for wisdom and knowledge...

Day 901

Today was another great day with Ava. We went to Developmental to review how she's doing. The only negative is that she had another blood draw to find out her levels of immune system (IgG & IgA). It took three of us and she was fighting hard. As soon as we walked in the room she was upset. Just the like the blood pressure cuff - she absolutely freaks out when she sees the cuff too.

Ava weighs 28 lbs now. And here's the good news... They found her to be at the following months, give or take, sometimes she tested a bit higher, but here's the average:
Fine Motor skills - 24 months
Gross Motor skills - 12-18 months (she's doing much better walking lately instead of crawling)
Language - 20 months (and that's with a trach!)
Cognitive - 24 months

She has really stepped up since we had been there 6 months ago! Praise God for a child that is just incredible. Ava was all smiles there and talking away with her Passy Muir valve. They just want to see her 6 months and we need to work on her trunk control. I can't imagine what 6 months will bring!

We also saw Ava's respiratory therapist and we spoke for awhile. She is so happy that Ava is doing so well. She keeps saying we won't need nurses for much longer... meaning the trach will be out soon. We have an appointment on August 7th and hopefully we will get the ok to go down in trach size and then ENT will take the trach out. Don't know when that is, but they were looking for Ava to get sick. Since she was sick less than a week after coming off the ventilator and didn't need the vent, it has definitely given us more confidence and she passed that test. It's amazing what a year has brought our family.

Thanking God for Ava's progress and praying for Ava to be able to eat and be trach-free...

Day 894

Sorry for the delay in posting. With the Taste of Buffalo just ending last Sunday, trying to catch up with other duties and the lack of nursing, I have let Ava's blog get behind. I will update more this week and I have some posts already planned.

Ava is doing very well and she is off the vent now for over two weeks - 24/7! Praise God! Today we went to Darien Lake in the afternoon because she wanted to go on the Merry-Go-Round. She is unbelievable. The ride has barely started and this little girl is signing "more". By the time the ride stopped, she was in tears and signing "more", "more". We went on three times and each time she did it. The last time she was better, but when we went on the train ride, and got off, she arched her back and wouldn't let me put her in her stroller. She also is going potty in her potty often and tomorrow we are going on a date to get her big girl underwear. She is so excited. Her cheeks get these dimples in them and she is all smiles at the thought of Elmo underwear. Being with Ava makes your heart soar.

Ava weighs 12.6 kg = 27.78 pounds. She gained some more weight. Lung Center is very happy and we continue to take things week by week. Keep your prayers coming, we still need to get this trach out and she still needs help eating solid foods. Thank you!

Thanking God for being with Ava and praying that we have more nursing and Ava is trach-free...

Day 885 - At the hospital

 Ava's been sick starting early Monday morning. She actually went down in trach size to a 4.5 because I couldn't get the 5.0 back in on Sunday night. Ava seemed great that night but started having wheezing issues around 5am on Monday. It turned to around the clock albuterol every 4 hours or so. It got better, then got worse. Wednesday we spoke to our Pediatrician and gave her steroids. By Thursday afternoon, she needed O2, and wouldn't settle down so we called both her Pediatrician and Lung Center. I even put the vent on her and she had trouble breathing with it. They both told us to come to the ER which we did. After about 3 Albuterols and a steroid shot in her vein, we were finally in a room for the night to be observed.

Thankfully we were released in the afternoon and she was back to her norm. Her blood cultures came back negative for any illnesses and her lung scan didn't look like pneumonia. Praise God!

Amazingly enough I was able to attend the Taste, take care of my duties and Ali and Ari stayed with me to have fun as well. Ava's incredible Daddy took care of her at home. We also found out that it's a good thing that she got sick now, cause it proved that she didn't need the vent. Even only after being off of it for less than a week.

Thanking God for his amazing miracles and praying for strength and wisdom...

Day 878 - Breathing without a vent...

Ava had her "capnograph" test on Tuesday night this week. She was off the vent all night. We didn't officially get the results until today. Ava is now officially off the vent 24 hours a day. Thank you God! Her median O2 sat was 95 but that is also for when she is moving around and her pulsox drops (not because of Ava, just because of her movement). It's hard to believe how far we have come in one year. She just has to thrive and grow a bit and then hopefully the trach will come out. Hopefully she will keep the weight on while she is walking and crawling all over the place.

Ava weighs 12.50 kg = 27.56 pounds.

Thanking God for Ava being off the vent and praying for her to eat and be trach-free...

Day 867

I called Lung Center and they decided that we should stay the same amount of hours. If Ava isn't sick and still doing great, she will take another monitoring test next week. She will go off the vent all night! 24 hours in a row and no vent for Ava! Please pray that it goes superbly well.

Thanking God for the gift of Ava and praying to be trach-free soon...

Day 860 - 6 hours off the vent...

Ava got the ok to go off the vent for 6 hours today! Once we are good with the 6 hours, we will take another test to be off all night! We are moving full speed ahead. She also is gaining weight as well.

Thanking God for Ava's progress and praying for her to eat and not gag...

Day 856 - Being tested...

Last night Ava got tested for her CO2 levels and O2 levels while she was asleep off the vent for 6 hours and on the vent the rest of the night. We found out today that she did really well and we are now able to be off the vent 6 hours at night. Less than 6 hours to go! Praise God!

She actually satted above 97 and her CO2 levels didn't go over 44. Most of the time were in the 30's. That is very good. We know she will do great on her next test which will be off ALL night in a couple of weeks.

Thanking God for Ava coming off the vent and for great test results and praying for Ava to eat...

Day 854 - Lung Center

Today was a hard day but thankfully we are still moving forward. We went to Lung Center and after ENT saying that we would definitely be decannulated this summer, Ava's doctor said that it might not be until November. This was quite shocking and I broke down into tears. Not because I "must" have Ava be without a trach, but rather because of our lack of nurses as well as the daily judgements I receive from the ones we have. We are quite often without night nurses and we are told this hours before that's the case. Or make that even minutes before they are to be at our house.

