Day 157

Ava's gas was 71 this morning. She is in about 46 - 50% O2. I told one of her primary nurses today that I was told that Ava aspirated. The nurse asked the docs and they told her that wasn't true. SO here we go again... Wrong information. I am sadly disappointed with the amount of wrong information going around about Ava. Her nurse also was telling the nurse who was taking care of her today, that other nurses are saying that she doesn't have any happy baby time, and the nurse told her don't believe that, it's not true. I also wasn't even told that she had an eye exam yesterday. It only happens every two weeks, and it happened yesterday and I didn't even know. In addition, it's been over a week since they have measured her head and length. They are supposed to do that once a week, typically on Mondays. I am disappointed with the nurses (who aren't her primaries, whom we love) seem to not care and with all of the wrong information. The other nurses don't seem to want her because she's high maintenance. I think they want her out of there.

Ava weighs 9 lbs. 6 oz. - 4250 grams. She is 50 cm long - 19.69" and her head is 35.5 cm - 13.98".

Ava's eye exam is looking better. The retinopathy is still regressing which is good and they will see her in two weeks. Praise God that her eyes are getting better. Better to see all of us with ;)

Praying for Ava's health..

Day 156

Ava's gas was 69 this morning. They are happy with that, but it's still high and we can't lower her rate with that high of gas. She is in 53% O2 and 45% later this evening.

Whomever I spoke with today (since I couldn't come in because I have a slight sore throat), told me that she is on a tightrope and could go one way or the other. This person also told me that Ava aspirated her food two weeks ago and that is why she had all those problems. I told her that the doctor told me that wasn't true. I kept trying to tell her that isn't true, but she and (I believe) the new doctor that is coming on duty, believes it to be true. But I was told by a few of the people in her past team, that she didn't aspirate.

It really looks as if Ava is not going to get home in August. Her rate isn't going down, and they won't even try to feed her until that goes down.

Ava weighs 9 lbs from last nights weigh-in. Tonight she is weighing 9lbs. 4 oz. - must be water weight.

Praying for Ava to be healthy and get home to us...

Day 155

Ava's gas was 72 today. They put her back up to a rate of 50 bpms again. They tried to put her on the new vent again, but that didn't work when her gas was 98. They put her back on her regular vent and then they got a gas of 74. She is in 40 - 50% O2. She might be having high gasses because her potassium chloride is low.

In other news, I am sick with a headache and sore throat. Not sure why, and I'm really tired too. Don't really feel like doing much. Ava's nurse said to not come in until a day after I am feeling better.

Ava wieghs 8 lbs 15 oz. She went down a little.

Praying for Ava not to get sick...

Day 154 - 22 Weeks old!

Ava's gas was 63 today. Her O2 was around 35% during the day. They did lower her bpm to 45 and got a gas and that was 72. They still kept her at the same rate despite it not being very good. If we can get her off the rate completely she can then feed. Her O2 was 40% this afternoon. She is also eating 74 ml of food now. She is sleeping most of the day due to the type of sedative so she can not have any withdrawal symptoms.

Praying for Ava to get home to our family...

Day 153 - 9 lbs!

Ava's gas was 78 this afternoon but she was crying and there was a leak in her tubing. It did go down to 65 later. Her O2 is at 40% and it even went down to 39%. I am hoping they are going to go down on her rate tomorrow.

Ava weighs 9lbs 1oz!

Praying for Ava to be healthy...

Day 152

Ava's blood gas was 59 this morning. That is really good for her. I was hoping they were going to turn her rate down if they got a good gas, but her gas was 63, which is ok for her, but not good enough to go down.

She is in 35% O2 this evening but she is just satting in upper 80s so she will probably turn her up. She was in 45% all day. I called the Nurse Practitioner in today to see how Ava was trying to nurse today. She would turn her body and head and the NP saw it. Unfortunately she can't try eating again until her rate is lower (it is now at 50 breaths per minute). Please pray that we can get the rate off and her breathing room air (21%).

Praying for Ava to come home by September...

Day 151 - 5 Months Old!

