Day 372

Ava had a good night. She had her typical upset morning and when she awoke this afternoon she had a little snit again, but nothing too dramatic. All of which coincides with her having gas or to poop. She is up to 39 ml of food. GI took a look at her today as well. Her CO2 was 65.

I talked to another Mom of a critical care child and she put some fear into me about taking Ava home. She said that car rides are scary and that her son's first one wasn't good because he turned grey on the way home and they were only 15 minutes away. We have a 45 minute drive. But there is nothing we can do but take our beloved daughter home and continue to fight with her to get those lungs to grow. God has protected her and he will continue to do so. We are also getting trained as much as possible. It's frightening to not know what your life will be like in less than 3 weeks and how it will affect five people as well as my parents.

Ava weighs 7.30 kg = 16.09 pounds, length 66.5 cm = 26.18", head circumference 42.5 cm = 16.73".

Thanking God for protecting Ava and praying for strength and great nursing for Ava...

Day 371

Ava had her typical rough morning but fell asleep and was better. Gas still seems to bother her. I tried to put her in her stroller but she wasn't feeling great because of the gas so we put her back into bed. She had a little fit when I was there when she woke up, but it was completely easy to handle. She was still a little fussy tonight but hopefully she will sleep well.

Thanking God for Ava's strength and praying that we have wisdom and knowledge...

Day 370

Ava had a great day. Anthony came in and stayed all day. Ava only had one upset moment very early in the morning, but was happy all day. She kept signing "mommy" all day long especially when they would say "When is mommy coming?" and she would immediately sign "mommy". Check out the video of her doing it.

I worked on her room today and we got it close to being ready. I still need to buy some storage containers for her medical supplies and put her crib together. I got her diaper bag that I searched all over for - one with lots of pockets - ready for Ava's trips.

Thanking God for Ava's intelligence and praying for Ava's lungs to grow strong with no need for a vent/trach...

Day 369

Ava had a good night with only one desat. She also had a great day and we even got some of her equipment in. She is going to have a consult with the GI department on Monday. She does sound a bit stuffy and we were able to get some boogies out of her nose. I really hope she isn't getting sick. I had to change her circuit (tubing) on her vent because there was moisture in it. It kept alarming so I was glad I got to see and experience that.

Ava fell asleep in my arms tonight and when I put her back in her crib, she didn't even wake up. She did wake up about 15 minutes later and she was so happy to still see me there. I love it when she is feeling good and I can get all those smiles.

Thanking God for our precious Ava and praying that she is protected from sickness and her lungs grow stronger...

Day 368

Ava had a decent night last night. Just a couple of desats, but her nurse held off her miralax because she stooled so much during the day. She also had a good day as well. The only negative situation was that they didn't get her in to her upper GI until after 4pm. She went two days without any food during the day - from 4am until around 4pm. She even lost weight when she was weighed today. They told us she was going in later in the day yesterday and then early this morning but it never happened. The good news is her body digests normal and it doesn't seem to be any problems from her tummy down. Now, we just need to figure out her GJ drainage and see if she needs it, and what is going on when she is in pain at night. We did also see 4 teeth coming in all at the top.

We got approved for our vent training today and we will continue to be trained until she goes home. We will go on a test run with a stuffed bunny all the way to the car with Ava's real equipment to go over any possible happenings.

Ava weighs 7.28 kg = 16.05 pounds.

Thanking God for Ava's patience and strength and praying for us to figure out what pains her...

Day 367

Ava had a horrible night with me. She desatted at least 15 times where I had to bag her O2 back in just to keep her calm. It went from every hour down to every 15 minutes she was having a fit. She stooled FIVE times last night and she would scream in pain. I felt so bad for Ava and I would ask the nurse to get her Tylenol and Motrin if it was time. I did take care of her all night and she won't be like this at home. If she was, I would be bringing her into the hospital. So, I am pretty pleased that I could handle it, and she's still around to smile. ;)

We took Ava to get her GI x-rayed this morning, but unfortunately, after a long wait, they only scanned her lower GI. They are going to scan the upper tomorrow. The lower GI did look fine. During the beginning, Ava was so happy and kept smiling at me and loved it when I sang "Old McDonald" and a cow. She actually laughed (I would probably too if I saw someone like me singing it.)

