Day 460

She had a good night but did get gassy around 12:05 am. Very crazy that its the same time. We had a pretty good day but she was in pain again off and on. I wonder if it's giving her G juices back. Are we going to fast? I think I will cut that out for tonight and then call the doctor in the morning. She does sound a little wheezy but it was better after her albuterol. Ariana got that way today when she was running around. It could be the change in seasons. We have no nurse tonight because our night nurse is sick and we don't have a back up. So I am up until probably 4 and Anthony will take the rest. Thank goodness for my handsome hubby. ;)

I am nervous that I might have to give CPR tonight. Those pains are so unbelievable for her. Please pray that it doesn't happen. 2 hours from now, we will know. ;)

Please pray for us to have wisdom and knowledege and discernment... oh and of course energy...

Day 459

We made it through the night and she was great. We had a new nurse to learn the ropes last night and she is on tonight. Hopefully everything will go smoothly. We had a pretty good day. Ava did get fussy later but I think it was because she was tired and because the site where her GJ is sore. It really has a lot of granulation and the doctor from the hospital didn't look at it the day before we left. Our pediatrician also spoke with Dr. Rossi and Rossi said he can't accept any new patients right now. So now the ped is going to speak with some doctors in Syracuse that Rossi referred him too. He also said that we should not be dumping her gastric juices out but giving them back to her in her J, so that is the new thing we need to do. It will cause her more problems if she doesn't have them including her body making more. Oh the trouble this has caused... Otherwise Ava seems to be happy here, loves mommy holding her and her sissies LOVE to play with her.

Thanking God for Ava being home and praying for significant healing...

Day 458

Ava had a good night, and kept the nurse running to fix the vent back on. We came and got Ava around noon and got her home around 2 pm. It was a great time and she was very happy. Very relaxed and had no problems during the day at all. We gave her a bath and had all the kids in bed by 8:30 pm.

Who knows what will happen tonight? Only God knows...

Thanking God for Ava being home and praying for a great night...

Day 457

Ava slept good and had a great day. Tomorrow we should be going home, not sure what time. We are excited to bring her ho, but of course nervous. I really hope she doesn't (or hasn't) gotten anything from the hospital. Please pray for protection.

Ava weighs 9.3 kg = 20.5 and Ava's height is 65.5 cm = 25.78". (I think the length is wrong because it's less than the time before).

Thanking God for Ava's life and praying for strength...

Day 456

Ava had a great night. I stayed all night and she slept wonderfully. Even after her vent kept popping off when she would stretch, she would go back to sleep. I spoke with cardiology who told me that her heart rate dropping was a vagal response and there is nothing we can do to stop it. She will hopefully outgrow it. We should just maybe start bagging a bit earlier. Ava also got her IVIG (immunoglobins) this afternoon so she will have a good boost for her immune system. I also need to call and reschedule all of her doctor appointments.

I am still dealing with the whole gastric juices being drained and the rumors that we aren't doing what we were supposed to be doing at home. Ava did have rotavirus and she was set to vent months before going home (of course if some of her nurses were putting her to drain and not telling us, there isn't much consistency). I'm also working with the discharge planner on that floor to come up with something to drain Ava's gastric juices into something that VNA can provide for us and not be spilled. She told me that they don't see kids discharged with gastric juices draining and that is why they don't have any materials to help with it. She also told me that she was going to let the doctors know that I don't want to do it and I said no, I'm not trying to mess with it, especially with Lung Centers instructions. It does concern me that this is such an issue and why would we be doing it with Ava and no other child has it done when they go home? It is disgusting and not clean to let tummy acid drain out and get all over the place. It dumps every day at the hospital.

The pediatrician is speaking with the doctor out of Strong so we can get it figured out. I am utterly frustrated with the chaos, especially since Lung Center keeps lecturing me not to change anything about Ava's care. They perceive this to be the situation at home because of whatever they have been told by the prior nurses. I am having to do such damage control and it's so stressful. I really wish people would realize the problems they create before speaking, especially without having concrete evidence.

Thanking God for a good night and praying that her tummy situation is figured out and that Ava can stay home with no problems...

