Day 219

Ava's gasses were good this morning so they went down in her pressure support and then her gas was in the 80s. They gave her albuterol and her gas came down to 62. Later at 4pm it was in the 80s again, but tonight it was actually 40! She is on 50% O2, 34 bpm, peep of 5.

They are sedating and paralyzing her still. I don't really understand why they just won't let her be. They get annoyed when she wakes up and gets agitated a bit. Her eyes are all over the place and she can't focus well. It's been exactly two weeks since I held her last. I'm saddened because I can never get those two weeks back.

Alexandra said the sweetest thing tonight. She asked Anthony and I who can kiss Ava on the lips (because we were kissing Ava on her feet tonight). We said "no one can kiss Ava on the lips." She said "Yeah, someone can kiss her on the lips. God! God can kiss her on the lips." Thank you God for bringing us a smile through our first born. May God bless Alexandra for helping us keep our sanity.

Praying for Ava to grow lungs...

Day 218

Ava's blood gasses for the day are 4am - 55, 11am - 62, 3:30pm - 52, 6:30pm - 67. She is now in 50% O2, 35 bpms, and a peep of 6. Things are totally looking better today. Praise God! Keep the prayers coming... She got another PIC line in today that has two ports and she was sedated for much of the day to help her heal.

Ava weighs 6.2 kg = 13.67 pounds.

Praying for Ava to heal and for positivity to surround her...

Day 217 - 31 Weeks Old!

Ava's gas was 62 this morning. She had two more episodes of her heart rate going down to 30. Her gas was in the 50s this afternoon. She seems to be getting better. She is in 55% O2, peep of 7 and 34 bpms. Hopefully I can hold her again this week and breastfeed. Her eyes were looking all over the place and she looked so stressed when I saw her today. I am so hoping that it was just because she is sedated so much.

Thank you to all who attended Ava's prayer vigil. I hope it inspired people to see that miracles really happen and that all we have to do is pray. It meant so much for all of you to come and pray for Ava and we hope that you are blessed as well. We not only wanted to pray for Ava but praise God for giving us this living miracle. I hope you are truly blessed by being there. If you would like a bookmark, please contact me with your address.

Praying for Ava...

Day 216

Ava's gas was 79 this morning and she had a hard start to the day by getting upset and then they had to paralyze her. Her gas did go lower a couple of times. Tonight she got upset and her heart rate went down to 30 and they had to do chest compressions on her but she was back to normal in under a minute. The doctor who I think is a fellow said she has far to go and that could happen at home. They are getting more secretions out of her as well.

I am so tired of things happening to our poor daughter. She is only sick right now because of the hospital. I pray all the time that God will protect her from any sickness. I just want her home and what bothers me a lot is that I am missing out on her life.

Tomorrow is Ava's Prayer Vigil at 6pm at Knox Church on Elmwood Ave in Kenmore, NY. We would love to have you come and pray for our beloved daughter. We really need a miracle.

Praying for Ava to heal and come home soon...

Day 215

Ava's gasses were in the 60s most of the day. She is in 34 bpm, a peep of 6 and 55% O2. They are still sedating her pretty often so she can sleep otherwise she just moves around and gets upset.

SKIP of WNY who is helping us to get her home called today and said two nurses from an agency are interested in being her nurse. They agency and the VNA wants to meet with us to go over Ava.

Ava weighs 6.5 kg = 14.3 pounds. She's retaining a lot of fluid so this isn't an accurate amount.

Praying for Ava to heal...

Day 214

Ava's gasses were all over the place again. 40s, 50s, 80s. She still is pretty sick. We were actually away with our two ladies in the 1,000 Islands from Tuesday until this afternoon because the girls needed time with us. They don't like us going to the hospital every day anymore. We had fun, but it was hard being away when Ava is this sick again. Her blood culture hasn't come back positive again, but they are sedating her and paralyzing her so she is calm pretty frequently. She had some blood in her urine but they think it was because they put a catheter in her to keep track of her urine because it was so low. When I went into to see her, she was so puffy. My poor baby...