She took a short morning nap and had a couple fits in the afternoon. Afterwards, she slept for a few hours and woke up happy. Hopefully, she only had a bug and it's through her. Please pray that she turns around and is a happy baby and can come home on the 21st. We had VNA come by today to assess our home that it is suitable for her to come home to and we approved for that. Now we just need Ava ready.

Thanking God for Ava's ability to smile even on a hard day, and praying for Ava to have peace and for all of us to have wisdom and knowledge...

Day 366

Ava had a rough night again with a couple of her O2 desats. Her day wasn't much better especially with not having any of her primary nurses. Because her O2 saturations drop, some nurses are afraid to get her up and move her around. I came in and she smelled like a trach infection, so I had them get a trach culture and a urine culture as well. The blue bag we are supposed to use to bag the O2 back into her lungs wasn't even being used. I decided to stay the night and she slept from 8pm to midnight with only a couple of upset moments. Tomorrow we are going to get an Upper GI done to see how her tummy is working since we discussing whether or not to vent her G tube which comes from her tummy. She woke up twice with such bad gas pains and she stooled twice as well.

Ava weighs 7.46 kg = 16.45 pounds, 66.5 cm long = 26.18", head circumference: 40.5 cm = 15.95" (that went down so that probably isn't correct).

Thanking God for Ava's strength and praying that Ava will feel better and have relief from the pain...

Day 365 - Ava's 1st Birthday!

Ava had a rough night again. She slept very little starting from 7:30 pm until midnight, then up until 4 am, slept for a couple of hours and then back awake and very upset. She was pretty much upset all day. She even slept through her little party with the doctors and nurses at 2 pm. She did wake up a bit later and Alexandra and I gave her a little cake and she mushed it with her hands and put a bit in her mouth. She was very happy when we were there and she loves Ali reading to her and talking to her. We had our little party downstairs in the conference room. It was great to have a few people celebrate Ava's life but it was sad to not sing to her. We were able to come upstairs and see her play with her cake for a bit. She even did a couple of her "O" faces for everyone but she really didn't feel good. Please pray that Ava will feel better soon.

We have so much to be thankful for this past year. We are so blessed to have Ava and she has come so far. I am so glad that God has kept Ava with us and made her such a fighter. May she continue to bless the world with her joy and enthusiasm.

Thanking God for our year with Ava and praying for many more years to come...

Day 364 - 52 Weeks Old!

Ava slept last night until 1:45 am and then woke up with tummy pains for a couple of hours. She had 5 desats during the day. When I was in, I think I was able to stop them from going on. Two of those desats were when she was asleep and calm and we are not sure why. Her one primary wants to still change her feed down to 36ml, but now Ava must be getting used to it. Her color still seemed off today. Please pray that we have wisdom and knowledge.

We were able to take her down in the elevator to where we are going to have a small tiny party for her tomorrow. She did really well. We got to the sliding doors and they opened and she either got chilled a little and didn't like the wind, or she want to get out those doors. Either way, she started to cry, but I just acted silly and Ava was happy again. She was very happy the whole time I was there and slept for at least 2 hours after I left.

Thanking God for Ava's abilities and praying for Ava's tummy to be released of the gas and to end the desats...

Day 363 - A year ago today, I went into the hospital...

Ava had a good night. She woke up smiling but a big gassy as normal so the nurse gave her mylicon. I think that could help a lot if we gave that to her at 2am. I told the nurse to put her in her car seat or high chair since she was in bed all day long the day before. So the nurse did and Ava didn't like it but she eventually fell asleep. She awoke really upset in the car seat about an hour later. I came in and we were going to change the trach since it was a week. We changed it and there was a big hunk of gel like substance around the whole interior of the trach. Afterward, Ava was much happier, she went to sleep then woke up smiling. I think this is why she was a bit more fussy and her heart rate was higher the other day. I tried to tell them that especially when another primary said that she had a plugged trach the other week, but nobody would listen to me. Now I know, that I need to take charge and make them listen. Her stool was a bit loose as well so they are checking it to see if it is rotavirus. We haven't gotten the results back yet but that could be why her tummy is bothering her so much.