Day 455

Ava had an excellent night and Anthony went in early am to get Ava situated for her move. She moved around noon today and I came in early afternoon. I am spending the whole rest of the day with her and night and hoping to talk with all the docs to get things situated before we go home on Thursday. We need to get blood tests and then they will give her the IVIG (immunoglobins) tomorrow.

Thanking God for Ava's strength and praying for discernment...

Day 455 - Easter Sunday

 Ava slept through the night and had a great day. I did give her a chocolate egg in her mesh feeding bag and she loved tasting it.

Tomorrow we go upstairs and we can hopefully get her home on Thursday. Her Mickey from her GJ looked terrible today. It looked as if the inside lining of her tummy is pushing up. There are quite a few things I need to check on this week before we go home.

Thanking God for Ava and praying for continued protection around our family...

Day 454

Ava had a good day. She still had loose stool but she was very happy and Ali even came in to play with her. Ava loves to play with Alexandra.

Thanking God for the gift of my girls and praying for the health of our family...

Day 453

Ava had a great night and slept all the way through. She did manage to pull her trach out and scare everyone right when I walked in. BUT the good news from the nurse is, that she didn't see Ava desat and the trach must have been out for about two minutes. She saw her stay at 98% saturation. That's really good. Please keep praying those air sacs are growing and it's almost like we can see growth. Thank goodness because she is over 1 now. She is able to practically sit up on her own and she loves to play peek-a-boo with mommy. I say "Where's mommy?" and she looks for me and smiles. I can't wait to show her off to Early intervention who helps us with physical and occupational therapy.

Thanking God for Ava's growth and strength and praying that she never drops her heart rate again and we have lots of fun and joy at home (and that the 8th floor can handle it if she pulls out her trach)...

Day 452

Ava had a good night. She stooled only twice today and it was very gross. I am trying to move or get the doctors that were supposed to see her the next two weeks at the hospital to see her and give her the IVIG (immunoglobins) before we go home on Thursday.

I think she was sad to see my leave tonight or she hated me putting her down after she was asleep. Either way, I don't like her being away from our home, but I am definitely scared. I know God should give me peace but we have already experienced two times of doing CPR on Ava at home. I guess I should have peace cause it's not her time yet, but who knows when that is going to happen. God give us strength. I am really blessed to have my wonderful husband and patient girls. They are such gifts from God.

Thanking God for my family and praying for Ava to come home and stay until she gets married and has a family...

Day 451

Ava was up at 4:30 am again having fun with her nurse. She had a couple more loose stools and is still gagging and spitting up a bit, but not spitting up like she was at home.

We had our meeting today and it was decided to move Ava on Monday to an upper floor where she would be outside the nurses station and if all goes well, we can leave on Thursday to come home. I wanted to have her moved tomorrow but because everyone is off and this decision obviously can't be dictated by her family, we have to wait until Monday. They said that it would not be a good idea to have her home on Easter. Another holiday without Ava, and now we have to figure out how to work another important holiday while going to the hospital. Can you hear the tone of how tired I am of the situation? ;) I actually woke up last night screaming "Ava's not breathing". Then because of the lightening, I woke up saying "The power is out. We have to get her back up batteries." I actually wake up upset not knowing where Ava is, kind of like when you don't know what day it is. Please God give me more strength (and sanity; although I probably lost that long ago...lol)

Thanking God for Ava's strength and praying for peace...

Day 450

Ava is still stooling quite a bit. She is happy most of the time except when she is stooling. Most of the time she is partying, moving around, pulling cords and she does this new thing like she's a fish flopping around. She's not in pain, but I think she realized that she can use her back. I actually had her sitting up by herself for a couple of seconds.

I am meeting with Ava's ICU doctor and Lung Center doctor tomorrow at 2:30 pm. Tony will be on an airplane, so it will be by myself. They want us to stay with Ava on one of the upper floors for  5-7 days or less. I'm not so sure about it because Ava really needs someone to pop her vent back on quickly and these are actual rooms where you might not be able to hear the vent alarming. Our other concern is that there is more illness up there. Please pray that I and the doctors have discernment.

