Day 66 - What It Means To Be Loved

Today Ava's gas was 51, which is good. They lowered her settings to 50 breaths per minute. Most of the day she satted in the 80s and 90s. I got to hold her again today while Tony was away in Boston. Alexandra didn't feel well today so I hope she is better and not contagious. She gained 20 grams and is still 3 lbs. 9 oz.

I found a wonderful song from a dear friend of mine today that basically puts into music what Tony and I are going through. Here it is:

Mark Schultz : What It Means To Be Loved

For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
and could you come in soon
then something died inside of me to sit with him and hear
the tests that said our baby may not live to be a year
then turnin' to my wife and he said "whata you wanna do?"
and she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved

so we spent each day, watchin' every minute
and prayin' for our baby girl
and I will not forget the way I felt that moment
when she came into this world
but they took her from the room just as soon as she was born
and watchin' through a window I could see her holdin' on
when a voice inside me said...

I wanna give her the world
I wanna be her dad
I wanna hold her close for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved

I said everyday
we've got to bring her home
she's been out to prove the doctors wrong
oh and you should see her now
she's as pretty as her mom
and theres a boy at the front door waiting just to take her to her high school prom...

and he wants to give her the world
wants to hold her hand
and someday she may get a wedding band
but she's gunna live every moment until that day comes
and we're gunna show her what it means to be loved

Oh yeah (what it means to be loved)

show her what it means to be loved
what it means to be loved

Day 65

Ava is supposedly 3 lbs. 9oz. this evening. She is on 50% O2 and still is 55 breaths per minute. She is only getting one blood gas a day, and that was 61 at 6am. They aren't able to make any changes to the vent since her CO2 isn't that much lower.

The doctor came in this evening and told me that her liver enzymes normalized and her bone density was getting better. He is happy with her progression and will be very happy if her lungs continue on the same path without regressing. The steroids will probably be done early next week. She is currently on a very low dose. One of the things he is most concerned about is her eye exam next Tuesday. Please pray that her eyes are perfect and healed if there are any problems.

Tonight, Ava's night nurse dressed her up in the outfit I couldn't resist buying her today. She said she even had her sitting up and she had her eyes wide opened. I wish I could have been there...

Praying for more successes and very happy for what God has blessed us with...

Day 64

Ava is back to 3 lbs. 5 oz. She had lasik today to get rid of her extra fluid so she lost a few grams. She eats 31 ml of food now.

She saw the physical therapist today to get analysis but she was very sleepy so they couldn't analyze her as much as they wanted to. They decreased her steroids again and she will have this dose 6x.

Her CO2 blood gas was 61% at 6am and 60% at 6pm, so it is going down. The nurse gave her a better pacifier this morning and she sucked it right in and went to town. Every body in the room ran over to her incubator to see how cute she was.

This evening, she was turning her head so much that she almost extubated herself from the ventilator which would be very bad. She is getting so strong. I really hope she will come off of it soon and be on CPAP. Once she is off the vent, I can start to feed her.

Praying for Ava to get better and grow...

Day 63 - 9 weeks old

Ava now weighs 3lbs 7 oz. She is still a bit swollen though. She is eating 30ml of food. Her blood gas was 64 at 6am, and 63 at 6pm this evening so they couldn't make any vent changes. The CO2 in her blood is ok, but it should be lower. Her O2 is at 50.

She is 37 cm long - 14.57" , and her head is 27cm - 10.63".

Daddy got to hold her for the first time today. Yeah! Praise God!

Praying for Ava to come home and for her to be healed...

Day 62 - 33 weeks

I got to hold Ava again today. She was at 57% CO2 this morning and was 3 lbs. 4 oz. but she is swollen. Her blood gas was 51% this evening and they brought her breaths per minute down to 55. She is on about 40-50% O2. She is 3lbs 5oz.

Loving every minute of holding her and praying for her to get home...

Day 61 - Holding Ava again

Ava had a fabulous day today. I got to hold her again because they put her on the conventional ventillator. It was heavenly. I think I was more excited this time around.

Ava was moved to the conventional vent this morning, but her gasses have been not perfect. They should be in the 40s and 50s but they were in the 70s at 6am and noon, 69 at 3pm, and 64 at 6pm. Hopefully at midnight it will be in the 40s. She fell asleep on my chest. I really love every minute of holding my 3lb baby.

