Day 702

Ava started having more problems today and her O2 sats went in the low 90s. We put her on O2 and gave her a nebulizer of albeturol and called the Lung Center doc. He put her on prednisolone until Thursday and she should get better within 24-48 hours.

Ava still is eating a bowlful of food through this. She hasn't stooled in a couple of days so we also gave her Senna to help with that. Hopefully that will help her with the gagging. It always seems like she is gaggy when she hasn't gone.

Thanking God for Ava being home and praying for her to get better asap...

Day 700

Ava's having a little trouble today. Her heart rate is higher than normal (150s- 170s) and so is her breath rate (50s - 80s). Her oxygen saturation seems fine between 97-100. She is definitely belly breathing. She shows no other signs of being sick ie. runny nose, extra trach secretions. Hopefully she will be better tomorrow. She is very happy and eating a bowlful of food every time we feed her.

Thanking God for Ava eating and praying that she is back to her prime...

Day 698

Today we went to Syracuse to see Ava's GI doctor, whom we haven't seen since June. While we were in the waiting room, we spoke to a woman who's nephew was born at 24 weeks and had a shunt in his brain and had sever CP. He died at the age of 13. We can't help but feel extremely grateful. She said that Ava was highly functioning. What's interesting is she hasn't been classified as that because she doesn't have CP but is a normal child on a vent despite her birth at 24 weeks. God - We are so grateful to you!! Family & Friends - THANKS for all the prayers!!

The GI (gastroenterologist) thought she looked great. Ava ate almost a whole bowlful of food for him. She even licked her lips and really showed off. He said we should be able to get her to do a swallow study so I called the speech therapist from Children's when we got back home. Hopefully we should hear from her soon. The doctor is also going to keep her on Pediasure since she is doing so well on it.

We made it back to Buffalo at 2pm, so it was a pretty good day. We also got to use the kid cart and it was amazingly easy to push. So thankful for that as well.

Thanking God for all his great blessings on us and praying for Ava to be vent-free and eating solid foods...

Day 696 - Ava's 2nd Christmas!

We had a crazy day, but it was great. Ava is all over the place and being we had no nurse today, it's interesting to be with all three kids and make dinner and open presents (which involve downloading software from the computer). I am certainly not complaining though. I read over last year's Christmas post and how much I ached for Ava to be home.There has been a transference of stress for the care of Ava from the hospital to us and thankfully her need for care has diminished significantly. It still is a struggle but a happy one. She still needs prayers though. Please pray for Ava to be off the ventilator, her lungs to grow and for her to eat.

By the end of the day, I think Ava got into the whole unwrapping presents. Or she just goes along with her crazy family. She got a baby doll and she actually hugs and treats it just like we treat her. She signs baby doll and she even signed that the baby eats. Hopefully this will help with her feeding by mimicking eating with her doll.

She ate some pudding this morning with no gagging, but had one small spit up incident. I was behind in her feeding by 30 minutes so if we were to feed her at our Christmas dinner, we would get some gagging and spit up. So she just sat there and showed off for Grandma and Grandpa. I am trying to get her to sign "Grandma" & "Grandpa", but she actually signs "love" and looks at them. ;) Aw, my sweet baby.

Ava weighs 11.8 kg = 26.01 pounds. She's back up to 26 pounds and this time with the Pediasure! Go Ava!

We got the kid cart on Friday so this was a great Christmas present. We will hopefully be able to carry Ava around much easier. Hm... Maybe we can go on a test run tomorrow?

From our Family to yours... Merry CHRISTmas! Thank you for your continued support and for reading Ava's blog.

Thanking God for our family being together and praying that we have many more special days together...

Day 690

Ava was able to go down on her vent settings today to 19 on pressure control.She also is finally down on her PEEP to 8. She was on a very high PEEP of 9. We are all around a peep of 5. She is doing great with these new settings.

Ava weighs 11.55 kg. She seems to be stabilizing. Still having spit ups, but we actually had none today. Eating spoonfuls here and there.

Thanking God for Ava's success and praying for her to eat and drink orally...

Day 686

Today we had ENT. He said she looked great and he even heard her talk. With her being able to talk, that should mean her vocal cords are in good shape. In the spring, she will have to be put under and have a scope down to see how her trachea and vocal cords look. We are coming back in 3 months and if her vent settings are down, we will probably go down in trach size. We can't have the cap for her to speak until her trach size is smaller since the cap would be too large for her.

We are still going off the vent for 15 minutes twice a day, and she is doing really well. The Lung Center said that her xray looked like what they thought it would look like. It's better, but not perfect. Her right lung is not as far over as it was into the left side as in the past, so there is an improvement. I will call once a week on a Monday, and hopefully we will go longer off the vent. They have also decided to wean her a bit more on the vent. VNA will come out to make those changes.

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

Day 685 - That's what Faith can do...

We had another exciting day today.If you saw the above video, you know that Ava started to crawl today. She has been pushing herself forward a bit with both legs but today, she started moving both her legs and arms; one at a time. We are so excited and she is so happy to show off. She also got her Synagis shot to protect her from RSV. We had to weigh her and she now weighs 11.4 kg, but this was in the morning, not at the normal evening time.She did spit up twice today and it was a decent amount. She also was very gaggy eating today. Tonight, I did get at least 5 spoonfuls of food in her mouth that she ate. So that is good and that will add to her calories. She is so amazing. It would be wonderful to have her eating baby food. Every day is a step forward to doing that.

Thanking God for Ava having the ability to crawl and praying for Ava to eat and grow...

Day 684 - Without a vent...

Today started out rough, but turned to pure joy! We had our Lung Center appointment, and even I, didn't expect to have these awesome results. God is so great! From where we were a year ago... All I can say is WOW! Ava's nurse and I fully updated the Doc and RT and they knew they were going down in vent settings. They also decided to do what I hadn't expected - to see how she would do without the vent. They took her off the vent and her O2 saturations actually went up and her CO2 levels went down. Her heart rate stayed the same and she was very comfortable breathing. She wasn't breathing with her belly and she even breathed better standing. We continued until 15 minutes. She didn't get tired, and she looked at us very curiously as to why she couldn't pull the vent off or why we didn't hurry to put it back on. The doc wanted to get another xray since we hadn't had one since April and after they reviewed that, we are going to go down in her Peep by 2 after they review her Xray on Thursday.

We went up to get the Xray and I actually got to see it after. Her left lung looked the clearest I have ever seen it. It really looked amazing. The Xray tech said we could wait to talk to the doctor to get the results, despite what Lung Center said about Thursday. We waited over an hour but we didn't hear anything so we left. We should hear on Thursday. I did run into the tech and she did say she wasn't a doctor but she saw what I saw. We can't wait to hear the results!

Thursday is ENT, and he is a wonderful doc will be very excited to hear the news. We have to keep a watch on Ava's weight, but they do believe that she is being over ventilated since she went up in sats when she was off the ventilator.

We didn't tell Anthony until he saw that Ava was off the vent. The video above is the surprise he got. All I told him is that we were probably going down in vent settings later this week and her Xray looked good. This is definitely the day that the Lord has made. Let us be glad and give thanks in it!

Thanking God for Ava's ability to breathe and praying for her to be fully off the vent in 2012 and to be able to eat...

Day 683

Ava is starting to crawl a bit and she really loves to stand. She can pretty much stand holding onto something all by herself. Tomorrow is Lung Center and Thursday she goes to ENT. Hopefully tomorrow we will go down in vent settings again. We are really hoping that we see her get off the vent in the next couple of months. She really needs those tubes away from her so she can start walking and crawling. She also pulled her "G" tube out twice today.

Ava weighs 11.60 kg = 25.57 pounds. She went down in weight from the 11.75 kg. I will probably call GI tomorrow and see if they want to go up on her feed. They still want to go up on her feed, but I think she needed another week to adjust to going up to 180 ml. She also is doing so great eating. She is actually moving her tongue around enough to have her food go back to her throat and she swallows. This has just started happening the last couple of days. She also tasted her first candy cane today. Her sisters would lick their candy canes and then she would open her mouth enough to let the candy cane in. No gagging either.

Thanking God for Ava's amazing growth and praying for a great Lung Center appointment tomorrow...

Day 673

Today Ava had a blood draw for Immunology to see if her DTAP shot is active in her blood. They actually had to stick her 4 times to get the blood. My poor baby! We also went to the a nutritional doctor who is going to contact our pediatrician and GI doctor to put her on two nutritional supplements. He believes these two supplements will make a huge difference in her tummy and help her not to spit up. We should hear about this early next week if the docs approve.

Thanking God for Ava's growth and praying that her shots work and her tummy gets stronger...

Day 671

Today we met with the therapies. Not sure if it went how it should have. SKIP who is such a big advocate for Ava and who has gotten the approval for the Kid Kart, noticed that the meeting didn't seem to be involving the family but rather the therapists tell our service coordinator. The OT wants to go down to 2 times a week from three and the PT wants to go down to 2 soon. We were told by SKIP that 90% of kids in Erie County are getting PT and OT at least three times a week. And we were told in Genesee County that it's abnormal. Well, our therapists have also never worked with a ventilator case before. In addition, speech, Ot and her teacher want to co-treat - which means teach Ava at the same time. So Ava goes from getting 5-6 hours of therapy to 2-3 hours. In the beginning it was hard to work with Ava because she didn't sit or interact, but at this point, she can do both and can easily interact. They have not given a good reason to co-treat, but rather continue doing it despite being told of the "issue". I spoke to the service coordinator about it, and she started off that discussion by calling it an "issue", which immediately made everyone on edge. She is supposed to be what SKIP is for us with the therapists. But it seems as though she works for therapists. The whole situation brings in a toxic environment. Ava likes her therapists, but it definitely puts me and the family on edge. There is whispering and I'm sure there is much water cooler talk going on. We are not sure what to do with this situation as much as everyone that is reading this. There are constantly issues like this going on, but we really do love having Ava home. The best times are when it's just the five of us. She loves her sissies and they will do anything for her. They love interacting with her and have no jealousy of the time she gets. I do have to leave the house though, for the girls to get any sort of attention besides schooling.

