Day 249

Ava's CO2 blood gas was 74 this morning. Not too great but they kept her on the same settings. Hopefully tomorrow the gas will be better.

We did another trach change with the trainer tonight and I am cleared to be approved and Anthony has one more change until our trainer will send in the paperwork for our approval. Yeah! One thing done. She saw me working on Ava for about 30 seconds when she said, "Yeah, Ann your approved." So happy. ;)

Anthony came back today from a trip to Florida. We are glad to have him back. He's been away a lot for the past few weeks. We are trying to get our training done so we don't have to hurry especially if he is away.

Praying for Ava's weight to be increased and her CO2 to go down...

Day 248

Ava's gas was 64 today. Pretty good. She slept really well through the night. They took her sedation down to half so she is on .025ml of versed. She is also on 27 ml of food every hour in case I didn't write that before which they upped on Saturday. Her nurse that was on today thinks she is fussy when she goes down in her sedation but I have never heard any of the other nurses say that. She did have a fussy period around 5pm tonight when she woke up and didn't even open her eyes but started wiggling and be mad. I rubbed her gums which she liked for a few seconds but then her vent popped off and then we couldn't do anything to help her except bag with some extra O2. Interesting enough it happened the same time yesterday when she was asleep and she did go back to sleep for a while.

Ava gained a bit of weight - 5.34 kg = 11.86 pounds. VERY close to be 12 pounds

Praying for Ava to grow and be strong...

Day 247

Ava's CO2 blood gas was 70 early this morning. She slept pretty good and was only up twice for a diaper change and gassiness but went back to sleep within an hour. Lung center came in today to check up on her and she seemed to be labored in her breathing. They could hear the air coming out of her mouth so they put her down to 5 bpms (from 30 bpm) and a pressure of 12 (from 18). After 4 hours they got a gas and it was 67 so that is good. They were afraid she would stop breathing on her own when she slept but she kept breathing and only went down to 19 breaths per minute. She is sleeping right now (11pm) and she is breathing on her own at 34 bpms. Basically she is breathing on her own right now and she is able to continue even when she is sleeping which we didn't really know if she could do.

Tomorrow we'll know if she weighs more. If she does, than it's only 5 days from breastfeeding again.

In other news, the girls at home are sick again. Ariana's asthma is acting up so please pray for her as well. Hopefully she won't be at Children's like she was over a year ago.

Praying for Ava to come home and have peace...

Day 246 - Back on the ol' vent

Ava's gasses were 80 (on home vent), 81 (on hospital vent) and 62. She was also desatting a bit and decided to put her back on the the regular hospital vent. I discussed Ava with the docs from lung center and the PICU and they felt it harms her and doesn't help her to grow when she is on the home vent and isn't ready to be on it. They decided to have her on the hospital vent for a month and try to get her to grow. They want to test her poop to see if she is digesting and have endocrine check her out again. The good news is that the lung center doctor said that she saw that Ava has grown some lung tissue in her last cat scan. The other good news is after we had the little meet, Ava has gained weight and grown. Once she has gained weight for a week I can breast feed her again.

Ava weighs 5.3 kg = 11.68 pounds, length 57 cm =  22.44", head 39 cm = 15.35".

Praying for Ava to grow...

Day 245 - 35 Weeks Old!

Ava's gas was 68 today. Not good and it's been climbing. Tomorrow morning is a big day. If her gas is higher and in the 70s, they will probably put her back on the regular vent. If it's lower they will probably keep her on the home vent and we can still possibly be going home soon. She is still on the sedative but may be off tomorrow. We will also see if she has gained any weight since Friday am.

Please, please, please oh God, bring our baby home, we really don't want to make this a year...

Day 244

Ava's gas was 62 today. They think it's metabolic because they increased her feeds yesterday. She slept most of the day today. She did have a spell where something must have gotten stuck in her trach and they had to bag her. They suctioned her and she came back. Her heart rate was high for a bit but it came back down a little while later. They said it wouldn't stop her from coming home but it's something that will probably happen at home and we need to know how to handle it. The doctor on today also told me that he doesn't see any indication that she's not abnormal or has cerebral palsy especially because her limbs aren't stiff. This doctor has always been strong in sending Ava home and how Ava is pretty healthy for being a micro-preemie.