The doctor did decide to have Ava tested over night on Wednesday night to see if she could go off the vent for 6 hours (half the night). If she does well, we will be able to keep her off those six hours. He did say that if everything goes well, we should be off the vent by mid-July. They also would like to get a blood gas to see how her CO2 levels are.

Thanking God for Ava being off the vent and praying for relief and her to be vent and trach-free...

Day 849 - Syracuse

Ava has been doing great. Yesterday Ava had her last IVIG. Her IgG level came back as 733, which is good. We will be getting a blood test in July and August, and if her levels stay higher, we can stop the IVIG hopefully permanently. Her IgA which shows her immune system stats in the long run also went up. This shows that she shouldn't have a permanent problem with her immune system.

Today we went to GI in Syracuse, NY. We first went to the Feeding Clinic and the speech pathologist gave us quite a few suggestions. For example, a larger spoon, more real food like bananas, and mashed potatoes. She also suggested skipping stage 3. This is definitely the hardest part for Ava. She has been keeping most of her food down. We just sometimes have irregular spit ups. The GI doctor said that isn't reflux. We will also re-evaluate her digestion after she is off the vent, hopefully in September. We will go down in her Eryped med and then get another test done in Rochester.

Everything is going really great and we also got approval to go off the vent for 1 hour after Ava is sound asleep. Keep praying... We need it. Ava has a Lung Center appointment next Tuesday, the 5th.

Thanking God for Ava's amazing progress and praying for Ava to be off the vent and decannulated...

Day 835 - ENT

Ava had her ENT appointment this morning. We had to wait an hour to be seen and Ava was such a good girl. It's unbelievable how patient she is. The ENT saw her and gave us a prescription for the 4.0 trach, a 3.5 trach and a cap for the trach to be used once she is completely off the vent at night. He didn't even have me schedule another appointment, but rather told the receptionist that I will call her to set up the overnight hospital stay for decannulation! Amazing!!! Our dreams are coming true! Thank you God! Now, just to get her off the vent at night, stay healthy and get approval from Lung Center.

Lately, she has even been telling us that she needs to go potty and actually goes! She also lets us know when she has a wet diaper.

Ava now weighs 12.15 kg. We are giving her 200 ml 3x a day and 100 mls at 10pm when she eats her 6 oz of food. We are back to giving her the Pediasure at 9am, 12pm and 6pm which is what GI wanted. The 9am feed really seems to get in the way of therapies and I am concerned that it might affect how much she eats during the day, but we'll see.

Thanking God for Ava and praying for a great summer...

Day 832

 Ava got to go to Fantasy Island on Saturday and stop at a friend's birthday party. It was a really great day and we all had so much fun. On Mother's Day I got Ava to eat 6 oz of food and drink milk from a glass. She was so excited to be eating like a big girl.

I spoke to Lung Center today as I do every Monday and the RT seemed very excited that Ava should be able to come off the vent and be without a trach by Fall. I told her about how I scared the new night nurse by training her if Ava's pulsox drops and how to react. Of course not even 10 minutes after I told her what to do, the pulsox numbers dropped and the nurse thought that something was wrong. It was just the pulsox but she didn't understand how stable Ava is. Ava's RT said that hopefully we won't have to worry about nurses much longer since Ava will be off the vent/trach. We still don't have a nurse on Saturday nights and Sunday days. And of course those random times of call-ins or illness.

Thanking God for Ava's advancements and fun and praying for those Lungs to keep on growing strong and healthy...

Day 829 - Therapies

Today we met with Ava's therapists for her annual review. A year has gone by and what an amazing year it has been! She was laying on her back, unable to roll or sit up and now she can cruise on furniture, crawl all over the place and try to run while we hold her hands. She is also eating Stage 3 baby food now. We have finally made it past the Stage 2! Praise God! We are also working on her crunching on some puffs. If she can eat 6 oz. we will be able to go down on her volume of food.

Thanking God for a year and praying for many more years of joy to come...

Day 828

After the phone call with Lung Center the other day, I called our Pediatrician and discussed Ava with him. He also feels, along with ENT that she is doing great and it seems that she does not need a trach anymore. Of course that decision is based on her lungs and the Lung Center. I had to ask Lung Center a question about her ambu bag and I decided to ask the ultimate question "Is decannulation a word even thought about when it comes to Ava this summer?" The reply was "Yes, as long as everything continues to go well." Well, that was a major relief and exciting. We still don't have a sooner appointment, especially since the doctor is away for two weeks.

Thanking God for Ava's ability to breathe and praying for decannulation this summer...

Day 825 - another 4 weeks

Today we got some news that Lung Center wants to wait 4 weeks before they make any additional changes with Ava. That means no going off the vent at night. We are still off during nap time. We really don't know what it means. Does this mean they aren't talking decannulation this summer? Are they only going to go an hour off the vent at night every week? That means it would take 10 weeks which is past August to get her off the vent. Ava also needs to go down to a trach size of 3.5 from the 5.0 that she currently is on. We have to wait until her appointment on June 5th and she is not supposed to have any illnesses which includes asthma. Asthma is considered an illness to them. In our area, the pollen count is high and Anthony's even been having trouble with asthma. It's really frustrating because we know how well Ava did while she was sick and how great she is doing now. In order for Ava to develop mentally and physically, she needs to start experiencing the world, and if she can't get sick, it's a pretty scary world out there. Please pray for God's guidance. He is in control, but he certainly is giving me the will to fight for over 825 days for my baby.

Thanking God for Ava's strength and praying for more strength for all of us...

Day 824 - Ice cream

Today Ava ate her first ice cream cone. She has had tastes of ice cream but never held one in her hand and put it to her mouth. She knew what to do from the get-go. She wouldn't open her mouth much, but she would get some in and all over the place. It was really fun and messy.

Thanking God for these special moments and praying for Ava to be decannulated...

Day 822

Ava is doing much better and she is keeping her mixture of Pediasure and Pedialyte down. Her stools are still very loose but her lungs seem back to normal. We actually took her to the Albright Knox Art Gallery for a bit this evening. I was part of an art project where the art gallery randomly chose 150 people to be part of this painting. My response to questions and chosen artwork will be created into a 2' x 2' painting which will then be part of a much larger painting of all the 150 "people" panels. You may still be confused but it was very interesting and it was incredible to be part of a piece of artwork that will reside in the art gallery for years. I'm sure I will never have a piece of artwork hanging on the walls created by myself, but it's certainly a dream, so this little bit of me will be. Maybe someday one of my girls' artwork will be hanging on the walls...??