She has been satting in the 90s (the amount of oxygen in her blood), and her breaths per minute on the vent was 60 (which is the maximum setting). Her O2 was set at 40%. They put her on the CPAP (which is the next step from the conventional vent) and she turned blue, so she wasn't ready for that. She could be in a week or so.

She has at least one week of steroids left and they are keeping her on the same dose because her sugar has been good. They haven't needed to give her insulin in a bit. I hadn't heard about her liver enzymes so they must be fine. She is on 28 ml of food.

Her gas was 57 at midnight. The nurse forgot to write down her weight on the other incubator since the switch her to a new clean incubator tonight, but she thinks she is at 3lbs. 5oz. Love it!

Praying for her lungs to grown and everything inside her to be as perfect as she looks...

Day 60 - Moving along

Ava is having another good day. They told me today that she is "social". She loves to be talked to and touched. Her nurse that has been gone for over 2 weeks because of illness is back today. She has put some music in her incubator for her to listen to since she loves interaction.

They put another breathing tube in because they think she moved it with her tongue. She was satting in the high 90s while they did this, and as the nurse said "she did surprisingly well" with the change over. She didn't turn blue. They are going to give her some medication so she doesn't have so much anxiety or stress and that will help her sleep for a couple of days.

Her mean went down to 12 and her O2 is still 38. It may go up since her mean went down. If she does well over night, they are hoping to put her back on the ventillator tomorrow. So, I could be back to holding her tomorrow. She has one more week of steroids so we are hoping her lungs will keep on the same track and not regress.

Tonight, Ava's gas was 49 (which is good) and she is currently in 40% O2. I was able to calm her down twice while I was there tonight and put her to sleep. The nurse said that she was positive that Ava knew it was her mama. She lost 20 grams again but she still is 3lbs.

Praying for her to get off the oscillator and vent and to be completely healed...

(BTW, we love comments if you can get the logging in to work, some people have had trouble. I'm sure Ava will love to read them someday.)

Day 59 - 2 months old

Ava is having a good day so far and resting for being two months old. Her amplitude is down to 13, her mean is 13, her O2 is around 35. She is up to 27ml of food. She is swelling a little in the groin area so she may not quite be 3lbs. We shall hopefully see tonight. She did lose 20 grams yesterday.

They did change her breathing tube last night and when she was off of it for a few seconds, she didn't turn blue right away. She stayed pink for a bit which is good. The nurse even heard her cry. I don't think I have ever wanted to hear a baby cry so badly since I can't hear her right now. I want to hear her beautiful voice.

Her CO2 blood gas was 35 this evening. She still is 3lbs. No gain, no loss.

Day 58

Ava's CO2 blood gas was 37 this morning, which is good. They had an eye doctor come in and check her. They found that she has stage two retinopathy of prematurity, which is typically. Retinopathy of prematurity (ROP) is abnormal blood vessel development in the retina of the eye in a premature infant.

There are 5 stages of ROP.
Stage I: There is mildly abnormal blood vessel growth.
Stage II: Blood vessel growth is moderately abnormal.
Stage III: Blood vessel growth is severely abnormal.
Stage IV: Blood vessel growth is severely abnormal and there is a partially detached retina.
Stage V: There is a total retinal detachment.
An infant with ROP may be classified as having “plus disease” if the dilation and twisting of the blood vessels matches or exceeds a standard photograph.
Symptoms of severe ROP include:
Abnormal eye movements
Crossed eyes
Severe nearsightedness
White-looking pupils (leukocoria)

Thankfully she can see and her retina hasn't detached. The doctor told me that steroids and eyes don't really go well together. The steroids could be causing the problems or it could be the high percent of 02.

Ava got a brand new ET tube this evening. One of her nurses brought a new blanket for her. So they changed her to fresh bedding and it seems her O2 saturation is in the 90s.

Her CO2 was 44 this evening. Amplitude went down to 13.

Her liver enzymes were high, but they feel that lab results were wrong and that the liver is functionally well. They are going to retest on Friday and if the results are the same they will scan her liver. They say her urine is yellow and not white so there shouldn't be a problem.