Today is Anthony's birthday and it is was a year ago today that we went into the hospital hoping that I could keep Ava in my tummy for at least a few weeks. I remember feeling guilty that I was going in on his birthday but now we know it was the best decision since Ava came two days later. I also got the two shots for Ava's lungs during that time. I am so grateful to God that he made that pathway available for us.

Thanking God for Ava's life and praying for her tummy to be healed...

Day 362

Ava had a rough morning. Her heart rate was in the 190s and she was calm and basically asleep. Her sats were 95 or above and they suctioned her, stopped her feeds and her heart rate still didn't come down. Eventually her heart rate went down and she fell asleep for a short time later in the morning. She had a couple of her fits so they checked her white blood cell count and it came back as 12, which is normal. Her nurse today wanted to end the feeds being stopped every four hours and just stop them every two, but after speaking with her a bit, she had the doctor split her feeds into 2 hour periods twice a day and we will try the 4 hours together maybe tomorrow. She is now on 42 ml of feed. We also back to venting her tummy to let out any gas. I don't think that the feed was the problem since the night nurse stopped the feed at 6:30am and it didn't change Ava's heart rate. She also decided to stool later in the morning.

The doctors wrote an order for speech therapy to continue with her tasting with her pacifier. We finally got that all figured out and they are looking into her qualifying and setting up early intervention at home.

Thanking God for Ava and praying for her to get rid of the acid reflux and gas problems and have peace...

Day 361 - An interesting day...

Ava an ok night and had her usual fits in the morning. They are stopping her feed for fours a day, from 8 am -12 pm. They also stopped venting her stomach when she is not eating and she did really well. She is up to 44 ml of food.

Ava now weighs 7.20 kg = 15.87 pounds. She went up a little bit.

So, now for the news. I am sure you are all waiting anxiously in suspense how the planning meeting went. The meeting went great. We actually have a tentative discharge date of February 21 (my Dad's birthday). Yeah! Praise God! We have lots of things to do to get ready for her to come home. We need our back up support trained, both Anthony and I have to each (separately) spend at least one 12 hour shift with her as well as getting time with her as much as possible. We also need to completely set up her room, get in touch with VNA and have all of her check up appointments set up for after discharge. Very exciting but it will keep us very busy.

Thanking God for Ava to come home and praying for Ava's health and for her to have peace without anymore fits...

Day 360

Ava woke up today with her typical snit fit but had a great day overall. Played with occupational and physical therapy and I basically heard she was a real ham. She keeps track of me when I am there. She fell asleep at 8pm.

Tomorrow is our discharge planning meeting. I am really hoping we are not going to be surprised by being told again that she is not coming home for numerous months. Many people will be in there including our three backups: my mom, Anthony's mom, and our good friend Becky. I do know there are a quite a few things that we need to get done before she comes home. We did get her handicapped parking permit today, and sent letters out to the gas, electric and phone companies letting that know that we have need to be on a priority list in case of problems.

Thanking God for Ava's growth, and praying that we all have wisdom and strength and for miraculous intervention from God...

Day 359

Ava was up on and off through the night. Not really upset but just some times of restlessness. She did have a great day and we got our discharge planning meeting set for Thursday. We did hear that the nursing agency does have some nurses for Ava. Please pray that the meeting goes well, with no surprises (unlike the other meetings).

Thanking God for Ava's abilities and praying that Ava has peace and no fits...

Day 358 - One Week Until Ava's birthday...

Ava had a good night but her gas when they were getting her other blood tests was 81. Her next gas was 67. She had a great day and fell asleep in my arms for a while today. She always wakes up a bit cranky. Probably because she doesn't want to be woken up. But I can always handle it by suctioning her, making sure there is no water in her vent tubing, and putting Sesame Street on. I actually heard from the discharge planner that it would be 4 weeks. We'll see, but we are getting ready.

Thanking God for the gift of Ava and praying that Ava's CO2 goes down...

Day 357 - 51 Weeks Old!

Ava had a great night and slept from 8:30 pm until 7:30 am. Her blood gas came back as 56 and that isn't much different from her 51. We had a great night but going that long without sleep is so hard. She has a nurse today that doesn't know Ava really well and she had a slight snit fit when she woke up at one point and she had to bag. I was able to control any angy wake-ups during the night, so I think I should be able to do it at home. We didn't even have to bag her during the night or increase her O2.