Anyways, back to the family being at the art gallery - Ava had a great time and even had a sucker that she watched her sister's eat and thoroughly enjoyed herself. The little things that she does that is "normal" now seems like such an incredible miracle.

Thanking God for times together as a family and praying for many more...

Day 819

We took Ava to see her Pediatrician today because she was throwing up. She has a GI bug, worse than her sisters had. We actually missed Lung Center as well today and can't get back in until June 5th. This is not good news. She is still on steroids until next week and her overall outlook is good. Her stools also are explosive and extremely loose. I'm not really feeling like this is God's plan, but rather an attack but we are moving ahead and Ava is able to handle being off the vent during the day. Her sats are around 93 and since we want her to get better faster we have been giving her O2 to help her at night. We don't think think it's Rotavirus like she had a year ago, but we are on top of things and hopefully no CPR will be needed like last year.

Thanking God for Ava's progress and praying she gets better fast with no other illnesses...

Day 815

Ava went to Immunology today. They are very excited by how Ava's doing. We are going to get IVIG today and then another dose in May and we are going to stop it at least until September. She will get blood tests June, July & August with hopes that she will keep up her IgG level above 500, which she has been. We are also going to switch from Bactrim to Zythromycin because Bactrim is photosensitive and Ava will hopefully be outside all summer. She will only have to get Zythromycin twice a week from end of May to September and then at our August appointment they will re-evaluate that as well.

Ava has been a little bit off lately with her heart rate being higher while she sleeps and belly breathing until she needs albuterol. I think she is getting asthma. Please pray that we can find answers and she is relieved. She also has been spitting up her feeds again. Last night she did it all three times. The heater unit on the vent also broke, just like the time that she almost was drowned by her night nurse. Gratefully, I was able to do it with ease and no drowning occurred.

Thanking God for Ava's immune system growing and praying for her to get stronger...

Day 816 - Ava has asthma

Ava was satting lower 90s today and her sleeping heart rate was low 100s, when it's normally 50s - 70s and satting high 90s. She was needing albuterol every 3-4 hours just like Ariana, so I decided to take her to the doctor to make sure it was nothing other than asthma. The doctor checked her out and confirmed that she was having asthma symptoms. We will be on steroids for 5 days as well as albuterol whenever she needs it. Just like Ariana and Daddy. 3 out of 5 Hackett's have asthma. Please pray that my babies can be rid of it.

Thankfully, Ava has handled it without needing the vent and very little, if any O2. She just needs the albuterol.

Thanking God for Ava's lung strength and praying for her to never need a vent again...

Day 807

Today we got approval for Ava to go off the vent during nap time. The doctor did tell the respiratory therapist that before we go off at night, that we would need to come into the hospital to watch her sleep without a vent. I'm hoping we can do that early May before we go see ENT on May 17. We are hoping that once we are off at night completely, the ENT will reduce the size of her trach on May 17. Please pray that this could happen. We are going so often without nursing and with Ava doing so great, it would be incredible for her to sleep without a trach and for us to take her in the car without an extra person.

Ava has been pretty stable lately with the three feeds at night. Not gaining any weight but eating pretty good orally during the day.

Thanking God for Ava's lung growth and praying for help...

Day 802

Sorry for the delay in posting but it's been a crazy couple of weeks. Today we went to see the eye doctor for Ava's annual visit. He told us that she has a slight stigmatism but it shouldn't be an issue. She is still far sighted which is normal for kids her age. We don't have to see him for TWO years! Praise God! It's such a miracle.

Check - another doctor off the list (for two years).

Ava is still having a hard time keeping her food down and we now have all 3 feedings set to nighttime at 220 mls per feed, down from the 250ml. I wish we could figure out what is wrong.

Thanking God for Ava's beautiful eyes and praying for her to eat properly and not spit-up...

Day 796 - A year ago today Ava came home...

A year ago, Ava came home to be with us. If you read back to a year ago, the next day she started getting sick and she need chest compressions by that Saturday and again the next Wednesday. She ended up having Rotavirus and quite a few of the hospital staff doubted that we could handle Ava being home. Fast forward to now, and we have not been back since April 28th of last year. We have conquered illnesses (even RSV) and kept her at home. It's been hard, but we have been taught well, have the tools like O2 and have had great day nurses and of course our wonderful friend and ICU nurse who has even come from Canada to eagerly help.

Ava has brought us so much joy this year. She is so excited to be alive and we all love how she waves her hand around to say "yes!" and bounce on her booty to show her appreciation. A year ago she couldn't even sit up and she was totally ventilator dependent. Today she is off the ventilator, walking in a walker and signing "mama".

I found out today that Ava's immune system is the about the same as the last time we tested her blood. Her IgG level is 730 (this is good) but her IgA is at 19, which should be atleast 24. It has increased since last year, but not in the last few months. She is still a bit behind in her immune system. Please pray that we can get her immune system to be exceptionally well.

Thanking God for Ava being home and a year and praying for many years of joy with Ava...

Day 793

Today we had Ava's bronch done. We had to be at the hospital by 6am which meant that we had to wake up Ava extremely early. But she was as happy as can be and very much excited to be going somewhere. We got there and surprisingly the hospital had no current info on Ava in their computer. They didn't actually even know when she was discharged. So we gave them all her updated info and we were the first visit of the day for the ENT doctor. We were in there about 7:30 and done in less than an hour. We only could walk Ava to the door and then they carried her in. She didn't cry but looked back and enjoyed having an audience. She is such a ham. She loves to sign to everyone and blow kisses. The doctor came out to speak with us after he was done and he told us that she looked "Fantastic". He even said it three times! He said that sometimes the trachea can narrow or have scarred tissue and she had neither of that. Her airway used to be "floppy" as well and that is no longer the case. He said that she no longer needs the ventilator, but we just have to continue following the weaning process that Lung Center gives us. I let Lung Center know and we should be able to wean her at nap time on Tuesday.