We are quite blessed. God is giving us such a perfect gift and we are living a miracle. Thank you God. Now, can you please bring Ava home and not have to ever call 911?

Praying for Ava to be healthy...

Day 243 - 8 months old today! (4 months corrected)

Ava's gas was 51 today. She had a great day and pretty much slept all day. Ava did go down in her weight to 5.1 kg from 5.46 kg. That's a lot and they decided to up her calories to 27 ml and hour. I spoke with one of her favorite nurses tonight (who reads this blog) and she told me they may want to keep her on her one sedative, Versed (sp?), because they think it's helping from her movements being jerky. She's on a very low dose and her jerkyness could be a mild case of cerebral palsy. They aren't sure and maybe she is better, but they won't know until they take her off of it. They said that most micro-preemies do end up having something wrong due to their earliness. I am still praying that it isn't the case. God is protecting Ava and he has protected her from so much like the brain bleeds, her heart and her eyes... We all know how blessed we are to have Ava. You should see how she can move around now, she moves her head to the left and right, can grab onto toys and can move her hands to midline, which her nurse said is huge. So, besides her head not being stable, which is hard with a vent attached, she is developmentally appropriate. Praise God!

Next Friday we are having another meeting with Lung Center to discuss Ava again. Still doesn't mean she is going home, but I would love to have Ava out before flu season.

Ava weighs 5.1 kg = 11.24 pounds.

Praying for Ava to grow, grow, and grow....

Day 242 - Another try...

Ava's gas was 46 today. She had a great morning and was even sticking out her tongue and smiling at the nurse. And finally later this afternoon, Lung Center came in and put her on the home vent. She seems to be really comfortable on it and is very happy. I came in last night after our family support meeting and we played and talked for a little bit. I even got a video of her smiling. Now I can clean up our double stroller and we can stroll her around the PICU. She gets weighed tonight and hopefully she gains some weight.

Praying for Ava to get home and have peace...

Day 241

Ava's gas was 39 today. Really good again. We heard rumblings of Ava going on the home vent today, but lung center said no and to wait until she is stable on this vent. Not sure how much more stable Ava needs to be. They are also still looking for her to grow and she did gain a little the last couple of days. They also upped her calories so they are looking for her to gain and if she doesn't, they will think something is wrong. Her thyroid tests came back normal as well. She was a bit fussy today on and off but we really think she was teething. Physical therapy and child life both came in today to see her and she played really well with them. PT left a note saying Ava is able to get her head to midline and she can move her head to the left.

Ava weighs 5.46 kg = 12.04 pounds.

Praying for Ava to grow...

Day 240

Ava's gas was 36 at noon today. REALLY Great! She was really fussy this afternoon and evening but she finally went to sleep at 10pm. She didn't sleep much through the night the night before. We think she's teething so they got the Orajel. They had me change the trach to an uncuffed trach tonight. The lung center wanted it changed to the trach she would go home on. I did it well again and changed the trach ties even better this time. I am definitely getting more comfortable.

My other two girls definitely have a cold. I took them into the doctor's because Ali said her ear hurt, but the doctor said it wasn't an infection. Anthony is sick, my mom is sick, but I'm not (although I get so nervous that I am) and my Dad isn't.

Today was a sad day because my beloved Aunt died today of cancer at the age of 68. One year old than my Dad. She lived in Florida and thought I often didn't see her, I will without a doubt miss her. I am also sad that she didn't meet my girls and the girls didn't meet her. May she have had a glorious day meeting her maker and may our family rest in the knowledge that she is in a place where this is no more pain.

Praying for Ava to grow and get home to her family...

Day 239

Ava's gas was 68. She had a pretty good day and slept most of the night. She was up a couple of time for about 15 minutes or so and someone also woke her up but she slept most of the night. She has been very happy and loves to smile and make funny faces.

They are setting up a meeting for Anthony and I to discuss Ava's steps. Doesn't mean she is going home soon, they just want to meet after another month (or so) has gone by. Her doctor on this week is concerned about her growth and that she hasn't had much. She hasn't grown in length and she has only grown .5 cm in head circumference. She had the endocrine docs come in and they said they were not concerned and they will check on her again when she is home. But Ava does really need to grow. She hasn't been having any of her "spells" where she desats and her heart rate goes down. That was one thing that Lung Center said cannot be happening for her to go home. Well, it's not, so let's roll... ;)

Ava weighs 5.36 kg = 11.82 pounds and her head is 38.5 cm = 15.16"

Praying for Ava growing...