Thanking God for Ava's smiles and praying for her to come home and for her never to drop her heart rate again...

Day 449 - Ava has Rotavirus

Breaking news - Ava has Rotavirus, more details later. They finally found it in her stool.

So this could be the reason for her pains, spitting up, vomiting etc. but it usually only last up to 8 days of diarrhea and I just read that it can have vomiting before which is what she started doing right on Wednesday after we got home. I really hope this is why she dropped her heart rate. Anthony looked back on day Sunday, February 13th of this year and we found the following:
"We got a phone call at 1:30 am saying that Ava had to be resuscitated with chest compressions. This is the second time her heart rate dropped, but this time she had no pulse. Her heart rate and O2 saturations went to 0, so technically she was dead. Thankfully she was able to come up after chest compressions and being bagged. She popped off the vent and must have been crying. The nurse came over, not sure how long, and saw that her O2 saturations weren't registering on the monitor so she gave her an extra 100% of O2. The monitor showed 80s but then it decreased down to nothing while she was being bagged."

So just a couple of months ago the same thing happened in the hospital. It may not have been her being of the vent too long. It could just be that Ava being sick really messes up her body. I really hope that is the case and not us doing something wrong. But why did it just happen at home? The same reason it just so happened that one night in the hospital? Crazy... I wish she would just be healed.

I also found that out when a baby has Rotavirus they can also become lactose intolerant. See below:
"The symptoms of rotavirus infection include vomiting, diarrhea (frequent watery stools), and fever. This type of viral infection commonly causes damage to the lining of the small intestine. Because this is where the enzyme lactase is located, rotavirus infection often results in lactose intolerance. This type of lactose intolerance is transient or temporary, however, and when the lining of the intestine returns to normal within three to four weeks, the lactose intolerance usually goes away."

Is that why I felt like God was telling me to change the formula to Pediasure or just change the formula? Pediasure has more sugar in it and Peptomen says it's lactose free but says that it has cow's milk and might not be safe for children with allergies. She did seem to be a bit better on it, but it wasn't long enough to know. Some of the staff in the hospital made me feel like I was crazy, and I have been praying for discernment, so maybe God was giving me knowledge... I may never know until I get to heaven, but at least I feel a bit more confident that not everything is exactly how a few people say it is.

I also spoke to the Lung Center doctor who actually spoke to me about the Bacteria overgrowth and probiotics. She had no idea that I spoke to the PICU doctor about it the day earlier. So she is going to put Ava on probiotics. We are still going to look into getting a GI doctor out of Strong, but maybe this means we don't have to be admitted there. Maybe Ava can get out soon if we feel safe? Then we can just make an appointment with the wonderful GI doctor we heard great things about. Otherwise we get whatever GI doctor is on service in Rochester and it may not be the "Great One". ;) Wouldn't it be great if Ava came home for Easter? Pray that it is so...

In other news, Ariana woke up at 5 am vomiting. I took her to the doctor who didn't think it was Rotavirus since she had the shot. She also is only vomiting. Please pray that the rest of us don't get it. Ariana is so sad that her sissy isn't home. I really hope our girls can continue to be strong through this.

Thanking God for finding one answer and praying for continued protection around our family and to get Ava home again...

Day 448

Anthony and I are sad today because a week from today is Easter, and Ava probably won't be home. Can our hearts possibly break more? When will this get easier? 448 days of hardship plus the pregnancy. Ava had a good day but we were recording what happened during the day. She did gag a few times, sometimes she spit up, she also desatted to 80. So it does still happen even when her "G" is to drain/gravity. It might not happen as much, that I don't know yet without documenting for sure, but we will find out. Unfortunately, the whole "G" situation has become an obsession for the staff and I still have seen Ava do the same things she did at home. I think what happened at home is still capable of happening. I spoke with the doctor about the Bacteria overgrowth and he made it sound like it's not real and he doesn't know much about it anyways. He doesn't want to do anything if we are just going to go to Strong.

We have requested to be transferred to Strong as soon as possible. Hopefully they will have a bed open this week so we can get seen by there GI department and get home. Hopefully it is a slight modification maybe with acid reflux and we can head home. Wouldn't it be grand if Ava got to come home for Easter? I might be dreaming... Please God help us...