I spoke to the doctor tonight and he talked to me in detail about her lungs and his outlook. He told me that the day she was born her CO2 blood gas was 138 and that was extremely bad. If you notice now, good blood gasses are in the 40s. But he said you can't account for the will to live, and that Ava has. A strong will to live (nor can you account for our great and wonderful God). He told me that since we had heard all the negative stuff about Ava, that he was going to concentrate on the positive. He still feels that nutrition is so important and he is going to push that. Dr Riley is on next and if he has to let him have the glory on getting her off the oscillator/ventillator, he will let him. He is going to start weaning her more on the steroids since her blood sugar has been so high. We are hoping that her lungs will stay strong, and grow because she can't stay on steroids forever. They put an IV in for her to get the insulin.

Praying for her eyes to get stronger, her lungs to grow and get rid of the lung disease and her liver enzymes to be normal.

Day 57

Ava is doing pretty good today. Her blood gas was 40 this morning, so they brought her amplitude down to 22. She is on 26ml of food and did great.

Her blood gas was 33 this evening. She is on 30% O2. Her amplitude came down to 18. Her glucose is still running high so they gave her some insulin. She is sucking like crazy on her pacifier and that's a quote from her nurse! They started giving her feed not from a machine that gives it to her for an hour. She can actually eat the food in minutes! It's unbelievable.

The nurse weighed her tonight and she was 3lbs. 1 oz. That would mean she possibly gained 110 grams. There could be an error weighing her last night since she only gained 20grams yesterday or she has retained a bit fluid (but there isn't too much) OR she really is over 3lbs. We shall see with what she weighs tomorrow.

I heard the whisperings of moving her to the ventillator... Anthony is sick right now so I'm praying I don't get it so I can possibly hold her if they do move her.

Praying for lung growth...

Day 56 - 8 weeks old!

Ava had an ok day today. Her gas in the am was good, but at 6pm this evening it was in the 70s. At 8pm it was 81. They put her amplitude up to 18 from 15, and early in the day when she was fine it was 13. They think the problem is that she was getting blood and she took on water again so they gave her lasik to get rid of the water. This morning Ava weighed 2lbs. 12oz. Her CO2 was 82 at 10:30pm. Finally at 11pm, they got her CO2 down to 57 with amplitude of 24.

Her length is 14.25", her head is 10 1/4" - 26.5cm (she was swollen last week). She now weighs 2lbs. 13oz. Her O2 is now 42.

One of my nurses when I was in the hospital called to ask if she could come up and see Ava. I let her up and I was very happy to see her. She is the nurse that was very nervous when I went in for surgery and I asked if she was ok. She is a lovely woman and I am so glad she cares enough to come up and see Ava.

We really need prayers. I am getting to a desperate state of mind not knowing what's going to happen. I had so much hope before and I still have hope but it's hard to keep it strong with being 8 weeks old and still having problems. Please pray for Ava. We so desperately want her to come home.

Day 55 - 32 weeks

Ava was on an amplitude of 15 today. Because her blood gas was 49 this evening they went down to 13. Her gas this morning was in the upper 50s. She did need more blood so they are giving her more blood this evening. Since their is an IV they can give her insulin through that so that won't hurt her as much. She is on 38-40% O2 and satting most of the time in the 90s.

Her nurse tonight that is going to be a nurse practitioner, said that once she is almost done with the steroids, we'll see how she's doing and if she can stay on the ventilator or cpap then we'll know if she's doing well. I'm praying for that, I hope you will too (whomever is reading this).

Today, Tony went up to see Ava while I stayed in the car with the girls. He went up and Ava was doing ok, but then she refluxed her food, and she started desatting. When he came in she was at 38% O2 and when she started desatting the nurse raised the O2. Tony thinks that instead of raising the O2, that she lowered it to 23% and she started satting in the 20s. The nurse was holding her and then she walked around her incubator and raised the O2 back up in the 50s. He was really upset when he came out to the car. I wasn't sure if he understood all the settings and he sent me upstairs. I went up and the nurse knew that Tony was upset because of the look in his eyes. But I'm not sure if she was covering it up or now. She told me that the probe attached to her foot came loose and that is what happened. Either way, I wasn't there. I would have said something if I saw that her O2 setting was in the 20s. So now we are concerned about nurses error, she hadn't had Ava before and I found out she was nervous about having her since she hadn't yet. She is a very nice person, but accidents happen, and maybe she's trying to cover it up? Who knows... More worries though.

Praying for Ava to be comfortable and for the staff...