Ava also is getting her IVIP next Monday since we have gotten the second round of the blood draw back. She goes Friday to get a blood draw to see if her one shot is working in her body.

The GI doctor also went up in her feed to 180ml every 4 hours and we will probably go up again next week.

Thanking God for Ava being home for over six months and praying for wisdom and knowledge...

Day 670

Today was a great day with Ava. She is standing on her own in the crib, not completely able to pull herself but she is working on it. She is doing pretty good eating a few spoonfuls of food when we are eating together as a family. She chews it, but I'm not sure if it gets down her throat. If it did, we would take her to get a swallow study.

Tomorrow we have the therapies come for a 6 month review. We are hoping they don't go down in services because Ava still has many needs. On the 13th, we go to Lung Center so please pray that she stays healthy and we go down in vent settings. Can you imagine if they say after we go down that we can try "sprinting" her? That means you take her off the vent for a certain amount of minutes. Amazing thought!

Ava did lose a little bit of weight. She is down to 11.70 kg from 11.85 kg. 11.70 = 25.79 pounds. I will call tomorrow to see if GI wants to go up in food volume.

Thanking God for Ava's will to stand and praying that she will walk and enjoy eating...

Day 665 - Ava's First Thanksgiving Home!

Today was a very special day. We had so much fun with Ava and she was such a ham to our guests. Besides spitting up, she loved to make everyone laugh and especially loved trying to pull the table cloth off the table. She knew it was a fun day and would make signs to show off. Ava would also start talking and babbling even with her trach. We are so happy to have her home and it really makes our family be complete.

Thanking God for Ava to be home and praying for many more holidays as a family...

Day 661

Ava has been doing great with her vent settings being lowered to a pressure support of 21. She still has some spit ups once in a while. Today was only once (tonight). She actually ate (orally) pretty well too - moving the food around her mouth. She took a really long nap this afternoon and she is really partying it up and talking tonight. She is really doing amazing things; moving around and signing for us that she wants to stand. And for those of you who know Ava well, she used to pick her legs straight out when you would lift her. Now she actually plants her feet and is trying to pull herself up. She is still weak from being in the hospital so long, but she can completely get herself to a sitting position and push herself around.

We have been sick lately; with exactly what I don't know. The girls and I have had coughs but thankfully Ava has been free of any illness. I have been wearing a mask any time I am near her.

Ava is up to 165 ml of food four times a day and her weight has seemed to have stabilized. She weighs 11.85 kg = 26.12 pounds.

Thanking God for his love that has been bestowed upon us and praying for strength, energy and Ava to be vent free...

Day 656 - Another vent setting down... a few more to go!

Today I called Lung Center because Ava has been stable with her feeds for a couple of weeks. I told them how great she is doing and after discussing it with each other, they decided to have VNA come out and lower her vent settings tomorrow to a pressure support of 21.

We got again to Lung Center in December and we will decided what to do at that stage. They are very excited and we are as well!

Thanking God for Ava's lung growth and praying to be vent free...

Day 648

Ava got her new "G" in this morning into her tummy. It was super easy and a lot less stress than a GJ. On the way to the appointment though Ava spit up a ton of bile and pretty much vomited the food. She ate around 7:30 to 8 am and this happened about 8:30 - 9 am. Not sure if this happened because she ate early and hadn't gotten the Prevacid or what. We did notice that her food was coming out of her tummy after unclamping her about 45 minutes later. She usually has it digest by then. But she kept that feed down. After her 3pm feed she kept it down until I let her drain into her Farrell bag and then I let her tummy take it back and she then spit it up. But that was around 5pm. After her 6pm feed she spit up a ton at 7pm. I just got done feeding her at 6:45pm because we went up to 150 ml - 25 ml more. Not sure what the issue is, if it was too much food, but she did spit up this am before the change. Please pray, this stresses me out so much. I need wisdom. God gave it to me a couple of weeks ago; Lord I need it again.

Ava weighs 11.85 kg = 26.12 pounds. She went down a little. Tomorrow I can hopefully call Lung Center to go down in her vent settings from 23 pressure support to 21.

Thanking God for Ava's growth and praying for her tummy to be healed...

Day 645

Ava is up to 125 ml and we will speak to the GI doctor on Monday to probably go up. She is 348 ml under what she was eating prior. We went to a chiropractor highly recommended from a friend and he checked Ava's nutrition by muscle testing. It was a truly incredible experience and he found Ava to be in really good healthy minus her gall bladder, spleen and tummy. He also found after no prompting that Pediasure is a better food for her than Peptamen Jr. When the Peptamen Jr. was in the metal can it really wasn't good for Ava, but when it was in the plastic container I had, it was ok. He did find Pediasure as a better fit for her. After he found that out, I told him that I have been feeling that way for months and he said I should go with my gut instincts. Of course I have been trying to push for that even when we were in the hospital. It's really unbelievable how God puts this wisdom in my head. It doesn't make sense but it's for real. This week has proved that. She doesn't need to be fed in her intestine when I have been feeling that way since a year ago.

She is scooting all over and really enjoys standing. I am enjoying getting more and more connected with Ava and this week she really has been loving me up.

Thanking God for Ava's love and praying for cuddles and for her to eat...

Day 643

Ava got her IVIG today for hopefully the last time. She got her blood taken today and when she saw the nurse walk in, she remembered her. Ava put her head on my chest and looked away from her. It's so amazing to finally have that connection with her; that she knows mama will make it better. We have an Immunology appointment in December and with the blood that the nurse took today, we will be able to see if she needs any more additional immunoglobins.

We got Ava up to her full 125 ml feeds and she has had no problems. Once in a while some gagging but it seems to have decreased. We have the Farrell bag off more often and she doesn't seem to be spitting up more gastric juices. Monday we will be getting a new "G" put into her stomach.

The girls and Ava are having so much fun with each other. She is scooting around and the girls scream with excitement which makes Ava go faster. She gets caught up in all her vent tubing and we have to untwist her.

Thanking God for all the fun and praying for years and years of more...

Thanking God

Day 642

We had an incredible day today. Words can barely explain our excitement. We had another day of feeding. She ate 120 ml 4x today with about 4 feeding sessions where she ate baby food and drank a bit of milk. What made the day even better was we found out that her cortisol levels were 26.5 when they only had to be 18. So we no longer need to see Endocrine and Ava doesn't need stress doses of steroids. Yeah! Praise God!

She did gag a little after the 6pm feed but no food came up. The other fun news is that Ava has started pushing herself backwards on her booty. She is turning herself in circles and it's hysterical. We are having so much fun with her.

Thanking God for all of Ava's growth and praying for her to walk...

Day 641

We went to Endocrine today and Ava got 3 blood draws to see if she needs a stress dose of steroids if she is ill. They gave her a dose in her veins and took a blood draw before, at 30 minutes and again at 60 minutes to see what her cortisol levels are. Tomorrow we will find out the results.

Ava had another great day of eating. She is on 105 ml of food now and she eats 4 x a day. She only gagged around the 6pm feed, and no food came out and while she was in the car. She seems to digest the Peptamen Jr before the 30 minutes of the push is over. It's so incredible. This is such a miracle. We had another day of good feeding.  Today she ate some banana yogurt.

Thanking God for Ava eating and praying for continued success...

Day 640

Today was a miracle! I fed Ava 5 times today into her stomach. None of those times did she spit up the food. She also ate breakfast with us (pudding) and some milk from a slow-flow sippy cup. She ate for at least 15 minutes because she hadn't eaten since Saturday morning. By early afternoon I decided to call the GI doctor and give him an update. We decided together to keep the "G" in place and see how it goes. So glad we don't have to get a GJ tomorrow. She ate 2 more times today and did pretty good. We are supposed to feed her 100 ml every 3 hours - 5x a day. With her naps I don't think it's possible to get 5 feeds in. Tomorrow we go to Endocrine to see if she needs to continue stress doses of steroids if she gets very ill.

Thanking God for unexpected surprises and praying for Ava to eat and her cortisol levels to be high enough...

Day 639

Ava pulled her GJ out while Daddy was helping Alexandra after she vomited. Her GJ actually might have burst out but we are not quite sure. I was at a meeting in Williamsville and first heard about Ali and started getting ready to come home. Then Anthony called about Ava. We really didn't know what to do since we were told so many things. I called her GI doctor in Syracuse and had me put in a temporary mickey button that we got given to us. We went into the ER in Rochester to get a temporary G put into her tummy. They were really great there and had us out in 3 hours. Ava did so great, smiling and playing. Tomorrow we will feed her by "bolus" feeds, pushing 100 ml of Peptamen Junior with a syringe every 3 hours. I'm back to feeding my baby! We will return to Rochester to get a GJ on Monday. Hopefully all will go well!

FYI - Alexandra actually only threw up that one time and it didn't happen again. Fun times! ;)

Thanking God for help and praying for her not to need to be fed in her intestine...

