Day 280 - 40 Weeks Old!

Ava's gas was 100 this morning. She went black again but they didn't have to do chest compressions this time. They were able to bag her up. They got another gas of 130 and put her back on the oscillator. So sad and devastating. Then her gas went up to 135 and they put her back on the conventional vent. She was at 100% O2 most of the morning and then got it down to 60%. She went down to 104 and then they got a gas of 67 and 55. She didn't look really good (dusky - grey & purple) this morning but she started to look pinker later in the afternoon. She had a moment of desaturation when her O2 went down to 60% and they upped her O2 to 100% then they were able to get it down to 60%. They put her on anti-seizure medication because they think she had one on Friday and they wouldn't know if she has a seizure when she is paralyzed. They think she may have had a seizure because they were randomly giving her adivan and not weaning it properly if she really was getting a lot of it. They also gave her immunoglobulins to boost her immune system. Her trach culture came back with signs of an infection in her trach again.

The doctor showed me her CAT scan and told me that the spot where they think she had a seizure is small and that part of the brain controls her upper limbs movement. We have seen her move her arms really well, so it most likely doesn't bother her. The area of the brain where the fellow said was dead, may be that her brain stopped growing or it could be fluid. Please pray that her brain continues to grow. We have seen her head grow, so hopefully that is not the case. Overall he said that if this was his daughter's brain scan, he would be pretty happy with her being a 24 week preemie and being on 100% O2 multiple times. Thank God for this! I have always felt like she was and is being protected. But it's hard when you still have to go through these awful situations.

I am very thankful today for some of the elders and prayer warriors from Knox Church came to the hospital to pray over Ava. They were very respectful of Ava and washed up their hands and didn't touch her, but just prayed over her with all they had. I felt very strongly about James 5:14-15 - is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven.

Praying for Ava and our family to have relief and for it to get better...

Day 279

Ava's gas was 100 this morning when she was upset then they took it again and it was 76. She had a fit today and we couldn't get her to calm down and she started to look purple so they bagged her. She finally calmed down. She must be getting sick again. We never heard back from neurology about her EEG and the fellow on today (because the doctor left 10 minutes before we got there), couldn't show me where the small area was where she might have had a seizure when she was little. She also told me that her brain in front might be dead area or not growing and I said I thought that was water? So we are still not getting answers.

Tonight we got a call around 10pm to tell us that Ava had a fit and turned black and her heart rate went down to 50. They had to do chest compressions on her and she finally sort of woke up out of it and was smiling afterwards. We went to bed having a feeling it was going to be worse. They also said they were going to have neurology come in stat to look at her.

Praying for relief and peace and for Ava to not be sick again...

Day 278 - A seizure?

Ava's gas was 71. Good that it is staying the same. Her nurses today think she has a seizure around 7:30am this morning but they don't know for sure. I didn't find out until 4pm. She kept pulling her arms out in front of her and popping her eyes wide open and she did this until they gave her Adivan. They took a CAT scan of her brain and didn't find anything that happened today. They think she might have had a small seizure a while back but they don't for sure. Otherwise her brain looks pretty good for a baby born at 24 weeks. They did find some water around her brain between her brain and skull, but I guess that's typical of a hospital bound infant. It may also be for any infant in general but I'm not sure. They got an EEG as well and we still don't have the results of that. The doctor also got a metabolic test done to see if she is either being fed too much or too little. They test it by hooking a piece up to her vent equipment and seeing what the amount she breathes and how much calories she burns. If she is being fed too much, that could be the cause for her high gasses. We should know these results tomorrow. We still don't know anything from immunology. She is still on methadone from being sick which I don't even know why she is on and they will hopefully wean.

The other bad part of today is we found out from our insurance that we cannot get any help with our wet basement. We built our home a year ago, and our basement has always leaked. In fact, it got wet all over the floor and we have lost a lot baby equipment, toys, framed pictures, papers, etc due to mold. Our builder told us this was typical, but after talking to the town building inspector and our insurance company we found out it was not. We lost things that I have had for all our children: a car seat, multiple baby toys - big and small, a swing and so much more. I would say at least a couple thousand dollars worth of stuff. Thank goodness our clothes have been in bins. This is something that would be upsetting and hard for a typical family, but for us it seems to be a mountain the size of Everest.

