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...