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...

Day 474

Ava had an ok night. She was kind of fussy and her disconnect alarm kept going off. The nurse didn't know that it meant there was water in the circuit. We changed the circuit but I guess it happened a couple of times this afternoon. Ava even stooled three times today while we were gone. Where were you, you ask? We got to take our two ladies to Fantasy Island in Grand Island with Stone's Buddies and ride on some rides and take them to lunch. It was a wonderful time. We didn't get back until 6:30 tonight and we came right in and gave Ava and the girls baths. We also stopped at our house in Buffalo and are going to be putting it on the market because our tenants (upper) are going to be moving out the end of the month. It is too much to deal with but please pray that we can either sell it or find some good tenants in the meantime. It was such a blessing for a time and I guess it's time to move on. At least I think that is what God is telling us to do.

Ava is now asleep but she was so happy most of the day and I guess she was talking quite a bit. What a blessing! Can't wait to hear her giggle!

Thanking God for this wonderful day to have Ava home and be able to go out and enjoy the day AND praying for more family time especially with Ava too...

Day 473 - Cognitively Appropriate

Ava had a pretty good night but was a little fussy around 5 am. Early intervention came (OT, speech and a teacher) to evaluate Ava. They were really impressed with her abilities. In fact, the teacher said that Ava is "cognitively appropriate" for her age. What an awesome gift from God! What he was always telling us has proven to be true. Ava is social, can mimic, can appreciate praise, can talk, can make eye contact, and much more. Heck, Ava can brush her own teeth! God is so great!

I still can't get through to Ava's pediatrician because he is out until Monday and the woman kept me on hold for 10 minutes waiting for another doctor. She never came back on to tell me if he was coming to the phone or not. Ridiculous. I don't want to change doctors but the some of the staff is so rude. Some of the other staff is wonderful too but those few women can make calling there horrendous.

Thanking God for his answers to prayer and praying for more answers and gifts from heaven...

Day 472 - 2 Weeks today Ava has been home!

Ava had to go to ENT today and get a blood draw since I couldn't find anyone to come into our home to draw it. We are going to be getting IVIG done in our home and that will be a huge relief to not have to be admitted into the hospital for at least 6 hours. Ava did really well on our trip and the ENT doctor told me that it is fine to suction her to 8 if needed when you can't get the secretions out suctioning at 7. He said she looked really great. So happy to hear it! I could hear that every day!

We went into Quest Labs in Lancaster to get her labs drawn and they are located right next to a Cigar shop and the place smelled like cigar smoke. It also didn't have air conditioning and poor Ava was so sweaty. We got in and they tried on her left arm to draw blood but they couldn't get the blood to draw back. They were going to try a heal stick but that wouldn't have worked for what they needed so they tried one more time. If they couldn't get it, we were going to have to come back tomorrow. Oh how our nurse and I were praying that they could get it! And she did! Praise the Lord! Ava did really well and was smiling afterwards. She is so amazing.

Tomorrow Early Intervention comes in to evaluate Ava. Can't wait to see what they say!

Thanking God for Ava's strength and for the blood draw and praying for help to get someone in our home to do the weekly blood draws...

Day 471

Ava slept really well last night and had a great day which I love to say has been the usual. She did spit up for me tonight around 9:30 pm again with clear foamy saliva and her gastric juices are still being drained out. I had an interesting conversation with the Pediatrician's office today. Last Thursday, our ped told one of the office women to call for all of our doctor's appointments to help me out. I called today to find out if they got anymore appointments and this other woman said that she knew nothing of them helping me out. And that they don't do that. And that I know my own schedule... blah blah blah. Of course, but I didn't tell them to make my appointments. I did give them a list of the days we were available and the PEDIATRICIAN nicely offered to schedule our appointments. They copied my list of doctors and their phone numbers as well. The woman got so rude with me that I broke down in tears and hung up the phone. She kept insisting they don't do that as if I was telling her to do it. She also kept saying "Mary, told me that we don't have to do it." Who the heck is Mary? The office manager, I suppose. They all know that Ava is pretty much their most critical patient and this woman is too lazy to help out even after the doctor told them to do it. Of course the doctor is away for a couple of days so I can't even let him know.