Praying for peace and for Ava to get out of this being a healthy, strong baby...

Day 277

Ava's gas was 71 again. It's good that her gas is the same and the pulmonologist doesn't mind that it's that high. They went down to 40% O2 and she is still satting well. She slept most of the day even when we were there today.

Praying for Ava to come home this year...

Day 276

Ava's gas was 71. They put her on methadone every 8 hours to calm her down. The adivan just wasn't helping enough because she was having withdrawal symptoms. They took lots of blood tests today to test her immune system. I didn't hear from that doctor so I don't know when the results come back. Her fingers were also peeling and I remember that happening when we were at Sister's Hospital. I don't know when it was or if I even wrote what they said it was. They even said it could be because her vent hosing was hot yesterday and she holds onto it a lot. I really hope that isn't the case and that she didn't burn her poor little fingers.

We have reached over 7,000 views of Ava's blog today. I'm so surprised sometimes at how many views we get. Thank you all for caring and praying!

Praying for Ava to come home and be free of the the trach and vent...

Day 275

Ava's gas was 70 today. She was upset part of the day which they feel is due to withdrawing from the drugs. She threw up a bit to on me today. She is down to her rate of 5 and the only thing left to change is her O2 being 40%. Her immunity levels are low so they are bring in immunology to check into her. That could be why she is sick and she could hopefully outgrow any immune deficiencies. Not sure what to think about that. It could be why she has been sick so often.

Ava is only being weighed once a week now.

Praying for Ava to get on the home vent and come home (and then grow enough lung tissue to never need a vent again)...

Day 274

Ava's gas was 65 today. She is awake but not really smiling. They went down her breathing rate to 20 and got a gas of 72. When I was there tonight she didn't want to be held and she had a fit until we put her back. She seems to have quite a bit of stool and her stomach is a bit enlarged and hard.

Ava weighs 6.2 kg = 13.69 pounds, 59 cm = 23.23", and her head is still 39.5cm.

Praying for Ava to be happy, peaceful and grow home to us...

Day 273 - 39 Weeks Old and 9 Months Old Today!

Ava's gas was 66 this morning and they took the paralytic off. She was getting mad every once in a while and they checked her gas and it was 87. She did have some calm times. Her other gasses were 78, 66 and 60. She basically slept most of the day and was not happy but did have some good wakeful times. She did peak her eyes open for me and smile at me a bit. Oh how I loved that. ;)

Praying for Ava to get home and be with our family...

Day 272

Ava's gasses were in the 60s today and they finally put her back on the vent in the early afternoon. Her gas came back 87 but they changed her settings from 30 bpm to 35 bpm and she was better. She still is paralyzed and sedated but hopefully that will come off in the early am. She was moving her toes when we were there today. I think she heard us.

Praying for my baby to come home for Thanksgiving...please God, I know it would be hard but with you all things are possible...

Day 271

Ava's gasses were in the 50s and 60s all of today. They have been able to wean her settings and I'm hoping she'll be back on the vent sometime tonight or early tomorrow. Thankfully it wasn't in her blood so they have been able to give her steroids for her lungs and antibiotics that cover it. She still is being sedated and paralyzed and hopefully they can wean that tomorrow as well.

Thank you for all your prayers! Keep them coming, we need to keep her from getting sick again and to come home. It will happen but we need your prayers still.

Praying for Ava's healing...

Day 270 - 95 days until Ava's 1st Birthday

Ava's gasses have been all over the place. 90s, 80s, 70s in the early am. Then they went back up to the 90s. Finally this evening she is coming back around. They got a gas of 82 at 12pm, 64 at 4pm, and then 55 at 8pm (they went down in her amplitude to 60), 60 at 9pm (they went down on the amount of jiggle that is shaking her on the oscillator). She is still completely sedated and paralyzed. She has start wiggling a bit and they give her some more sedation for her to stop.