We only have two primaries this week since one is on vacation and the other took another patient. It should be an interesting week.

Thanking God for Ava's happiness and praying that she no longer has angry fits where she turns purple or blue...

Day 356

Ava had a great night. She got to ride around in her stroller through the PICU unit. I will also stay overnight with her to see how she is during the night. Hopefully she will sleep all the way through.

Thanking God for Ava's good nature and praying for all of us to have strength...

Day 355 - 10 Days Until Ava's First Birthday!

Ava had a great night and day again. Her gas was 51 since they gave her 18 breaths per minute (up from her 10 bpm before). We got the call today for a discharge planning meeting next week since there are quite a few things we need to get done before she gets home. For example, getting a handicap parking pass, notifying gas and electric and fire departments. She got in her car seat for the first time today and loved it! She slept in it for a couple of hours. We also met with the Lung Center respiratory specialist today who taught us more about the vent. She told us that Ava will tell us when she is ready to come home but I did hear rumors of 4-6 weeks. The head Lung Center respiratory therapist also told us that she loves Ava and that Ava is so smart, it's hysterical! Ava was moving her mouth to the Sesame Street characters sing-a-long while they were singing, and when they would talk, she would stop.

Ava weighs 7.31 kg =  16.12 pounds. She is actually 65 cm, not 75 cm =  25.6".

Tomorrow night I will stay with Ava overnight and see how she is through the night. I do feel confident that I can take care of Ava. It will be hard but God has given us the strength to get through what we have, and he will continue to give us the strength when we have Ava home. There is no other alternative but to have our baby home in the place where she belongs. Please pray that Ava does not continue to have snit fits or turn purple.

Thanking God for Ava and praying that Ava has peace and our family has strength...

Day 354

Ava had great night and an awesome day. She was so happy wiggling around and giggling. She was supposed to get weighed today but she didn't get that or bathed. That will not happen at home. The eye doctor was also supposed to come in today, but he decided that she didn't needed to be examined until she is home for a couple of months. "Home"! What a wonderful word! One of her doctors said she would be off service for a couple of weeks and maybe we won't see her again before we leave. Unbelievable! God is getting Ava ready to come home! Yeah! Please continue to pray for her health and protection from sickness.

Speech therapy came by and discontinued her oral stimulation because she is in transition on the vent. This was done by a different speech person than the person who had a great time with her the other day. Not sure why. Ava really liked it and now they are taking it away at a time where she is more stable than the day she had it done before.

Thanking God for Ava's progress and praying for protection around Ava...

Day 353

Ava had a good night and woke up around 2:30 am to 4:30 am playful and happy. Her blood gas was 60. It went down which is good. She had no snit fits today so it seems as if we are the right road. Speech therapy came by and played with her. They also gave her pacifier dips in breast milk for her to taste and get used to tastings. Tomorrow is weighing day, hopefully she grew a little more as well and we can continue to head towards home.

Thanking God for Ava's progress and praying that she no longer needs a vent or a trach...

Day 352

 Ava woke up around 4 times during the night, but she didn't know the nurse very well. The nurse also only needed to pat her back to sleep. She had her rough typical morning but recovered and went to sleep in the early morning/afternoon. Her CO2 gas came in at 70 at 4 am and they got another one at 6 am and it was 63. Lung center seems to be pretty happy with her. She slept for a while and I got in and played with her and she had NO fits all afternoon and evening. Her respiratory rate was only in the 50s and in the 10s and 20s when she slept. She wasn't doing her belly breathing either. Her heart rate was a bit high in the 170s but went down in the 120s - 140s when she slept. She went to sleep around 7:15 pm and I'm hoping she sleeps all through the night without any fits and wakes up happy. If she is stable (and having no fits), we can start the clock to get her home. We can even stroll her around the PICU in her stroller and possibly bring her into a conference room for her birthday to have cake. I am very excited and encourage and hopefully her blood gasses will go back down to the 40s again.

Thanking God for Ava's growth and praying that she can become stable on the vent quickly and get home...

