Day 127

Ava's CO2 gas was 63 this morning and 59 this evening. She was in 59% - 55% O2 during the day and 50% at night. She was only sedated once today and then I heard at night she was looking around quietly. I wish I could have been there to see her! I went during the afternoon and she slept in my arms and ate her food and sucked on her paci for 20 minutes. The nurse says she wants to suck so hopefully she can eat the milk just fine.

After being a half an hour late leaving, I ran into Ava's doc that will give her the trach. This was such a great "accidental" meeting, because he told me it was his plan to trach Ava on Friday. The doctors all weekend told me that they didn't know. I am hoping to hear tomorrow that it's in the schedule. Praise God for that "random" meeting. It made me really happy.

Ava weighs 7 lbs. 9.5 oz. - 3445 grams. She is 45 cm long - 17.72" and her head is 34 cm - 13.39". She eats 70 ml every 4 hours.

Praying for Ava to be healthy and perfect in Jesus's image...

Day 126 - 18 Weeks Old!

Ava's gas was 52 this morning and 60 this evening. They went down on her Nitric Oxide to 3.

I held her while she was fed and gave her the pacifier and it went really well. Hopefully she will know to eat and suck while we are holding her.

Praying for Ava to be healthy...

Day 125 - 42 Weeks

Ava's gas was 53 this morning, and 52 this evening. She was on 35 - 45% O2 most of the day. That is REALLY good. Especially with being at 100% last weekend. They weaned her Nitric Oxide down to 4. Her O2 tonight is at 52%.

I got to hold her and I had an idea to give her a pacifier. I put it in and she did really well with it. I then had an idea to give her a pacifier every time we hold her and then she will be accustomed to being held and sucking. The nurse thought it was a great idea and then if we were in when she was going to eat, they could give her a part of her food so she would put feeding together with sucking. They would give her the rest after we are done holding because her acid reflux is so bad. Today they decided to break up her feeds into two - one half and hour later the other half to help with the reflux since she refluxed her food today.

Ava weighs 7 lbs. 6 oz.

Praying for the surgery to be next Friday and Ava to be able to eat by bottle AND breast...

Day 124

Ava's gas was 48 this morning and 58 this afternoon. They put her down to 25 bpm. Her O2 actually went up to 82% today. She is down to 55% tonight. Her Nitric Oxide is down to 5 ppm. She may possibly come off the vent, now that we know she needs pressure.

Praying for Ava's O2 to come down...

Day 123

Ava had a gas of 58 and another gas of 46. They went down to 35 breaths per minute and then 30 breaths per minute. She is down to 48% O2. Her gas was 62 this evening and she's on 54% O2. They kept her at the same vent settings. She is now eating 70 ml every four hours, instead of every 3 hours. This will help when we get her home.

She had her cat scan today and it went well. They didn't find anything protruding in her lungs. They did fine more blood vessels and arteries on her left lung, but they were not abnormal so they wouldn't operate and scrape them off. We are moving ahead to get the trach. The doctor only does surgeries on Mondays or Fridays, and Monday ofcourse is a holiday. Maybe it will happen next Friday. Keep you posted as always... She will stay on the NICU floor afterwards.  After her trach spot has healed (probably about two weeks) they will try and bottle feed her. If that works, then I can breast feed. I am SOOOO praying for that. =)

Ava weighs 7 lbs. 6oz.

Praying for Ava's health and to be able to feed...

Day 122 - Camera Time

Ava's gas was 68 this morning, and was 58 this evening. They put her peep up to 9. She was in about 70-85% O2 all day. Tonight she is up to 70%. I went in this morning at 7am for her procedure at 7:30am but because we were delayed due to figuring out what to do with her Nitric Oxide, (which they usually only have to deal with the vent) we ended being put to later in the day. We were told around noon, so I waited around all day, and they got to us around 3pm. My poor honey hadn't eaten since midnight the night before. She did get some sugar water to keep her sugars up in her body.

Today was a big step to bring Ava home. The doctor examined Ava with a camera that went down her throat past her vocal cords and into the top of her lungs. He didn't find anything wrong with her vocal cords. What he did find was that her left lung is collapsed, meaning it needs pressure support of the vent to keep it open. When they take the support off of it, it collapses, when they put it back on, the lung opens. He also wants to get a cat scan to make sure there isn't anything underneath her lung pushing it to collapse. We are hopefully going to get the scan this week, but it depends if they are able to get the scan when she is on Nitric Oxide. If there is something pushing on her lung like her heart, then she will need to have surgery for it.

