Day 188

Ava's gas was 72 this morning. I went in this afternoon and Ava was happy in her crib. I got to hold her for a bit, and then she went asleep. Occupational therapy came in and evaluated her and told me that developmentally she is around 2 months so that is good. She needs to work on sitting up and leaning for a bit and probably lying on her tummy. I sat her up when OT was there, and she kept her eyes on me for at least 15 minutes. He tried to get her to look at her toy, and she looked for a second, but couldn't keep her eyes off me. It was really good bonding time and I hope breastfeeding will go good on Monday. She even took her pacifier really well, even when dipped in milk. She didn't even gag.

Praying for Ava to grow healthy and strong...

Day 187 - Swallow Study

Ava's gas was high this morning - 77 and 92. But she wasn't happy when they got the gasses.

We did our swallow study at 2:30pm today. It was so hard on Ava. We had to roll her down the hallway in her bed, and into the x-ray room while bagging her. Then we had to put her in a seat like a car seat but a little more upright. She was mad and she kept sliding down and moving her head to the right. I was trying to give her the pacifier but she didn't really want it. Tried giving her a bottle of barium (yuck!) so they could see it go down her throat. Finally after pushing a syringe of barium in her mouth and the paci in, she finally swallowed a little. We didn't know if we got any results, but we did and it did go down her throat and not into her lungs. Thank God! So we are going to try and breast feed on Monday. Hopefully I can make that happen with going to Kingdom Bound.

The nurse said tonight that she goes brady (heart rate goes down) and desatted. I don't hear about it too often but it has me concerned that it happens often. I don't really know why. I will have to ask if it happens every day.

Ava weighs 5.42 kg - 11 lbs. 9 oz.

Praying for Ava's lungs to grow strong and healthy and to breastfeed on Monday...

Day 186 - Trying to feed Ava...

Ava's gas was 84 this morning. She is on a peep of 8 and still 38 bpm and 40% O2. I was able to bottle her for a bit today and she did ok. She seemed to really want to do it. Just before we were going to try and see if she would breastfeed, when they put her in my arms, after untangling her from all her wires, she was really upset. They had to "bag" her (blow O2 into her lungs with the manual bag), and then her PIC line came apart, so back she went into the bed. So close, yet so far. Tomorrow they are going to do the swallow study and see if she aspirates.

Ava is really fussy. I pray for peace with her. She is such a fighter. Even the doctor that was on this week said so. She actually said that she isn't worried about Ava since she is such a fighter. But I really just wish my baby, who is so precious didn't have to go through all of this. I am just hoping for a better future for her, which is completely possible, where she doesn't have a lot of worries and will be off the trach.

Praying for Ava to breast feed tomorrow... Oh what a day would that be ;) (that and the day the trach comes off, oh and the day she comes home...and the day she doesn't need the g-tube...)

Day 185 - Doc Meeting

Ava's gas was 72 this morning. We met with the doctors this afternoon. They told us to expect to have Ava in the hospital for months before we can expect her to even get to a home vent. They said she needs to be stable on the same settings and to help her grow. They also said good nutrition is what got her this far. I asked to possibly be able to breast feed. They have never done it before, but they typically don't have moms that pump this long either. They are willing to give it a go, if they think she won't aspirate.

Hearing that Ava might not come home for months breaks my heart into a million pieces. They have seen other babies like her (one about every 4 months) and she can probably grow out of it as long as she doesn't get sick. I just keep hoping they will be wrong about Ava, but at least Ava is still here.

Praying for more miracles...

Day 184

Ava's blood gas was 78 today. She got her PIC line in, but she is covered with IV lines in her. One in her arm, one in her foot and her stomach looks like she has been in a knife fight. I am trying to find out what happened in surgery. Otherwise she went down to a Peep of 6 in her vent settings and is same in everything else which is really good. They started feeding her breast milk again today.

Ava weighs 11 lbs. 4 oz.

Praying for Ava to heal...