I am proud to say that Ava is now 5 month old! Woo-hoo! Sad to say that she is still in the hospital. We were hoping that wouldn't have been the case, but at least she still is here and fighting. Ava was taken off the new vent during the night because it kept alarming and the guy who knows the machine the best wasn't in. Her blood gas was 69. She did lose the IV line that went into her groin and gave her the sedative and antibiotics. She was on the last day of antibiotics  so that is ok, but they aren't sure if she will have any withdrawal symptoms from her sedation. Tomorrow I can hopefully give her a bath in her new pink tub. She is in 45% O2 and satting in the mid 90s.

Our ladies aren't sick today, in fact they got better yesterday afternoon. I think Ali wasn't feeling well from her 5 year shots, and I have no clue about Ari - maybe sympathy pains?? Thanks for everyone to send your love to the girls.

Thanks Nickole and Jessica for coming over yesterday and helping out. Thanks Amy for setting up the meals too (and Millie for contacting her)! Thanks to everyone else that has been sending (and showing) your love to us and Ava. You guys ROCK!

Ava weighs 8 lbs. 13 oz.

Praying for Ava to stay healthy and not catch anything and in another 5 months she will be home for awhile and thriving...

Day 150

Ava's gas was 68 this morning and they put her on the new vent. She is able to breathe all on her own, but if she needs back up and stops breathing, the vent will take over. She is on 49% O2 and has been down to 45%.

My girls were sick today so I am hoping we are keeping it from Ava.

Praying for Ava to be healthy...

Day 149

Ava had a pretty good day today. Her gas was 63 this morning and then it was 57. Her O2 is down to 47%! Practically down to where it was before she got sick. She is still spitting up a little. We got moved into the isolation room, not because she needs to be isolated but because it's quieter and we need more room. I'm also thinking that once there isn't any more room, we will be moved to the PICU (Pediatric Intensive Care Unit) or to another floor. They didn't say that, but I have noticed the trend.

Tomorrow they are going to get a really expensive vent and hook it up to her. It's one of two of this type of vent. It is essentially a "smart" vent which will gauge how inflated Ava's lungs are and make adjustments to her rate. Hopefully this will help her to get off these high vent settings and onto the home vents. In addition then she can have her swallow study done and she can start bottling instead of needing a G-Tube. And prayerfully, she can breast feed. If you have ever seen a happy mama, it would be the day that she can breastfeed.

Tonight when I came in she looked at me so intently. I also got to get her ready for bed and move her around myself since we moved into the other room. I changed her diaper and her clothes, which you would think is easy and a normal thing to do. But it's not. It's the actual first time that I could scoop her up myself. LOVE it! =)

Ava weighs 8 lbs. 11 oz. - 3445 grams. She is 45 cm long - 17.72" and her head is 34.5 cm - 13.58".

Praying for Ava to BE and STAY healthy and to NEVER have a week again like last week...

Day 148

Ava's gas was 61 this morning, so they lowered her breath rate to 45 bpm. They took a gas afterward and it was 69. So they put the rate back up to 50bpm. Her gas then went down to 62. She was in 60% O2 and she was satting in the high 90s when we went in tonight. Hopefully they will lower it during the night. She has been spitting up some of her food, so they raised her sedation back up since they think that is why she is getting ill from coming off the drugs.

Ava now weighs 8 lbs. 9 oz.

Praying for Ava's healing...

Day 147 - 21 Weeks old!

Ava's gas was 76 today and 72 later in the day, so it has come down and they did not put her back on the oscillator. Her nurse said her color looked great and she was happy. She is finally back to full feeds but she is spitting up a bit. She also was able to stool last night as well. Her O2 was 80% and now it's down around 70%.

Ava wore her cute onesie for her daddy today (it says "I brighten Daddy's world") and the nurses made him a sign with her (love to say this) BIG feet. =P

When I was leaving today, she was looking at me and I told her how much I loved her and how God has blessed us with her and I started to cry and she looked like her eyes were watering, but she kept staring and holding my finger. Since her stay in the hospital has been so long and she is now not just a newborn that sleeps, I feel like she wants us to stay or to take her home. It's really heartbreaking. I want to grab her, run out of there, take her home, cuddle her up and have her sissies sing to her.