This is completely awful but I know she isn't going anywhere. We will never give up hope. Matthew 17:20. I'm telling her lungs to grow.

Praying for Ava to fight this and never be sick again...

Day 269 - Ava's sick again, really sick

We received a phone call at 3am this morning telling us that Ava's blood gas was 114. They put her back on the oscillator and they still can't get her blood gas down below 90. She is an induced coma again being sedated and paralyzed. They have no idea why she is so sick. They think that it may be another blood infection. White blood cell count is normal but the other tests (not sure exactly what they are) came back high. Her gas was still 92 when I went to bed last night.

Praying for Ava to come home and end this vicious cycle...

Day 268

Ava's gas was 92 today and then they changed her to a cuffed trach and got a gas of 82. They decided to put a cuffed trach in her today and I was a bit hesitant on them doing this. They said she could come home on it, but it's something that is inside her trachea and I'm not so sure about it. Tonight her heart rate dropped to 60 and her O2 saturation dropped to 20 and so they bagged her and it went up again. They deflated the cuffed trach and maybe that's what's causing it. Not sure yet. She was asleep when this happened. They also put in a pediatric cuffed trach and not a neonatal trach and it was making her gag. She was cranky most of the day and she looks pale as well.

We are less than a week from her going on the home vent and the situation is going crazy again. I would love to get her home for Thanksgiving. Please pray...

Ava did gain more weight though. Yeah! She now weighs 6 kg = 13.23 pounds.

Praying for Ava to get on the home vent and come home to us...

Day 267

Ava's gas was 97, 10 am 82, and then 90 tonight at 6pm. I told the nurse that I wanted her to be cultured so they finally did it. The nurse told me she didn't sleep again and she was really upset. I later talked to a resident that I believe just came on today, and he told me that he didn't see any problems with her and that she didn't have a temperature.

I came in earlier after being concerned all morning and my mom taking the girls. She was asleep in the swing and I was able to clean up her room a bit. She woke up after almost 2 hours and the Lung Center doctor came in and checked her out. He didn't seem to think it was her lungs either but it was something that was bothering her. The on-call doctor came around on their rounds and he seems to think that "if she isn't going home anytime soon, that we should just put a cuffed trach in." After the doctors were gone, I was Ava in her tub, which she LOVED and changed her trach ties and held her for a bit. She slept in my arms for at least 30 minutes and then awoke (just like yesterday) very upset and it took 10 minutes to calm her down. We gave her tylenol and orajel and she finally calmed down. I actually took care of her that whole time, so it definitely makes me feel confident that I can do it at home. I settled her into bed and she watched Baby Einsteins (which she loves) and played with her toys. Our on-call doctor (who is our favorite) was on tonight and he missed Ava's episode but he came in and started to investigate. He listened to what was going on with Ava and then ordered some more blood tests and he did an ear exam. He found that her right ear was infected and is giving her antibiotics. Yeah! I was so excited. I told him that I wish he was on all the time. He is one of the greatest doctors that we have met!

Ava was basically calm the rest of the time, and I read our family's favorite book "Peekaboo Kisses" to her and she would smile at me. I picked her up for a bit and rocked her and put her back to bed watching Baby Einstein before I left. I love my baby girl so much and I feel like she is ready to come home. Her heart rate has been a bit high and hopefully the blood gasses will be lower. They are going to take on at 12am.

Praying that Ava feels great and her blood gasses are perfect...

Day 266 - 38 Weeks Old!

Ava's gas was 67 this morning, down 1 from yesterday. She did not sleep through the night though and was quite upset most of the morning.