Day 183

Ava finally got to eat again today. She was still in pain a bit, but she was sleeping when we came in. We changed her trach which literally made me nauseous doing. It is the scariest thing I think I have ever done, and what's odd is that I know it will become natural to me, just like the vent tubing popping off. And I will of course, do anything to get her home, so I will get the trach figured out in no time. The nurse that taught us, also was Hunter Kelly's nurse. She is off of the methadone now and the are going to put a PIC line in her tomorrow so they can administer meds and be able to get better blood gasses.

Praying for Ava to feel better soon...

Day 182 - 26 Weeks Old!

Ava's doing pretty well. She looks a lot better today than she did yesterday. She had another blood transfusion late last night. This surgery seemed to take more of a toll on her than the last one. Her temperature went up slightly last night but came down with tylenol. She is getting tylenol and morphine to dull the pain. She is not able to eat for 48 hours and will be able to eat again tomorrow. They took out the drainage tube in her mouth from her stomach earlier this morning and she seemed happier. She seemed to sleep pretty well today. Her vent settings are the same which is really good. The doctor said she could possibly go back on the oscillator after the surgery, but that's not happening.

Praying for Ava to heal and be able to bottlefeed well this week...

Day 181 - 6 Months Old Today! And Surgery #2

Ava is 6 months old today and 2 months corrected (gestational age)! Happy Half Birthday Ava! You have blessed our lives so tremendously and I can't wait to see how you will bless this world. Thank you God for our Baby Ava and for letting us keep her here with us.

Ava had her g-tube surgery today at 10:30am. It went well, but she had a minor complication when her vein got cut when they were trying to extract the gas from her stomach. They sewed her up and she is doing ok. She did lose a little blood and did look pale. She is still in 40% O2, peep of 6, 38 bpm.

Ava's is 54 cm, 21.26" long.

Praying that Ava's vent settings stay low and she heals successfully...

Day 180 - G-Tube

Ava's gas was 54 this morning. Really great! I got a call early this afternoon from surgery saying they wanted to bring Ava in to give her a g-tube. Or we would have to wait until next Friday. It takes a week for her to recoup. I approved it and we were expected to go in around 4 pm. Unfortunately due to complications in the surgery prior, we have rescheduled till tomorrow.

I'm so exhausted from this week that I can't write anymore. Anthony will be home from a week-long trip which will be nice so he can be with me during the surgery.

Ava weighs 518 kg. - 11 lbs. 4 oz.

Praying for a successful surgery tomorrow...

Day 179

Ava's gas was 51 tonight! Amazing! She is in 40% O2, peep of 6, 38 bpms. She is letting the vent breathe for her when she sleeps but that should get better and she does breathe over the vent when she is awake.

The speech therapist came in today and brought up the aspirating possibility the last time she was in. I told them that the prior doc said that wasn't true. She didn't try to bottle her but put the pacifier in. The speech therapist was also supposed to call me but she didn't.

Ava weighs 11 lbs. 3 oz.

Praying for Ava to come home...

Day 178

Ava's gas was 69 at 5am, 65 at 11am, 72 at 6pm. Pretty decent until 6pm tonight. They changed her to 45% O2, a peep of 6, rate of 40 and pressure over peep to 22. After getting an xray they saw part of her left lung was collapsed so they put her peep up to 8 and pressure over peep to 24. After getting the gas of 72, the put the pressure over peep to 25.

The doctor told me that she can go home on a peep of 8 and maybe a rate of 25. If she got on a home vent with that rate or no rate, and stayed stable for a week, she could go home. After she either has a g-tube or is eating her full meal.

They are looking to have a speech therapist come in tomorrow and see how she swallows. If she does ok, then we can move back to bottling. Next week we are going to meet with Lung Center and the PICU staff to figure out a plan on getting her home.

Ava weighs 11 lbs. 2 oz.

Praying for Ava to not get sick, get those vent settings down, and to bottle her full meal...