Day 54

Ava's amplitude is now 15. Her blood gas was 50% at 6am. Her mean is now 14. She didn't have to get an insulin shot again because her sugar was 196. Her O2 is 50%. These are all really good settings. I hope they stick once she gets off the steroids (which won't be for a while.) She lost 20 grams so she still is 2lbs. 11oz.

Tonight her O2 is 40% and she is satting in the 90s. Her blood gas was 49. She did get another dose at 6pm since her sugar was 243.

Day 53

I got to go in and see Ava earlier this morning because I had a board meeting. Thankfully I got to see Ava's doctor that just started his three weeks on days yesterday. He was speaking to the nurse and the nurse practitioner's about Ava and teaching them about her situation. He was all smiles and he told me that the most important thing that Ava needs is good nutrition which I am helping with. He said that with good nutrition he felt that she could make it. That she could grow good lungs. As you can imagine, I was ecstatic. This is the first time that a doctor has said that she could possibly make it. I told him that we wouldn't be doing anything differently. That they wouldn't "pull the plug" and I wouldn't either so, what else is there to do... Ava is up to 24 ml of food and she kept it down all day. Her sugar is back up because of the steroids.

Her gas was 42 both times. They changed her amplitude to 21 this morning and it is 19 this evening. Her O2 was 60 and most of the time she was satting in the 90s. Her O2 is 55 and they are weaning her mean to 15. She now weighs 2 lb. 11oz.

The doctor is hoping to get her off the breathing machines by the end of his three weeks on the day shift.

Yesterday, the bereavement nurse that I have been speaking to for months now, told me about a woman who lost her fluid at 19 weeks and this is the second time for this to happen to her. She was even in my same room. I offered to speak to her and when I hadn't heard from the nurse, I figured that the woman didn't want to talk. I actually found out after I said that, the woman had again lost her baby for a second time. I totally feel for this woman and I can't ever imagine being in that position. I am very grateful to already have two other children.

One of the reasons I am keeping this blog and posting on facebook is to bring glory to our God. I am hoping to show everyone how important prayer is and how God answers prayer. I would love to speak to women and be able to have a great ending to this story and give encouragement. Either way, this is all God's plan and if it doesn't go the way I want it to, I should just "lean not on your own understanding - Proverbs 3:5. Although I don't want to think this, I can probably help people no matter how it ends. But I like to think what honor and glory I/we can give to God, in this day & age, when Ava comes home and lives longer than us all.

Day 52 - The Luck O' Ava

Ava's having a pretty good day today. Her blood gas was 51% this morning. She did lose some water because her chest x-ray was better and everything like the heart looked clearer. Her amplitude was 24 this morning and her O2 was in the 70s. They changed her amplitude to 22 this evening and her O2 was 67%.

Tonight, she is 63% O2. She is still not inflated enough to put the mean down (which is 16). She's satting in the 90s. She now weighs 2lbs. 12 oz. She is eating 24 ml of food. She has lost a lot of fluid. They will be giving her a 4-week course of steroids. We still need such a miracle.

Day 51

The nurse has asked for me to come in again. Ava's settings are at their max. They want to know how far we want to continue with Ava. I don't know where that is. Her heart is still strong. She is back on steroids. I am praying that this is just a temporary thing. Anthony is flying home because he is away. This is so sad and I hate having to go through this twice.

We met with the doctor. As always negative, more negative than last time since she has been around longer and has more problems. He feels that we are just buying time, but I'm hoping to get more time and then her lungs will grow.

We did get to meet our new Pastor, and he came and put oil on Ava and prayed for her. We look forward to her being baptized again at Knox or in the Niagara River this summer. =)

Ava did manage to lose quite a bit of fluid tonight.b She is down 2 oz from 3lbs. She still has quite a bit of fluid to lose. She is satting in the 70s to 90s. Her O2 is 87, her amplitude is 26 and her mean looked to be 15. Her lungs aren't overly oxygenated so they didn't go down on her mean. The doctor looked disappointed with that. They will take another gas at 12 am. Her blood gas at 8pm was 47, I believe. The steroids are working again and her sugar is high again so they have to give her insulin. Her heart rate is good. That is what they are afraid will give out. As of 11:45pm, her blood gas is 44, so they will probably lower her settings again.

Praying for Ava to live long after I'm gone...

Day 50 - We made it this far...