Has anyone gone to Strong? Any good reviews? Google has quite a few bad reviews but it's not of the Children's Hospital.

Thanking God for Ava's healing and praying that we can have more strength and get Ava home...

Day 447

Ava had a great night and is still on Peptomen Junior and her "G" (tummy) is to gravity. The doctor said that she doesn't have a lot of juices coming out so we don't need to replace the electrolytes. She was still positive of fluids. She had a great day but she did spit up clear foamy stuff again out of her mouth and her "G" was down to gravity. It was the same spit up she had at home. We actually spoke to someone that is from the Oley Foundation that helps with questions for tube feeding and she told me that it sounded as if Ava had bacteria overgrowth. When I came in and spoke with Ava's nurse she had called a nutritionist that is formerly with Children's and she had told her the same thing. Very interesting! It wasn't a coincidence, it was God. If she just heard it from me, she might not have believed it. She did have 3-4 watery stools and they smelled even more foul than they normally do. We really need to figure out what's going on. It's interesting that two people that haven't even seen Ava can possibly diagnose this to be the problem and a team of people have not even thought of this. Her GJ site also does not look good it's being pulled on side from the hook up to drain her "G". The woman from the Oley foundation also said that they should be giving us Foley bags to drain her, not just a tube that can dump over. You can attach the Foley bags to her clothes or high chair etc.

Ava is on 39 mls 24 hours a day with no breaks.

Thanking God for Ava and praying that we can get her GI figured out quickly and easily...

Day 446

Ava had a great night and was put back on feeds today. The doctor decided to put her tummy to gravity and let her juices come out and then be thrown out. I am sure this was persuaded by the nurse since this doctor does not have much knowledge of Ava and does not pretend to know. We know how things work here. Her nurse also told me that if we are draining out her juices that we need to give her Pedialyte. So if we were draining her this whole time how she wanted, we should have been giving her Pedialyte? We never knew this to be the case??? The nurse also told our pediatrician that we were not putting her to gravity as if the hospital had decided that long ago, which is not the case. The doctors had decided before she went home originally to put her to vent and unfortunately this nurse was putting her to gravity when I was not there. We do follow the directions of the hospital prior to Ava coming home and I don't want our pediatrician to think that we do whatever we want. There was no consistency of care. Ava also spit up her bile when she was to gravity. Today, she still has clear foamy liquid coming out of her G.

When we came in tonight I found that she was put back on her Peptamen Junior without any knowledge of the change, even though I spoke to the nurse numerous times throughout the day. Ava also had no tests done on her because they were too busy to order the Isotope for the test. The unit was not full, but instead Ava sat around all day without anything being done about why she was back in. She also hadn't had a bath or had her trach ties changed since we did it the night we brought her in. When I came in tonight, I washed her and changed her trach ties or it wouldn't have happened again. She fell asleep pretty much immediately after I was done. Once we found out her feed was changed again and she sat around all day, Anthony called Strong Hospital and was told we could transfer her as soon as they had a bed. We were told people all over the world come to Strong. We also found out that our insurance would be in-network so we could go there. Children's wants to have a care conference with us sometime next week. I also spoke with Lung Center today and of course they are bringing up the venting versus gravity. Unfortunately I think this nurse has skewed their minds as to what could be causing this and why does Ava have so much tummy secretions and why would this cause her to stop breathing. Is it reflux, how severe is it and why does it happen at home and not in the hospital? She was many months in the hospital set to vent and not to gravity at night, and why would it happen at home when she has the same set up? So, the best situation is to leave and have a whole new team look at her GI since we wouldn't be able to get into Strong as an outpatient for a couple of weeks or months. It is not typical for a child with no previous GI problems to be put to gravity except for other reasons like I spoke about yesterday. It should not be decided by a nurse but a GI doctor. I don't believe either, that Ava had these GI issues until she came into the PICU but she also was only on breast milk. Anthony and I are the ones that are more vested in Ava than anyone and we want what is best for her. If it means to vent her to gravity, we will, but it must be decided by a GI doctor who has researched and studied Ava and specializes in Pediatric GI systems.