Finding the lung collapsed is both bad news and good news, because now we know why she is having so much trouble and can't get off the ventilator. The bad news is that this means she will probably need to be ventilated for more than a year with a trach. We were only hoping for a few months, but it could mean up to 2 years, it all depends on this lung strengthening and growing strong.

Once, the cat scan is taken and the results are seen, we will then move ahead with the trach. After the trach is in, and the vent settings are stable for two weeks, we can then start looking into getting nursing at home. From what I know, that takes around a month to get the nurses established, and then we can take her home. I don't know if we will get round the clock nursing, but we do get at least 12 hours a day. It's up to a lot of different things like our insurance, our job status, etc. Hopefully her vent settings will dramatically drop due to the trach, because there is less space for the tube to effectively aerate the lungs. The other good news that hopefully is possible, is that after the trach is established they will try to bottle feed, and if that works, I can try to breast feed, which I have been hoping to do since the day I found I was pregnant with Ava. If we can't get her to bottle feed, then they will move to put a "g-tube" into her stomach where we will pour breast milk into tube that goes to her stomach. We will definitely be having some new info once I start learning all about our options.

Ava weighs 7 lbs 10 oz. She had a huge increase so we will see tomorrow if she had a lot of fluid or was it really a good gain.

Either way, God is working to get Ava home to us! Thank you Lord! Thank you for giving me the sense at 6 weeks that Ava was going to be a living part of our lives and to fight for her.

Praying for Ava to be able to bottle/breast feed and get her beautiful self home to our family...

Day 121

Ava extubated (pulled her tube out) herself TWICE today. Once early this morning, the other time at 3:15 this afternoon. The nurse this afternoon was not nice to me and when I asked her over the phone if I could hold Ava, she shouted "NO!" at me twice. None of these nurses know her and I haven't been able to hold her in TWO days. Tomorrow she is going to have her primary nurse again, so if she comes out of the "surgery" fine, I should be able to hold her (I hope).

Her blood gas was 61 and she was in O2 anywhere from 67% to 80%. Tonight she was on 80%.

She will have her "surgery" (putting a camera down her throat, by her vocal cords and in her lungs to see if there is anything wrong) tomorrow at 7:30am. I will let you all know asap how it went. They may make a firm decision based on what they discover in her throat and lungs, on what to do next with Ava.

Praying for the "surgery" to go smoothly, not find anything wrong with Ava and to make a decision on moving forward...

Day 120 - 4 Months Old!

Ava did extubate herself again last night and was on 100% O2 after having such an awesome day. She was on 100% O2 again, but did manage to get down to 60% during the morning. The day nurse who seemed to barely even look at Ava, pumped her up to 90% today, and she did get down to 80%.

The nurse tonight never knew Ava and I think she was nervous getting her because of the different bar they use to put the tube in her mouth. We are getting frustrated and just wish she could come home. She will have a scope down her throat and into her lungs on Wednesday. Not sure what time yet, but pray that nothing in her gets damaged because of it. I fully believe they won't find anything, but we are hoping that she will come home whether or not she is on a trach.

Ava weighs 7 lbs. 4 oz. She is 44 cm long - 17.32", and her head is 33.5 cm - 13.19".

Praying for Ava's healing...

Day 119 - 17 Weeks Old!

Ava was between 50 - 60% O2 this morning. Her blood gas was 63. During the day she was up to 80%, and down to 67% O2. She was doing really great today and I'm hoping for a great night. When I held her it was great, because she was wide awake, and then she fell asleep and you just knew how happy she was. When I put her back in her bed, she was very unhappy. The nurse tonight told me that she can get her O2 down if she suctioned her mouth and lungs out because she had so much fluid, that she was sat higher.

The girls did NOT get sick or sicker today and we didn't either... Thank God for that!

I just found out at 11:30pm that Ava has extibated herself again. Not sure how the tube came out but it did...

Praying for Ava's lungs to get stronger and healthy...

Day 118 - 41 Weeks

Ava is still on 100% O2. I'm not sure how to feel about this. This could be a temporary condition like things usually are, but when you live in a day by day status not wanting to be dictated by your circumstances, this could be a huge problem.


Ava is still at 100% O2 this evening and her gas was 70. Not good. My girls in the car this evening were begging God to "Please bring Ava home. She is such a cutie." When we were at dinner tonight, Ariana got sick all of the place so we had to pack up the food that we had just gotten (the food didn't get hit) and leave. I am praying that she is not contagious and feels better soon. As well as Ava doesn't get sick from it either. If we get sick, we won't be able to go see Ava tomorrow.