I came in with my mom today and she settled a bit when we were there. I picked her up and she threw up at least a half cup of yellow bile from her stomach. She was covered with it and I got some on myself too. So I put her back in bed and she seemed to not be as unhappy. I cleaned her up, changed her trach since we want to change her trach every Sunday, and by that time she was ready to go to sleep. I wanted Grandma to hold her since she never has so we put Ava in her arms and she fell asleep. She woke up after almost 10 minutes and started to get mad. It turned into a 15 minute fit and I really couldn't console her like I normally do during that time. She was turning blue, but she wasn't looking as bad as she has in the past. Air was flowing through her lungs so she wasn't clamping down, so we just continued to try and soothe her. Finally she settled down and went to sleep. She was sweaty and I was sweaty. We are not sure if her reflux is bothering her or if she is just teething but I haven't seen her like this in a long time. Please pray that she is not getting sick and to give the doctors and nurses wisdom and knowledge. They don't want to culture her trach or PIC line because she is showing no other signs. These are the signs she did show the last time she got sick.

Ava weighs 5.94 kg = 13.10 pounds. She gained again! One week from tomorrow they will hopefully try the home vent again.

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

Day 265

Ava's gas was 77 today. Not too great. Ugh... I wish it would be the same thing and a lot lower. From what I heard she slept through the night pretty well. The nurse said she was cranky this morning so she gave her tylenol. I wish I could be with her. All she needs is to be picked up and loved. Please our wonderful Lord, send her home so we can properly love her and treat her like every baby should be. Oh and please send her home by Thanksgiving. Hopefully I'm not asking too much. Amen.

I forgot to mention that on Thursday, my oldest daughter, Alexandra, got her LONG (down to her booty) hair cut for "Locks of Love". She wanted to do this and a month ago, when my husband and mother mentioned it to me and Ali, I said "no way!" I have always wanted a daughter with long hair, but I asked her if she wanted to do it and she said yes. She wanted to give it to a little girl who is in our support group, who has cancer but after talking to our stylist, she said it would be better to go to "Locks of Love." I am so glad that my daughter can give something so close to her and I am always praying to God that my children can bless this world and make it a better place. So many people have blessed us through the past year and I'm glad we can give back a bit (and looking forward to giving back in the future.)

Praying for Ava to be with our family...

Day 264 - 13 pounds!

Ava's gas was 68 today. She got another PIC line in her left arm and it went well. She was pretty happy the whole day and she didn't get a temperature again.

Ava weighs 5.9 kg = 13 pounds. Yeah!

Praying for Ava to come home... It would be our greatest joy...

Day 263

Ava's gas was 67 today. They decided to go do down on her pressure support to 20 but she was breathing a bit hard so they went back up to 22. She got quite cranky this morning and pulled her PIC line out and they were trying to get a new one but they were unsuccessful. She also had a low temperature so we are concerned she might be coming down with something. Then her temp went down, then it was a bit higher again, and late in the evening it was normal again.

Praying for Ava to grow...

Day 262

Ava's gas was 72 today. She did have a really good day and was really happy. She breast fed for about 5 minutes today. She was smiling at me and it was just wonderful. Physical therapy brought her a seat in that can help her sit up better and she loved it and sat in it for 2 hours. She is taking two or so naps a day and has really become a big baby. It's so awesome seeing her blossom.

Ava weighs 5.82 kg =  12.83 pounds. She weighs a bit more than Sunday morning and she is almost 13 pounds.

Praying for Ava to get stronger and healthier...

Day 261

Ava's gas was 74 this morning. They took another gas at 1pm to see if it was really that, and they got 60. So they went down on her pressure to 22 and got a gas of 73.

The nurse said she was crabby today and she hadn't slept a lot. A volunteer came in and held Ava for over an hour. Ava fell asleep and was pretty happy with her. I was able to breast feed her today for about 10 minutes and then she stopped and fell asleep. When she woke up she got really mad, so mad that because it was dark in there, I couldn't tell if she was turning blue or not. She wasn't but I put her back in bed and the nurse came in and turned on the lights. I managed to calm Ava down by sitting her up and patting her on her back. She was able to hold her head pretty steady and she had grabbed one of her toys. She was holding it and it was right in her face and was falling asleep. I eventually put her down and she soothed herself and went to sleep. I am glad I was able to handle the situation and I was the only one who handled it because I knew her best. It gave me some confidence when she gets really mad, which doesn't happen very often.

