Day 738

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

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

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

Day 733

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

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

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

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

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

Day 730

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

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

Day 727

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

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

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

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

Day 724

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

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


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

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

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

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

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

Ava weighs 12 kg = 26.5 pounds.

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

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

Day 720

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

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

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

Day 718

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

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

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

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

Day 715

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

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

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

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

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

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

Day 710

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

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

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

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

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

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

Day 707

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

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

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

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...