Ava now weighs 7 lbs 2 oz. Her blood gas is now 56. She is satting in the mid 90s.

My good friend Jenn sent me a link to a blog that has been seen on the Focus on the Family and has quite a few followers about her baby that she lost: http://www.audreycaroline.blogspot.com/ 
I have not read much of it yet but she is a great writer, much better than I and is much more descriptive, and I honestly am exhausted by the time I am typically writing this, to write gorgeous prose. She just wrote on her January 23, 2008 post the following:
"We are not praying because we believe that God will heal our Audrey. We don't know that He will. We are praising Him because He can."
My thought on this as I sit here (supposed to be in the shower but instead I'm thinking about all the feelings that are running through me), and I am hoping this is coming from a biblically based woman, but I feel that God has instilled a feeling in me that Ava is supposed to get through this and get home to us and she will be fine. I believe strongly that God is going to heal Ava. It's harder to think that every day when Ava is not better, but she is still living. I don't know how much of her life is called "living", but she is here, and she is still a baby and she will forget all these things. I know that she wants to be home with her family more than anything, and my arms and heart ache for her every day. Most days I feel as if my heart is going to break in a million pieces and why can't my baby be home with us? My beautiful Ava that has never done anything wrong and will be an asset to this world. I do feel this is all in God's time, but things need to happen. It's not good for her to be on 100% O2. She is at her maximum. And I think we are too.
Praying for Ava's healing...

Day 117

Ava's been at 100% O2 all day (we breathe in 21% O2). She is fortunately satting in the upper 80s and low 90s. The doc and nurses seem pretty upset with this development. They are now thinking she will need a trach. They are going to give her two weeks, but they don't know how she will do with the surgery. They are possibly thinking that she is growing but her lungs are not. They cut down her food to 47 ml, and upped her calories to 30.

Ava weighs 7 lbs. 1.5 oz.

Praying for better days and Ava to get healthy and FAST...

Day 116 - 7 lbs!

Ava had a really good day today. She slept most of the day and the changed the hept trap (I think that's how you spell it) to her foot instead of her head. The "hept" trap is where she gets her sedation and any antibiotics.

Her nurse today was really great and learned the Ava is very "social". She talked with and she let me hold her despite that she had never helped a mom hold a baby that has been on a vent.

I finally got to meet the mom that I have speaking to since the beginning that had quadruplets that passed on, and then she had twins that were in the NICU and survived. It was great to meet her! They are having a NICU reunion picnic in August. Hopefully we will be OUT of the NICU by then.

Ava still has been in O2 around 88% today but at least it went down. Her blood gas was 71 and then she suctioned Ava good and her blood gas came down to 58 which they were happy with.

Ava weighs 7 lbs.!

Praying for Ava to come home soon, happy and healthy...

Day 115

Ava's gas was 68 during the night and 61 this morning. Her O2 is between 90 - 95%. Her echocardiogram came back the same as last time, that there is no known problems. Praise God! Her blood pressure is still on the high side, but it is a little lower. She is till in 95% O2 this evening.

The nurse told me today that a trach wouldn't solve all of Ava's problems, whatever that means...  I love opinions from people that have had my daughter from one day.

When I held her tonight she was wide awake and it was so sweet to be able to look into her eyes. I even put my finger in front of her and she was able to follow my finger with her eyes.

Ava weighs 6 lbs. 13 oz. and is on 51 ml of food.

Praying for Ava to get strong and healthy...

Day 114

Ava extubated (pulled the tube out) herself last night. Her saturation went down in the 70s and her heart rate went into the 90s. She is at 100% O2 this morning and her heart rate is high when she eats.

She had her echocardiogram today. No news on it yet. Her eyes were the same as two weeks ago. Her heart rate was around 200 this evening and she was around 95% O2 as well.

Ava weighs 6 lbs. 11 oz. She gained 200 grams, so some of it must be fluid.

Praying for Ava's heart to be healthy and her body to be strong...

Day 113

Ava's gas was 69 this morning. They went up her settings a little. Then her gas was 52. Her O2 has been in the 70s today, but she is coming off her "dexs" steroids and onto hydrocortisone. She is also on 5% Nitric Oxide.

Her heart rate went up today to around 215 bpm, and stayed over 200 for almost 2 hours. They tested her to see if she was sick and a few other things and didn't find anything else wrong. They thought it could be because she had another blood transfusion. It went up again later in the day when I was there. I have never seen her heart rate that high and stay that high for so long. It definitely has me concerned. They will be taking an echocardiogram later in the week.