Thanking God for Ava and praying that we have discernment and figure out how to handle this...

Day 445 - Chest compressions again

At 12:05 am, Ava had horrible tummy pains and pooped. Then she gagged a little, stopped breathing and dropped her heart rate to zero again. I tried to suction her mouth out, but nothing came out. We were bagging her before her heart rate dropped. She looked as if she just gave up. After 30 seconds of CPR, we yelled at Ava and I clapped my hands and she startled and came back to life. She got her color back very quickly and was back to normal. She was even falling asleep in the nurse's arms. We transported her back to Children's and she was still spitting up clear foamy mucous out of her mouth. They stuck her twice to get an IV in and she was again asleep and happy.

Her nurse put her G (tummy) to gravity and was letting her juices drain out and she had no spit ups. She wasn't being fed to give her tummy a rest. We wanted to re-create the home environment as well as the doctors had decided to leave her just to vent (not to drain out her tummy), so the G was back to vent when we left. We want someone (meaning a GI doctor) to decide which way she should be. I have not found any child that has a GJ or even just a G set to drain out their tummy juices either from other nurses, critically care families or on the boards on the internet. Except for other reasons like bolus feeds, medications or surgeries. So we have no idea what the answer is. Lung Center wants to order a "Scinta scan" to see how the acid reflux moves, so hopefully if the isotope is in, we will do that tomorrow. It's kind of sad that a GI department in a well known hospital is so poor that the Lung Center has to work on GI problems. They also seem to be acting as if this is our fault since it's not happening in the hospital. Her nurse even asked us if we (the nurses and myself) turned the O2 on when we were bagging her. It also wasn't asked in a non-insulting way, like "this may be a silly question...". I wish this was something we did wrong because then we can say that is why and never do it again. We have also noticed that her breath rate is very low when she is sleeping - in the teens.

Thanking God that Ava is still here and praying that we can figure this out and get her back home...

Day 444 - Home again!

Ava had a great blood gas today - it was 40! Better than we left the first time. She slept great last night. No pains and she is back on her full feeds. We got her clearance to come back home. We went and got her and brought her back home about 3 pm. She seemed to be much happier this time around and I really know what makes her smile. She was so happy being home.

She did spit up a couple of times when she gagged. We also saw blood in her mouth tonight but I believe it is from her mouth whether she bit her tongue or it's her molars. She was asleep and she started gagging and spit up a lot of clear white junk. I really believe this is what happened. She definitely choked the other night. I definitely need to teach the nurses on what to do if that happens. I have mouth suctioners to suction out her mouth.

Thanking God for Ava being home again and praying for peace and protection around our family...

Day 443

Ava slept all night very soundly. She had a couple of desats, but overall came back up on her own or had to be suctioned. Ava had her radiology test this morning, which I didn't make it to the hospital in time for. They did see the barium go into her tummy and out her intestine just fine. They also saw her reflux the Barium but the GI doctor wasn't concerned. She said all babies have acid reflux and she is on the right dose of Prevacid. We called Dr. Rossi's office out of Rochester to get a second opinion because it is very bad if Ava refluxes into her lungs. Her feeds were started back up to 10 ml per hour, and every 2 hours, they went up 10 mls. We should be up to full feeds at this point. We also changed her formula to Pediasure which is lactose-free and not 100% whey. Anthony does not tolerate whey and I was allergic to dairy products as a child so hopefully this will help with some of her gas pains she gets at night. She still has diarrhea stools but hopefully that is only the barium coming out. Her abdomen measured fine and none of her tests came back positive for a tummy bug. But GI does think she did have some sort of tummy bug. We still have no idea where the blood came from or why she exactly turned blue on Sunday morn.

I also spoke with her cardiology doctor about her heart rate being lower and he said that it was normal after a traumatic event. He also said that he has seen this happen before, we are not doing a bad job, and we can get through this. The PICU doctor said today that if Ava's well through the night, we can go home tomorrow. Please pray for that to happen and we can stay home for good now with NO chest compressions.

Thanking God for Ava being better and praying for peace and discernment...