Day 638

Today we met with Dove Medial, PT and the Early Intervention coordinator because we have been denied a kid cart. They brought in the wheelchair that Medicaid thought would be the best for us and it really isn't a good fit for us. The Kid Cart was so incredible and would really help us carry all of Ava and her equipment around. Right now the double stroller is so big and heavy. It really won't be able to go through the snow. We are hoping the therapies will be able to work on getting this done fast.

Ava has been doing great and is definitely back to her norm. Hopefully Tuesday we will be able to down in vent settings.

Thanking God for Ava and praying for us to have the kid cart to cart Ava around in...

Day 635

Ava had a wonderful day today. She is back to vocalizing and sticking out her tongue. I got her to sign "luv mama" and she signs for daddy too. She stood for 9 minutes total today. She has a little help but she's using her legs. We have to sing quite a few songs to get her to stand that long. Ava loves "wheels on the bus". She is constantly moving her arms for us to sing it to her. It seems as if the Prevacid was Ava's problem because she is having no problems with gagging now.

On the 31st, we will be going to Endocrine and they will test her to see how she is doing without steroids. We are also going to see a Kinesiologist to see how our water and the food she eats is being handled in her body. We will also see if there is a certain type of food that she will like and handle better than others.

I haven't been feeling too well lately and quite down. Don't know what's wrong physically besides being very tired and having some congestion and a minor cough. Hopefully Ava doesn't get it. I am behind blogging so I will try and catch up. We were supposed to have a family friend come and take photos for us for Christmas, but I didn't feel good enough on Sunday for her to come. Pray that we have some nicer weather again (and Sunday was so beautiful).

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

Day 632

Ava was able to break her trach today. She broke it so the one side of the trach where the trach ties attach, actually broke off. Unbelievable! I have asked around and I have heard from some nurses that adults don't even do that. Physical therapy also had her trying to crawl by moving her legs and arms for her, but she was using all her strength - that SuperGirl! (cue the music...)

We don't have a nurse tonight, so Anthony and I will be with her all night. The good thing about doing nights is, we really see how she acts. In two weeks we won't have nursing both Friday AND Saturday night.

Thanking God for Ava's strength and praying for Ava to breathe on her own...

Day 630

Ava has had a low temp most of the week and got her shots yesterday for DTP, Hepatitus A and flu. She hasn't had any extra secretions but has been very gaggy. We thought she might be having lung troubles or was sick but we just found out today that her prescription from Rite Aid was wrong. We found out that only 15 days of the 30 day supply of Prevacid we receive is actually good. So our poor honey has been having really bad acid reflux. She has been gagging, her O2 saturations have been all over the place and no wonders why we have been having troubles with her tummy every month - 15 days of every month she has been home (6 months) her Prevacid hasn't been any good. To make matters worse, the only reason we found out was because they had incorrectly filled the prescription to half of what the dose was going to be on the label. They wouldn't believe myself or the nurse that it was filled incorrectly. I went in and after showing him, I asked why the medicine had written on the bottle "do not refrigerate". He looked it up and said it definitely needed to be refrigerated. After looking more into the med, he called and stated the med was only good for 15 days and we had been getting a 30 day dose. Ava has been in so much pain every month and now she hasn't had a good dose of Prevacid in 19 days.

Hopefully with getting the med correct now, we will have much better months and not taking days of speaking to doctors to figure out the problem.

Thanking God for answers and praying for help and healing...

Day 625

Today was a great day for our family. Our friends Steve and Jess Bermel got married after 8 years of dating. The best part was both Alexandra and Ariana were in the wedding. They had the most wonderful time and were so well behaved. They walked down the aisle throwing rose petals and sat through the whole service very quietly.

Later that night at the reception, though, I found out that Ava was having some breathing problems and had a temperature. Never a dull moment, huh?! Not sure what she has a hopefully it will go away. Her temp was down before we had to leave the reception.

Thanking God for our friends and the fun we had and praying for Ava to be healthy...

Day 621 - A day that was a gift from God!

Today we went to Lung Center. We figured they would probably go down in her vent settings to a peak of 23. It is such a great time to go in there. We were there just a month ago and Ava is already doing more things like standing and her volumes on the ventilator and incredible. If they continue to be high, they will have to go down some more! In two to three weeks, depending on how she is doing (no colds) we will go down on her peak to 21. We will go back to see them in two months. The doc even said that "one of these days, we'll need to go down on her peep" which is how the bronchial malasia (lung disease) makes her lungs collapse. Adults are around a peep of 5 to keep our lungs open (depending on the person) so they just don't collapse shut and not open when you take a breath. If you recall, hers was also "floppy". The doc said that she will probably not be off of the vent by the time she is 2, which is only in January anyways (and our next appointment is in December), but that if everything continues to go well, we should probably see her off of the vent by the time she is 3!!!!!!! This is news that we have been waiting 621 days to hear! What a gift and a blessing! God is erasing the doubt that Ava will never be off a ventilator. The docs only other concern was her heart and I told him how happy our cardiologist was with her heart.

So, we should probably start saving for Ava's big party when she is off the ventilator and trach. Oh that happy day that will be...

Ava weighs 12 kg again = 26.46 pounds, length - 31.5" = 80 cm, head circumference - 45.5 cm.

Thanking God for good news and praying for protection from sickness for our entire family...

Day 620

We had a great weekend with Ava in the beautiful sunshine. We took her to a park, Darien Lake, a picnic and to Pumpkinville. She loved every minute of it except for the corn shooter at Pumpkinville. She was so scared and crying and pulling off her vent as well as trying to pull her trach out. Everything else with Ava went smoothly.

We are looking forward to Lung Center now and showing them how good she is doing as well as how fast she got over her cold.

I would like to ask all of you again for you to pray for Andrew who was hit by a car on a bike a few months ago. They had a get together tonight for prayers for him because he has yet to regain consciousness. It's been a rocky road for his family and we all know how much prayers mean. Prayers got Ava to where she is today and please pray for Andrew to awake in perfect condition to be again how God created him to be.

Thanking God for his love and praying for Ava to be able to breathe, eat and walk (and run to her mama)...

Day 615

We got the results back from her blood test two weeks ago and the results are great. Her blood was taken just a few days after she had a cold and her immunoglobins went up to 714 and her other number which was 8 and they were concerned about, is now 14! Yeah! She still is unable to get a live vaccine but we found out she hasn't had DTap so we will be getting that as well as a blood test afterwards to see if her numbers are where they should be. Otherwise all is well! We have been noticing the volume of air that she has, has increased to ver 200 ml! We used to see less than a hundred. It definitely means her lungs are growing. Can you imagine if a year from now, we are no longer on a vent? What a blessing it would be!

Thanking God for the gift of Ava and praying for continued growth and for Ava to be a normal child that can run, play and eat...

Day 613

Ava is doing great again. We have a Lung Center appointment next Tuesday. Hopefully no one will get sick although we have been around so many people that have been. When we go next week, they will hopefully go down in settings to 23 peak pressure. She is also off Keppra for seisures on Wednesday night - that will be her last dose. Another med gone! Woo-hoo! We are also only giving her the Viagra for her heart three times a day now for 4 mls! Yeah! Love not giving so many meds. She will only get 2 meds at bedtime (not including her puffers).

Ava went up in weight to 11.95 kg = 26.36 pounds. Getting back up there again! She also is really using her legs and can stand with a little assistance. She is still only eating very little but she loves to eat with us and always is the first person at the table to put her hands together to pray... That makes my heart melt. What a gift she is!

Thanking God for Ava's growth and praying for her lungs to be healed...

Day 606

We went to get a blood draw today to see how her immune levels are to possible get the rest of her live vaccine shots. Then we had Cardiology and her doctor was extremely excited to see her. She had an EKG done on her heart and everything was great. The hole that is in the center of her heart is smaller so it's closing up. Until it's closed, it just means she can't go deep sea diving or flyer a fighter jet. I asked him if she wanted to, what happens? And he told me that he would go in and close it. ;) Hopefully it will close but he is very excited and doesn't expect to be seeing her after she is off the vent and will stop between the ages of 3-5! No long term treatment will be required. Praise God! We were so excited and very high on Ava again. Until...

We went to Developmental. We thought this was going to be a great visit because she was doing so much, including sitting up and signing and communicating. Well because she is either 16 months or 20 months, she is supposed to do so much more and she is (of course) not doing what an 18 month should. They only found her cognitive to be 13.5 months, but she does follow direction without any hand signals or motions. They don't even really grade her for using sign language. They also told me that she had brain bleeds and that she was crabby and didn't want to be touched while being in the hospital. What?! Did they have the right baby? All Ava ever wanted to do was play with somebody. Since when did she have a brain bleed? They said her upper trunk strength was poor but she is getting stronger and that they don't know if she ever will walk. That could be because of her brain. Kind of depressing but we know that our God does the impossible, right? Just look at Ava. They said they have seen worse brain scans, and the kids are doing fine.

In other news, Ava was watching me eat today and so I gave her a crouton to play with since she never really puts food in her mouth. And guess what happened? She put it to her mouth and tasted it! She didn't like it, but she knew where to put it!

Thanking God for his blessings and praying for Ava to walk, eat and be vent free...

Day 604

Ava is doing great. She came off O2 Friday morning and has been off since then. She is so happy and pulling her vent off as usual. We are supposedly getting a new nurse coming next week to work our weekend days. We are back to not having a nurse for Friday and Saturday next weekend. But if this nurse works out, we will have her on days so we can hopefully get some stuff done. Ava is on prednisolone for 5 days once a day for her cold.