Praying for Ava's doctors and nurses to know what to do for her to give peace and healing...

Day 146

Ava's gas was 69 in the am, but late in the evening it was 79. She was around 80% O2 most of the day and even got to 100%. They are thinking she may have to go back on the oscillator, but the nurse says she isn't having a hard time breathing. They put her rate up to 50 breaths per minute. We shall see in the am if she is back on the oscillator. They are weaning her sedation so the nurse is concerned about that she will need more sedation if she goes back on the oscillator. She still has not had any major bowel movements so that could be her problem as well.

Ava now weighs after losing more water weight: 8 lbs. 14oz.

Praying for Ava's lungs to heal and to not get sick...

Day 145

Ava's blood gas was 71 and then 73. Her O2 has been at 65 - 100% and now it's down to 87% (at midnight). She hasn't stooled since last saturday, so they were getting concerned and they gave her a glycerin chip. They also gave her diuretics today and she now weighs 9 lbs. 3oz. I guess she has been getting rid of the excess fluid all day.

We were told tonight that Ava is the sickest baby in the NICU. Hard news to hear, but she is also the oldest baby in the NICU. They said that she could get sick again from the same thing which is an infection from her tubing. Pray that she doesn't get sick again because it would delay her going home for possibly a long time.

Praying for Ava to heal and stay healthy and come home to us where she can grow...

Day 144 - A better day...

Ava's gas was 69 this morning. It was 71 this afternoon and it stayed the same in the evening. She was up all day even after they were trying to sedate her. Her O2 was around 65% but it went up to 80% at times as well. She is definitely feeling better today and they put her back in her crib with her favorite mobile that we just bought. Anthony went in tonight and he got to hold her again for an hour. I really love our first primary nurse. She cares so much about Ava and treats her as if she is family. She even bought her two outfits and texted me every day this week to find out how Ava was.

I found out that the nurse yesterday wasn't giving me the right info. Ava didn't aspirate and the infection she had could have been the cause of her illness.

Ava weighs 9 lbs 6.5 oz. - she seems to be swollen.

Praying for Ava to be strong and healthy...

Day 143

Ava's gas was 71 today and 63. Ok, but not super great. Thankfully, she's still on the vent and now she is back to eating. Her nurse today told me that it's going to be awhile before she gets better. Her primary nurse tonight told me that she hear Ava aspirated (had food go into her lungs) into her lungs and that was what was causing all of this. I didn't hear that at all, so I don't even know if that is true. She is on about 85% O2 and satting in the high 80s or low 90s.

I appreciate the comments and emails after my vent yesterday. This experience has been an eye-opener for me as well, realizing that I can and could help more people in need. If you feel convicted, I hope that you will help out a friend in need, whether it's picking up the phone and listening to them, or even bringing over a meal for them. Anthony shared this youtube video to me about anguish. http://www.youtube.com/watch?v=lGMG_PVaJoI
Feel free to watch it, it talks a lot about how anguish can help you find God, and about the difference between anguish and concern.

So, I had a suggestion from my friend to put out a list. I do feel awkward asking but this helped (and is helping) my friend through her hard times. She has suggested the following:

Ongoing needs:
- someone could on a weekly basis pick up your laundry take it home and bring it back washed and folded and separated into piles
- at a time you are at home they could come over and clean - like vacuum, mop, put dishes away, clean bathroom
- bring meals - maybe twice a week
- contact - call, leave messages, text, post on blog, cards
- watching the girls in Buffalo so you can bring them with you in the car
- needed toys/clothes for girls/Ava
- watching the girls at your home so you can nap/pump/work
- mow the lawn since Anthony never has enough time
- when Anthony is gone come over in the evening, help get girls into bed and then watch a movie and have a snack and adult time together

I do thank you Elena for your offering of babysitting, and Fran for your card and gift card on a day that I really needed it. I must say my Mom has some great friends. It's not as if there aren't people that do some things. It's that the people I thought I/we are close to haven't called in a month or more, and have virtually disappeared, while others when I ask for specific things to help my children - won't, or they expect me to be on top of things all the time and plan ahead.