Day 238 - 34 Weeks Old!

Ava's blood gas was 69 today. It went up but I guess they weren't concerned. Her white blood cell count did go down as well. They are going to be giving her vitamins (that I always gave the girls) when you breast feed. Not sure why they waited so long to do that. She was sleeping quite a bit today so I am just hoping it's not a sign that she is sick again. But the nurse told me she was smiling at her tonight and this was the best she has ever seen her. Hopefully everything has finally clicked into place like everyone has described would happen and we can get her home. The only thing is her blood gas isn't the greatest.

Praying for Ava's blood gasses to go down...

Day 237 - Oh how our Lord is good...

Ava's gas was 60 and 64 today. Her white blood cell count went from 27 to 19! Yeah! We had such a good day together today again. She even slept from 9pm - 5am, was awake from 5am - 6am, and then went back to sleep until 7:30am. Her nurse said that she likes to move her arms while she's sleeping straight in front of herself and even move her fingers around. She took a couple naps today as well and was pretty happy the whole day. She grabbed at toys despite having an IV in one arm and a PIC line in the other. She even sat up for a bit with the nurse and pulled one of the toys into her mouth. We think she is teething since she's almost 8 months. I rubbed one of her toy key rings on her gums for about 15 minutes and she loved it. I really feel like God's telling me she is going to be developmentally fine. We shall see. Only God knows and he's been helping me to know sometimes too. I just wish he would tell me when she's coming home. ;)


Praying for Ava to grow, grow, grow...

Day 236 - Amazing Ava

Ava's gas was 59 today even after going down in her settings. They took off the paralytic at 11am today. She awoke pretty happy and content. I was able to come in today from 3pm to after 8pm and I absolutely loved every minute of it. She was so happy, smiling, cooing (if she didn't have a cuffed trach we maybe could have heard it), and even mimicking what my face was doing. I sat her up for a bit in my lap and she even held her head up pretty well. Praise God for this day! I bathed her and changed her trach ties too.

I also got to meet with "Stone's Buddies" who support families coping with chronic illness. http://www.stonesbuddies.org/index.asp We are going to go to a support group they have once a month. I am really looking forward to talking with families with the same type of situation. It really does help knowing your not alone.

The staff at Children's have been really supportive lately about how we can improve Ava's care. I have talked to the charge nurse and thankfully we have been having the nurses that really care and our excited about Ava and love her. (Some of which read this blog!) We are hoping to take a better look at sanitary conditions as well as helping Ava to be more active and productive.

I finally figured out how to post Ava's slideshow from her prayer vigil. Check it out!

Praying for Ava to come home soon and to never get sick again...

Day 235

Ava's gasses were 35, 31, 35, 54 today. The nurse that was on last night forgot to leave her antibiotic in her PIC line for 12 hours. Her white blood cells went up to 21 from 17 the day before. They were able to go down in her vent settings to what they were when she got sick. 40% O2, Peep of 6 (needs to go down to 5), 30 bpms, and pressure support of 18. They are hoping to take her of the paralytic tomorrow and decrease her sedation slowly so she won't have withdrawal symptoms. Praise God! I just want our baby home so badly. She would be so happy at home. I am missing her smile so much. So I currently have ALL of my children sick. Alexandra came down with a cold today and Ariana still has hers. They want their mama to hold them and cuddle them, but I am so afraid to now because I don't want to get sick for Ava. I normally would cuddle them and kiss them and not be afraid to get sick but rather to be there for the girls lovingly.

Ava weighs 5.4  = 11.9 pounds.

Praying for Ava to get home in September... With God all things are possible...