She is still smelling pretty bad around her neck even after being cleaned and the nurse on tonight who knows Ava says she smells like that specific trach bug. But it could have colonized now and not be bothering her. When I came in tonight and she was sleeping, she looked a bit pale and she also has been a bit upset more than usual. I am praying for protection to never be sick again.

Praying for Ava to get stronger...

Day 260 - A pretty good day

Ava's gas was 57 today! Yeah! She even went up in her weight. The lung center came in today and the doctor that hasn't seen her in a week or two was impressed especially with her head control. She also approved me to try and breast feed again. She kept saying that she can't believe Ava can do it, but as long as it doesn't bother her. So, I did it for about 10 minutes with her. Ava was a little fussy but she was just fussy in general and tired. So after a quick nap, I put her in her tub that she hasn't been in since she was in the NICU and she loved it.

Ava weighs 5.8 kg = 12.79 pounds, length is 58 cm = 22.83", head is 39.5 cm (same as last time) = 15.56"

Here's some song lyrics that has been really inspirational today that you might like too. It's an upbeat song that really gets me going.

Move by MercyMe

I'm not about to give up
Because I heard you say
There's gonna be brighter days
There's gonna be brighter days
I wont stop, Ill keep my head up
No, I'm not here to stay
There's gonna be brighter days
There's gonna be brighter days

I just might bend but wont break
As long as I can see your face

[Chorus]
When life wont play along
And right keeps going wrong
And I cant seem to find my way
I know where I am found
So I wont let it drag me down
Oh, I'll keep dancing anyway

I'm gonna move (move)
I'm gonna move (move)
I'm gonna move

Ive got to hold 'er steady
Keep my head in the cage
Everything is about to change
Everything is about to change

This hurt is getting heavy
But I'm not about to cave
Everything's about to change
There's gonna be brighter days

I just might bend but wont break
As long as I can see your face

[Chorus]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat [x2]

I just might bend but wont break
As long as I can see your face

Praying for Ava to come home to her family...

Day 259 - 37 Weeks Old!

Ava's gas was 67 today. She slept through the night but woke up for her usual hour. Her nurse came on today and smelled her neck and she thinks she smelled like she was getting a trach infection. Thankfully, she decided to get her trach cultured and we should know tomorrow if she has anything brewing. She has been sleeping quite a bit which could mean she is growing or not feeling well. She hasn't really been fussy so that is a good thing.

Praying for Ava to be healthy...

Day 258

Ava's gas was 68 today. Hopefully we can start to get these gasses more under control soon. Another doctor from lung center came in today and studied Ava's breathing and is trying to figure out why she can't be on the home vent. She also got physical therapy today and slept for 2 1/2 hours this afternoon until her nurse woke her up.

We went to Pumpkinville today and we ran into quite a few people that are praying for Ava and we even met some that are going to start. Keep those prayers coming! We are looking for that miracle to get Ava home and for her to never need a vent or a trach to breathe.

Ava weighs 5.64 kg =  12.43 pounds.

Praying for Ava to grow strong...

Day 257

Ava's gas was 65 today. Much better. She slept the whole night through not waking up a bit. Her nurse was sad that she couldn't play with her. We'll see what she does tonight. She did well with PT and OT today too and when I held her she could sit a while and her head would not be floppy. She could keep her head straight. Praise God for all these miracles.

Praying for Ava to come home and never have to be back in the PICU (except to visit to show all her peeps how well she's doing)...

Day 256

Ava's gas was 71. They think she might have been sick or she just had high gasses. They also don't want to pull her PIC line yet.

Ava slept good last night and only woke up at 3am until 4am. I was there later tonight after our support group and she fell asleep for a bit when I got there, then woke up just before I was going to hold her. Then she fell back asleep around 10:30pm.

Ava weighs 5.56 kg = 12.26 pounds.

Praying for Ava's lungs to grow and outgrow the trach...