I have never been in such an extreme circumstance before, and hopefully most people I know won't ever be. People really don't have to have the right thing to say, I would rather talk about something else other than Ava and our problems. I love pretty much talking to others and getting my mind off Ava, because right now, it's too hard to think about what's she's going through. I don't expect people to drop what their doing and think about us all the time, but a phone call every once in a while is nice. I think most people in need feel the same way.

Praying for Ava's healing...

Day 142

Ava's gas was 58 this morning. She is on 90% O2. They were able to get her down to 60% for a few minutes after going back on the normal vent. Her gas was 71 this evening and 100% O2. She has IV lines on every body part except her right arm and face. She even has a line in her groin. They found that she had a staff infection and something else, but they don't think that is what caused her to get so sick. I don't really know if she can even come home anytime soon.

So, now it's my turn to vent. Today I realized, that I have friends in my life that expect me to cater to their time schedule (who virtually have no major problems in their life), and my support system, day in a day out, are the people who birthed me. I think it's sad that people are so wrapped up in their own lives, and this world, to not help somebody in need. I vented to a dear friend of mine who also has been through a horrible, devastating family situation. She told me that people were there to help or care in the beginning, but after awhile it dwindled and it has resulted in TWO people taking the time out of their every day lives to talk to her and show they care. I am proud to say that I am one of those two. I have even helped her during my situation with Ava. She also told me the sweetest thing, that she prays to God to show her how she can help me since she lives a few states away. That doesn't mean that we are there for each other every day, but every week we show each other how much we care. She sends me very sweet uplifting letters. But tonight, after I pushed back my tears at my daughters bedside, I came home after tucking my children into bed and my husband was STILL not home from his work trip, I wept in the shower. I wept for my daughter that is lying in a hospital bed almost 5 months old and doesn't know what it's like to be held like a normal baby and will never be a "normal" baby, I wept for her not being able to enjoy being fed, I wept for a world that is mostly concerned about themselves and for people that need other people to help or care. We have a missions field right here in our every day lives, and people still can't take time to look outside of themselves and pick up the phone to see if someone needs something, whether it's a meal, a hug or to talk. We have groups to help each other, one of them I even belong to, but I have not had a phone call in at least a month. My husband has been away since early Sunday morning, and I have had to deal with Ava's sickness myself along with the numerous other times, she got sick when he was away. This is not a whine session, this is my reality. I'm alone and dealing with seeing my baby have a needle in almost every part of her body. I don't have time to think of things for people to do for me, or to tell them to call me and quite frankly I am afraid to ask, because I feel I would inconvenience them. I would hope that there would have been a community to help people out when they are in need. I can't even believe that I need help or would have ever needed it. You don't even know who to turn to. But tonight, what I realize is, that I can only control myself, and I will continue to think of others and help them out, even if I am in this horrible situation.

Praying for Ava to heal and feel peace...

Day 141

Ava's gas finally came down today to in the 50s. Her O2 on the other hand is at 100%. Her blood and urine cultures have come back negative. Her limbs were cold today which is a sign that she is ill. She is on antibiotics to help her if she does have an infection. It's so sad to see her laying there temporarily paralyzed and sedated. She opened her eyes to look at me tonight and say "Why mama?" I need my baby in my arms and home so badly.

We are basically figuring out that Ava is very fragile and for the meantime, we are going to stop having visitors. Especially because we don't know what Ava has. Once she does get home, we will have to plan on staying home, as directed by many doctors. I don't think even the doctors knew how sensitive Ava is. So, just to let you all know, we love you all and we want to see all of you once Ava comes home, but for Ava's health we will probably not be having visitors. In addition, Ava can't really go many places since we will be carrying around a vent, suction equipment and a nurse. I can't even drive by myself with her in the car. I always have to have someone in the car in case she stops breathing and needs to be suctioned. It's really sad, but once she hits the summer of being two, we can hopefully have a nice party and be able to breathe a little. I met a nurse today who has a 5 year old that was born at 27 weeks. She says that her life is never the same and that they are constantly going on doctors appointments, and as she called it "getting tune-ups" for her son, when he goes in the hospital. It doesn't take much for Ava to use up all her reserve and get sick.