Praying for Ava to get well and come home to us...

Day 213

Ava's gasses were in the 80s this morning, then they were in the 60s after they sedated her and paralyzed her. Her gas even went down to 42! She won't sleep unless she is sedated and/or paralyzed. She had another fever today and they said she also had shivers so they assumed she would have another fever. She is in 60% O2.

Ava now weighs 5.9 kg = 13 pounds.

Praying for Ava to feel better and get home to us..,

Day 212 - 7 Months Old Today!

Ava's gasses were in the 80s and 70s today. Her doc is really great and they aren't too concerned, but they have to work a lot to get her to calm down. Her white blood cell count is normal but she is really upset. We just want our baby home and feeling great and most of all in our arms so we can cuddle her.

Praying for Ava to get better asap...

Day 211

Ava's gasses were 67 at 6am, 68, 72 and then 76 at 8:30pm tonight. She is on the same settings as yesterday. They are sedating her a bit to help with the amount of air being pumped through her lungs so she is sleeping more.

We spoke with our favorite doc today and he went over the ct scan from yesterday.   This time we actually saw the ct on his monitor.  With the scroll of the mouse we viewed Ava from top down and from the front. Layer after layer he went through and discussed the differences she has, growth and development of her lungs. What we learned was the indeed her right lung has grown and moved below and over where her left lung was under developed.  This also pushes the thymus gland over to the left as well.  This is fine and causes no need for concern - "the body takes care of itsef."   He explained that the thymus would cause the Dr.s to think her left lung is collasped when it is not.  In fact has been growing and only has a small area at the top that is partially collapsed. Over all, her lung ARE IN REALLY GOOD SHAPE!

The Dr also explained that the combination of her diet/feeding times have caused her CO gases to be high.  He simply reduced the amount and feeding times and we almost instantly had better gases.

This Dr. is so good.  Ava always does well with him.

Ava weighs 5.56 kg = 12.26 pounds. Over halfway there to the additional kg that they wanted to see.

Praying for Ava to come home soon, and I mean soon...

Day 210 - 30 Weeks Old!

Ava's blood gas was still high this morning, but then they found some vent settings that helped her. Then her blood gas was 62 and it even went down to 52! She is on 55% O2, 38 breaths per minute and a pressure support of 28 with a peep of 5. She still is pretty upset throughout the day.

I am working on a slideshow of Ava for the prayer vigil on next Sunday, August 29th at 6pm at Knox Church on Elmwood Ave in Kenmore, NY. We hope to see you there!

Praying for Ava to have peace and to come home and spend her life with us...

Day 209

Ava's blood gasses are still really high and they are taking them frequently. Some are 111, some are high 90s. Not below 90s though. Her white blood cell count is back to normal. She had a cat scan and that came back that only a small portion of her upper left lung was collapsed. There are some air pockets though.  Her right lung is now moving over and compensating for her left.  While this means the lungs will not be asymmetrical, she will be just fine in the long term and is a natural course for babies in this situation.

She still is getting pretty upset and the poor nurses really don't know what to do with her at times...

Praying for her blood gasses to go down and for Ava to come home...

Day 208

Ava's blood gas was 130 this morning. They did get it down to 99 then it went back up again to 107, then back down to 97. They told me later this afternoon that her infection is in her blood which is pretty bad. She's holding her own, but they said she could get worse before she may get better. She is on 40 bpms, 50% O2, and she is still saturated well.

I did get a call from the Visiting Nurses Association (VNA) and they said they are working on getting Ava to come home. They will setup home vent teaching for us and our family and get us home equipment. The woman who called actually knows my mom and last saw me when I was little. She was surprised that Ava is my third child. Yes, God blessed me with three very lovely ladies. :)

Ava weighs 5.34 kg - 11.8 pounds.

Praying for Ava to fight off this infection and come home to us...

Day 207 - Ava's sick again...

