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...