When we got home Ava was extremely tired but she really wouldn't take much of a nap. By 4:30pm though, she passed out in my lap and her O2 saturations were hovering around 89. I took her up to bed where she slept for 5 hours and I put O2 on and called the doctor. He said this could happen sometimes with anesthesia. When she was under anesthesia last August we didn't have problems, but this time we did. She was fine after she woke up and no longer needed anything since that point.

We are very excited and hoping that she will no longer need the trach by the end of summer. All signs are pointing to yes. Praise God!

Thanking God for his promises to us and praying that Ava is healthy...

Day 790

We don't have a nurse Friday night, Saturday night, Sunday day. Thankfully our incredibly awesome nurse & friend from the ICU is working Sunday (she reads this blog hee-hee) and Monday night I had to beg our nursing agency to put our night nurse on an extra night. Thank goodness because we found out today that we have to be at Children's at 6 am on Monday morning. Which means we have to leave at 5am, which means we have to be up around 4am. ;) So much for sleep this weekend. This is one of the major reasons we need Ava decannulated sooner rather than later. We can actually sleep at night! Maybe it wouldn't be sound because I would still have a pulsox hooked up to her for a while, but with our lack of nursing for almost a year now, not to mention the agency being rather rude almost daily, it would bring great pleasure to eliminate that huge problem. I should calculate how much time I spend on the phone with them in a week. Maybe I really wouldn't want to know. lol.

I'm a little nervous about the bronch at the hospital, being that the hospital is still busy, and I really don't want Ava to get sick. Please pray that everything goes well and we can find out her trachea looks great to go ahead with decannulation in the next few months. I will probably drive all the nurses/docs crazy making sure their hands are clean. But it would be worse if we were back there. Then I really would be sanitizing everyone and thing...

Ava is doing really well with her orthotics and sneakers. She's getting very close to standing by herself. She is also eating a whole organic pack of food at one feeding time. We are also going to go to GI in Syracuse and their feeding clinic in May to maybe see if they have any more advice about getting her past the texture of solids and not gagging.

Thanking God for Ava's bronch on Monday and praying that she is safe and we have great news...

Day 787

Today we went to Cardiology and Ava had two tests done. One was an echo and they found that the hole in her heart has closed. So now she can go deep sea diving and fly a jet when she is older. ;) Awesome news! She has come so far! Do you remember on Day 12 when Ava's hole in her heart had reopened? She is doing incredibly well. We only have to go to the cardiologist a year from now. He affirmed that Ava is completely a miracle and that he wishes he could replicate myself and our family. He said they have moved to the back of the bus now when it comes to the "bus load" of doctors. It's awesome to think that one of the body's major parts is now no longer much of a concern for us. Praise God!

We have went down to 220 ml of food for Ava and are keeping the feeds at 4am, 12pm and 10pm. The GI doctor also recommended to go off Eryped for 5 days and it should help it work again to help Ava's digestion since she has been spitting up.

I also spoke to Lung Center yesterday and we have to wait 2 weeks to start going off the vent at nap times. Which of course ends up being the Monday after Easter and they are off that day.

Ava also is back to weighing 12 kg = 26.46 pounds. She is 85 cm long = 33.46".

Thanking God for Ava's amazing progress and praying that she will be vent free and trach free a year from now...

Day 785

The next couple of weeks are busy. Ava has Cardiology this Tuesday, her Bronch next Monday, Immunology on Tuesday. She is back to spitting up but she is on 250mls, 3 times a day, so I don't know if it's because of the increase or just her again. We have been feeding her while she is asleep the last couple of days because she is spitting up at every meal.

Ava also got her orthotics and new sneakers on Thursday. It was the first time she has been in a store. We also went to Bath and Bodyworks. She had so much fun and kept signing "more". She seems to be doing better with her feet since we got the orthotics.

She still hasn't started talking with the valve, but she loves to talk with the vent when she is going to sleep. We really need a therapist that can help us with this. Our speech therapist didn't know what the passy-muir valve is, so I am hoping that she will learn more about it.

Tomorrow I will call Lung Center and I hope that we can start weaning her off the vent during nap time. We shall see. We didn't have a nurse last night or today and we won't have one next Friday and Saturday night and Sunday day. If anyone knows a great Medicaid nurse, we have that ability now to take private-duty nurses, please let us know.

Thanking God for his endless opportunities and praying for energy, and Ava to be off the vent all day...

Day 782

Today we went to ENT and Ava got a prescription for a Passy-Muir Valve. This is a speaking valve that helps her to use her vocal cords as well as better swallowing. The doctor also thinks that she should be decannulated by the end of summer. The thought of her being free of her trach is unbelievably exciting. No more night nursing, no more need to stay up all night-every week! Maybe it would also mean she could eat easily! I could drive all three of my children around without having someone next to Ava. Can you imagine - being able to drive my children around - all of them together - by myself?! I could actually go to the store when we need something and not have to wait until we have a nurse or my husband is home?! Incredible!

The doctor also wants to do a bronchoscopy to check out her trachea before we are at the point of delaying her decannulation. We scheduled it for April 2nd, before I get super busy with the Taste of Buffalo.

We were hoping she would speak but she isn't a big fan of the valve being on. We are looking forward to the day she can say mama and daddy, Ali, Ari and Ali wants Ava to tell her, her favorite color. Ava breathes very well with the valve on, despite you can only breath in, not out. If you can take her mind off of it being on, you can get her to keep it on for at least 15 minutes.

Ava also got her IVIG on Wednesday. She was completely terrified of the needles and she had to have blood drawn. We go next week to Immunology and hopefully her blood levels are perfect and she will no longer need infusions anymore. Ava is so strong and it takes three of us to put an IV in. We should find out this week what the results were.

Thanking God for Ava's lung growth and praying for her trach to be gone by the end of summer...