Ava lost a bit of weight - she weighs 11.7 kg = 25.79 pounds. They said they want that to happen. But we don't want her to continue to lose too much.

Thanking God for Ava's progress and being able to handle a cold and praying to go down in vent settings next week...

Day 602

Ava seems to be back to her old self. She was bouncing in her bouncer yesterday and today. She still looked pale when we got home but she was so happy to see us. She snuggled up to my chest which she has never done before. I'm so in love with her! We are sick now too so I am afraid to come near her. It's so good to be home. She slept great last night so it looks as though she is on the mend. All of her therapies are canceled for the week. Monday we have to get her blood taken, see Cardiology, and go to Developmental. She is on 1/8 of a liter of O2. It looks as though we won't be able to go places again. No more church, no Christmas pageant for Ali, etc. Hopefully next year we can venture out or the year after that in the winter.

Thanking God for his blessing and praying for protection all year...

Day 600 - Oh the fun!

I spoke to the nurse and heard Ava was gagging much more and was very tired. She was up early so I thought that might have been the problem. Nope - that wasn't it. By 5pm she was on 1/2 liter of O2. I said she was getting sick and we had to call the pediatrician. Thankfully, Anthony was home for the funeral and after testing to see if Ava needed O2 (before calling the doc), she was able to be off the O2. He went to bed and around 10pm I was trying to call the nurse. She finally got back to me and said that Ava was in respiratory distress. The nurse was really upset and from what she was saying, it seemed as if Ava was going to the ER immediately. She couldn't get a rattle out of her chest, she was on 1 liter of O2 and her heart rate was 180 and breath rate ranged from 40s-70s. She couldn't get Anthony up but she wasn't knocking on the door. I was so scared at this point cause I wasn't there and couldn't assess the situation. Finally, Anthony got up and he called the pediatrician. The pediatrician said to go to the ER. The nurse was getting all of her stuff ready when we decided to call Lung Center. Anthony called and thankfully Ava's doctor was on-call and he was very calm and said it was just a cold. He faxed over a prescription to a 24 hour Walgreens. At this point Ava was up and happy and very smiley. Thank God. This was around midnight and I could finally go to sleep but was still praying like crazy. The doc said we didn't have to come home tomorrow either so the girls could enjoy Disney. Oh the "Adventures of Ava."

Thanking God for Ava and praying that she is healed and protected...

Day 599

Ali was really sick today and actually threw up in the lobby of our hotel as soon as we walked in. It wasn't much but this hotel isn't used to having kids because it's mainly for business since the convention center is across the street. She didn't want to show that she was sick and she seemed better so we went to the beach. It also didn't happen again. Funny enough, two years ago, when I was pregnant with Ava, Ariana threw up twice in Fl and we never could figure out why. It was even on different days. I think it's me. The craziest adventures seem to happen to me. And speaking of which...

We went to Cocoa Beach which is about an hour away. After getting Ali some medicine, we found the beach and were playing in the water. All of a sudden, I saw jelly fish in the water. I ran out and then we saw some all over the beach. That was the end of our beach fun. Especially after I saw red marks on Ariana's back and wasn't sure if she got stung or not. She didn't, so at least we got to see a jelly up close and personal. That is the homeschooling mom in me - that's what I have turned into. God always give my girls adventures with animals up close. Much fun for me ;)

Ava, Ariana and myself are still healthy... If something is going to happen, it probably will tomorrow.

Thanking God for our adventures and praying for Ava to be healthy...

Day 598

Alexandra started getting sick today. Sneezing and a runny nose. Tomorrow we go to Florida until Thursday am. I hope it's a great time and nobody gets sick especially Ava. We didn't realize Ali was getting sick until much late in the afternoon. Anthony has a trade show but he is coming back early because his brother-in-law passed on. He died of cancer - fighting it for two years. May his family have peace. So it is going to be me and the girls with a rental car and we are hopefully going to the beach tomorrow and Magic Kingdom. We told them that Ava wanted them to go on the trip because they were such wonderful big sisters.

Thanking God that we can go on vacation and praying that Ava doesn't get sick...

Day 593

Ava has been having some trouble lately. It started Sunday night when she gagged and/or coughed and started turning colors. I suctioned her but it still didn't help. We changed the trach which was gunky and then she coughed and the new trach came shooting out before we had the trach ties on. We thought maybe the vent circuit was pushing too much air in her tummy because it was alarming earlier. We changed that and I listened to her chest and I didn't hear any air moving in her lungs. I gave her two puffs of her albuterol and that didn't work so we gave her an albuterol nebulizer treatment. That worked and while I was giving her chest pt and the treatment, she fell asleep and we put her in bed. Her lungs except for the left upper lobe sounded clear. Her left upper lobe sounded not as good as the rest.

I spoke to Lung Center the next day and they said that after 6 days the change in vent settings wouldn't do this. We also got a new pulsox on Monday and it seems to be working and giving us more accurate numbers.

Today she had two episodes this afternoon where she drops her sats. One instance was her gagging the other wasn't. She dropped both times to the 70s but came up easily with bagging. We are now giving her Albuterol every 4 hours. She is doing better tonight and hasn't had any episodes. We don't know if she is having an asthma attack or ??? Both of our other girls had problems with asthma the first fall after they were 1. Lung Center said that a child with a ventilator doesn't get asthma, but I'm not so sure about that.

Our one of two night nurses (the only one who is full time), can't come to work for a while. Just found out about 4 pm tonight so I am doing a full night shift until 5am when Anthony will take over. Hopefully she will be back on soon. Please pray that will happen and we can also find more nurses. Our nursing situation is very draining and is probably our biggest problem.

Thanking God for Ava's lung growth and praying for protection and for her to get better in Jesus's name...

Day 590 - Ava went to Letchworth Park!

We had a great day and got to take Ava to Letchworth State park! We went with our homeschooling group and Ava kept reaching out to touch people's hands. Which made mama nervous and then I felt rude because I would wipe her hands after. But if you have went through your daughter having two rounds of chest compressions, you surely understand.

Thanking God for Ava's time with us and praying for many more fun times...

Day 586 - God's promises continue to come true...

Today was truly an amazing day. I will get started with our first appointment which was immunology. Amazingly, we were early but still had to wait about an hour to get seen. Ava fell asleep since she was up around 6am. She is such a good girl, I think she might no longer be a baby since she will be 2 in a few months! Anyways, immunology decided to still give her IVIG for at least 3 months and we can re-evaluate then. Since it's the winter months coming up, they also want us to keep her antibiotic (Bactrim) which supposedly doesn't harm her immunities. Her immunoglobins are now 638, down from the 760, but that still is good. The problem is one of the levels is at an 8 which is low but the good news is this level is the last to come up so they weren't very concerned. We had to rush the doctors because we had Neurology in 30 minutes and we were about a half an hour away (and we still had to load Ava and her equipment).

We had to wait for Neurology for over an hour. Ava was asleep again for this appointment. The doc poked her a bit to see if she had her normal reflexes and she didn't even wake up. We had her head measured here at 44.4 cm but just a few hours later someone else did it for Lung Center and found her to be 47 cm. So I will need to call Neurology and let them know. The doc also wanted a list of her head circumference every few months. Gonna get that together off this blog. ;) He said he is not concerned and I asked if "she is doing good?" And he said "really good." PTL! He also is taking her down to 1 time a day for her Keppra (anti-seizure medication) and we will go off it a month from today entirely. We still don't know for sure if she had a seizure but she has had no signs of one since.

After that we had a long break until Lung Center and I was so giddy with excitement. We went early and everyone was so excited to see her. Our pulsox probe (which detects the amount of O2 in her blood) was acting up and not accurate. They hooked Ava up to another machine to detect the amount of CO2 and the O2 saturations and she looked really good. CO2 in the 30s and O2 at 99 - 100%! I told all of them about how Ava pulls her vent off repeatedly and how she walks away in her walker away from the vent. While we were waiting, one of the other Lung Center docs, came by (and who probably doesn't know much of Ava's success) made a comment about this coming winter being hard and that we will need to get through the next 3-4 hard winters. At that point, I was kind of shocked, because I wondered if she knew something that I didn't, with Ava doing so well. The doctor came in after I spoke to everyone and he decided that we could go down in her pressure setting to 25. He did listen to her with his stethoscope when she was off the vent and he said that he could hear her air volume diminish to at least half. But after we went down to a pressure of 25 from 27 (which is the volume of air need to keep her lungs open) she did great and didn't have any change in her volumes or CO2. They decided to try 23 (which can be a final lung setting depending on the person) and she did the same - really great! So in 3 weeks if she continues to do well, we will have VNA come out and change her vent setting to 23. In 5 weeks we will go back to Lung Center and I don't know what's going to happen next. Just keep praying! God is working amazing miracles with Ava!

Thanking God for Ava's healing and praying for her lungs to no longer need a vent and she can eat like God has intended...

Day 584

We had a great weekend! Lots of fun adventures to tell you about. First she pulled her trach out on me again and Anthony was asleep because he took care of Ava during the night. Ava was in her walker next to our dining room table. I had to grab the trach across the room and put her on the table. She started crying because I don't think she liked being up there. It's amazing to hear her cry. This was the first time I heard a "real" cry and not just a little squeak. It gives me shivers and I get so excited to think that we could hear her someday soon. I had to get the lubricant out and put it on the trach and get it in. I don't know how long it was between figuring out the trach was out and getting a new one in, but it must have been at least a minute, and she still was pink. So amazing but still so scary. Please God let her be vent free.