Today is probably the worst day Ava has had since being born. Her blood gas was in the 80s a few times this morning. Finally after going up to 29 in the amplitude and 100% in the O2 she had a blood gas of 50. She has been desatting all day down to the 50s. Thankfully her heart rate hasn't gone down. She is still eating, but she is retaining so much water. That is what they think is wrong. She now weighs 3lbs, but that can't possibly be right. They may start giving her steroids again tomorrow. They have given her a stronger diuretic to eliminate her water.

I am so exhausted and really don't know what to do anymore. I keep praying that God will get her better. I just wondered when it's going to get better and STAY better.

Day 49 - 7 weeks old!

Ava's blood gas was 60 this morning so that was better. They did not change any settings. They won't take a gas until tomorrow morning. They are also taking chest x-rays 3x a week on Monday, Wednesday and Friday which is a good thing. She was still desatting up and down throughout the day. Unfortunately the nurses today and tonight don't know Ava as well, and they upped her O2 to 70 from the 58. The nurse last night knew that she didn't need to so she kept her at 58%. She is still a bit puffy from retaining water, but the description of how much water depends on the nurse. One nurse seems to describe it more than the other. The nurse today asked if I hold her head when I come in and I said yes. She then told me that Ava loves having this weighted bean bag lay on top of her head. She also told me that she is able to swallow some of her secretions now, so she is developing appropriately. She also can bring both of her arms up to her mouth which is what they want to see as well developmentally - that she is strong enough and that is a natural reflex.

Her head is now 27 cm, length is 13 1/8" and she is 2 lbs 12 oz.

The most positive thing is she's growing. She is so beautiful and I can't wait to hold her and bring her home.

Day 48 - 31 weeks

Ava's gas was 73 this morning which is high. They increased her amplitude to 21. They managed to get her O2 down to 58%. Her blood gas was 67 tonight. They have been telling us that this time is critical for Ava. She is now 2lbs. 11oz. Most of it is because of her retaining water. She is on 21ml of food.

Hoping for a better day tomorrow...

Day 47

Today was a so-so day with Ava. Her CO2 was 68 this morning. It finally went down to 56 at 6pm this evening. She was desatting all day long but when I came in she was sleeping pretty well. She has been on the antibiotics for 48 hours so hopefully that will get her better and down on her settings. They had to go up on her amplitude to 19 instead of 18 and her O2 was 68%. She didn't gain any weight because she is on lasik's again today to decrease the fluid in her body because she was retaining quite a bit of water. Her sugar levels are back to normal. She is now eating 19ml of food.

The nurse said that typically any baby that has a breathing tube this long gets an infection. As of now, the infection is not in her blood.

I got a nice surprise when I came in this evening from the little baby boy's mama next to Ava. She gave us a few ADORABLE clothes for Ava with little frills on the booty. I told Ava she had better get better so she can wear them. She also gave me a book of bible verses for women, some lotion and an awesome smelling candle. She also gave me a card she had made and in it she said that I could call her if I needed to talk or cry. Thank God for wonderful people like her (you all know who you are) and great surprises. =) At least we get to see people we normally haven't seen in awhile.

We're hoping and praying for a better day tomorrow and to get someday soon a firm answer that Ava will survive. Wishing she wear some cute clothes and I can hold her...

Day 46

Ava had a pretty good day today. Her blood gas was 54 this morning, but they didn't change her settings. Her chest x-ray looked the same as yesterday. Her O2 was up to 68%. She got the last of the current donor's blood today as well. She did manage to gain 60grams yesterday and she weighed 2lbs. 5 oz. as of this morning. As of tonight, she gained 40 grams and weighs 1lb. 6 oz. They gave her lazik to help the retaining of water, and it did help a little bit. The nurse said they need to watch that because it could mean that her body can't handle fluids well. They also gave her more sodium to coincide with the antibiotics she is receiving. They thought she could possibly have an infection and they finally got results tonight that said she did have an infection from her breathing tube. That is the reason they figured why she regressed so badly on Tuesday. That is a bit of good news because there is a reason to her going back on the oscillator.

Her blood gas this evening was 50 so they lowered her amplitude to 18. The doctor also said that her chest x-ray was better too. She's showing progress and she is definitely looking bigger.

The biggest news of the day was they gave her a heart sonogram (echocardiogram) because her heart is working so hard and they are afraid that it will give out. I am happy to say that it showed no signs of change or distress. I am so proud of her! Praise God for all these advances!