Day 778

We had a great week and weekend with Ava. The weather has been incredible and Ava has loved every minute of it. She has done great this week being off the vent 10 hours a day. I am hoping tomorrow that they will allow us to start naps, but the RT said that doesn't happen that quickly. We know that Ava is ready.  We are still working out how to give her nebulizers and puffers without the vent.  Buffalo Oxygen does not have any easy answer for some reason.

Ava got her last Synagis shots for RSV last week as well. Hopefully we can get the shots again next year. She is getting her IVIG on Wednesday and we are going to ENT on Thursday. Next week we go to Cardiology, the week after Immunology, and after that is Opthamology . Quite a few weeks of appointments but it's either her three months, 6 months or annual. Love saying ANNUAL appointment. That's for her eyes - it's so unbelievable that she was so close to having eye surgery and now she only has to see the eye doctor annually. Hopefully he will say that she no longer needs to see him. We are so blessed! Ava shows us every day how smart she is. Some nurses that have seen other 24 week babies can't believe how incredibly smart Ava is and how well she can communicate.

Thanking God for blessing our family and praying for Ava to be able to come off the vent during nap times...

Day 772

We got approved today for Ava to come off the vent when she wakes up in the morning until she goes down for her nap (5 hours) and from 3 - 8pm for a total of 10 hours a day. Yeah! We also changed her feed rate to 250 mls 3x times a day. We went up because she went down to 11.75 kg with her weight. We also eliminated the 3pm feed because she most often would spit up during that time. We moved her 4th feed to at night once she's asleep just until she is fully up to the 250 a feed. We are going up 10 mls every 2 days.

We are also going to see the Syracuse feeding clinic whenever we go to GI there. It really seems like the gag that is triggered by anything solid isn't going to go away anytime soon. She has been eating stage 2 for a long time, and Ava really wants to eat solids and puts foods in her mouth. Her gag though makes her vomit up anything that is in her tummy until she can get that solid out of her mouth.

We are looking forward to this week with Ava since we are having great weather. She really loves being outside.

Thanking God for Ava's lung growth and praying that we no longer need the vent & trach this summer AND Ava can eat solids...

Day 770

Well it's been a while for a post, but that's because things have been pretty great. She is off the vent 6 hours a day, and while she is off, she is scooting around in a new walker, crawling, pulling herself up on our couch & table. She has even been on the swing a few times because we have had nice weather. 

Ava was sized on Thursday for orthotics that will fit into her sneakers to help her not turn her feet out so much. They think that she doesn't have a lot of strength yet in her upper thighs so with these and possibly some bands around her legs, we can strengthen her legs without going with longer orthotics.

On Monday, I will be calling Lung Center to hopefully go all morning and all afternoon off the vent. Ava is doing so good without it. No problems at all. She also is eating really well. Opening her mouth wide and swallowing. That will definitely be hard to get her to eat more solid foods. She is only spitting up once in a while. I'm wondering if it correlates with when she needs to be suctioned. Tomorrow it's supposed to be a nice day so we are looking forward to taking Ava out. She was pointing all day today to go outside but it was too cold.

Thanking God for Ava being off the ventilator and praying that she can eat solid foods...

Day 759

Today Ava went to Lung Center. I thought we would just be going back to 15 minutes a day for a week or so, but I was pleasantly surprised. We took her off the vent the whole time she was there and she was completely 100% saturated (with oxygen). Her CO2 levels were low as well. The doctor decided that we can start back at 3 hours twice a day for two weeks and then we will go off all morning for 4 1/2 hours and the same for the afternoon. We are so excited! After that we will wean her completely off during the day except for nap times. Once that is complete, we will start with nap time, then bedtime. At some point, I believe she goes in to be monitored while she sleeps. We were told this will move more quickly now that we are into many hours of being off. Can you imagine if she is off the vent around the clock by summer? If we keep her healthy, that will probably happen! Praise God! It's so amazing what a year will bring. It's almost 1 year since she has been home. I don't think Ava can imagine her life without seeing her sisters and family every day. We are so blessed to have her.

Thanking God for the gift of Ava and praying for more nursing...

Day 757 - A sleeping nurse

Ava had a great day today and is really enjoying eating and trying to break lose from the vent. She gets so excited when her sisters run or play ball. She doesn't seem to have a lot of secretions and seems to be back to normal. Our night nurse is supposed to be in at 7pm and we are looking forward to that. Today is our last Sunday to have a day nurse, but she is hopefully going to be coming in next Sunday since we have an event to go to.

Tonight though, after we went to bed we heard the vent alarming continuously. Anthony got up to check and he found the nurse sound asleep in her leopard snuggie. I got up went in, and the vent was still alarming. Ava's sats were only 92 (which I think was the pulsox), but the vent is so loud, we can't even sleep in the other room without hearing it. I even changed her pulsox probe and she didn't wake up. She was asleep for at least 15 minutes while I called the nursing agency and let them know. Anthony finally got her to wake up and she went out to her car where she couldn't get it started because she ran out of gas. I looked in her nurses notes and she gave her 2 puffs of albuterol because she was supposedly wheezing and then she must have fallen asleep! Thank goodness Ava didn't need to be resuscitated tonight. So it looks like we won't have a night nurse on weekends again. We really need prayers for more nursing. The situation seems to get worse and worse.

Thanking God for Ava and praying for more great nurses...

Day 754

Ava is doing much better today. She still has some extra secretions so Lung Center has advised us not to sprint her until she is completely back to normal. Some kids regress a bit after getting RSV.

This afternoon we got our oxygen delivery (from our new oxygen company) but because they don't have a lift they couldn't take a new tank upstairs. They left us two tanks by the bottom of our stairway. The one going up the stairway wasn't hooked up yet when Ava had an issue. Of course an issue has to arise at this time. Ava woke up from her nap coughing so our nurse suctioned her. She put Ava on her changing table and noticed that she was breathing hard and having a hard time. She started to get her ready to suction when she called for Anthony because our portable tank wasn't full of O2. She changed her trach as well and didn't find anything in it. Ava's oxygen saturations were at 41 and dropping. Anthony rushed to get the O2 line hooked up and fill one of our tanks. Ava eventually started to come up very slowly. Thankfully he was home that day since I wasn't, because I'm not so sure Ava would be here without him getting her the O2. We really have no idea what happened but we have been told RSV really can do a number on kids.