Earlier when her vent came off when she was in her walker, she scooted away without the vent on her. She actually signs that she is "All done" with the vent. Hopefully she will do it to lung center. ;)

In other news, we bought a Suburban so we can drive around as a whole family. We were able to go for ice cream Friday night. Saturday we went to the park and took Ava on her first walk. She actually smiled the whole time and we also sat her in the grass. We pulled grass for her to touch and she even layed back in it. She loved it and it was so amazing to show her this at her age. I also had her touch an egg when I made some Apple Cinnamon bread. I had her crack it with me and stir the batter. She loves going places and enjoying new experiences. She is such an easy going child. God has blessed us so much with her and our other two ladies.

This past week we were also able to go down on her feed for her to eat only 16 hours a day at 53 ml per hour. It really helps to make her mobile and not be attached to a feeding pump. They also want her to slim down a bit and it might help her lungs not to have to work so hard. Did you ever imagine that a 1 lb. 2 oz baby was going to have to slim down? So funny. But we have been working on her legs quite a bit with her in her walker and her bouncers. She is also tired of playing with her toys. She goes through toys so fast. Anybody have some clean toys that we can borrow for a few weeks and give back?

Only a few days till all our doctors appointments. I can barely contain my excitement!

Thanking God for helping us and praying for incredibly awesome blessings this week...

Day 581 - ENT

Today we went to ENT (ear, nose and throat) specialist. This doc is really good and fast. He told us that if Lung Center goes down on her peep and she doesn't need the vent, we will go down in her trach size and she will breathe around it. She will naturally start to breathe out her nose because you can hear her breathe through her trach. He took the vent off and even put his finger over her trach and he said he would have never done that in the hospital. He was very happy with her results. She was acting a bit agitated but I don't think it was the vent being off but being in the stroller and wanting out. Even with the vent back on she still seemed agitated. We will be back in 3 months or sooner if the vent settings go down fast. I have no idea what Lung Center will do.

On her therapy side, she is really trying to stand now. We still have to hold her but she is planting her feet on the ground. So awesome!

Thanking God for this excitement and praying for her lungs to no longer need a vent...

Day 577

Another great day especially because our night nurse came in. We were supposed to go to the tractor pull in Alexander and we have planned it all month. Unfortunately our truck battery was dead probably because a little munchkin left the door open. So because we were afraid our battery would be dead in the middle of a field, we decided to go into East Aurora and make S'mores at a cafe in East Aurora. It was fun and I have been wanting to take the kiddos for a while. It was great having Anthony with us all day since he didn't have to sleep.

Ava had a fun day. I tried to give her some jello and she gagged a little. Didn't desat but it was so funny watching her touch it. She would pull her hand back so fast because it was cold. She signs that she is "All done" with the vent. I am trying to train her to do it for the doctors when we see them next Tuesday. We are also completely out of brand new trachs. We only have the extra trachs that we cleaned. We will get another 4 next week, but if she pulls it out again, we'll have to use the "used" ones. I guess we are lucky that we get 4 a month from what I have heard.

I forgot to mention that we closed on the house in Buffalo on Thursday. What a relief! We were told on Tuesday at 4pm that we were closing on Thursday and that they were having a walk through on Wednesday night. So we had to get in there quick and get all the boxes and garbage out from our tenants that left it. We weren't expecting to get out that quick but hopefully we can get a bigger vehicle to fit all of us and Ava's equipment and nurse.

Ava weighs exactly 12 kg = 26.26 pounds. We have an ENT appointment this Thursday.

Thanking God for Ava's life and praying that next week's Lung Center appointment is the news we have been waiting for...

Day 576

We are so excited with Ava's progress it's almost unbelievable. Every day is amazing and I am so sorry I haven't been blogging more. We really can't wait to go to Lung Center September 6th, which will be the day after we found out we were pregnant with Ava two years ago. It would be such a blessing to be out of this situation earlier than we expected. She still has a hard time eating but she did really good with OT on Thursday eating "Cinnamon Roll" pudding. Unfortunately Wegman's was out when I went there on Friday. We bring her to the dinner table every day so she can see what it's like to eat. But the greatest part of our days this week has been when the therapist has said that Ava's is such a miracle and her growth is a miracle as well. And I of course have a big mouth and declare that it's God's blessings. The therapist doesn't comment but I really hope Ava's adventures have made people think about God and his love. Ava is still pulling her vent off all the time but she isn't desatting and it's wonderful not having to feel so stressed getting it back on. She is even standing on my legs a little bit and pushing with her legs. She got IVIG (immunoglobins) on Tuesday and it went very well. It will hopefully be the last, but we will go to Immunology on the 6th as well for a review. I can't wait for everyone to see her. She is certainly "Amazing Ava".

Thanking God for Ava and letting us borrow her from heaven for a while and praying for Ava to eat and be vent free...

Day 568

Ava has been doing so well lately. She has been pulling her ventilator off and by the time we wipe it and put it back on, she doesn't have any trouble breathing on her own. Her saturations are mostly above 95 and when she gags she doesn't desat like she used to. She also used to close her eyes and breathe heavy when the vent has been off to long (maybe 30 seconds or less) and that doesn't happen anymore. I have always heard that when a child knows they can breathe on their own they will keep taking the vent tubing off. They also can be doing it because it becomes a game with them. But her normal symptoms that used to happen, don't happen anymore. Praise the Lord! She has also pulled her trach out twice now on the nurses. That is not fun but she hasn't seemed in distress.

She is also signing quite a bit for us. It's awesome to see her communicate with us. She doesn't like it when we make a "moo" sound like a cow. She breaks into tears. It's unbelievable. BIG gigantic tears. Poor baby... Guess she doesn't like cows.

Thanking God for Ava's growth and praying for continued growth and peace...

Day 563 - Ava got a new GJ today!

Ava got a new GJ today at Strong Memorial Hospital in Rochester. It went really well and the longest party was getting respiratory to bring us an oxygen valve for her vent circuit. She went completely under and she did fight the sedation a bit but I warned them that it took a lot for her. She woke up 5 minutes after the procedure. I didn't get to see the old one or find out how much water was left in the balloon. I asked but they thought it was ridiculous.

Thanking God that everything went well and praying that Ava can be vent-free...

Day 561 - Ava walked in a walker!

We had a great day today! Ava got a walker from one of her therapies today and she started pushing herself back to move. It's so exciting. She doesn't put her feed down still when you hold her up - maybe a little bit more than before - so we didn't know how she was going to do with the walker. Her PT is out until next week so I can't wait to see her reaction.

We also are bringing her over to our kitchen table to "eat" meals with us. We give her a sippy cup and maybe some fruit puffs (which she doesn't eat). She actually throws both over the sides. But at least she's understanding that we "eat" and sit together.

Ava weighs 11.85 kg. = 26.1 pounds!

Thanking God for Ava's progress and praying for more success...

Day 559

Ava had a really good week last week. She works so hard with her therapies. They say that she is on "Fast Forward" and really working through the things she needs to do. She is trying to stand a little more. I gotta tell ya though - it is really hard dealing with people in and out of our house every day along with the opinions. We really have no privacy and two of the therapies made a comment to one of our nurses about why I wasn't there all the time and how come I can leave when they are there. I don't think they understand what nurses are for - they are there to be an extension of myself so that I can leave the house and take care of things and the other two kids. Another therapy actually asked if she should only come when the nurses are there, as if I can't take care of Ava... Do they think this way because I'm blond? What makes these people think that I am incapable of taking care of my child and that I know her better than any nurse or doctor possibly could? Don't they understand that the hours are based on how busy you are, not just how the patient is. Do they think that the parents are untrained?

In other news, Ava gets her GJ replaced at Strong Memorial on Thursday. We were supposed to have ENT but that is moved to September 1st. She will be put under for this replacement. Hopefully the next replacement will be a new mickey for her tummy.

We no longer have nursing on Friday and Saturdays until PSA (our nursing agency) finds another nurse. The one that was supposed to train on Wednesday and Thursday decided that she no longer wanted to be a home care nurse. Anthony and I split up the night shifts so we can be with the kids during the day.

Thanking God for Ava's strength and attitude to fight and praying for her lungs to grow...

Day 553

So our newest news is that Ava has been signing for a week. She can sign "Play" in sign language, "all done", "more", "mommy", and she is picking up more signs every day. I got to visit one of our good friends today and she was very unhappy that I wasn't there at bedtime. I spoke to her on the phone and she went right to sleep. Oh how much I love it that she loves me! The other day, she was unhappy on the changing table and I was getting her ready. I asked her if she wanted to cuddle and she can't exactly sign "yes" yet so I told her that if she wanted to, just sign "more" and she DID! My baby knows what cuddling is... She is also trying to sit up from a laying down position. She tries so hard and then she just starts wiggling to move.

Please pray for our friends - their son was hit by a car. He has a broken collarbone, contusions on his lungs and a fractured skull which has lacerated his brain causing swelling and bleeding and more. We all have seen a miracle for Ava so let's pray for this young man as well.

Thanking God for Ava's brain growth and praying for a miracle for Andrew and more miracles for Ava... 

Day 549

Ava had Feeding clinic today and they said we don't have to go back until we actually get her swallowing food. Once that happens we can get a swallow study. While we were there she actually ate and played with a few bites of apple sauce. She loves to prove me wrong, right?! I told them she had a taste aversion and she goes and enjoys some applesauce! The speech therapist just told us to let Ava have fun and because Ava has such a good time with eating and is happy, she should eventually be able to eat.