Day 177

Ava's gas was 90 this morning so they put a "femeral" line in her today to get her blood easily and not to upset her when they get the gas. Her next blood gas was 58, which is awesome. Tonight at 6pm, her gas was 80! Ugh! Never ending... They didn't even do any changes. The doctor did say that we have done a good job and that she looks good. Her lungs don't look too bad. I saw her x-ray and from what I remember at seeing the x-ray at Sister's, her lungs looked less hazy and much bigger. But so is she, much bigger. ;) She is in a peep of 8, 50 bpms, 50% O2 (which they have not weaned yet, and it needs to be told to be done by the docs and not just done by the nurses like it was upstairs). They will do another blood gas at midnight, which I will probably not stay up for.

She had an echocardiogram on her heart and that came back normal. Her ph test probe came back normal and that she does have some reflux but it isn't acidic, which is good. She had her GI done to check out her intenstines, and they also saw reflux in her esophagus. They may do another procedure to stop the reflux when they do the g-tube, but those doctors are going to come and see me tomorrow.

I also spoke to the doctor about feeding and he said that she could eat with her breathing on a rate and he will have someone look at her swallowing with a pacifier tomorrow. Hopefully that can be started again and her blood gas will be good so we can lower the settings more. The doctor is very upbeat which is nice.

I am nervous that the doctor is thinking she is better than she really is. That is what seems to happen and then the blood gasses don't go down. Still praising God for Ava to be here!

Ava weighs 11 lbs. 3 oz.

Praying for Ava to get some good blood gasses tonight and the rest of her life...

Day 176 - Ava moved to the PICU!

Ava moved today to the PICU. She didn't not have much fun, but later in the day I settled her down and she was sleeping. They lowered her settings to 50 bpms, and a peep of 8. Her O2 was 50%, but they haven't worked to lower it yet, which they could. The originally got a gas when they lowered her bpms to 40 of 80, but then we they upped her settings to 50 bpms, her gas game down to 64. So they kept her at that. They also sedated her a little and upped her steroids a little bit to what should be in her body. He said that it won't cause damage to her brain, unless it's high use for long periods.

I found out from the lactation consultant today, that I am the only mom that has gone 176 days of pumping. I told her I will make the record even longer as long as it helps Ava. ;) We ran out of milk this morning in the NICU because we found out that they dumped all whole days worth of milk because it had an additive they put in, that bothered Ava. Every feeding is 110 ml times 4. I don't make that kind of milk in a day, so I am sad that we lost so much.

Ava's GI test will now be tomorrow.

Praying for the PICU to get Ava home to us and please let those settings go down...

Day 175 - 25 Weeks Old!

Ava's gas was 69 this morning. The PICU (Pediatric ICU) came down today to check her out and they decided to move her tomorrow morning. They also lowered her settings for the move. They got a gas a bit later and it was 74. They decided to go back to the original settings before the move. They will probably go down tomorrow and try and few things.

Praying for Ava's lungs to grow and be strong...

Day 174

Ava's gas was 80 this morning and then they took another one and it was 78. She is in 40% O2. They didn't make any vent changes.

The PICU is coming to visit Ava tomorrow to see if they should move her.

Ava weighs 10 lbs. 13 oz.

Praying for the home vent to work...

Day 173

Ava's gas was 63 this morning and 62. They wouldn't go down on the rate. The doctor told everyone to not go down on the rate until it's below 60. She is in 36% - 40% O2.

She is also going to have an upper GI done on Monday to see how her intestines look and to plan her surgery for the g-tube. They also are thinking of putting her on a home vent to test her out on Monday. That would be really great and if she can handle it, it would mean she could possibly come home soon once she gets the g-tube. Please pray for this. I know Ava would do so good at home.

We went down to the PICU (pediatric intensive care unit) yesterday. It's quite different than the NICU and we would rather skip going there if possible.

Praying for the home vent to work on Ava's lungs and for Ava to come home...

Day 172

Ava's gas was 60 this morning and 72 in the afternoon. She is in 36% O2. They didn't want to wean her rate since they are lowering a few of her steroids and medicines. She is currently on a lot of medications so they are hoping to get her off some of them.