Because of the RSV, it's going to take her a while to get back to the 3 hours off and more. I'm really disappointed especially since she can't get around that easily with the vent. She doesn't like to be attached to it. We might not go to Lung Center since we will just be starting her off the vent for 15 minutes again. I will call on Monday to find out if we will go to her appointment on Tuesday.

We do have other good news: Ava has been keeping on her food down since she was ill. She is also eating about a packet and a half of her organic baby food. We are going through it really fast.

Our night nurse was sick on Tuesday when she was here and if I would have known, we would have sent her home. We haven't had a nurse most of this week: No nurse Saturday - day, Sunday - day, Monday - night, Wednesday night - our day nurse came in at 1 am, Thursday and Friday night. It's been a crazy week. We are in the process with the help of one of Ava's ICU friends to get Medicaid nursing. I have a nurse interested in working during the week at night. Hopefully that will work out. Our weekend day nurse is taking off on Sunday's, so we have another shift open there. Please pray that we can get rest and have more nurses we can trust with Ava.

Thanking God for Ava staying home while she was sick and praying for more nursing and for peace in our home...

Day 751

We got the test results from Friday and Ava has RSV. Human respiratory syncytial virus (RSV) is a virus that causes respiratory tract infections. It is the major cause of lower respiratory tract infections and hospital visits during infancy and childhood. A prophylactic medication (not a vaccine) exists for preterm birth (under 35 weeks gestation) infants and infants with a congenital heart defect (CHD) or bronchopulmonary dysplasia (BPD). Treatment is limited to supportive care, including oxygen therapy. So with that note, she has been on oxygen since last Monday. She also gets 2 Synagis shots a month to reduce the chances of that. We also pretty much don't go anywhere. Ariana must have gotten it first and then Ali but Anthony and I and the nurses haven't gotten it. The only place we go to is to our co-ops gym and swim and to Target or grocery store. It's very easy to catch and in older kids and adults it seems like a runny nose or cold. Don't know how we can possibly stay away any more than we already do. It's a good sign that if she has something as bad as RSV where kids go to the hospital, that she can handle it without much extra help.

Ava was off O2 until 4 pm today but she started satting lower 90s. I put her back on and she's been higher ever since. Her heart rate is back to normal. It definitely makes me nervous because we don't want her to go to the hospital and possibly get something else. Please pray that she gets back to normal asap. We go to Lung Center next Tuesday and it would be great to get back to weaning off the vent.

Thanking God for Ava life and praying for strength in both Ava and our family to get her over this illness..

Day 748

I decided to take Ava to the doctor today since she doesn't seem to be much better. She usually is better faster than this. She was also pulling on her ear so I thought that maybe she had an ear infection and I can't do much about that. Anthony has been away since Wednesday so my nurse and I went to a 1pm doctor appointment. They took a swab of her nose to see if she has RSV. They actually think she does and it could possibly get worse. I told them we should probably go on steroids since they would do that for normal children. She has been spitting up all her food for the last couple of days so we are mixing half of her feed with half Pedialyte. The doctor said to mix more than half of Pedialyte to make sure she doesn't aspirate which could cause an infection.

After we got home, Ava slept in my arms for a couple of hours and when her sisters got home from my parents house, she was very excited to see them. She is on 1.5 liters of O2 and the nurse actually put her up to 2 liters in the middle of the night without letting us know. I don't know what she was satting when she did that. Hopefully we can wean her more tomorrow. Her temp seems to be better and her heart rate and breath rate seem to be back to normal.

Thanking God for Ava's strength and praying that she gets back to norm soon...

Day 746

Ava didn't sleep much last night so she was very tired this morning. She was ok yesterday but very lethargic. We let her sleep downstairs for a morning nap and we discussed calling the doctor to put her on steroids. We decided to call Lung Center and they said to change her trach. We had an instance Monday night that she was turning blue and shaking. Her O2 sats were 100% and I turned her O2 up to 4 liters but she was still blue in her arms and feet. It was pretty scary but after I held her the color came back and she stopped shaking. Her heart rate was above 150 so we were able to give her an albuterol. We are giving her round the clock Tylenol & Ibuprofen. Not sure if we should have called 911, but they probably wouldn't have known what to do. We don't want to go to the hospital since we know it's filled with RSV patients.

Ava seemed to get better this afternoon so we decided to skip the steroids. If she gets worse tonight, I will give them to her. She is satting mid-90s when she is asleep and besides being tired she is pretty happy.

Thanking God for Ava feeling better and praying that she continues to get better and doesn't need steroids...

Day 744

Today we went out for a doctor appointment and Ava started needing oxygen while we were there. It happened so fast. She started getting a fever later that day and her heart rate and breath rate were high. Her heart rate was over 180 and her breath rate was up to 80 bpm. We thought it could be possibly because of the shots last week since she got sick after her last shots and needed to go on steroids. We have no idea what's going on but she is on 1 liter of O2. Hopefully she will get better soon and we won't need steroids. She won't be going off the vent this week though.

Thanking God for Ava to be home with us and praying for her to be healthy...

Day 740

Ava is now able to go off the vent for 2 hours twice a day now. Next week Thursday we should be going longer. She is doing so well. We really need her off the vent soon since we don't really have night nursing and Ava loves to scoot around the house.

She got her live vaccine shots today while her sisters were in the doctors as well. Ariana got a bit of a cold and has asthma problems. I don't think I have ever taken three kids in to the doctors at one time. So grateful I had our nurse since Anthony is away. But once Ava is off the vent and the feeding tube, my life should be a breeze with three right?! I am having a lot of fun teaching the girls and they are amazing me with how much they information they retain. Ava even is communicating beyond what I can imagine. She is really enjoying eating ice cream and whip cream and is feeding herself.

We found out that our Friday, Saturday and Sunday nurse is going to take Sundays off now. She knows how much we need nursing, but she still decides to take them off after being on our case for at least 5 months. That will be a lot of fun if we don't get a Saturday night nurse. We have a new night nurse starting Tuesday night and hopefully she will enjoy our case and take us on 5 nights a week.