Day 45

Ava's settings are better today. Her O2 was 58% this morning, her amplitude is 20, and her mean is still 14. Her chest x-ray was the same as yesterdays. The nurse said that she can tell that Ava doesn't like the oscillator. Hopefully she will fight to get off of it.
Her CO2 blood gas was 55 this afternoon, so they put her mean down to 13. CO2 was 54 this evening. They didn't change her settings at all since they were so aggressive this morning. She looked bigger when I saw her. They are going to weigh her later tonight so we'll see how much she weighs tomorrow.

Praying for a good day...

Day 44

Today was a horrible day. Ava is back on the oscillator after being off of it for a week. I called at 4am this morning and she was fine, but when I called at 8:30am, she was back on the oscillator. Her CO2 was in the 70s and 80s and her O2 was in the 90s. They did get her O2 down to 70%. Her amplitude is at 26, her mean is 14. She did look good when I saw her tonight. She is fatter and had good coloring.

We talked to the doctor and he said to us that this is because we just finished the steroids. He didn't feel that it was because of an infection, but he is giving her antibiotics just incase. He also told us that he has seen very few babies in Ava's situation in the 10 or so years he's been doing this. The babies he has seen have gotten this far before but they didn't survive. He did say that we shouldn't give up hope. We are pretty devastated. We still have hope though and Ava needs so many prayers. This is so exhausting and we are tired. Just last night I was thinking that we are almost halfway to getting her home. It's hard having the sickest baby in the whole NICU. Hopefully she gained more weight. We need to pray that she can keep eating and her stomach doesn't explode.

Praying to bring Ava home, healthy and happy...

Day 43 - 2lbs!

Ava made it to 2 lbs. 1oz. today! Yeah! Praise God! Ava's O2 was 82 this morning so they gave her albuterol, did a bit of chest therapy and her O2 went down to 62. They were happy with that. She only has blood gasses taken once a day now (in the morning). That is a good sign. She doesn't have to have glucose checks anymore either. She has been satting high and low all day today, but they said that most babies her age/condition do that but they are hoping she wouldn't.

She did have a chest x-ray today. The nurse said that it was better than last weeks. Ava also was given blood because her blood supply is going to expire on Wednesday and they would rather make sure she had enough blood and not have to have another donor (in case she rejects another donor). They may also give her blood on Wednesday so she has an IV in again. They had an easier time putting the IV in because her veins are bigger. I also noticed her cheeks seemed to have gotten bigger. They gave her lasiks (sp?) for the blood and to help reduce the extra water that she has retained. Hopefully she won't lose any weight because of it.

She is going to be checked out by the eye doctor tomorrow, so we are praying for good news in that regard. The nurse said that most likely he will say that her eyes are still immature.

Praying for perfect eyes...

Day 42 - 6 weeks old

Ava is now eating 18ml of my milk. Her gas was 65 this morning, but it was down to 59 this evening so that's good. They started doing a little physical therapy on her chest so the mucus could dislodge in her lungs. I held her this afternoon and she's getting so good at it. Moving her from her incubator to my chest is so easy now. Today she went right to sleep and didn't even open her eyes. She did desat a bit, but that's ok. Her O2 was at 40%. Her breaths per minute are still 40. She is now 12.75" long and her head is 24cm around.

She really looks like a baby now when you look at her photos from the beginning to now.

Day 41 - 30 weeks

Ava's blood gas was 61 this morning and also this evening. That just means that she can't go lower in her settings. Her sugar was 188 tonight so that was good and they didn't have to give her an insulin shot. She's was at 36% O2 and still 40 breaths per minute. Tonight she is at 32% O2 and is eating 17ml. Once she gets to the cannula to breath, they will not be putting any pressure on her lungs or helping her breath. She will be doing that all on her own. I love feeling her breath when she lays on my chest. When I walked in the room today, I looked at her and couldn't believe how much she has grown. I am so in love...

Praying that she can go lower in her settings, get some fat on her bones and get her off the ventilator...

Day 40

Ava's gas this morning was 63, not good but they weren't worried. They weren't able to make any setting changes to the vent. She had to get two shots today of insulin because of her sugars. Her blood gas this evening was 54 so it was better. She has 4 more (very small) doses of the steroids. She now weighs 1lb. 14oz.