Praying for Ava to heal and get home...

Day 140 - 20 Weeks Old! And a bad day...

Ava's gas started out bad this morning. It was in the 80s and then it climbed to 100 and then 106 before they put her back on that oscillator. They got it down to 62 a couple of times, but now it's at 93 again (9pm). Her O2 has been anywhere from 65% - 100%. Her gas was 80 at 11pm. Her O2 is at 100%.

She's not able to move at all because the vent keeps popping off, so they keep her pretty well sedated. I feel so bad for her...

They think she has some sort of infection and her urine came back moderate, so that could mean she has a urinary trach infection, and that could do all this to her. They thought earlier that it could be moving the peep the other day to 8, or even getting milk (aspirating) in her lungs.

Praying for Ava to heal and to get home to us happy and healthy...

Day 139 - 44 weeks

Ava's blood gas was 72 this morning. Not good especially after it went down yesterday. It needs to go down so her breaths per minute (rate) will go down. She can't go home on a rate.

Her nurse today thought she was acting odd. We came in and she looked so white. But after she heard that we were there, she perked right up. I was there for her to get her food, and we gave her the paci and squirted milk from a syringe into her mouth while she was sucking and she LOVED it. She sucked on her paci for over 45 minutes and it would get upset if it came out.

We bought her a rainforest mobile from Fisher-Price since she is getting so bored with sitting awake in her crib today. She loved it! I heard she stared at it for over an hour. We also bought her a rocker bouncy seat. I feel like this is my first child since we need to buy almost everything new or colorful for her. I'm also looking for a pink tub with a sling in it. I can not find one in ANY store, so I may just have to buy it online. Fisher-Price didn't even have the cute pink one in the store. Anyone seen a pink tub around?

The nurse also suggested getting this cool octopus that hangs and it's arms move and when the kids are older it makes a light show. Has anyone seen that? She said it came out a couple of years ago. We feel so guilty not being able to be there all the time with Ava. She just sits in her crib all day staring at things.

Ava weighs almost 7 lbs. 14 oz.

Praying for lung healing and to breast feed...

Day 138

Ava's gas was not too good this morning. It was 76, so they put her Peep back up to 9 and her rate when back up to 40. Her blood gas finally came down to 62 later this afternoon. The nurse thought they were going to hesitate on feeding her, but they still had her try and feed. She is in 39% O2.

Ava did really good with the bottle today. She didn't cough or really gag. She gagged only once when she usually gags more than that. They put her on CPAP (without the breaths per minute helping her) and she settled after 4 minutes. Then she took the bottle and was sucking really well. She even stopped to breathe. The speech therapist was pleased and if she hadn't seen the other two days she wouldn't even think about the swallow study. The swallow study will probably be sometime later next week. Not on Monday. They are going to only have her feed for the speech therapist next week and not the nurse this weekend. While she was eating, she satted really well, and her heartrate was fine. The speech therapist stopped sooner than I thought she would and Ava ate 6 ml.

Praying for Ava to heal and feed easily...

Day 137 - I got to feed Ava!

Ava had an interesting day. She had a blood gas of 69 this morning. The lowered her peep to 8 and her gas then was in the 70s. They upped her peep back to 9 and her bpms went from 25 to 30 to 35. Her gas was still in the 70s. Her O2 was at 35% this afternoon and is now at 40%.

I went in this afternoon at 1pm to help give Ava a bottle. She took 11ml. It was absolutely amazing and scary at the same time. The speech therapist wants to put her to breast as soon as possible. They were going to do a swallow study tomorrow but now it may be moved to Monday. I cried with the joy of being able to feed her and waiting for this day to come. Everyone still doubts that she can completely feed from a bottle or breast feed, but I know the power of prayer... Please pray for this... It would make me one happy mama, and keep Ava from having another surgery for a g-tube in her tummy.

Ava weighs 3550 grams - 7 lbs. 13 oz.

Praying for Ava to heal and eat well...