In the meantime, I am giving her some apple juice in a sippy cup. She did take a couple of sips, didn't gag too much but she's really not that interested. Just like in standing up... Please keep the prayers coming, we have so far to go, but every day we get to see the miracle of Ava.

Ava weighs 11.6 kg = 25.5 pounds, head- 44.5 cm = 17.52", 29.75" length.

Thanking God for Ava being here and praying for her advancement to be a normal and happy child...

Day 545 - Ava is 18 months old!

Ava's made it to a year and a half! Praise God. She is almost to year two that the doctors said would never be. Oh how exciting the day will be when I walk her into NICU at Sister's! Nobody should doubt. Believe and miracles will happen! Sure, stuff happens. There is sin in the world but our God wants to bless us. Jeremiah 29:11 - For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. I remembering waking up and thinking this verse. It has gotten me through those horrible early days... Doesn't Ava look so good? She has come so far.

Thanking God for Ava's year and a half and praying for 90 more great years...

Day 541

Ava is no longer on O2 anymore. It definitely seems to have been her tummy. Her IVIG went well yesterday but we did find out that Ava's digestion is slow. It's only at 25% when it should be 50% or more. So that is the reason for all the problems with gastric juices. They are going to put us on a med to help it go faster. The med may cause some cramping and loose stools but hopefully that should go away. In 3 months we will go back for another gastric emptying study and see how the rate is then. We will also be getting a new GJ in Rochester since Buffalo hasn't been concerned about changing it in 8 months. Syracuse recommends doing it every 3. Our GI doctor doesn't think the J portion of it isn't blocking her to empty her tummy. She also didn't aspirate or reflux which is really good news.

Thanking God for Ava getting over this and praying that her tummy situation is fixed and becomes normal...

Day 539

Ava had a fine night after she desatted to 72 at 11:30 pm. The nurse bagged her and we put her O2 up to 1 liter. She gagged a couple of times today and turned a few colors but nothing to horrible. She was belly breathing quite a bit. I spoke to the doctor today and he wasn't overly concerned with the weather being so hot and air quality not being great as well as she was out for two days. We are just giving her albuterol every 4 hours and she is on 1/8th of O2. Right now she is satting 99 and seems quite happy.

Physical therapy came today and was really happy with how she was standing in her jumperoo. They even noticed her releasing the toys easily and playing so well with her new toys. It is so amazing. So overall it was a good day. Hopefully nothing will happen during the night. She just woke up a little but not in pain.

Ava weighs 11.35 kg, length is 77 cm, 45cm is her head circumference.

Thanking God for Ava's strength and growth and praying that she doesn't have to go back on steroids and whatever is going on will go away...

Day 537

Ava had her scan yesterday and everything went great with that. Last night though she woke up desatting and the nurse had to bag her twice. Not sure what is going on but she is not herself. She also sounded wheezy and we had to give her 2 puffs of her albuterol and a nebulizer treatment of the albuterol as well. She wasn't her normal happy self. We don't know if it is because she was out two days without humidification..?? She did have her HME's in line. She has no fever but she does get wheezy suddenly and drops her sats. She also wakes up after being sound asleep and she is in pain. She is able to come off O2 sometimes so the doctor says this isn't happening because she is sick. Please pray that we get some wisdom and fast... I don't want to have to take her to the hospital tonight.

Thanking God for Ava being here and praying that she is healed...

Day 535

We went in for Ava's scan today. It went really well although she did gag up 10 ml of the 70 mls of the food and dye mixture. But I think it went good because she actually spit up during the scan and I don't believe it showed any aspiration in her lungs. Yeah! But I won't know for certain until next week. She even fell asleep for 45 minutes of her hour long scan. We had to come back at 2:45 pm for another 5 minute scan. Tomorrow we have to go in again for about 20 minutes.

We used the Farrell bag like how it was created without using any IV tubing and she seemed to be doing ok with it (to empty out her gastric juices). She was a little more gaggy then normal.

Thanking God for Ava's patience and praying that we can feed her through her tummy...

Day 534

Ava had a good day but she was up at 3am and up for the day at 6am. The nurse gave her a puffer of Albuterol around midnight but I think it was just her pulsox acting up but who knows. I tried to get her to eat again tonight but she gagged as soon as she had the taste of the yogurt in her mouth. I worked with her on picking up the fruit puffs and seeing Ali and myself eating them. She was very interested but didn't put any toward her mouth. Please pray that she can eat. This is much more difficult than I thought it would be. Tomorrow is her gastric emptying scan in Rochester. Please pray that this goes well tomorrow too. We go back Friday morning again. I did weigh Ava again and her weight was much higher: 11.25 kg.

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

Day 532

Ava has been having a great time. So happy and playful. She has now been off the steroids a full week. She only need her albuterol puffers for about 3 days one additional time in the afternoon. Lung Center said we could stop the Atrovent puffer today! Yeah - another med gone!

We got a Jumperoo from physical therapy on Friday, and we have been working with her in that. She did really great today. When PT came by today, Ava sat in it and we helped her bounce for about a half an hour.

We weighed Ava tonight and it said 10.2 kg. That would mean she went down from the 10.8 two weeks ago. She may need more food... This week Thursday we go for her "Gastric emptying scan". Hopefully that will help us to see if she aspirates as well as refluxes. We are still having trouble getting her to eat easily without gagging. Please pray that Ava can eat.

And Ava is still breathing room air - it's been over 2 weeks now! Praise the Lord! So thankful every day for the gift of Ava (as well as my hubby, Alexandra and Ariana). What gifts they ALL are!

Thanking God for Ava's successes and praying this scan can help us figure out her tummy situation...

Day 526

Ava had a good night and didn't need any extra puffers for her lungs. She had three therapies come in today so she was quite exhausted by the third one. And the third one was meeting her for the first time and she was gagging like crazy and lethargic. Of course after they left she was so excitable the rest of the day. Physical therapy is concerned about her leg muscles and that she is turning her feet in a little bit when she stands. As well as she lifts her legs up. She went and bought Ava some high-top sneakers and hopefully that will work before we need to get orthotics. Please pray that Ava can strengthen her legs and learn to want to stand and can easily stand. The physical therapist is also going to find us a bouncer or a walker for her to stand in because her exersaucer is a little tall for her short little legs.

The lack of steroids seems to be going well but she did need another puff of her albuterol inhaler this afternoon. Hopefully it was only because she was gagging so much and she had more secretions because she went outside on the porch. Speaking of which, she sat under an umbrella outside for at least an hour and a half just playing and happy as can be watching her sisters. She didn't mind the wind at all and would smile at her sisters while she watched them run.

Thanking God for progress and praying that Ava can outgrow her gagging, can stand and no longer need a vent...

Day 525 - Steroids

Ava went off her steroids tonight. Please pray that it goes well and there are no signs of her needing them. It would be such a blessing for her little body. Maybe her face could actually not be as round. This week is the start where we will be getting continuous therapies coming in from 2-3 times a week for an hour each time. This is also the first weekend I will be away overnight and Ava is home without me. I will be at the Taste of Buffalo presented by TOPS which I volunteer on the board for all year round. Hopefully all will go well. I have probably only gone 2-3 days without changing Ava's trach ties or giving her meds to her at night since she's been home. Not that the nurses aren't capable, but I just like having the control and knowing how it's going.

Thanking God that I can go away and praying that Ava won't need the steroids...

Day 522 - One week today

Ava has now officially been off oxygen for a week. And for those of you that are confused - she is still on the ventilator but this means her lungs are getting stronger and hopefully she will be off the vent. Only God knows when that will happen, but our family dream is for next summer. So keep praying!

Monday she will go off her steroids and if that goes well she will also be off her Atrovent puffer soon after. Less meds - Yeah! It is so exciting! Just a week ago we thought it would be a couple of months for her to be able to last without oxygen for 24 hours.

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

Day 518 - More Good News!

Ava had her Endocrine appointment today and we have more GOOD news! The doctor wants us to go off steroids next Monday! No more 'roids! Praise God! We are able to go down to a 1/4 tablet and then next week, if all goes well, we can go completely off unless she gets sick. We don't have to give her a stress dose if she just gets a cold. We will have to wait a couple of days after to go off the Atrovent puffer. She hasn't been off the steroids for a very long time probably since she was a couple weeks old. I really wonder why the doctors at Sister's didn't put her on them right away? They made them seem so risky (which they are a bit), but the value totally outweighs the risk. I am sure I will find that out in the future. I sometimes wonder if there is something we could have done differently. We still don't know why that left lung has so much trouble. But this journey isn't just about Ava and our family, but a journey for us all. If a few friends and family get some help from this, then so be it. At least our lives have really meant something and made God happy.

The other news is the Cardiology doctor told our pediatrician that it's ok for Ava to live her life and be under 95 for her O2 saturation on her pulsox. He didn't bat an eye when he said she could be at 90% and he even said if she was 89 when she was asleep he didn't have issues with that either. I will have to have him talk to Lung Center to make sure they both are on the same page. She is now 3 days without O2! Yeah! She is asleep right now and she is at 98% saturation, ok, make that 99% (out of 100). Awesome!

Ava weighs 10.8 kg = 23.81 pounds. Length 73.9 cm = 29.09 ".
 Everyone is so happy that for 8 1/2 weeks Ava has been healthy! Her new record!

Thanking for this wonderful time and praying for continued success...