Nothing else is new, but I'm hoping for new good changes to the vent.

Day 39

Ava is having another good day today. All the nurses that haven't seen her in a few days are so happy to see that she is off of the oscillator. She is on 40% O2 today, tonight she was at 38% and she is down to 40 breaths per minute. Her blood gas was 55. Her sugar is up both in the morning and this evening so they had to give her insulin again. She is on her 2 last doses of steroids, so the sugar should go away shortly.

Once she gains more weight she will start physical therapy. She stayed the same at 1lb 13 oz. today. Hopefully she will be 2lbs by Saturday.

Almost at 6 weeks and she has 4 more until I can possibly feed her... Then I will be REALLY busy and I'm looking forward to it. =)

Day 38 - Day 2 of holding Ava

Ava had a great day and got a full night's sleep last night. The nurses were able to put her head facing straight up and her equilibrium didn't seem to bother her. She is at 35% O2 and is on 45 breaths per minute. They put her down to 45 from 50 and she is handling it fine. Her sugar is still acting up and they had to give her two more shots today. I got to hold her this evening for almost an hour and she fell asleep. She fell so asleep that they took her blood gas (which was 54), gave her a shot and she didn't even wake up. She is 810 grams which is around 1lb 13 oz. I love feeling her breath when she is on my chest. Both doctors came in while I was holding Ava, the one that had her the three weeks prior and the other doctor that has had her for the past two weeks. The current doctor was telling the prior doctor that the only reason they switched Ava to the ventillator was for me to hold her. But I have been told that she couldn't go much lower on the settings. The prior doctor was smiling and looked very happy. I joked with him that Ava was just giving him a hard time before. Our current doctor just said to keep our fingers crossed cause she can regress (he is always so negative). She is on her final stage of steroids where she will get four more shots. They also keep mentioning that the steroids worked good, but they could have worked better (whatever that means.) Her chest x-ray today seemed to have been a bit better than the prior day's x-ray.

We'll keep praying for Ava to keep getting better and better with no brain trauma whatsoever.

Day 37 - The Day I got to hold Ava

I got to hold Ava today. It was unbelievable finally being in that situation. It was surreal. She also weighs 1 lb 12 oz. now. We are well on our way to 2 lbs. Her sugar was still a bit high again today but they gave her another shot. Her gas at 6pm was 59. She is not desatting very much. They increased her calories to 27 so hopefully she gain some fat quickly.

I called this morning and the nurse wanted me to ask if I could hold Ava. I did and she told me they were going to switch her to the ventilator and see how she took it. She told me not to call but come in after 1:30pm. She said that if it didn't go well that she would call. I didn't hear anything but got in around 2pm and found out that she took to it like there was no difference. Praise God! Tonight she is sleeping comfortably with her head finally facing up. I'm so happy to hear that she is comfy! She even got a new clean incubator today and new bedding. I told the nurse that I couldn't wait to nurse her and she teased me by saying "you're never happy, you're always wanting more!" Can't help it, it just feels naturally. Hopefully I can do that at 34 weeks, when the suck/swallow reflex starts. It also would mean she is developing well.

Praise God for how far we have come and that he has chosen us to be part of such a miracle!

Day 36

Ava got measured last night and she is 1lb. 10oz again. Her head is now 23.5cm round. Her settings this morning on the oscillator were an amplitude of 15 and her mean is 10 (which it has never been, when they tried in the past her lungs would collapse) and O2 was at 32.

We went in to see her today and she looked great. I even saw her O2 saturation get to 100, so they can totally turn down her O2. Thankfully she is doing so well the nurses can't keep turning the O2 up when she desatts.

The nurse told us that she had spoken to the doctor about possibly putting her on the ventilator so she can move a bit more and be more comfortable. The doctor thought that it may be a good idea and he also said than I could hold Ava as well.

I just spoke with another nurse this evening and her 6pm blood gas was 46 and they didn't do any vent changes. She did tell me that she heard the two doctors discussing what they should do with her - to possibly put her on the ventillator. She said that they will probably make a decision tomorrow. Ava's sugar is up because of the steroids but the nurse said that they would give her medicine to take it down and that it wasn't a big deal. Just that it was a side effect of the steroids.

Everything has been so much better lately and we are praising God every day for Ava. We have come so far and she is such a miracle to all of us.