Day 442

Ava had a good night and didn't seem to be in any pain. Her heart rate did go down in the 60s and 70s (normally in the 90s - 100s) when she was asleep and her heart rate when awake was only in the 120s (normally in the 140s - 150s). I was concerned about it so I had them do and EKG and it came back normal. GI came by finally around 4:30 pm and said that we should do a scan of her digesting barium which will hopefully happen tomorrow morning.They will also measure her tummy to see if it's abnormal. She got a couple of diarrhea times so they think she might have had some kind of tummy bug, so they took tests on her stool. She didn't get fed today, but hopefully will tomorrow.

A theory as to where the blood came from is there is a bump on her tongue. Did she possibly bit her tongue and the blood sat in the back of her throat? Did she have a seizure and bite her tongue?  I am not so sure we will ever find out.

Thanking God for Ava being here and praying that we can get her better...

Day 441 - 3 rounds of chest compressions

So probably 5 minutes after I wrote the blog last night, and after 12:30 am, Ava started choking, had blood coming out of her mouth, and turned blue and stiff. I felt the life go right out of her and up my arms. She had blood oozing out of her mouth just like a horror movie. The consistency was like tylenol. The nurse had to give her 3 rounds of chest compressions, at least 3 minutes before she was finally revived. I was on the phone with 911 and I screamed out "Please God help us" and I believe right afterwards she turned back into our pink baby.

I'm so tired right now, so I will write more tomorrow. We don't know what's wrong but Ava was fine afterwards and her lungs are great. She is happy and smiling.

Thanking God for letting us keep Ava and praying for peace and for Ava to come back home and never have this happen again...

Day 440 - 5th Day Home and the best day in at least 440 days...

I kept hearing alarms during the night so I thought Ava might be having a rough night, but I was pleasantly surprised to find her still asleep this morning. The nurse had only bagged her twice and she seemed more peaceful. She woke up and we put her in her bouncy chair, which she loved. She did spit up after I gave her the Prevacid in her "G", but she didn't desat and she was still happy. After getting ready I came in and she was still tired so I rocked her to sleep (love it!). I was thinking the gas pains had stopped and I called the doctor to tell him so. I also spoke to him about changing her feed and about the GJ possibly not letting all of her gastric juices through the intestine.We were very happy about how she was doing but I still wanted to see if the feeds could be the reason for the spit up or the GJ was. I do want to change the GJ to a G for not only to help her eat normally but to also not be afraid again that it has become detached. We figured we will see how the feeds might work next week. But then as soon as I thought things were better, she got very upset and was in terrible pain with cramps again. I hadn't bagged her since 8 am and only the 2 times the night before. I called the doctors office back and the doctor I spoke to was already gone, so I left a message with another doctor. We talked about Ava's condition and he allowed us to see how she does on Pediasure (without the 30 cal). She still had gas but while her feeds were off and she had breast milk, Ava was such a joy to be with. We played, got her grabbing for toys and just being silly. She sat with us for lunch and munched on grapefruit for lunch from her feed bag. She didn't gag either. I gave her one of those toddler fruit puffs and she put it in her mouth and chewed a bit.She did gag a little on that but we stopped and she looked so tired after wards. She took a long nap but did wake up with gas pains and her G was vented. We gave her a bath and put her in bed and she was so tired from a great day with the family. She didn't spit up the rest of the day, even when she had Prevacid in her G.

Besides Ariana kissing Ava on the mouth and I having a heart attack fearful that she could give Ava something, it was the greatest day in a long time. Right now she is sleeping more soundly than any of the other prior days. This day was exactly (minus the gas pains) what I hoped Ava being home would be like. Praise God!

Thanking God for our family time and praying that we can grow Ava into the child that God wants her to be...