Thanking God for Ava's lung growth and praying for her to eat and breathe on her own...

Day 738

Today we had Neurology at Children's Hospital. The doctor was amazed by her and called Ava a "wonder baby" and we are "wonder parents". He said that when you do have a lack of O2, you can see seizure activity but since we haven't seen it, it most likely won't happen. Ava isn't on any on seizure medication and has been off of that for 6 months.  Please keep her in your prayers for this. We all know that she is only a "wonder baby" because of your prayers and God's plans. We don't have to go back for a year! Yeah!

In other news, our only night nurse called in on Sunday, citing illness, but she called yesterday that she is scared of the vent and Ava. She gets a lot of low minute alarms. This doesn't indicate a problem but that there is air coming out of her mouth or from around her trach. Ava doesn't drop her O2 saturations or heart rate so there isn't a problem but to position the tubing and stop the alarm. The agency feels that she doesn't want our "case" because she wants something easier like a g-tube case. She came to train at 1am this morning with another nurse that we had just that night and she said she still is afraid. So we are back to not having a permanent night nurse. The agency did get a few nights and thankfully our day nurse is coming in after working a day shift to work the night shift. Thank you God for her!

Thanking God for Ava and praying for more dedicated nursing...

Day 733

Today we were on the Kiss 98.5 telethon for the hospital. They were raising money to get a navigation unit for ENT.

Here's a link to our video. http://bcove.me/6h190s24  Ava was fussing like a normal two year old and she didn't like all the noise when people clapped. When we left she kept signing "more" as if she didn't want to leave. She very much loves all the attention. Typical of the baby in the family. Whenever she sees someone clap she thinks it for her (probably because we cheer her on all the time at home).

Anthony has been away since Sunday and he won't be back until Friday night. Our nurse didn't even show up for work last night. I texted her at 11:45pm and she wrote back saying that she was at Buffalo General because her father had a heart attack. I have no idea how long she was there and didn't call in, but this is patient abandonment. I'm very sorry for her situation but every body needs to call into their jobs and say they can't come in. She could have had her family call our agency. Tonight will be the second night in a row without a nurse which means we cannot sleep.Thank goodness my parents have taken the kids overnight so I can sleep in the morning. We have had 5 nights of call-ins/no nursing in a 7 day period.

We went down on her Peep to 7 and we should be getting down to a PEEP of 4 or 5 depending on her lungs.

Thanking God for his grace and praying for more nurses...

Day 730

We had a pretty good day at Developmental. Her head circumference is 45.5 cm and her length is 32.5". They found her gross motor skills at 11 months, but they are no longer saying that she can never walk. Her upper trunk has gotten stronger so they don't think it's a neurological problem. Our PT came with us and they suggested to us that she "tape" her legs to increase the muscle underneath since her feet turn outward. They found her to be cognitively at 18.2 to 2 years which is incredible. Some skils were at 18 months while others were even beyond 2. It's really great to hear. She was a little off today being distracted and tired but she still tested well. We are so excited for what the future holds for Ava.She has grown 6 months developmentally during a span of less than 4 months.

Thanking God for keeping her safe all these months and praying for continued growth...

Day 727

Ava gets very mad now with her vent on. She wants to roam the house free and gets upset when we have to put her back on after 45 minutes. I decided to call Lung Center today instead of Monday. I got approved for Ava to be off the vent 1 1/2 hours twice a day - total of 3 hours a day!!! She does so good with it off. Her sats are even 100% when she isn't moving. Praise God!

She does still spit up about 1x a day. We are praying that it stops. It isn't as bad as it used to be. We still don't get any gastric juices so it's wonderful not having them to drain anymore. She actually has been doing great eating orally again. She even asked for her cup of milk today and is drinking!

We are going to Developmental on Monday. I can't wait to see what age her skill level is at. Our PT is coming with us to help us show Ava off.

Thanking God for Ava's progress and praying to be completely off the vent...

Day 724

 Today was everything we hoped it to be. I really felt like we had won the lottery. We lined the stairway with balloons and Ava was so happy to see the balloons. We had a little party with the immediate family and Ava was such a ham. She showed everyone how she can crawl around the house. We got her a lion cake with a pink bow in it's mane from Ohlson's bakery. She loves to roar like a lion.

We are so thankful to God for giving us Ava for the past two years. There have been many hard times, but there have been many more wonderful times that leave us breathlessly waiting for more.
Here's the link to Ava's slideshow of the last two years... http://www.youtube.com/watch?v=_UK620644_o


Thanking God for two years with Ava and praying that we no longer need the trach and Gtube...

Day 723 - On the eve of Ava's 2nd Birthday...

We are very excited to celebrate tomorrow and what tomorrow means. We think Ava is even excited and knows what a birthday is (especially after we celebrated Ali's 1/2 birthday and Daddy's birthday yesterday). Two years ago yesterday, Anthony took me into Sister's Hospital with the hopes that we could keep Ava in my tummy. Of course we all know, God had other plans. I remember feeling guilty about Anthony spending his birthday at the hospital because maybe it wasn't necessary to be there that weekend. But it was not only important, but imperative. There is probably no way Ava would have made it to the hospital alive with us living 45 minutes away. If she did there could have even been brain damage. But God gave us wisdom and knowledge to come into the hospital and get the two shots to develop lung growth. Who knows if that really made a difference??...

In other news, we didn't have a nurse Friday, Saturday night or tonight. Saturday night our nurse was late and then she ended up getting in a car accident. Tonight our nurse, who only comes in once a week, called off less than an hour before her shift, giving us much time to prepare for an all-nighter. She also hasn't been in the last three weeks. We are currently in the process of getting Medicaid nursing approval and will try to find some Medicaid nurses who can fill in since we pressured our nursing agency months ago to let us.

Ava is doing great being off the ventilator 45 minutes twice a day. She really just takes off and loves not being attached to the vent.

Ava weighs 12 kg = 26.5 pounds.

I am working on an updated slideshow for Ava's birthday tomorrow. Hopefully it will be done for your enjoyment.