Ava's gas was 90 this morning. They "suddenly" realized that she is sick. I have been talking to them about getting her on antibiotics but they wanted to diagnose it first. Her second gas when she was sleeping came back as 88. They decided to give her a spinal tap since she was so cranky and they thought she may have had headaches. They also took trach, pic line, urine and blood cultures. Thankfully, the spinal fluid came out clear and came out fine so she doesn't have spinal meningitis. They eventually found out that she has an infection in her PIC line in her arm, which looked unclean and bloody. They are giving her IV drugs through the PIC line to make it go away. That is why she has been so cranky and may even been why she's been throwing up, not because they thought she had acid reflux. They also thought she was cranky because of the home vent... I think they tend to think her lungs are worse than they really are. So, now she is on 40 breaths per minute from the 10 she was on before. 50% O2. Hopefully she will get better fast and be able to go back on the home vent.

I am still sick with a stuffy nose, so I am just going in every day to drop off her milk. I miss my baby!

Praying for Ava to get healthy and stay healthy...

Day 206

Ava was up early again last night and was unhappy so they couldn't get a gas. They did get one later this afternoon and it was 78... Ugh, but they didn't change anything and she still is pretty much breathing on her own on the vent without any assisted breaths.

I couldn't come in today because I have a stuffy nose. I miss my baby and I couldn't give her any love or breastfeed her. :(

Ava weighs 5.2 kg, .02 kg up from Monday - 11.46 pounds.

Today is my husband and my 9th Anniversary. Little did we know when we got married that we would end up with 3 beautiful girls. I always felt like we would have 3 kids and we even talked about what it would be like to have a handicapped child and how we would handle it. But thank God for giving me such a great husband to go and grow with through these rocky times. I am so blessed to have Anthony. I love you Anthony James and I can't wait to spend the rest of my life with you and our babies! (Please note: I hope he's reading this tonight since he is away for work).

Praying for Ava to come home...

Day 205

Ava's gas was 74 and she still is on 10 breaths per minute and on the regular vent. She did wake up in the middle of the night as usual despite being off of the home vent.

She breast fed and fell asleep and breast fed again for about 45 minutes.

Praying for Ava to grow stronger...

Day 204

Ava's gas was 82 this morning. She was up at 4am again, mad but she doesn't desat. They think that she doesn't like her vent settings. So, they took her off of the home vent and back on the old vent. They only put her on a rate of 10 breaths per minute from the 38. They got a gas of 76 so they liked that better. When she was sleeping tonight she is only breathing 15 or so breaths per minute, so we are hoping her body kicks in and doesn't rely on the vent. The nurse was so nervous that she got a gas and it came back 64 and that is good.

Ava did breast feed well today. Yeah! I was a happy mommy. Plus she was excited to see me. She kept following me with her eyes around the room and she seemed actually happily surprised to see me walk in the room this morning.

Ava weighs 5.18 kg which is 11.42.

Praying for Ava to grow and be healthy...

Day 203 - 29 Weeks Old!

Ava's blood gas was 68 this morning. Not bad and I guess her base excess is higher so that doesn't help her gas to come down. She's having a tough time breastfeeding. Her vent keeps popping off and both her and I get frustrated. Nothing seems to come easy that's for sure. Still praying that she can be freed from this vent and trach asap. God can make that happen. Ava threw up a bit tonight and she's been having some gas problems so she's been acting a little upset and as you can imagine, the nurses complain. Not a lot but enough and I know they do to each other. Her nurse last night doesn't like it when they tell her about Ava being cranky, but I found out this morning she was cranky for her, so it will be interesting to see what she thinks on Monday. I miss her former primary nurses in the NICU at Sisters and Children's. She does have a couple good ones in the PICU, but it would be awesome to combine them all...

Thanks for whomever sent the comment of a song for us. I can't add a comment. I'm hoping nobody else is having that problem. I may have to change the blog format... Sorry if that's the case.

Praying for Ava to breastfeed well and grow, grow, grow and come home...

Day 202

Ava's gas was 90 and they got it when she was mad, so they took another one and she was 72. Hopefully the gas will be better tomorrow.