She had the PH test probe taken out at 3pm today and we will get results sometime next week. This will also tell us if her acid reflux is very acidic.
I spoke to the doctor tonight who wanted to know if we are up for Ava getting a g-tube in her stomach so she can eat and get home faster. We can still try to bottle and breast feed her, but in the meantime she would be fed through a tube in her tummy. The doctor also wanted to know how we felt about putting her in the PICU (Pediatric Intensive Care Unit). We are ok with both things as long as we can get her home sooner rather than later. I may have to be at the PICU more since Ava will have her own room and may not have as much interaction as she does now in the NICU. We also talked about her getting her pacifier dipped in milk again to encourage her to suck while her food is going down into her stomach.

Anthony is back home tonight but unfortunately he missed my uncle's funeral today. I had a reading and overall it was a very nice ceremony. It was good to see my mom's side of the family who we don't often see. Some didn't even know that I had another baby. But I found out my cousin David reads this blog every night. Thanks David (and everyone else) for continuing to read Ava's blog and for caring. I hope I can continue to bring you good news and Ava home (with lots of photos).

Thanks O'Connell Family for this adorable outfit. I had to get a bootie shot of the ruffles.

Praying for Ava to get better...

Day 171

Ava's gas was 60 this am and 59 this evening. I was hoping they would go down in her rate, but they did not. She is in 36% O2. They put a PH test probe in her nose to her stomach today to see if she has acid reflux. They also want to know how much since it can also hinder her lung growth. It will come out tomorrow and it will be in only 24 hours. Her nurse said she handled it very well and was the best baby she has seen in terms of handling it. Ava is such a good and happy baby!

Praying for Ava to come home in August and not September or later...

Day 170

Ava's blood gas was 72 this morning. They didn't do anything with her settings today. She was supposedly very cranky this morning, so they upped her methadone because they think she is having withdrawal symptoms. I along with her nurse tend to not agree. Ava didn't have her primary last night. Now she is on every 8 hours to get a dose, instead of 12. She is in 50% O2 and went down while I was there to 45% since the day nurse who doesn't know her, had her during the day.

Ava weighs 10 lbs. 11oz. She is 49 cm long - 19.29" and her head is 38 cm - 14.96".

Praying for Ava's lungs to heal...

Day 169

Ava's gas was 60 this morning so they went down to 55 bpm. Her next gas was 80 so they went back up to 60 bpm. She was crying when she got her gas so that is probably why it was high.

We got some really good news today - Ava had her last eye exam for 6 months today. Her eyes have gotten better. I don't know to what degree, but this is great news. We have come a long way to hear that.

Ava weighs 10 lbs. 10 oz.

Praying for Ava to get home soon...

Day 168 - 24 Weeks Old!

Ava's gas was 70 this morning. Her base excess was up to 16, so that could be why her gas was higher. She is in 45% O2. Tonight her gas was 81. She is in 50% O2.

This cycle seems never ending. It just seems like she is never going to get down in her settings. She is in 60 breaths per minute. It is so high just to get the CO2 off of her lungs. She doesn't even breathe that fast normally.

Ava weighs 10 lbs. 6 oz.

Praying for Ava to get home to us so we can love her up...

Day 167

Ava's gas was 75 this morning and 76 this evening. She is in 50% O2. Anthony and I both got to hold her at different times today and she slept really well when Daddy was holding her.

Sorry for the delays in posting. I'm staying in downtown Buffalo for the Taste of Buffalo. My uncle also passed on this morning. We pray that our family and my Aunt has peace and we can celebrate his long life. Uncle Bob was around 90 when he died. I will find out his exact age later.

Praying for Ava to grow her lungs and come home to us...

Day 166

Ava's gas was 108 today after they changed her vent setting to a different mode. When I came in she was breathing very heavy. Her nurse moved her trach and straightened a bit and she started breathing better and easier. After that change, amazingly her gas was 56%. She is in 50% O2. She definitely is scaring me lately.

She is eating 86 ml of food.

Praying for Ava to come home soon...

