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...