She didn't breastfeed again either today. I'll keep trying though... I am down to bringing in only a few bottles now that I have run out of her "stash" of breastmilk.

Praying for Ava's growth and for her to breastfeed well...

Day 201

Ava was up at 4am upset. So they didn't get a blood gas this morning. After they vented her g-tube and let all her gas escape she felt better. Ava's gas was 68 at 9:40am.

They did a bronchnoscopy again today to check out her bronchial tubes. They found that it isn't floppy when she has a peep of 8 and when she gets upset her bronchial tube doesn't close which is a good thing. If it closes she can't breathe. They are hoping with her growth that it will grow so it could never close again. Her growth curve is not very good and need to go more on the upswing.

I tried to breastfeed again today and she was not interested at all. She would get upset. But it was after she got "bronched". I'm still praying that we can make this work.

Ava now weighs 5.1 kg which is 11.24 pounds.

Just a reminder, Ava's Prayer Vigil is August 29th at 6pm at Knox Church on Elmwood Ave in Kenmore, NY. We would love to have you come and celebrate God's gift of Ava to us and pray for her to be a healthy girl living a long fruitful life.

Praying for Ava to grow her lungs and become stronger...

Day 200

Ava's blood gas was 63 this morning. Lung Center made some vent changes and her gas was 67. So she seems to be better with the changes.

Ava breastfed for 15 minutes but she pretty much fell asleep. We also did another trach change and the woman that teaches us thinks Ava will come home soon. The Lung Center doc came in and he isn't so easy to get that kind of answer from, let alone any answer besides she needs to grow.

Praying for Ava to grow strong...

Day 199 - Another "wonderful" discharge meeting...

Ava's gas was 76 and then 71. I am not sure if she was upset when they took it but they think she was. For some reason, they did a heel stick on one of those gasses and the other was her PIC line.

We had a discharge planning meeting at 2pm. I felt like they were going to say the opposite of what a "discharge planning" meeting is and they did. They did it again. They told us Ava was going to come home, but when lung center evaluated her, they decided against it. They told us that she was having spells and I only heard about her having one. She actually had a spell while we were there so we could experience it. I understand that we wouldn't be able to help her much if she was home, but they should NEVER tell us she's going to come home in a month, if that is not going to happen. Even the agency that is helping to get us nursing was surprised by this answer.

Ava didn't want to breastfeed today. She was cranky and fell asleep.

They would like her to gain more weight but they didn't know that she had a g-tube in 2 weeks ago and couldn't eat for 4 days. She did gain more weight the past couple of days. Ava now weighs 11.46 pounds.

Praying for Ava's air sacks to grow and that she can get home to us and not be laying in her crib all day...

Day 198

Ava's gas was 71 this morning but she was supposedly upset when they got it. Ava breast fed for about 10 minutes today but she was upset before and after.

Tomorrow is the discharge meeting at 2pm.

Praying for negativity in the staff to go away and for Ava's lungs to grow...

Day 197

Ava's gas was 57 this morning and it was cappillary (heel stick), so if it was from her PIC line, it would have been better. She got another PIC line in today and it went in on the first stick.

I got two phone calls today about Ava coming home and what needs to be done. They are working on a discharge meeting this week. Thank You God! Ava also breastfed really well today. At least for 15 to 20 minutes (maybe even more). She did so well and didn't really want to stop, but her vent kept popping off the trach. She took her time to suck, swallow and breathe and the flow of milk didn't bother her a bit.

Also, Knox Church (on Elmwood Ave in Kenmore, NY) is having a prayer vigil for Ava on August 29th at 6pm. We are going to praise God for all he has done for Ava and us and to pray for more healing for Ava. All are invited. We are going to be handing out bookmarks with Ava's photo on it along with her bible verse; Psalm 118:17.

Praying for Ava to not need oxygen anymore...

Day 196 - 28 Weeks Old!