Day 234

Ava's gas was 33 today. They changed her PIC line today and put another one in. Hopefully the infection will be out and it was just in that old PIC line. Her white blood cell count went up from 11 to 17 so they couldn't take her off sedation or paralytic. I realized today that she is in a coma. I asked the nurse and she said she is in an induced coma. She can't swallow, can't blink her eyes, can't make moisture in her eyes (they put some kind of gel directly on her eyeballs to produce moisture), but she can get upset by watching her heart rate. I washed her up today and suctioned her trach and mouth. She knew what was going on because her heart rate was in the high 130s and 140s. I brought Ali in and she was so good watching a movie while I took care of Ava. Ali was asking questions about why Ava didn't move. It's hard seeing her like this another day. I don't even know how many days this has been. I couldn't help myself by putting a headband that I bought the other day on her head. She looks so beautiful, but I don't like moving her eyelids and looking at her blank stare or cleaning her up and feeling her body be so limp.

Praying for Ava to get healthy...

Day 233

Ava's gas was 47 today. They are hoping to go down in sedation and vent settings tomorrow. She is on a peep of 8, 34 bpms, 50% O2.

I spoke with the charge nurse today (who was rude with us the other day). She has asked a nurse (who is wonderful) to help us with training for Ava. They don't want to teach us the home vent until she is closer to coming home because they think we'll forget. Doubt that, but they are going to teach us everything else. They don't want the trach trainer to train us either in the meantime since Ava is using a trach with a cuff which helps block the air that escapes around her trach (leak). I have been quite emotional today with seeing Ava lay there, plus I didn't get to clean her up today since I was late getting in before the nurses shift ended.

Praying for Ava to come home and be happy...

Day 232

Ava's blood gasses were both 49 today. Really good, but she still is being heavily sedated. I decided to come in and be more active in Ava's care. I washed her up, changed her trach and trach ties. I am going to wash her up and change her trach ties every day. I also wiped down her room again as well.

I spoke with a "Family Centered Care Coordinator" today about our past issues and she said she could help us with them. She was also going to get a couple families talk with us about their past issues and their child coming home. I also talked to the discharge planner about training on everything we need to and she said she would get it moving. I finally feel a little bit relieved. Still don't exactly feel very trustworthy of the hospital but maybe things are moving in a better direction.

Ava weighs 5.48 kg = 12.08 pounds. Not sure how much of that is real weight or her retaining water.

Praying for Ava to be healthy and come home...

Day 231- 33 Weeks Old!

Ava's gas was 59 this morning so we thought she was getting better. Today at 4pm, it was 69. She kept waking up a bit and having to be sedated more. I am so confused on how much sedation she really needs. I'm sure she's not going to wake up happy and smiling from being put under for three days...

I spoke with Ava's neighbor who has been in the hospital for almost a year. That baby's mom told me how aggressive she is with the staff. She also told me how she is constantly cleaning up the room. So I sanitized Ava's room pretty good today. She also told me how her daughter would smell around her neck from the nurses not cleaning her well when they changed her trach ties. So, now this mom takes care of her as much as she can when she is there. The past couple of days before Ava was getting sick I would try and suction her and take care of her, and the nurses were having a hard time letting me do it. The one nurse couldn't even handle me doing it and took over because she felt that I needed to be more sanitary and use one hand to be dirty - take the trach off, and the other hand to be clean - to suction her trach. I (and Anthony) will be Ava's primary care givers. None of the PICU nurses are going to be home with us. This mom also told us we should push to get trained sooner. They don't give anybody enough time to train. We will also both have to stay overnight at the hospital and take full care of Ava throughout the night.

Praying for Ava to get healthy and to never be infected again...

Day 230

Ava's gasses were 83, 71, and 66 today. She is still being paralyzed and sedated continuously. We had a wonderful nurse today. I told her some of Ava's story today and she told me that it was a great privilege to take care of Ava. I pray that God will send her many blessings.

I forgot to write yesterday that God blessed me with being caller #5 on our local Christian radio station - WDCX and I won Jill Kelly's new book about her son Hunter who taught her about God and he never spoke or smiled. I also got to mention Ava (and how Hunter's nurse is teaching us trach care) and how long she has been in the hospital to the radio host and he prayed for Ava on the air. I thought it was an awesome blessing and I have never spoken on the radio before or have ever won anything by being a certain caller.

Praying for Ava to be protected and get healthy and strong...

Day 229 - Ava's sick again...

Ava is sick again. She has a lot of secretions from her trach and her gasses have been all over the place. Her O2 saturations have been in the high 80s, low 90s and they need to be around 100%. They are sedating her and paralyzing her to keep her calm. If she's awake and fighting her gasses are so high. They did start her on antibiotics and her trach culture finally came back positive so they put her on another antibiotic.