Ava had her eye exam tonight and he seemed to think they looked good. Still the same, but we will find out tomorrow if they looked better in a more thorough report.

Ava now weighs 6 lbs 4 oz. (She went down from her diuretic.) She is 43 cm long - 16.93", and her head is 32.5 cm - 12.80".

Praying for Ava's body to be healthy...

Day 112 - 16 weeks old!

Ava had a gas of 69 this morning so they went up on her rate to 40 bpm. Her gas then came down to 52. Her O2 settings were around 70% and her O2 was 62% this evening.

I got to hold her for awhile today and her eyes were wide open afterwards (see photo - her feeding tube is what is going through her nose because it's not something else that can gag her through her mouth.) The nurse also told me that she seems to be developmentally on target because Ava was trying to bat at the little lamb mobile above her head. So glad to hear that, and I am praying that she keeps developing appropriately and is not disabled due to prematurity or steroids.

I was watching "Desperate Housewives" this evening and the one character "Lynette" had her baby tonight. I actually cried because during this season, we were both pregnant at the same time and going through almost the same situations and she even had her baby at the same time as I would have. Everything seems to remind me about how I should be having a newborn right now.

Praying for Ava to come home and her lungs to become strong...

Day 111 - 40 weeks

Ava's blood gas was 71 this morning, and her O2 climbed to 90%. They took a chest x-ray and found out her left lung had collapsed because the night nurse had put her on that side too long. They change her to 35 bpm, and a "peep" of 8 and her blood gas came back as 59. Her O2 went down to 66%. I got to hold her again for over an hour and she (and I) loved it. The only time she got upset is when her diaper was a mess. They only had to sedate her twice today and the nurses noticed that she is settling in more. They put her in a crib today just like her one at Sister's.

I met with the wonderful woman who's beautiful daughter has a trach and a g-tube today. She came down and met Ava and I went up and met her daughter, who has the longest eyelashes I have ever seen. She was absolutely beautiful and she looked very happy. Her mom showed me the trach and g-tube and we talked a long time about experiences. She made me feel quite comfortable about the trach and g-tube and I definitely feel more confident that if Ava is to have that as well. She was a god-send and it was a great blessing that God somehow told me that I should talk to her when I was waiting in the hallway of Children's the first day I was there. God has definitely placed people in my life in the past months that have helped me tremendously. I can't forget all the other people (like my parents and the rest of you that know who you are) who have helped us so much as well, more than I ever would have expected.

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

Day 110- Due date

Today is Ava's due date. I feel like now every day that she is here, I am missing out on so much of her life being in the hospital.

Ava's gas was 65 this morning and 68 this evening. They didn't change any vent settings, but changed her Nitric Oxide to 10. She is on 45% O2 currently.

I was able to finally hold Ava again tonight. We were also told that they haven't been talking about the trach in two days. That's good news. They are hoping to get her off the vent soon if Ava will let them.

Praying for Ava to get home soon and without a trach...

Day 109

Ava's gas was 61 this morning and evening. They set her down to 30 bpm. They are only getting gasses every 12 hours now. Her O2 was 55%. Her Nitric Oxide is 15 ppm. I still couldn't hold her but I was able to pick her up a bit. I gave her the pacifier and she sucked on it for a bit. She is so amazing. Tomorrow is her real due date. I wish that I was just having her now.

Praying for Ava to be perfect in God's image...

Day 108

Ava's gas was in the low 60s this morning, but her O2 was in the upper 40s. Her left lung was a little collapsed but that is better and now the right lung is. They had to go up to 30 bpm as well today, but they are down in the Nitric Oxide.

Ava's gas was 51 at 10pm this evening and she is on 57% O2. She seems to be having a good evening tonight after not having a good one last night. We still haven't been able to hold her since last Thursday since the nurses are more nervous that she will pull her tube out here. I am getting antsy again to be able to...

Ava weighs 6 lbs. 4 oz. - 2840 grams. My big girl! She is eating 47 ml of food still.

Praying for Ava to heal and have peace and of course to hold her again...

Day 107

Ava's gas was 48 this morning so they bumped her down to 25 bpm. Her O2 is in the 70s. Her gas was 52 this evening. O2 was 66%. She was sedated quite a bit. I wish she could get off the vent and be calm.