Day 351

Ava slept through the night but had a difficult morning for about and 45 minutes. The respiratory therapist from Lung Center came in and gave her the albuterol treatment and after about 5 minutes Ava's respiratory rate was better and she wasn't breathing with her belly. They decided to keep her on the vent. When I came in, Ava was much better. Her respiratory rate wasn't too high - in the 50s and she was happy when she woke up after hearing my voice. I cuddled her a bit, and then she woke up and had her little snit fit again. This time it was different though and much more controllable. I put her back in bed, played with her a bit and then put Sesame Street on and she went to sleep when I left around 7:30pm. We think part of her problems could have been that there was water in her vent tubing and it was making her rate higher and she also got a good night's rest.

Ava weighs more - 7.14 kg = 15.74 pounds, length - 75 cm = 29.53" (up from 64.5 last week, must have had a growth spurt, head circumference - 41.5 = 16.34".

Thanking God for Ava's growth and praying that those sacs in Ava's lungs grow and grow...

Day 350 - 50 Weeks Old!

Ava had a rough night again. She didn't desat past 88 but she was fussy and couldn't get comfortable. She also had a few snit fits again during the day. The doctor didn't want to take her off the home vent (LTV) because she wants to see if Ava is going to get used to the vent. Ava was still breathing with her belly when I came in although she didn't have any fits this afternoon. Her heart rate was in the 180s at times and her respiratory rate went from 50s to 70s. They did get a blood gas and that came back good at 57. They also got a sample of blood to make sure she isn't coming down with an infection. She has been so tired since she hasn't been sleeping through the night. They also put an IV in her hand to draw the blood so that could be bothering her too. She keeps trying to eat it. She had two fits while I was there tonight but she is easily able to get out of them with giving her more O2 and putting the bag on her trach. Personally I don't even think they need to put the bag on, but these aren't nurses that normally have Ava. So because we changed her food and trach on the same week as the home vent, it could mean any one of those things are bothering her. Lung center will have to come in and figure it out tomorrow. I think that she may need to be tweeked in her vent settings. I also haven't gotten a smile out of her since yesterday.

Thanking God for Ava and praying that she can stop having fits and be able to breathe on her own...

Day 349

Ava had a good night and only woke up once when she needed to be suctioned and then she went back to sleep. Her morning and later afternoon however were kind of hard. She kept having her snit fits. But was able to come out of them quite well after we went up with her O2. I even got her to stop getting upset when one stopped because she was gagging from her pacifier and I patted her and sang to her and she got better and finally noticed it was her mommy.

We moved her room to the corner because it seems to have more space.

Thanking God for Ava's strength and praying that she doesn't have to be in the hospital much longer...

Day 348

Ava didn't sleep well last night so her morning nurse (who we love) got the doctors to change her formula to one without fiber. She also turned off her feed and it seemed to calm her, so then they changed it. They put her back on the home vent and she was breathing fast when she was awake in the 60s-80s. When she slept she would be breathing normal in the teens to 20s. Later in the day, they changed her feed to one that is partially broken down. We think she has a lot of gas and that is what is causing her problems. Please pray that her tummy can get stronger, the gas pains go away and she no longer has acid reflux. She also has quite a bit of irritation around her GJ site (where she gets her food through). That is probably bothering her as well.

I was able to hold her tonight and she fell asleep in my lap and I was able to put her to bed without waking up. (I did do it, Brooke ;) )

Thanking God for Ava's strength and praying that Ava's tummy and body would be healed...

Day 347

Ava had a good night but she did have her normal morning snit fit. They put her on the home vent later in the afternoon and she was upset and need her albuterol treatment so they took her off. She would even throw her toys around when Lung Center came by her. They came back a bit later and put her back on the home vent (LTV), and she was good for a while. Then her vent would alarm because of high pressure so they decided to take her off over night and try again tomorrow.

While I was there tonight she got very upset after I picked her up, she decided to turn red then purple on me and there was no calming her until we put the O2 bag on her. I picked her up again and she did the same thing. I tried to calm her by singing to her and rocking her but nothing would help except the bag on her trach. I thought maybe her mama being able to be there would help, but it didn't. I don't like her turning purple. I was hoping that she would be better by now than to have this happen. She did used to turn grey though and even a bagging her wouldn't help right away, so I guess it is an improvement. We touched her tummy afterwards and she would scream in pain. So we think it may be the new formula. Her tummy around her GJ tube looks irritated and sensitive as well. Our poor baby. But hopefully the vent will work tomorrow and we can get home.