The neurologist never called today either. So we still don't know what the EEG results mean.

Ava weighs 5.28 kg = 11.64 pounds.

Praying for Ava to get better and stay better fast...

Day 228

Ava's gasses were 105, 85 and then 70 today. They made a few vent settings. We also got the EEG results back. The doctor (not the neurologist) found a slight area of the brain where the brain waves slowed a bit. She didn't know what that meant but she said it was expected with Ava since she sometimes has low O2 saturations. She didn't know much and was going to have the neurologist call me asap.

Praying for Ava to be healthy and grow...

Day 227

Ava's blood gasses were 71 and 65 today. I spoke with the doctor today about there plans with Ava and they are hoping she can gain weight for 5 days, then they will put her on the hospital home vent and then they will put her on the home vent. Hopefully that could all happen within a month. Please pray for that to be so. I know that we can do a great job at taking care of her and all that equipment.

I talked the doctor into approving me to breast feed and Ava did great. She hasn't in at least a month, and she did so great. Better than she has ever done!

Ava weighs 5.22 kg = 11.51 pounds. She went down a bit.

Thanks to everyone who's on this rollercoaster with us. Won't it be great when we can ride a nice smooth ride like the antique cars?

Praying for Ava to grow and her test results to be great...

Day 226

Ava's gasses were 72 and 70 today. Not really great. She did sleep most of the day and had her hearing and sight exam with a machine that tests her brain waves.

I had a bad situation with one of the PICU nurses today. I called and spoke with the nurse in the morning like I normally do. Of course the first thing out of her mouth is how fussy Ava was or is. I told her that Anthony and I will be in to get trained on Ava's trach change at 1pm. She then got very volatile and said that she can't have another trach change since she had two yesterday and that another one could cause her harm. The only reason I even told her about it was because the nurse the day before did not know that we were coming in and changed the trach. So I let the night nurse know to tell the day nurse to expect us. Well, she basically yelled at me and told me that she was going to tell the doctors when they go on rounds and that we won't be able to be trained. She also asked why would we need to rush since Ava's nowhere near ready to come home. "She's not even on a home vent." I proceeded to tell her that we started training in May and still have not completed it and we would like NYS to have to have the info that we completed it so Ava can be closer to coming home. She knew nothing of that, but told me that she would talk to our trach teacher. I told her that I am sure our trainer wouldn't want to put Ava in any harm and that she knew what she was doing.

Well from what I heard, shortly after, she told the doctors that we cannot do another trach change and then she even called our trainer flipping out to her that we cannot do that. I tried to call the trainer to seek her advice, but I couldn't get her since she was a nurse on another floor. Meanwhile, Anthony and I prepared to go in and even after I called in and couldn't speak with the nurse, nobody told me that the trach teaching was canceled. Anthony took off of work and we even drove separate cars since I had a dentist appointment.

We came in and the nurse who was so nasty to me earlier was on lunch. Another nurse was watching Ava and they proceeded to tell us after I asked if Tammy was coming, that changing the trach would stretch out Ava's hole in her neck. We must have had three fellows and a nurse in there telling us. It was unbelievable. They were not being very family friendly (like it says on the website) and were in a way attacking us. I spoke up and said that my husband took off work etc. We later found out from the trainer that the nurse told her she would call us to make sure we didn't come in and she never did that. I told the nurse who had taken over on the lunch break, (who I later found out is a charge nurse and is supposed to be a parent advocate) that our nurse was very rude on the phone. She looked shocked and totally defended this nurse and made us feel crummy. We finally got the trainer down after we said she had been a nurse for 26 years and she must have a reason to change the trach and would never do anything to hurt Ava. She came down and unfortunately right then the tech for Ava's hearing and sight test came down. We spoke to the trainer for a bit and she told us that we could change the trach as much as we wanted and she would never be injured. We could change it once a day or even three times and it wouldn't matter. And she said that was coming from ENT. She said she would speak to the nurses about it.