Day 516

Today we had a little party for Ali's 6th birthday with just her cousins whom she loves to play with. We are still too afraid to have any other guests, so please don't feel left out. Once we get through this winter and Ava is 2 1/2, we can maybe feel a little bit safer. The other part is I am so anxious when anyone is here because I don't want her to get sick and need chest compressions. I really don't want to be back at the hospital with her. The longer we away from being admitted the happier I am. Although going lately to see the doctors have been pretty awesome. Ava has been off oxygen for 1 day now. So incredible. I was hoping for it, but I didn't even think it would happen that fast. I love when God surprises me even beyond what I am hoping for! Today we were able to put Ava in her high chair and sit her next to Ali and Ari so she could be a part of Ali blowing out her candles. It was so great to have the three sisters and their cousins all together. These times especially that I don't have to go to the hospital every day, is something that I have hoped for.

Thanking God for our wonderful family time and praying for many more family and friend gatherings with everyone healthy...

Day 514

Today we went to a GI doctor in Syracuse. We found out a lot of information. Ava does weigh 10.6 kg = 23.37 pounds. We should be giving her Prevacid in her "G" port (stomach) because when there is a flair up of reflux, the prevacid that has been absorbed in the stomach will go into action. We have had many arguments about where that is supposed to go so at least that is solved. This doctor was extremely knowledgeable and explained everything to us thoroughly. He is going to have Ava have a "Gastric Emptying Scan" which is a little different than the scans she has had in the past. This will determine if she aspirates from refluxing. After we determine this and she how the scan is we can decide if we can go back to feeding in her stomach and if we can go down in the hours of feeding and eventually go to bolus feedings (like how she was being fed from birth and a year ago.) We also spoke with the nutritionist about the Peptomen Junior and she said that if Ava was eating breast milk and baby formula from the get go, she should have no trouble with Pediasure (which isn't a broken down feed). Peptamen makes Ava's stools extremely smelly and sometimes very loose. I told her it was decided in under 24 hours that Ava couldn't handle it. That was also during the time that she was getting the med Miralax that cramped Ava up. She said it should have been evaluated much longer like at least a week or more. The doctor went down to 20 hours of feeds and 46 ml of food. Same amount, just less time. If she does well, we may switch to Pediasure. July 7 is when we are supposed to have a scan but they do not know how to do it with a baby with a "GJ". I find it kind of scary since I can't imagine that a lot of normal babies get this done and no G or GJ fed babies don't in Rochester. I will have to call the GI doctor back about this next week. We also no longer have to give her Lactobaciilus. The doctor said if we didn't see a change that it sometimes doesn't help.

Thanking God for all of Ava's advances and praying for continued progress towards being vent and trach-free...

Day 512 - Another Praise the Lord kind of day!

Today was just plain awesome, wonderful, spectacular, exciting, glorious... I am so grateful to let you know that we were allowed and able to put Ava to room air today. She can breathe without the need of oxygen. We went to Lung Center and to my delight they decided to try her on .25% and then straight to room air! The pulsox seemed to be acting up a bit, and she did start gagging for some reason, but overall she did really well after I changed the pulsox on her foot. She didn't head bob or belly breath but completely looked comfortable. We did it again when we got home and she did pretty well. We are allowed to let her breath room air up to 4 hours a day. I am supposed to call on Friday and let them know how's she is doing. If she does great they may decide to keep her off all the time or at least during the day and then later at night! Praise the Lord! We also only have to put her at .25% if she is on any additional oxygen.

We also are using her inhalers (puffers) now only 2 times a day instead of the 4 times. In two weeks we can eliminate her Atrovent totally if we have no troubles! Such great news! The doctor even said something he has never said before - I told him that Ava's therapies want to know when she can be off the vent and I always tell them we don't know. He said I can tell them when she won't - And I said "Yeah, next year"; because that is what he said at the last visit - BUT this time he said "not THIS year!" Everyone was so excited to see how good Ava was doing and I asked our special RT if she thought Ava would be this good, and she said that she expected her to be good since VNA had let her know, but not THIS good. Oh how awesome! Ava's nurse and I felt like we were floating on air coming out of there.

Thanking God for Ava's progress and praying for Ava to be without a need for extra oxygen...

Day 507

Ava went to feeding clinic today. I was hoping for some new ideas how to feed Ava and we didn't get them. Basically they are afraid to feed her but we need to have her eat at least 3 spoonfuls before we can get a swallow study so everyone feels safe. They want to also talk with Lung Center to get clearance. We just need to work on her eating. I think I am going to try and give her cereal. Try it just like you would a normal baby and make it thicker.

The good news is that Physical therapy told me that Ava has grown developmentally in her fine motor skills from one month of skills to 12 months in skill level within a couple of weeks. It is so exciting to see what Ava can do. We still just need her to sit up completely and start putting her feet down.

Ava weighs 10.6 kg = 23.37 pounds. Length 74 cm = 29 1/4".

Thanking God for Ava's growth and praying for help with her feeding and for her to stop gagging...

Day 504

Ava got her blood taken today as well as went to her cardiology doctor. We had to wait for at least 45 minutes to get her blood taken before we got up and begged to be seen. If I had dollar bills I would have given dollars out just to get in. I am really hoping our doctor can get an in-home blood draw. We haven't heard if that is going to happen yet. I have been working on that for at least 3 weeks. That is also the place where she could get sick from.

Afterwards we went late to cardiology and the doctor was so happy with how Ava is looking. We don't have to see him for 3 months! He did warn me that Lung Center is not as aggressive as he is and they will take it slow. But he is very happy and feels like she is going to be off the vent. He also thinks with her growth we can hopefully be over the heart rate dropping response. Thank God!

Praising God for Ava's growth and praying for help with her blood draws...

Day 503

Ava had a great weekend. She is really doing so amazing. Her vent tubing actually fell in the tub today so I had to quickly change it, but it didn't bother her a bit.

Ava weighs 10.5 kg = 23.15 pounds, length is 75 cm = 29.53", head circumference is the same at 44.5 cm.

Thanking God for Ava's growth and praying that the lungs continue to grow strong and healthy...

Day 501 - Ava went to Darien Lake!

We had a wonderful day today. We got to all go out today and have fun as a family at Darien Lake. Ava had a hard time looking around because she was squinting. It wasn't sunny out and she wouldn't keep a hat on, but this was the longest she was ever outside. She is such a good baby. We dragged her around the park while the girls went on rides and she just watched everything, never complaining. We stayed from about 11 am to 1 pm. Alexandra and Ariana were so excited to take Ava out.

We finally got her Revatio med that she went without for over a day. Our insurance wanted us to go through a mail order, but we finally got it. Hopefully next time it will be easier. I just ordered her other meds to make sure we have them in advance and I haven't heard that they will be a problem.

Thanking God for Ava's growth and praying that we have many more fun times as a family...

Day 498

Ava had a great workout today with physical therapy. She is getting so much stronger. The therapist is amazed at the differences of each week. Ava put all her weight on her legs a couple of times today. I even got her to do it twice for Grandma tonight. The interesting thing is the therapist's biggest concern is how are we going to keep up with Ava and move all of her equipment when she moves. Not sure, but we will have to figure it out, huh! When Ava was doing all of her exercises her O2 saturations were even around 99 and her heart rate was great. I'm still seeing her expiratory volumes consistently being in the 100s even when she is asleep. I really hope Lung Center will make minor changes on her vent. Next week we go see Cardiology and Feeding Clinic. I could also go on about our constant drama with getting Ava's prescriptions, but I will only mention it, so if I ever forget in the future and I'm reading this, I will remember. ;)

Ava weighs 10.4 kg = 22.9 pounds. My big girl! She is getting so broad in her shoulders and quite muscular.

Thanking God for Ava growing leaps and bounds and praying for constant growth, especially of her lungs...

Day 495

Ava has been doing great still. We have been really busy here. Yesterday and today we had a homeschooling convention in Rochester. It was great to get away and not have to worry about Ava or about getting to the hospital. OT and Speech therapy were very excited about Ava's growth in a week. Monday we have all the evaluators coming in to review Ava and to discuss how many times a week they can come in. We are also looking to get her a kid cart so that she is more mobile. It would be great to take her on walks every day. Although we don't have a vehicle to put everyone into.

Ava's length is 72 cm = 28.35", and her head circumference is 44.5cm = 17.52". Length is so difficult to measure, so it is lower than last week.

Thanking God for Ava being home and praying for Ava to no longer need a ventilator.

Day 492

Ava has been having a great couple of days. Her nurse today even said that Ava was such a happy baby. She doesn't cry unless she's in a lot of pain. Ava really would have been my easiest baby. I think even with all of her equipment and meds, she is. Oh is Ava sweet. She can smile at you and light up the whole world.

Ava put all of her weight on her legs to stand up yesterday. She was being held and having someone plant her feet but she actually let herself stand. Today I worked on her straddling my leg and putting weight down on both of her feet. For once she was putting weight down and didn't dangle her feet in the air. It also feels like she is getting stronger under her arms so when I lift her up her arms aren't "flappy".

I found out yesterday that Ava's immunoglobins number did increase from 417 to 452. They still aren't happy with that. They want it to be at 500-600. She's not that far away but they are going to keep having her get the IVIG until August and decide what to do in September based on her bloods then. They still think she is lower because she was a preemie.

Thanking God for how wonderful our life has become (not to mention peaceful) and praying for our family to be illness free...

Day 489

Ava slept good through the night but she would not take a nap until I picked her up and held her. She went to sleep though for at least an hour and I was even able to put her back into her chair without waking her. She seems to be taking naps so late in the day, but she will not take one even if her sisters aren't around. Tonight our nurse couldn't come in so we don't have a nurse again.