We had some good news today that we are accepted into the Univera Healthcare program called "Compassion Net". They are going to help us pay for our gas, some food expenses, parking, and a few other things. They are coming tomorrow to go over the many things they offer. Praise God for this opportunity since we were starting to feel the expense of this.

Praying for Ava to be healthy...

Day 106

Ava's gas was in the 50s all day. She was in 60% O2 early today and 90% this evening. She was sedated all day because she gets very agitated. I was able to calm her down when we were in this evening while I sang to her.

I was told this evening that Ava may never be breast fed or bottle fed. She might always need a g-tube out of her stomach since she is getting to be older. That really upsets me since I love to feed my babies. It made me cry and that is about the only thing that upsets me right now besides that my poor baby has to be sedated so much and she is full term.

Ava now weighs 6 lbs 3 oz. She is 40 cm long - 15.75", and her head is 31.5 cm - 12.40".

Praying for Ava to get better and home for us to take care of her...

Day 105 - 15 weeks old!

Ava's blood gas was very low this morning (I think around 26) and at noon and 6pm was 53. She is on 30 bpm and 80% O2. She was put back on Nitric Oxide and a higher level of her steroids. Unfortunately nothing is working as much as they hoped it would. She was sedated quite a bit but she was sleeping. At 7:30pm, her gas was 43, so they weaned her pressure to 20. Later, her gas was 42, so they moved it to 18. Things are going good, but she is getting sedated every hour. Her gas is 45 and her O2 level is 60 in her blood.

They found a bacteria in her urine, only about 1,000 rare cells so they weren't too concerned but they are trying to figure out how to treat the infection.

Praying for her lungs to grow and get better and to not get any more infections.

Day 103 - As the day turns...

They are getting Ava's blood gas multiple times today. It started out fine but turned to 80 and 82 this evening. 87 after we had left. They said that if it turned worse they were putting her back on the oscillator. It did, so they put her back on the oscillator, but her gas was 26 and her O2 turned to 100%. I have to wait an hour (it's 10:30pm) to find out what they will do next.

They didn't have a lot of information on Ava or they haven't gone through it all, so they had a lot of questions. Thankfully because of this blog I was able to answer them. I was able to tell them all her blood gasses for this week. They told us that they wished they could clone us and that all parents in the NICU could be like us. 

I almost feeling bad about coming to Children's now because she is spinning out of control. I don't know really what's going to happen. They don't know if she has a viral infection or what. Her heart and brain did look good today, so that was good news. Nothing surprising there. They are sedating her again tonight to help her get through this.

They put her back on the vent since she was at 100% O2 and her CO2 was 26. After that they were able to get her O2 down to 80%.

I feel so bad that Ava is going through this. Her due date is next Friday. I wish I could have her still in my stomach. The only comfort I have for her now is that I know she wants to be here and is fighting to live.

Praying for Ava to live and get home to us to out live us all....

Day 102 - The day we went to Children's Hospital

Ava's blood gas was in the 40s today so they moved her vent down to 30 bpm. She was in 65 - 72% O2 today. She was moved to Children's around 2pm this afternoon. I got to hold her for over an hour this morning before she left. It was heavenly and she did really well while I held her. She even satted at 100%. The nurse at Children's this evening said that she was 100% there too.

They put her on lazik's again to get rid of the extra fluid in her lungs. They said her lungs looked moist. The doctor also said that Ava isn't the worst baby that she has seen. That is good to hear for once.

As of this afternoon, Ava weighed 6 lbs. That will probably be different tomorrow with the extra fluid. They also put her down to 47ml of food so she isn't so saturated with fluid.

When I went in this afternoon, I met a woman who has a 4 month old on a trach. It's funny because I had this feeling that the daughter she was speaking of, was in that situation. Her daughter has a trach and g-tube as well, and will be going home soon. She was very nice and she gave me her phone number. It was good to find someone in a similar situation. She also had a daughter. It seemed like a very open environment and very welcoming. We are looking forward to Ava coming home. When we told the doc that we were told that Ava may possibly be in the hospital in 2 years, she told us that she hasn't seen that in over 30 years. So that made us hopeful that she can come home as long as she doesn't get an infection.

Thank you to everyone who has helped us with kind and encouraging words and of course to my wonderful parents who have watched my two other beautiful girls dutifully every day for the past 102 days.

Praying that Ava gets healthy and any infection stays away from her...