We had physical therapy come today and she hasn't had experience with a vent patient in Genesee County. Very interesting... But overall she said Ava did very well socially. Ha - that sounds like the Hackett family. We will be getting an eval next week from PT and the rest of the therapies are coming Friday to do their evals.

We are also still trying to get her blood draws to happen at home and that is not easy as well. I do think we will be getting her IVIG at home. That's a good thing because they would want us to admit her to the hospital for a couple of hours otherwise.

Thanking God for help and praying for some relief with Ava's care and scheduling...

Day 470

Ava had a good night and only woke up with slight gas pains. She had a great day until we went to Lung Center. The resident in Lung Center accidentally woke her up when he was checking her and she woke up with such a start that she was desatting. I picked her up and felt that she had secretions so the nurse suctioned her and I knew that she didn't go far enough to get it out. After she was done, Ava was still upset and desatting so I put her back in her car seat and suctioned her myself. I went down to 8 to get the secretions out and the doctor lectured me about suctioning that far. Which I know, but she needed the secretions out and unfortunately when you suction at 7 you don't get them. So when we were there it didn't look as if Ava is really doing as well as we are saying she is. He said that he wasn't going to probably going to do any changes this summer and most likely not in the winter. And he said she wouldn't be off the vent next summer. But overall they are going to see how she does. The really only make changes during the summer, which isn't that long of a season in Buffalo. Hopefully Ava can break down any preconceived ideas and kick this vent to the curb. I have already seen her volumes in the 100s versus 60s-90s prior to us going home the first time.

We see ENT Thursday and they should be able to tell us about suctioning her to get the secretions out and give us a doctors order to go to 8 if needed.

Thanking God for Ava's growth and praying for Ava to kick the vent out... lol...

Day 469

This kills me because I actually wrote this post a few days ago, but blogger must have deleted it. So here goes a recap almost a week later. She gagged at the same time a little after 1pm and a little later but it was a really good day. Tomorrow we go to Lung Center. Thursday we go to ENT. She seems to be on a really good schedule except for napping because her sisters seem to wake her up. But she absolutely loves playing with them. It is an absolute treat to have Ava home.

Thanking God for Ava being home and praying for Ava's tummy to get under control and eat...

Day 468 - Mother's Day!

Ava had a great night and didn't wake up at all. She gave me the biggest smile when I saw her this morning. It was such a blessing having the whole family together in our home and not having to leave to go to the hospital.

Ava did gain weight - 9.62 kg = 21.21 pounds. Yeah! She is getting so big! If she can sit up soon, I don't think she will be able to fit into her car seat anymore.

This video is of Ava talking. If you hear the weird noises in the background, that's her. ;)

Thanking God for my family and praying that we can grow in strength and are protected from illness...

Day 467

Ava is doing great still but she still is gagging a little and having a couple of spit ups. Everything otherwise is quite wonderful. Ava is always smiling and pretty happy. Alexandra, Ariana and I even got to go to a birthday party this afternoon. It's hard to believe I can be comfortable leaving Ava in the hands of a nurse. It is very exciting. Ali today said to me that she doesn't like that she can't spend more time with me. But I really think we should be able to soon.

Thanking God for the ability to leave the house and praying for protection and growth...

Day 466

Ava had a good night she had a couple gas pains and was up from 4am - 7am. The nurse gave her gripe water and mylicon and that seemed to help. Ava was also teething as well. I received some "Farrell" bags today to drain her gastric juices and let the air out of her tummy. Unfortunately, they didn't seem to work because the length of the tubing was very long and thin and Ava started having gas pains again. After rigging up something else to attach to the tubing and it leaking, I actually got a working bag that made her gastric juices and gas flow into the bag. It could be drained out and Ava had no problems. I have now invented the "Hackett" bag (the original bag is named after a GI doctor).

Today was a great day and we met with SKIP (Ava's service coordinators) and got that taken care of. She was happy all day and I had her sitting up for a bit too. I saw her clap her hands together. I even heard her talk a little tonight. She would not go to sleep again and was up partying and talking. Ava kept smiling at me and her sisters and laughing. Oh how we love having her home. I forgot to weigh her but we will this weekend.

Thanking God for Ava's adventures and praying for more ways to improve Ava's care...

Day 465 - One month ago, Ava came home for the first time...