Ava weighs 10.10 kg = 22.27 pounds. My big girly!

Thanking God for Ava's growth and praying for our family to stay healthy...

Day 487

Ava's nurse told us that she partied hard from 1 am to 3 am. She wouldn't go to sleep but just played in her crib. She didn't even really take a nap today either. I am still working on getting a blood draw in the home. Still no luck but hopefully our pediatrician can talk this company into taking us on.

Ava's head circumference is 44 cm = 17.32" and her length is 73 cm = 28.74".

Thanking God for Ava being home and praying for Ava's lungs to grow...

Day 485 - IVIG

Ava got her IVIG (immunoglobins) in our home today. She did better than I could have dreamed. She was pretty happy and calm the whole time. She only cried when she got stuck twice, but she is so easy going it's unbelievable. There were a couple of hiccups with Ava pulling on the IV line, and then the pump stopping and having to figure out how to give her the rest of the 10mls. I'm hoping this will be the last time she will need to be infused. Ava fell asleep at 5pm tonight and slept till 8 pm because she wouldn't go to sleep with all of the activity.

Thanking God for the great day and praying for continued protection...

Day 484

Ava had a great night. Her pulsox wasn't working and we still don't have a new one. It will hopefully come next week although we have asked for a new one since two weeks ago. Tomorrow Ava is getting her IVIG (immunoglobins). Hopefully this will be the last time especially if she doesn't get sick.

Thanking God for Ava's life and praying for a successful IVIG...

Day 483 - Grandma's Birthday!

Today was another great day and it's Grandma's birthday! We took Ava to developmental clinic today and she did really good. They did say that she has low muscle tone under her arms where you pick babies up. She really isn't picked up that much like that. They also told us the early intervention should help us find maybe a kid cart and a bath seat for her to splash with. She splashes all over the place in her tub. It's so funny.

Ava also had her labs drawn today and they got her on the first stick. That's a first! It went pretty smoothly and at least it's done for a couple of weeks now. We actually don't have any doctors appointments for a couple of weeks. Yeah! I have yet to measure her head and length so I hopefully will tomorrow.

We are having lots of drama with our house for sale, so please pray for us. Not sure about what to do. I am probably going to go into Buffalo tomorrow to work on the house.

Thanking God for Ava's good trip and praying for help in so many numerous ways... lol...

Day 482

Ava had a great night. She got restless at her 5 am time, but she hasn't really needed any gripe water or tylenol lately.  She ate some yogurt and when she started to gag, I told her to swallow and she would. I could see the yogurt end up in her gastric bag so I knew she was getting it. Too bad it's not helping her instead of coming out. I still don't have her Prevaid from the pharmacy/pediatrician.

Ava weighs 9.94 kg = 21.91 pounds. So close to 22!

Thanking God for Ava's growth and praying for her to eat and digest her food...

Day 481

Ava had a pretty good night with maybe a little fussiness. She really had a great day and only gagged a couple of times. I feed her twice today and she did really great. Gagged a little but she didn't really mind. We had a wonderful day outside because of the gorgeous weather and had our first picnic outside. The nurse was here until 6 pm, so I was able to eat outside with everyone including my parents. Tonight was even better because Ava was talking and responding to Anthony talking to her. I will put the video up that I caught, but I will have to do it probably tomorrow.

Thanking God for the great day and praying for Ava to eat and be healthy...

Day 480

Ava had a lot of fun with OT and speech today. She talked while they were here and pretty much did everything that they wanted her to. They said that she was so different from even a week ago. She really didn't take any naps today. Not much more than 30 minutes for the first nap and about 30 for the next.

Tonight we had recitation night for our homeschooling co-op. Alexandra recited the "Pledge of Allegiance" and waved an american flag. She even did a little jump at the end. Ariana recited the "Our Father". They were both the only children their age that didn't go up with their parents. They both did it in front of a room of about 50 or so people and didn't have any trouble speaking. Ava did great while we were gone until right before we got home. She gagged a little while she was sound asleep and scared our poor nurse. This was the same nurse that had to give her chest compressions the first time and was there the second time. This was only going to be her 2nd full night with her. But Ava was fine and only desatted between 72-77 when she bagged her. I think she originally went down to 82, and with our pulsox being broken and Ava moving, who knows what it actually is. Ava was a little fussy afterwards and her heart rate was down in the 80s but she was sound asleep.

The other good news is we already have an offer on our house. It's just a little under our asking price. Thank God for that too!

Thanking God for our family time and praying for much more when Ava can be with us and a vehicle that can get us all there...

Day 479

Ava ate baby sweet potatoes for me this afternoon and she did such a good job. She put the spoon in her own mouth and swallowed. Maybe we are really going to make some headway. She was really excited to eat. I love how much she wants to especially when she sees us eat.

Thanking God for Ava being home and praying for Ava's lungs to grow...

Day 478

Ava had a wonderful night last night and she had a good day until later tonight. We worked on a lot of things with her today. She was in her exersaucer for at least an half an hour and she did take a half an hour nap. She also took at least an hour nap this afternoon. She was still a little wheezy but nothing like the past couple of days.

I did find out that her EEG was normal. Praise the Lord! We also are only going to get her blood draws every two weeks. That's great because every week is such a pain for Ava and to drag her in and out of the house. We don't even have to get her out of the house at all this week.

Ava ate some yogurt tonight and she knew to put the spoon in her mouth. She put it far in herself and didn't even gag. She ate just a bit, but she did it for probably about 15 minutes before she eventually started gagging. Overall it was a great experience and she touched the food and got it all over her face and tasted it and the spoon. I am very excited about the future for Ava. She certainly has a story to tell after she comes out of this. I really hope she can help all the other preemies and people think about not giving up. That even when things are hard, you can make it through. And that it's easier to not complain and be sad about what you're going through but have a big toothy smile and move on to the next challenge.

Tonight though after Ariana and I left to go to Kohl's for a little bit, Ava started spitting up and crying. She had a lot of gas in her Farrell/Hackett bag and about 50 ml of gastric secretions. That is a lot for her. Not sure if maybe it was the food, but she had eaten that a couple of hours before and it really wasn't a lot.

Thanking God for Ava's progress in feeding and praying that we can get her feeding like a normal child soon and stop gagging...

Day 477

Ava had a great day and we found out that she scored so well in the cognitive area that the teacher didn't think she would qualify for her to come into our home. Ava does qualify because she is a preemie and is high-risk of being cognitive delayed, so that is good. She will never be delayed if I have anything to do with it.

I still haven't gotten a hold of the doctor to get her prescriptions refilled or to find out where we can go for another blood draw OR if her electrolytes were good. Hopefully tomorrow I can find out.

Thanking God for his gift of preserving Ava's brain and praying that she will grow beyond our wildest dreams...

Day 476

Ava had a pretty good night. She was up on and off early on with gas pains, and she stooled again which usually doesn't happen at night. She only woke up again at 5 am. She had a pretty good day but Occupational therapy couldn't get here today because she had a stuffy nose because of allergies. Ava did start wheezing again in the afternoon and we are figuring it is because of the changes of seasons. We are upping the albuterol to every 4 hours, and 3 puffs of her QVAR from the advice of the doctor.

I am pretty happy with myself because I was able to get quite a bit of stuff done today: Cleaned some of the house, got some projects done for work, taught Alexandra her lessons, called about some of Ava's med and supply issues and got some more work done tonight. We also put the house in Buffalo on the market. Please pray that the home selling process is easy. What a relief it will be not to have to take care of it. Although the extra income was nice.

Thanking God for a simple day and praying for our family's continued progress and for Ava's wheezing to stop...

Day 475

Ava didn't have the greatest night last night but it certainly wasn't the worst. She had to be suctioned twice and she was teething again. The nurse said that her four molars are coming in. I know the bottom two are but I haven't felt the top yet.

She had a decent day except she wouldn't take a nap for very long. We finally got an hour out of her from 4:30 - 5:30 pm. She also wasn't acting like her normal self afterwards. She was due for her trach change tonight as well but she was sounding very wheezy. We gave her albuterol before starting anything and suctioned her a couple of times because you could feel the secretions in her lungs. We changed her trach and noticed there was a lot of secretions in her trach. We cleaned it out and there was a lot of goop in it. It might have been her trouble for the past couple of days with her slight wheeze sound. Then we couldn't get her vent tubing from alarming from all of the water in the tubes and the circuit, so we decided to change it. I hooked her all back up and then the peep sounded so loud as if her vent was off and it kept alarming disconnect. So I changed it to a new circuit and everything was fine except Ava was still wheezy. I told Anthony that we will call the doctor after we give her the Albuterol, Atrovent, saline neb, chest pt, suction her and the QVAR. After we were done, we listened and she still had a slight wheeze. I had to empty her gastric juices and put them back in and after I did that, I listened to her lungs again and she sounded clear. Whew! Thank goodness! We didn't want to have to take her to the ER. I still called the doctor and she figured all of Ava's secretions were causing her wheeze. I did have to suction her a couple of times after changing the trach, but she still sounds good now. The night nurse who was on the two nights Ava needed CPR is back for her first night. Please pray that it goes well. She is nervous and so am I.

Ava weighs 9.90 kg = 21.83 pounds. Ava's length was 70 cm = 27.56". Head circumference was 44 cm = 17.32".

Thanking God for helping us with Ava and praying for Ava to be healthy and fight any illness or infection... or anything for that matter...