She spoke to the nurses and fellows about it and they sounded so rude to her too. They didn't want to believe her and they kept arguing that Ava's not ready to go home so why does it matter?... We are basically utterly frustrated with most of the staff who is annoyed with Ava when she's "fussy". How that nurse acted today shouting at me and getting involved in something like that was absurd. None of the staff had to act that way. Would we really want to do something that would hurt Ava? I think not! We should do something about this to protect Ava but to also help future families. We have no idea who to talk to especially since I found out tonight that nurse that got snotty was a charge nurse and is supposed to intervene in situations like this. The nurse did apologize for not telling us to come in and was nice about it later. But I am so confused about what had happened. Sorry for the long gripe but I am sure some of you are may be interested.

In other news, Ava's crib is coming in the mail this week and the girls have their bunk beds and are happily sleeping away in them tonight. Ava's room is almost ready... We just need Ava.

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

Day 225

Ava's blood gasses were 65 and 64 today. We got to go in again today for our trach teaching. The nurse wants to work with us still a couple more times. She didn't like having so much time between the last couple but myself and Ava got sick so we couldn't do them. I would just like her to sign off on us so we can get home care and then we (and my mom) can still train until she comes home. We are going to do it again tomorrow.

This week they are going to test her sight, hearing and how her brain works. Please pray that goes well.

Ava weighs 5.28 kg = 11.64 pounds.

Praying for Ava to come home soon...

Day 224

Ava's blood gas was 68 at 7am and 57 at 4pm. They did happen to go up a little than what they were. I wonder if it's because of the weather. Most asthmatics are having trouble with the change in weather right now. She's sleeping pretty well too. It is a tough fight because every nurse that comes on that doesn't really know Ava has preconceived ideas about her. She fell asleep for me when I held her today. She rarely has a fit when we are there and paying attention to her.

We got a crib for her today from Target. Please oh please God let Ava come home to us! She would be so happy with us all day.

Praying for Ava to heal...

Day 223 - 32 Weeks Old!

Ava's gasses were 51 and 44 today. This is really, really good. The nurse today was really negative. Ava still has a reputation that she is a mad and agitated baby. Two of our nurses whom we love have to keep telling the nurses that she is happy. We really need to bring Ava home.

Praying for Ava to not need any trach or vent...

Day 222

Ava's blood gasses for today were 52, 45 and 55. These are really good numbers. They don't want to lower her settings until she stays stable and grows for a few days. They may put her on the home vent after she grows a bit. She had her g-tube replaced with another type of tube where the food goes into the intestine and it helps reduce the acid reflux.

I got to hold Ava today for about 45 minutes and I gave her the paci and she fell right to sleep. I can't wait to bring her home and hold her all day!

Ava weighs 5.3 kg = 11.69, 56 cm long = 22" and her head is 38.5 cm = 15.16".

Praying for Ava to grow strong and healthy...

Day 221

Ava's gasses were 51 and 63 today and 69 tonight. One was arterial and the other wasn't so that is why it was higher. Ava is doing much better. I finally got to hold her today but she wasn't happy. So, I just got up and rocked her and patted her on her back and she fell asleep. Today made me torn between wanting my baby home, but very scared about how to care for her. She gags from the cuff that is around her trach more than her just her trach used to. We are just praying for total healing. I do think I could take care of her better at home than any hospital can. She can grow and thrive at home and be a baby. The vent leaked water back in her trach and I kept telling the nurses there is fluid there. The nurse finally listened to me and suctioned her and I even saw lots of water around her trach. She was completely wet around her neck. Ava is definitely doing better today. She could look around and focus. But she acted like she didn't know me. I really hope God will just bring her home to us.

Ava did have a slight temperature today but it seem to go away. They want to change her to a different type of g-tube that would help her with acid reflux. She threw up twice last night a bit, but I think it was just a fluke thing.

Praying for Ava to BE healthy...

Day 220

Ava's gas was 30 this morning so they change her vent settings. She is in 50% O2, peep of 5, 30 bpms. I got to meet occupational therapy today because they finally stopped sedating Ava so much. But they sedated her again tonight. I wish they would just be ok with her moving around and act like she is their child. She needs to be loved all day like she would be if she was home.

She has had a low grade fever all day. 110.2 and now it was 99. Please pray that she doesn't get sick again.

Ava weighs 5.74 kg = 12.65 pounds

Praying for Ava to be healthy...