Day 136 - The Day Ava drank from a bottle

Today has been the day we have been waiting for since she was born. She finally ate from a bottle. She only ate 12 ml (out of the 70ml she is fed), but it's a start. Some babies won't even feed from a bottle at all after being on a vent that long and not bottling. She did gag and cough a little but I heard she went at the bottle at one point "ferociously". They will probably test her by watching her somehow (x-ray or something like that) to see how she swallows and if she aspirates (cough milk) into her lungs. All in all, they were happy, I was happy but I missed the whole thing because the parking ramp and valet parking was full so I had to find a spot really far away.

Ava's gas was 61 and they lowered her to a rate of 25 bpm. They will possibly put her on the CPAP, and maybe even when she eats from a bottle which is once a day for now. She was down to 37% O2 today. Tonight she is on 35% O2. That is really good. I don't think I have seen her that low.

Ava weighs 7 lbs. 11 oz. This bottom photo is Ava in a swing with her "wubanub" - pacifier attached to a stuffed horse.

Praising God for Ava's life and praying for her to feed from a bottle and get stronger...

Day 135

Ava's gas was 61 today. She is down to 44% O2. She is also on a rate of 30 breaths per minute. They are hoping to get her rate down to 20, and the pressure down a bit and they will put her on CPAP. Then they will try and feed her. They never told me that before. They changed her trach today (a day earlier than expected), and I was able to hold her.

Ava scared me today when her vent became detached when I was holding her. The nurse was having a hard time re-attaching it because her head was propped up because of my arm and her triple chins were getting in the way. It took over 30 seconds to attach and at that point she was turning grey. It made me sick to see her that way.

I found out that Genesee County hasn't seen a preemie case for nursing in over a year. I am hoping that won't make her nursing care delayed. I am hoping that they will work faster since they only have Ava.

Ava weighs 7 lbs. 10 oz.

Praying for Ava to be able to feed and heal...

Day 134

Ava's gas was 63 this morning, 51 this evening and 61 later tonight. They put her down to 35 breaths per minute. She satted in the 90s the whole time were there tonight and the nurse said that she didn't see Ava desatt at all today. She is up to 70 ml of food. They will change her trach and string that is around her neck on Wednesday. I should hopefully be able to hold her then.


Ava weighs 7 lbs. 9 oz.


Praying for Ava to grow strong and healthy and to bottle and breast feed.

Day 133 - 19 weeks old!

Ava's gas was 57 this morning and 54 this afternoon. She is on 68 ml of food and is on 50 - 54% O2. She has not desatted all day (gone down on the percentage of O2 in her blood). I never saw her go below 90% O2. She always went below 90% before the trach.

My mom and I went in to see her today and she seemed pretty happy to see both of us. She would turn her head towards me. I can't even explain how much love I feel for her. My arms ache from not holding her since Thursday. She is God's gift to our family.

One of our other gifts are my parents. Without you, Mom and Dad; Anthony, the girls and I couldn't have gotten through this past year without you. I am forever grateful for watching our ladies and helping to raise them despite their daily adventures of sisterhood. Dad, I will bring you out to see Ava whenever you want me to.

Hopefully I can hold her soon. Wednesday they will change her trach and take out the stiches. Maybe by early next week, she can start trying to feed. She sucked on her paci really well all day but was gagging for me a bit. I am hoping she won't gag on the bottle.

Praying for her lungs to grow and to be able to be fed...

Day 132 - The Day After... 43 Weeks

Ava was pretty calm today and around 3pm she was allowed to eat again. They are keeping her sedated and giving her pain medication so she doesn't hurt.

She is at 51% O2 and 40 bpm, down from the 45. Her blood gas has been 56 and then 51. That is good and hopefully they can wean more from the support since she can breath on her own. She just needs the pressure to keep her lungs open.

She seems pretty happy but the hose to her trach seems to come unattached easily. It happened 3 times when Anthony was there today. She was great tonight.

Her primary nurse this evening told me that hopefully she can (and she emphasized this): Bottlefeed. She repeated it, and I said that the docs said that hopefully she can breast feed. This nurse is kinda snotty. My friend met her the other night and couldn't believe the attitude she gave the other nurse. This nurse feels like she has been there over 20 years and knows everything. Oh, she must not know our God too well and doesn't really know Ava... She is still doing well on her pacifier. She can only keep it in her mouth by holding it for her.