Ava's gas yesterday ended up being 58! Really good. The best part is this morning her gas was 52! She hasn't been this low in months. So she must be doing really well on the home vent. The nurse got her gas this afternoon and she was a little crabby and it came back 61. That still is good! Praise God - All our prayers are working! Keep them coming! Ava still has so far to go.

Breastfeeding didn't go the greatest today because she fell asleep. Her vent that attaches to the trach kept popping off. Really annoying to Ava and us, and she gets mad when that happens.

Ava weighs 5.04 kg - 11.11 pounds and is 56 cm - 22.05 inches. She's getting so big!

Praying for Ava's lungs to grow strong and not need a vent anymore...

Day 195 - Home Vent Part 2

Ava's gas was 60 today and that was taken from a heel stick not from her PIC line in her arm. They drew her blood and gave her meds through that line. She lost that today so they need to put a new one in on Monday. They told me it would hopefully last until she leaves.

They decided to put her back on the home vent around 1pm this afternoon. She was doing pretty well and was sleeping. They tried to get a blood gas from her PIC line and that's when they figured out it wasn't working. They tried to draw blood from her heel which they couldn't get very well and she was crying. Eventually they got some, sent it off to the lab, and they found out it was clotted. They are going to get another gas in a bit.

I breastfed her again once today. She did really well and latched on for a bit and ate. Before that I squirted some of my milk from a syringe in her mouth and it must have been too much so I got all nervous that she aspirated. I called and called for someone to come into the room, but nobody did. Eventually I got her calm down and she did eat a little. She eventually stopped but she did really good. It was at least a couple minutes and her saturations didn't go down at all. When the nurse finally did come in, I asked her if she thought she aspirated and she listened to her chest and she didn't hear any fluid in her lungs.

Ava's one doctor mentioned that when Ava's close to coming home, that they may want us to stay in the hospital for 24 hours to 48 hours to fully take care of Ava ourselves. She also told me that we will have monthly doctor appointments for each of the doctors that need to see Ava.

Thanks to Nancy for this "little angel" outfit. This is the one I fell in love with at Target.

Praying for Ava's health and for the home vent to work on Ava's lungs...

Day 194 - Home vent

Ava's blood gas was 72 this morning after going down to a pressure of 20. They decided to try a home vent (vent that will work at home) around 3pm. Her gas came back 77. They weren't happy with that and lung center already went home so they decided to pull her off the vent. Lung center is who will monitor her lungs when she comes home. They will probably put her back on Monday and tweak the settings. I didn't think the gas was much higher, but they were expecting it to be much lower.

They are now talking that she could possibly come home (the very earliest) the end of the month, but most likely if things go pretty well, a month from now or a month and a half. We are kinda shocked and surprised, but happy. They are on the lookout for nursing already in Genesee County. We just need to get the trach teaching done along with the home vent equipment teaching. We changed the trach today (I did with the help of Anthony) and we need to have at least 2 more other sessions. It went really smooth today, so I am very excited.

Praying for the home vent to work well and for breastfeeding to get better...

Day 193 - I heard a rumor...

Ava's gas was 63 this morning. Still good. I got to go in for her 3pm feeding today and her 6pm feeding today. I had lactation come in and help me and they said she is doing pretty well. They don't know if she will be able to breastfeed, but it's a good start.

ENT came in today and said that they were asking her to meet up for a discharge meeting. I said I heard that but "how soon were they talking?" She said soon. That when they start talking about how they can't do much more for her here and she would be better at home, that's when they send her home. Needless to say, I'm kinda excited, but not overly since I know it changes. Also heard a rumor which I found out is a possibility that she might go on a home vent tomorrow. Please pray that they approve it if she is ready and it goes well.

Praying for Ava to come home soon... And I mean soon...

Day 192

Ava's gas was 56 and then they put her pressure down to 20. They got another gas and it was 62, so that is still good. She slept through the night and I got to try and feed her once that evening.

She seems to be doing pretty well and playing by herself. The nurse mentioned that there would be a discharge meeting, but to "not get our hopes up." Whatever that means... So we didn't.