Day 101

Ava's gas was 52 this morning so they put her down to 40 bpm. She was down to 65% O2 today, but they needed to up it again so it was around 72%. I actually saw her "sat" at 100% today when I came in. I was patting her on her back and talking to her about her sister's and clothes while she was wide awake. She acted like she understood, and was at 100% saturation for a bit. It was amazing.

I held her for an hour and then they put her back in her bed, and I left. I called later to find out that they had to give her barbazal (or something like that - a sedative) because she was so upset and restless. The nurses felt that she was upset because I had left. That makes me feel sad that I can't be there for her. I really enjoyed being there with her, but with two other kids, I just can't. I already was there for almost 3 hours.

Tomorrow is the big move which will likely happen in the afternoon. Pray for a successful and unstressful trip. Hopefully the docs at Children's can find something that will make Ava better. She isn't that high on her settings to go on a CPAP so hopefully that can happen soon.

Check back on yesterday's entry to see what happened with a bomb threat at Sister's.

Praying for a helpful day and for Ava to be protected and safe...

Day 100 - We made it this long...

Ava's gas was 54 this morning, so they set her down to 45 bpm. Her right lung looks hazy, so it could be either pneumonia or her lung collapsing. She hasn't been acting sick and her nose has only been runny a little. Her O2 has been in the 70s today. It went up from the morning though.

I wasn't able to come in today because I am congested and the girls have a slight cough and runny nose. I'm concerned about Ava getting it.

We have decided to have Ava moved on Thursday to Children's Hospital after we see her in the morning. She will go by Ambulance and she has a vent right in the incubator. We will be able to see her an hour or so after she is situated. They said that I can't ride in the ambulance. I don't really like that because I would be riding in it if it was one of my other children.

We have some good news - her eyes seem to be getting better. The doctor saw her today and will see her next week. Not sure if he will be coming to Children's.

Ava still weighs 5 lbs. 13oz. - she actually lost a gram.

I forgot to write this today (I'm actually writing this on May 5th) which should say how much stress I'm under to have forgotten what else happened today - there was a bomb threat at Sister's Hospital this morning. They were prepared to carry Ava out and "bag" her by putting a mask over her face and pushing air in her lungs. Thankfully they didn't find a bomb, but they have never had a bomb threat at Sister's before. What an awful person to have done something like that...

Praying for better days...

Day 99

Ava's gas was in the 60s today but she had an "episode" this morning and they put her bpm's up to 40 and she is on 85% O2. Her gas this evening was 70, so they upped her to 50bpm. They took another gas at 8pm and it was 67.

They said she had a little bit of a runny nose so that she may be sick. She is still on steroids and they really aren't effective.

The doctor spoke to me today that we should move her to Children's Hospital. Since she isn't about to come off the vent, there isn't anything more they can do for her. She also has an air leak around the 4 (cm?) tube in her mouth and they can't go bigger since it could cause more damage. He is thinking that most likely she will need a trach. Children's will evaluate her a couple of weeks before doing that. They may try nitric oxide and more steroids.

Ava weighs 5 lbs. 13.75oz. She is eating 54ml of food.

Praying for things to get better...

Day 98 - 14 weeks old!

Ava's gas was 59 this morning and she was on 62% O2. Her gas was 60 this evening. I'm a little concerned that it was that high since she is still on steroids.

Ava now weighs 5lbs 12.75 oz. She is 40.5 cm long - 15.9", and her head is 31cm - 12.20".

Praying for her to be 100% free of lung disease and disabilities...

Day 97 - 38 weeks

Ava's gas was 79 this morning and her O2 was 90% last night. They managed to get it down in the 70s, but since her blood gas was so high they put her back on the vent. Her blood gas was 68 at 11am.

Anthony got to hold her today and she was satting in the 90s. Her heart rate is going down just like a full term baby's heart rate does, so that is good. They said that she isn't swallowing much and she has a lot of secretions.

The nurses tonight put a fear into me that I haven't felt in some time. I have no idea how to feel or act anymore. I am frightened for Ava and for my other two girls, not knowing how this family is going to end up. They told me at 8pm tonight that I should talk to the doctor on Monday about Ava being moved to Children's and getting a trach and g-tube (for feeding). We seem to be a main topic of discussion especially with Ava going back on the CPAP. Her gas was 41 this evening and she is on 55% O2, so based on that she is doing better. I'm having a hard time understanding why they were so upset, Ava is still here and if she needs a trach, that's not the worst thing in the world. Maybe she can come home to us.

Ava weighs the same - 5 lbs. 10oz. - she just gained 16 grams.

Praying for Ava's lungs to grow, not to have disabilities and for us to bring her home...