That's her feeding tube in her photo, it's in her nose, so her mouth can be clear.

Praying, praying and praying...

Day 131 - Trach Day

I am so sorry for the delayed blog. Alexandra and I actually left to go to Rochester for a homeschooling convention after I left the hospital. It was great to be able to spend time with her.

Ava had her trach put in around noon today. It went well, but she is hard to keep sedated and they have wanted her to be "paralyzed" so she can move the trach out. Unfortunately, the drugs run through her and are out in about 40 minutes. They think it's because she has been given so much sedatives in the past. Her CO2 blood gas is 56.

The nurse at night told me that Ava would move her head in whatever location the nurse moved to. So, I'm thinking she can probably hear her and see her. Now, she has the ability to easily move her head.

She also has less secretions out of her mouth and she has the ability to suck her pacifier. They said that was the only way they could calm her down.

They will change her trach in about 5 days. Right now, the have stiches in to hold the trach in place. If the trach was to ever come out the wound would close immediately.

For the first time ever, we have the ability to see her beautiful face. I cried when I saw it. She is pretty puffy, but I am so in love... I can't wait to bring her home.

Praying for a speedy recovery and the ability for Ava to nurse...

Day 130 - Tomorrow

Ava's gas was 71 this morning but she was getting blood and getting blood taken. She was in 55-60% O2, and she was satting really well. She was on a rate of 35 bpm this afternoon, and now they are at 40, and they are not sure why. They think she may be puffy and retaining fluid again. They thought it was this morning because they were bothering her.

The eye doctor came in and I believe they said that her eyes were "regressing" which means they are getting better. Praise God!

We spoke with the ENT doctor and the Physician's Assistant tonight and they went over the trach surgery. The physician's assistant was really positive and excited and hopeful for the outcome. There are risks of course, but we will always be positive. Ava will be in a bit of pain, but they are going to sedate her. The surgery will hopefully be done around 11am, possibly earlier, and it should take an hour and a half. We are hoping that she will be able to come off of the O2 and be able to breathe room air. Eventually we are hoping her left airway will grow larger and her lung will get stronger with time and being at home. If it doesn't she may be with a trach forever. Hopefully that will never be the case. They don't know that since every baby is different.

We also got the discharge nurses business card. I loved seeing taped to Ava's crib. I LOVE the word discharge. It may not happen within a month, but I love that fact that we can hear it.

I asked the Physician's assistant more about feeding, and she told me that they will first try to dip her pacifier in milk and then see if she can suck, swallow and breathe before giving her a bottle. If she can't, they will do a swallow study where they take her and see if she aspirates (food goes in her lungs) her food or if it goes to her stomach as well as if she has the gag reflex. This will be a long shot that she can feed, but we know that God has given us some great surprises like her eyes and heart.

Ava weighs 7 lbs. 14 oz. She gained over 193 grams, something must be wrong.

Tomorrow will be the first time we can see her entire beautiful face. We can't wait!

Praying for a great day tomorrow and awesome results...

Day 129 - Friday is the day...

Ava's gas was 57 this morning. She was at 60 - 70% O2. She is also OFF the Nitric Oxide.

We found out that her surgery will be on Friday, hopefully by noon. They are going to speak with us tomorrow more in detail.

I was able to give her a bath tonight and hold her again. She sucked with her paci for 15 minutes again. The nurse (who didn't even know Ava) who helped me with Ava's bath told me that Ava really knows me. That made me so happy. I changed her in one of her new outfits that I love.

Ava weighs 7 lbs. 7.5 oz.

Praying for Ava to heal and to be able to fed with a bottle...

Day 128

Ava's gas was 62 this morning. She is on 60% O2 during the day. She is on 1% Nitric Oxide.

I haven't heard a confirmation that the surgery will be on Friday, but I believe they are waiting to get her on the schedule once she is off the Nitric Oxide which should be tomorrow.

I held Ava while she ate again today and also gave her the pacifier. She sucked on it today for 15 minutes. Hopefully she can handle the milk.

Ava weighs 7 lbs. 7 oz.

Praying for Ava to not be in pain and for her to be able to eat well...