Praying for Ava to get home to us in August... please oh please...

Day 191 - Another good day... with Ava that is.

Ava's gas was 56 this morning. They went down on her pressure a bit and her gas only went up to 62. The last time they went down, her blood gas went up to 90.

Occupational therapy came in a verified that developmentally she is at 2 months. She just needs to move her head to the left which she has been doing more of, and pulling and grasping objects. I need to find some toys that will hang from a string above her bed for her to play with.

I came in today to breastfeed and I noticed she was quite tired. I picked her up and she got so upset and the nurse had to bag her and then she fell asleep. I left for a little bit and came back to a happy and rested Ava. That's when she smiled a lot at me. And she will only smile at me. ;) Makes mama sooo happy! I tried to breast feed but she really wasn't interested and I had just pumped as well as she gets a continuous feed until Thursday. Hopefully tomorrow, Ava will want to eat. But she wasn't uncomfortable at all and loved me holding her.

Tonight I went to see my wonderful friend Maureen, who has moved away and I haven't seen in over a year. We both had our babies during this time and it was awesome to see her. We were running late after seeing Ava, so I didn't get there until almost 5pm and she was 2 hours away. Our kids were so excited to see one another. After we ate dinner, the kids were playing and they were running back and forth from the hallway of the house and then out to the garage. Well, at one point, I believe Ali was running to the cabinet in the garage, (which they were all running into and then running back) and she must have ran to the cabinet and bounced off landing on a sharp, square pointy metal object that looked like the top of a chimney. She came running to me and I didn't know what happened. After hugging her, I looked down and saw blood gushing from her head, which scared me! Then I noticed a puncture wound in the top of her head. It almost made me sick. I thought she had cracked her head open! I called her doctor and we quickly left because I couldn't get a phone signal and I didn't know if I should go to a Buffalo hospital (we were about 2 hours away). I got a hold of the doctor about 30 minutes later, after discussing Ali's head with Ava's former nurse who is now a nurse practitioner and lives near Batavia. The doctor said not to worry that they only put staples in when the bleeding won't stop. The bleeding has mostly stopped but we stopped at Ava's former nurse's house to see what she thought. She thought it wasn't really big, so there was nothing we could do but let it heal. I am so praying for the girls to stay healthy... Thank goodness God has been helping to keep me sane.

Praying for Ava to breastfeed well...

Day 190 - The day Mama has been waiting for...

Ava's gas was 53. That's really good for her. At 11 am, we put Ava in my arms and she tried to breast feed. We were very patient and she was very calm, and not really hungry. She didn't have the greatest latch on, but she did really well and I believe she was able to get some milk and not choke. We are going to try tomorrow again and the speech therapist was really impressed. I am floating on air and can hardly believe that it finally happened. Praise God! But what is really great, is I have been telling all the doctors and nurses for months now, that I feel that God has given me the sense that she can nurse and will want to nurse. Now, that has come to fruition and it really shows how God can guide us and has used Ava and myself to show them to believe. This may also help another baby and mama in the future as well, since this is the first time a baby like Ava has done this. I hope that Ava can continue to do well, and shock them even more! Her nurse tonight even said that she acts like a normal baby developmentally. She also smiled an "official" smile today. Wow! What a day!

Praying for Ava to be a nurse well and grow healthy lungs...

Day 189 - 27 Weeks Old!

Ava's gas was 71 and her Base Excess was 9 this morning. Yesterday it was 12, so that is a little high. She has been sleeping during the night again and seems to be pretty happy during the day. I held her for a while and she eventually fell asleep.

I am now running low on breast milk since she eats 110 ml a day, and I probably make that in two days. Our freezer also defrosted and I had to throw out about 10 containers of milk because you can use defrosted, then refrozen milk. The immunities I give her are so important to her, and good nutrition is how she has gotten this far. So I am hoping that tomorrow I can breast feed and it will probably help me make more milk. I would not be a happy mama if she can't have enough milk from me.

Praying for her to breast feed tomorrow...