Day 165

Ava's gas was 76 this morning. They are concerned about the leak around her trach and ENT told the doctor to not go up in a trach size. She is currently at 4.5 size trach which is typically the size that a 2-3 year old uses. They noticed that her outake of O2 is not comparable to her intake. The ENT doctor said that her trach straps were too loose. So we changed them and made them tighter. The ENT doctor said that it could make a huge difference in the CO2 coming off her lungs. She is in 45% O2.

Ava weighs 10 lbs. 5.5 oz.

Praying for Ava to get down in her vent settings...

Day 164

Ava's gas was 107 this morning. It then went down to 85 at 10:30am. She was in 53% O2. She is also breathing harder and was up to 70 breaths per minute while I was there. She is in 50% tonight and is breathing 52 bpms. I have been concerned with how she's acting. I just hope nothing is really wrong.

Ava weighs 10 lbs. 5 oz.

Praying for Ava to heal...

Day 163

Ava has been pretty agitated all day. She must have gas but she was screaming in pain. I have seen it with the two other girls. Eventually she calmed down once Anthony and I held her. Her day nurse though she may be getting more sick, but we shall see tomorrow. She is in 45% O2 and will have a gas in the am. They gave her mylicon to help with the gas.

The girls and I went and bought her a toy today. Anthony and I played with her with it tonight. She was wide awake and staring at it.

Ava still weighs 10 lbs. 2 oz.

Praying for Ava's health...

Day 162 - 10 lbs!

Ava's blood gas was 68 this morning. Not too bad for Ava but her body levels are off a bit still. Hopefully those (her base sx) will come down to 10 instead of 14. Her nose isn't runny any more so that is good. I think it's still a little stuffy but the nurses don't seem to notice. She also doesn't have any secretions in her lungs.

Ava is now officially 10 lbs 2 oz. and can barely fit in her newborn clothes. Hopefully with her belly growing, her lungs will grow healthy and strong! She is 48 cm long - 18.9" (last week they said 50, so they must have measured wrong somewhere) and her head is 38 cm - 14.96".

Praying for Ava to come home...

Day 161- 23 Weeks Old! Happy 4th of July!

Ava's in 45% O2. Her nose is so stuffy that she can't even suck on her pacifier at the same time as she is breathing. The good news is that she doesn't have any mucous in her lungs. We changed her trach today. I have never seen that done before. It's definitely intimidating and plain scary. It's scary trying to take care of a handicapped child. But I know I just want her home. Hopefully she won't be moved into the pediatric unit until mid-August and hopefully she will be able to come home soon after that. It's a long shot, but I'm still hoping...

Praying for Ava to come home...

Day 160

Ava's only getting blood gasses on Monday, Wednesday and Friday's. She is in 40% O2. She does have a stuffy nose so she still has a humidifier over the top of her.

Ava weighs 9 lbs. 12.75 oz.

Praying for Ava to come home...

Day 159

Ava's gas was 72, but something with her the levels in her body are making her CO2 be high. Not her lungs. So that will hopefully come down. Her O2 is at 40%.

She does have some boogies in her nose so she has a humidifier surrounding her body to keep her nose moist. Hopefully the secretions won't go in her nose.

She probably got sick from our girls. Ariana had to go to the doctor yesterday for a sinus infection and asthma problems. Now, Alexandra has a stuffy nose too. I am feeling good though.

Ava weighs 9 lbs. 13 oz.

Praying for Ava to not get sick...

Day 158

They didn't get a gas today because they are getting her gasses Monday, Wednesday and Friday. She is in 36% O2.

Ariana is still sick, pretty sick with her asthma acting up, so I didn't stay very long. Plus our nurse has a slight cold today and she can't take off because she won't get paid for the 4th. Please pray that Ava stays healthy. Her monthly time to get sick is coming again - the 12th - 20th.

The lung center came in today and our nurse asked if they had seen any babies like Ava survive, and the doctor said that she has seen babies grow lungs. Yeah - we know Ava can break down all the odds!

Praying for her to get healthy...