Thanking God for Ava's life and praying for Ava to outlive us all (and be healthy)...

Day 720

Last night was a little bit better with the alarms going off. I was able to get a bit of sleep. Anthony comes home tonight so we are very excited. I called Lung Center to see if there was anything we could do about the alarms and they said that the only we could do is go up in trach size. We definitely don't want to go to a size 6 trach. That's huge and I don't believe our ENT wants to go up either. I actually asked to go off the vent for 45 minutes and Lung Center said ok. So we are now allowed to go off 45 minutes twice a day. Praise the Lord!

Ava is spitting up again. Not after every feed, but sometimes it happens at least a half an hour after a feed. Please pray that it stops again.

Thanking God for Ava's progress and praying for Ava to be off the vent and no longer need a trach this year...

Day 718

Ava had a swallow study done today at Children's Hospital in Buffalo. We brought her baby food, her sippy cup of milk and a couple of cheese puffs. The speech therpist mixed her food with barium and I got Ava to eat some. We found out she has a "good safe swallow for small amounts of food." She also has a delayed swallow. The food stops for a couple of seconds in her esophagus. It's not as bad as the speech therapist has seen it before. She actually asked if she could use the study for her students that she teaches at UB. Her swallow study looks pretty good for a baby on a trach and ventilator. Her delay could be because of her respiratory issues or neurological. I don't believe it is neurological.

We are also having issues with Low Minute Volume on the ventilator. It alarms if Ava's mouth is open or if the air is coming out around the trach. We have tried repositioning but for our new night nurse, the alarms were going off all night - every 2 -3 minutes. Anthony is away all week so this is making me exhausted having to get up at 6 am, going to bed after 11pm and then not getting any sleep at night. Not sure how to keep it from going off. We move her around and not much seems to work.

Ava weighs 11.90 kg = 26.24 pounds. She spit up yesterday too. Hopefully she keeps her food down like she has the last couple of weeks.

Thanking God for more good news and praying for Ava to eat...

Day 715

This week has been much better since Sunday. We have had a few nights this week without a nurse. The nurse that was just hired, is working the rest of the week. Her family was sick so she didn't come in one night. We did take the nurse off our case on Sunday night.

Ava got IVIG (immunoglobins) on Monday. We heard from the Allergy doctor on Wednesday and he said her IGg went up to 634. Last time it was 270, but that seems very abnormal, so hopefully the 270 was incorrect. IGa which went up to 17 from 14. It does need to be at 35, but he said it's ok that it is 17. Her blood test she took at least a month ago to find out if her DTAP shot stayed in her body and activated the right responses. That test came back that it has and he is waiting for another result this next week to find out if we can start giving her live vaccinations. He said that everything is looking good. This doesn't mean she might not get immunoglobin infusions all this year, but things are looking better. She also got her Synagis today which she gets once a month until March.

She has only had 2 spit ups for 20 mls all week. She is doing very well and is eating about 1-2 jars of food a day. Once we get to 3 jars a day we can go down in her volume of Pediasure she gets. Once we work milk into the equation, we can eventually get her off the G feeds. Next Wednesday we go for the swallow study to see if she aspirates when she eats.

We also got approval to go back to Ava being off the vent for 15 minutes twice a day. We are going to do this until a week from this coming Monday. Then I will call Lung Center and I am hoping we can go to 45 minutes. The RT told me that we can go faster after this point so we will be going longer every week.

We can hardly wait until the 24th for Ava's 2nd Birthday. It's hard to believe that 2 years ago, she came into this world as big surprise. God's plans for her are amazing!

Thanking God for Ava's growth and praying for her immune system to be strong and for her to be vent/trach free...

Day 710

Ava is doing really great. She is completely back to norm. I will call Lung Center tomorrow and see if we can start weaning again. She is supposed to get one more does of prednisolone, but the Pharmacy couldn't fill it. Maybe Lung Center will say she doesn't need it.

She ate two bowlfuls of food and she did not spit up at all this past week. Barely any gagging as well. Maybe it's her body used to the Pediasure or us feeding her organic foods (or both)? We also gave her these baby cheese puffs (which aren't organic) and she would take little nibbles of them without gagging. It was amazing. It's the first time I saw her actually eat something that she put in her mouth, other than baby food. Praise God! He really does move mountains when you believe!

Ava also took steps around the one side of our kitchen island today (and it's long). She really wants to move and she is getting stronger every day. Tomorrow she is getting a monthly dose of IVIG. She actually is afraid now of the woman when she comes.

Ava weighs 11.70 kg. I thought I weighed her last week and she was 12 kg, but with her not spitting up this past week and eating more baby food, I can't imagine her losing. Although she is quite active.

Thanking God for Ava's growth and the plan for her life and praying for her to be vent and "G" free...

*Update: Shortly after posting this, the heating unit on the ventilator broke. Our night nurse was changing it out when the humidifier chamber filled with water spilled over and water went up the vent tubing and into her trach and lungs. The nurse suctioned her a couple of times before I heard her suctioning. I went upstairs and found Ava blue and told the nurse to stop suctioning her and bag her with O2. Ava started to look better after I bagged her with O2 but she still looked a dark color. I suctioned her again and got a bit more out. She was also wheezy after and we put her on 1 liter of O2. We called Lung Center and after talking to them, we gave her albuterol and saline and she seemed better. I found two suctioners that had blood in them, so the nurse obviously suctioned deep and irritated her trachea. She was on O2 all night and seems to be doing much better. Please pray for constant protection over Ava and our family.

Day 707

Ava is doing better today and we are still on the steroids until Monday. She needed a bit more time recovering than the time she got sick in September. Thankfully she is off the O2. She might need it here and there but not all day. I have to call Lung Center tomorrow to give them an update.

Ava has incredibly eaten 2 bowls of food - not huge filled to the brim bowls but at least 15 spoonfuls of food in each bowl. It is so exciting! She also has been taking more steps forward and standing for a decent amount of time with help. We are having troubles with her G tube. It seems to be deflating but there doesn't look to have a leak in it.

Thanking God for Ava eating and praying for her to no longer need to be "G" fed and a vent...