Day 439 - 4th Day Home

How do I start off describing today? I was so exhausted yesterday that I couldn't even write it. So I am now recapping it one day later. Ava had cramping pains all night and was being bagged multiple times. Her tummy was being vented this whole time and gas wasn't even escaping most of the time. I woke up to a phone call from surgery and she said that Ava's "J" might have become detached and possibly could have become detached and coiled up in her stomach, blocking her intestine. I got radiology's phone number and found out that we could come in that day without any appointment because they were not busy. I called our pediatrician got a referral (after it was sent to the wrong fax number) and we headed into Buffalo with our nurse. We had a pretty good ride and we only had to bag her once. At that time I noticed the bagging wasn't calming Ava, so I told her nurse to slow it down a bit to be like her breathing. We got her x-ray and it looked fine and it didn't look like she had a lot of gas either. When I put her on the table for the x-ray Ava looked at me with her big eyes and watched me walk out of the room. I knew then that she has gotten eyes only for mama. What I love about having a baby!

We waited a bit until the Pediatricians came back from lunch and I told them they had to see what we were dealing with and all the pain Ava was in. I still really feel like it was her food causing such pain. She had gas pains in the hospital too. We went to the pediatrician after Ava had a couple of fits and she was so happy there. Then the action happened and the doctors got to see it first hand. The doctor said that the nurses were bagging her too fast and hard and it was blowing air into her tummy. We went back to using the same feed and was trying to calm her without having to bag. The doctor did speak with feeding clinic who had no problem giving her regular Pediasure without the 30 cal which is hard to digest with the extra fiber. He wanted to wait until we had a handle on the current problem. We got her through the night with only bagging her two times. She did seem better though when she was getting the Pedialyte or breast milk. We just need to get her to baseline and possibly change the feed and/or GJ. Hopefully her gas pains will end AND she can stop spitting up. She didn't do it as much until she got the Peptomen Junior.

Thanking God for the wisdom of the doctors and praying for discernment on her gas pains and for the pains to end...

Day 438 - Oh what a day...

Ava had a crazy day. She pulled out her trach on the night nurse last night at 1 am. She spit up her Prevacid and possibly formula around 8 am. Her feeds were off between 9 am and 11:45 am and got breast milk for about an hour. After she got her breast milk, she got her formula and about 2 pm she spit up a few times and would be pulling at her stomach and she would cry in such pain. She pulled out the extension on her "G" and it started gushing bile and blood all over the place. I called the doctor because of it and he wasn't concerned but I did get her temperature and it was fine. She would then start cramping up and screaming in pain. I finally held her in my lap and patted her till she fell asleep. She woke up after an hour and was still in pain, but I patted her back to sleep and she slept for about 45 minutes more. She still woke up very upset and we took her upstairs to get washed up from spitting up so many times. She was very upset and would arch her back and at one point she arch it and fell back and hit her head on the changing table. She seems to be ok from it and I rocked her before putting her in bed. After that she was all smiles. Eventually she went to sleep but she woke up with horrific gas pains. She finally stooled but it continued on for about every 5 minutes. I gave her the nightly dose of Prevacid and she didn't spit anything up. Thankfully Ava's ICU night nurse was here to help and she saw that her pain was more extreme than what she had recently in the ICU. I decided to call the doctor and we thought it was the formula especially because she didn't have any problems when I put her breast milk in tonight. He gave us orders to start Pedialyte until morning when I can give her some breast milk. Then we will go to the doctors tomorrow and maybe try the Peptomen Junior back again. The Peptomen Junior could possibly be the whole problem she has been gassy this whole time but hopefully we can see what happens tonight.

Thanking God for strength and praying that we can figure out what is wrong with her belly...

Day 437

Today was a very interesting day. Ava spit up about 8 times today. At one point it looked like her food was coming out of her tummy and it's going into her intestines. She had a few moments where she was really mad and we had to keep bagging her. We thought it was her tummy but we had her vented and she stooled about 4 times today. We also suctioned and bagged. I finally got her calmed down and she fell asleep. It has been a pretty long day and we don't have nursing until 11 pm tonight. Hopefully we can get a little bit of sleep. I am sure it will get easier after Ava, ourselves and the nurses are adjusted. It should be interesting when we don't have any nursing on Saturday and Sunday during the day.

I have a cough and I really hope that I'm not getting sick again. Today was my birthday and what a gift it was to see Ava lying in her crib.

Thanking God for Ava being home and praying that it will get much easier...

Day 436 - And God fulfilled his promise to me today...