Day 255

Ava's gas was 69 this morning. They also found another bug in her PIC line and are putting antibiotics in it and letting it sit for 12 hours. Then the pull the antibiotics out and put some new back in to stop it from getting into Ava's blood. They don't think she is sick because she seems to be happy, but what I am curious now is that with her blood gasses being higher than normal, when they were pretty good for a couple of days, and she was a bit crabby, maybe it wasn't because her "lungs are so bad" or that she is withdrawing from the sedative. Maybe she is fighting this infection and she's winning, but her gasses have a been a bit high and she was a little cranky from not feeling well. I am going to make a point to discuss that again tomorrow as well as pulling the PIC line. We have to authorize it to go in, so why can't we tell them to take it out? It's not helping her...

Tonight she will be weighed again and hopefully there is strong growth. I did have so much fun with her today and we worked on her "tummy time". She was on her tummy for at least 10 minutes and she even lifted her head up. It was awesome! My baby was acting just like a normal, every day, veggie eating baby!

Praying for Ava to be strong and be infection-free...

Day 254

Ava's gas was 74 then they went up in her pressure support to 24 and her gas came down to 59. She is still breathing at a rate of 5. She had a pretty good day and was smiling and happy most of the time. We are finally approved for our trach training. Praise God! Very excited to be done with that part of our training.

Ava went up in her weight to 5.64 kg = 12.43 pounds.

Praying for Ava to grow and her lungs to be strong...

Day 253

Ava's gas was 86 and then 85. They thought she might be sick, but when they got one test back, it doesn't seem so. They did send in her PIC line cultures today so we shall see that tomorrow. She is a bit more fussy but it could be the withdrawal, teething or gas. I didn't see her smile today though. :(

Ava's head is 39.5 cm = 15.55".They said her length is 56.5 cm, but it is probably still the same as last week - 57 cm. We did it three times last week. I wasn't there today.

Praying for Ava to grow and be healthy...

Day 252 - 36 Weeks Old!

Ava's gas was 81 today. Not good. They kept her at the same settings and are waiting to see how she does tomorrow. They still think she is having withdrawal from her sedative so she got one does of the adivan (sp?). I sat her up for a bit and she held her head pretty well for about a minute. She fell asleep in my arms and when I put her back in she didn't wake up. I learned how to give her meds tonight as well.

Ava went down a little in weight. She is now 5.44 kg = 11.99 pounds.

Praying for Ava to grow and not to get sick...

Day 251

Ava's gas was 74. She supposedly was crabby with the nurse last night when she didn't know her. The good thing about that is that she is recognizing people. She is getting albuterol treatments every four hours and it seems to be helping her. Her vent pops off the trach so often though. It's so frustrating. Nothing much else happened today.

Praying for Ava to grow...

Day 250

Ava's blood gasses were 94, 84 and 88 this morning. After upping her rate, they decreased it when they got a higher blood gas. Then they went back down on her rate to 5 bpm and upped her pressure over peak to 14 from 12. They then got a gas of 75.

We met with the doctors again today and of course they discussed this could go on months and months, especially if she got sick again. But we did hear again that between the time of her CAT scan in April and the CAT scan in August, there has been long growth and the Lung Center doctor was surprised to see it. Well, we all know that it's due to all your prayers and how much God has had a hand in Ava's life and progress. She is developing well and is showing no signs of cerebral palsy or anything like that yet. She needs to work on head control but that can happen. She is completely off the sedative now, and still doesn't have any jerkiness. She is a bit agitated from coming off of it though and are giving her adivan (sp?) when she is inconsolable. They are checking her stool to see if she is digesting properly. Her other tests came back normal.

Praise God for all that he has done for Ava as well as our family. Gratefully our support system has grown and we are blessed to have some important people that we can count on, on a weekly basis. We are so grateful for my parents that are with our ladies most of the days, especially when they are sick. The nurses who love caring for Ava and even read this blog are so important to Ava's growth as well. I am forever grateful to them and love hearing when I call that they are on for the day.

Ava weighs 5.5 = 12.13 pounds, but she just got more blood yesterday so some of her increase could be the blood.

Praying for Ava to gain some poundage and for her to be protected from all germs...