Ava weighs more today - 6.92 = 15.26 pounds! Yeah! She is 15 pounds!

Thanking God for Ava's lungs and praying that the home vent will work until she doesn't need it...

Day 346

Ava had a rough morning where she coughed up some stomach acids and desatted again a little.She got better after wards and had a good day with occupational and physical therapy. Tomorrow they are hopefully going to put her on the home vent. I found out from the respiratory therapist from Lung Center that the vents aren't on back order. The vent is in a warehouse waiting for Ava to be ready and on the hospital vent for at least a week. Otherwise we would be paying for the vent and possibly not need it. Hopefully Ava's lungs will be able to handle the vent tomorrow and she will have a great night.

Thanking God for our baby Ava, and praying that Ava's lungs can handle the vent...

Day 345

Ava had an ok night. She tossed and turned a bit. Her nurse told me she was crabby most of the day. She was doing fine with O2 saturations, but it could be her tummy not being used to the new formula with added fiber. I think she is getting a tooth on top too so that might be hurting as well. Thankfully one of Ava's primary night nurse is on and she can figure it out. I came in and held her a bit and Ava acted as if she was so happy that we got there. She was tired too. Her lung center doctor didn't come by today either to tell us if he's putting her on the home vent. I did hear through the grapevine that a lung center respiratory therapist who puts the baby's on the vents was very impressed with Ava developmentally and thought she was very smart for a preemie. That's my girl!

Thanking God for Ava's progress and praying for the home vent this week...

Day 344

Ava had a great night and day. She gained weight and they changed her trach to a 5 and she was fine. They even got a gas of 40 after the trach change. She was making funny faces to everybody all day. She also showed physical and occupation therapy some new tricks like grabbing her toes and grabbing more than one toy. Ava is also now eating big girl food - Pediacare along with whatever breast milk I provide. They are hopefully going to try the home vent at the end of the week. I am thinking she probably won't be home in time for her 1st birthday so I should plan on doing something for her in the hospital. I really don't know what yet though.

Ava now weighs 6.7 kg = 14.77 pounds, and she is 64.5 cm = 25.39" in length and her head circumference is 41 cm = 16.14".

Thanking God for Ava's progress and praying for Ava to not need a trach and vent...

Day 343 - 49 Weeks Old!

Ava slept through the night but when she woke up this morning and her O2 saturations were hovering in the high 80s again so they upped her O2 to 30% again after she was down to 27% yesterday. After 8am she was fine, but she was tugging on her GJ tube and she hasn't pooped since yesterday. I came in again this afternoon and I read to her and then she fell asleep on me (sitting upright and laying against my chest) for over 2 and half hours! She must love sleeping on me, she was even smiling in her sleep. I can't wait to give her that every day.

Tomorrow she gets weighed again - she feels heavier and she gets her blood gas and hopefully the trach change to a 5 or no trach change AND then the home vent. Please pray that the vent is in. We really want her home for her birthday. My daughter Alexandra keeps begging me to go on a date with her and to stay with her. I feel bad leaving her, and she needs her mama too.

Thanking God for Ava's progress because we are so blessed and praying for Ava to get home to us this month...

Day 342 - New Year's Day

Ava had a great night and a great day. I got to go in a hold her for at least 3 hours straight today till I was numb. She even slept twice in my arms during that time. Ava is such a good baby and God has definitely given us a miracle. Our nurse tonight told me that Ava has such a loving nature because her family is that way. Ava loves to touch peoples hands and smile at them and I love how her nurse said it's because of us.

We are so thankful to God for the gift he has given to us with Ava. The joy we have experienced with Ava has been unbelievable. I know God spared Ava from a life that we would never want her to have and that we see almost on a daily basis. And only God can be the reason why Ava is still here with us and to be doing so well both physically and mentally.

Thanking God for Ava's amazing journey and praying for the miracle of Ava breathing on her own in 2011...