We brought our Angel Baby home at 11:30 am today. We got there at 9 am and after a minor issue with her one med we were on our way after 10. She was fine the whole ride home (45 minutes) and she fell asleep by the time we got home. She seems to be very happy. We tired her out and gave her a bath and put her to bed. She had some gas pains but we were able to handle it. The next thing to do is figure out her tummy situation and whether or not she can handle her tummy not being vented part of the day or just at night.

Thanks to one of Ava's primary day nurses who rode with us to and from the hospital. It made me feel a bit more confident. Here's what she wrote today and it just melts my heart:
"It is a huge huge day in the life of a little one that God has blessed my life with. She and her family have taught me more about faith, strength and endurance than they will ever know... Good luck little one, I know you will thrive surrounded by those who love you... I know it's not good bye, but I really am going to miss you. :)"

Ava's nurses that have loved her up at Sister's and Children's and the NICU and PICU - You know who you are. You have meant the world to Ava and to us. May God bless you all and thank you for all you have done for us. And also to Ava's doctors at Children's, who haven't given up and have the confidence in us to take her home, thank you. To our family, especially my wonderful parents who have babysat our love children for probably 400 of those days, and our friends who have listened to us, brought us food, gifts, babysat, called, cleaned our house, prayed and more; thank you. You all mean the world to us. You have all gotten your answers to your prayers. Keep praying that she can get off the vent and then we will celebrate again.

Thanking God for letting Ava come home and praying that she no longer needs a ventilator and her tummy is healed...

Day 435 - 1 more night...

Ava had a great night and her final blood gas before going home was 48! Woo-hoo! Really great! She discovered today that she can pull her vent off and get attention fast. All of her equipment is here now except for the extra portable O2 tank. I got the truck cleaned out and the house is cleaned. Tomorrow one of Ava's primary nurses is taking the ride to and from the hospital with us to help with the transition. We should be discharged around 10 am.

Ava weighs 9.02 kg = 19.89 pounds. Almost 20 lbs! Head circumference - 43.5 cm = 17.13".

Thanking God for Ava's growth and praying for a great trip home and for Ava to love being home...

Day 434 - 1 more day...

Ava had a great night and I got there at 7 am this morning to see how she is. She was a little grumpy but perked right up when she saw me and didn't want to go back to sleep. She fell asleep in my arms a little while later. She did spit up about three times for me today. I got her washed up and put her in her stroller all by myself in about 5 minutes and strolled her around the ICU. I stayed until 3 pm and feel much more confident. I think Ava really enjoys having her mommy there. After I left she watched the Sabres game. lol... Just like daddy.

Thanking God for Ava's growth and praying that Ava's tummy is healed and she stops spitting up...

Day 433 - 2 more days...

Ava had a good night and only spit up once this morning and once later tonight. Her tummy was vented lower than normal so that may have helped but not sure. We think she has another top molar coming in as well. I packed her up in her stroller and went around the ICU for the first time on her actual home vent.

We had some friends from our church come by today and help us organize a bit. Thank you to Debbie, Rick, Kelly and Becky for helping us. We really appreciate it!

Ava's journey doesn't end when she comes home, so don't worry. I will still post every day with updates. The main reason I keep this blog is for Ava (and our family) to always have a record of this time as well as keep everyone up-to-date. We hope you will continue with us on her journey and keep the prayers coming so we can get Ava off the home vent and help her become a normal, happy and healthy child of God.

Thanking God for his promise of Ava coming home and praying for great home nurses...

Day 432 - 3 more days...

Ava slept from 6:30 pm - 7 am. She had her morning spit up and got her IVIG (immunoglobins) through an IV today. She was a little groggy from it but had a great day. She did spit up a couple of more times as well. We need to get this figured out. She fell asleep on me tonight from about 6:30 pm until 8. She woke up kind of mad, but was able to settle her with bagging her, suctioning her, changing her and she went back to sleep until midnight.

I got her prescriptions today so that is another thing done but we were unable to walk Ava outside again since it wasn't very nice out. Guess her first time will be on Tuesday.

Thanking God for Ava's lung growth and praying that we can get her home on Tuesday...