Ava had a good night and was in .5 liter of O2 for a while but then she was satting only low 90s and the nurse bumped her up to 1 liter again. She had a great day and did spit up a couple of times and of course gag. We went to her pediatrician and he was very impressed with her. Ava was trying to sit up from a laying back position in her car seat and was pretty stable sitting upright. He said he thinks she is 7-9 months developmentally. We really think she will make great strides the next month and more. He is happy that she hasn't stalled on her development so he sees a lot of hope in the future and he can't believe how great she is doing. What a miracle Ava is! It is SO exciting to see how God has answered our prayers. I have seen her expiratory volumes go up into the 100s range instead of the 60s-90s which means she is able to breathe higher volumes. This hopefully means her lungs will be stable enough to breathe on their own and take on large volumes of air.

We are going to be seeing a GI doctor in Syracuse in June. Hopefully we can get everything figured out and not have to go back again. We have a lot of doctors appointments the next few weeks. What a busy summer we will have, but it is so exciting having our family together.

We weighed Ava and she weighed less but it was on our scale with a diaper on and her vent. 9.13 kg = 20.12 pounds.

Thanking God for my beautiful family and praying that we are protected from illness...

Day 464

Ava had a great night. She was up at 3 am being a bit fussy with her teeth, but she went back to sleep until 6 am. She only had a couple short naps today but most of the day she was very happy. She had a couple of gagging episodes but overall it was a great day. She loves to play with her sissies and smile at them. They both get so excited being around her.

Ava also was able to keep her balance while sitting up today for the at least a minute. She didn't fall backwards or forwards and when she felt a little week, she just put her arm out to lean on me but kept her whole balance to sit up! Yeah! Praise the Lord! Look what we can do in a week!

Our family friend Becky came again today. She usually comes once a week and thank goodness for her! Tony is away today so she helped me with cleaning the house, and getting Ava and the girls washed up. Also, thank goodness for my parents who come over to help me get all of Ava's equipment up the stairs (and down) and for still watching the girls while we are out for Ava's appointments. What gifts from God they all are! I am so excited to be a family at home and for the future.

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

Day 463

Ava had the best night she has had so far home. She barely alarmed and we slept wonderfully. We had an early Neurology appointment this morning, but it went really well. The doctor decided to go down on her med for seizures since we don''t see any seizure activity. He had us get an EKG done which was not fun for Ava since he scrubs off the top layer of her head and attaches the probs. It went really great afterwards because she slept but he also got all the activity he needed. If it looks good, the doctor will get rid of this medication probably at the next doctor visit! Praise the Lord! He told me that overall things looked good. We have a lot of work to get her developmentally appropriate but we already knew that. He said the outlook looks good though and I was very happy. ;)

She had no pains today which is great as well and she is going to sleep wonderfully right now after partying for about an hour. We are now giving her back her G juices every other time, and dumping them the other times. Her pediatrician spoke to the Lung Center doctor and she tried to talk him into dumping them completely despite that the GI doctor said it wasn't a good thing to do.

Her afternoon nurse today told me that she could see some good changes with Ava, especially that her head is getting rounder. Awesome to hear!

Thanking God for Ava being home and praying that we have continued and incredible success...

Day 462

Ava had an ok night. Had some pains but we did start giving her the Gastric juices back. She was happy most of the day and stooled twice tonight. Her GJ site is very sore looking. It really got gross at the hospital and its starting to look better now. It's 10:40 pm and she currently is having pains again. She wasn't having them earlier. Not sure still as to why. Her lungs do sound great though. We have another nurse on tonight since our primary one is still sick.

Thanking God for fun times with Ava and praying for relief of these pains for her...

Day 461

Ava had a lot of cramping during the night but she was fine after she stooled this morning. Not sure what is going on with this. Very happy and she loved playing with her sisters. She did have some cramping up again around 4 - 5pm tonight but after she stooled again, she was fine. When we put her in bed again though she was in pain. She did have some watery stool but was still cramping. Most of the time she is very happy when she is awake. We stopped giving her the G juices back and I was giving her meds to her very slow in case that was the problem. We really need some discernment on this. Please God help us!

Thanking God for Ava being home and not dropping her heart rate and praying that we can keep her home until she gets married ;)...