Day 35 - 5 weeks old!

My baby has been having a great day. She was down to 37% O2 during the day and the night nurse (that has never had her) has put her up to 40%. That nurse hasn't even been on for 2 hours yet and she's upping her O2. This has me concerned because all these new nurses just up her O2 when she dips down in her saturation. Meanwhile the nurses that know her don't up her O2. She had a good blood gas this morning and afternoon, so they put her at an amplitude of 16.

We were unable to come in today because I was sick the night before. The first day I missed seeing Ava.

I am definitely concerned with the new nurses. Tomorrow she has a nurse that she hasn't had before. I bet that Ava's O2 will either be in the 40s or 50s tomorrow morning because of the nurse's fear of her "desatting". Hopefully we can get a meeting with whomever we are supposed to speak with.

Day 34 - 29 weeks

Ava's O2 setting is down to 47. It hasn't been down to that point in a long time. Her settings are: amplitude - 17 (up from 15), mean - 11. Her CO2 is up to 69 tonight but the doctor didn't change her settings because he figured it would change. The CO2 monitor on her ranged from 40s - 50s when I was in there today. She did lose 3ml of food after the last feeding, but they are only concerned if it is 5ml or more. If it is 5ml, then they will lower her calories to 24. Hopefully they won't have to. They are going to flip her in the incubator and weigh her at 3am.

Her nurse went on break today and the nurse that was watching over her saw that she was "desatting" in the 60s and she got nervous and was going to up her O2. Thankfully another nurse that knows Ava told her not to because she knew that Ava would go up again (which she did). This is what makes me nervous about the nurses that don't know how Ava is. They just increase her O2 and then it takes forever to go down.

We'll be praying for the same nurses and doctors... The doctor on-call today seemed more positive to the nurses because he hadn't seen her settings that low in awhile.

Day 33

It was a good day until this evening. She got a bit restless and agitated but she calmed down afterwards. She is on the 24 calorie additive in my milk. She did lose 10 grams again. Hopefully with the extra calories she can gain more weight. She was on the same amplitude and O2 as yesterday during the day (amplitude- 15, O2 - 62), but this evening her CO2 was in the 60s so they increased her amplitude to 17 and her O2 to 66. She was desatting (going down in the volume of O2 in her lungs) as they call it right when we came in so they wanted to increase her settings. I put my hands on her and she knew it was me and I got to hold her hand. She fell asleep and then her CO2 came down and she stop desatting, so they didn't increase anything.

I spoke to two moms today that have gone through the NICU and it was great talking to them. Thankfully Ava hasn't gone through any surgeries, she does have all her body parts and her heart is closed. We will praise God every day for her. AMEN! =)

Day 32 - One month and counting

Ava had a very good day sleeping. I was told by the nurse that slept for at least 6 hours. When I went to see her tonight, she was sleeping again. They got her O2 down to 52 tonight, but when we came in she was up to 62. Her O2 saturation was in the 70s and then it finally went up in the 80s when we left. What a rollercoaster... Her settings are still the same - amplitude - 15, mean - 11. Her CO2 was 52 tonight, so they kept all her settings the same. It's good, but if it goes in the 60s, they may have to make a change. Hopefully they can get her down more tomorrow since they are weaning her off of the steroids with lower doses. The doctor said to the nurse that the steroids should still help her settings go down.

My dear friend Connie had gotten me a contact for a neonatologist at Children's Hospital that could give me someone that has been in the same situation as we are. That doctor gave me a phone number of a woman who had twins at 24 weeks who would love to speak with me about what they went through. I can't wait to talk to her. They also said that they were working on getting a group together that could speak to Mom's and relate life in the NICU. I offered to help in the future, as soon as we get out of this situation.

One more day down, at least 68 more to go (give or take).

Day 31 - Happy 1 month Birthday Ava!

Today was a pretty good day for Ava. She got some calories added to my milk - only two, but it will help. The doctor said that they will add probably 4 tomorrow. Sometimes adding the calories can upset their stomachs, but she was fine with the 2. She did lose some more weight due to the steroids.

The amplitude on her vent is down to 15, which is good, but her O2 is still up in the 70s (room air is in the 20s). The mean is at 11. Her lungs still need so much help. When I was in today her saturation was in the 60s and 70s. It got me kinda sad today like we aren't going to get out of this situation. I spoke to the new doctor today that will be on for 3 weeks during the day. Talking to the doctors is pretty horrible. When the doctor spoke to me, he made me cry. The nurse says he always makes the mom's cry. It wasn't like he was mean, he is so negative. He listed all the reasons that Ava should have brain damage - all the MULTIPLE reasons. Today is an emotional day for me. I feel like my heart is breaking. I want to hold Ava so badly. The doctor said that he was going to keep her on the oscillator for awhile and not got to the ventilator. So, it looks like, A - we need a miracle to get her off that machine fast, or B - she will be on a c-pap (they just put those tubes in her nose with O2) which could be a long time. Trying to get answers out of the doctor is hard too. He told me that he was happy with today's progressions, but she still is on such high O2. He hopes that in a month she is off of the oscillator - what if she's not by then? I just need to remember Proverbs 3:5 - Trust in the LORD with all your heart and lean not on your own understanding. Today was really hard to do that. I probably just need some sleep. The other thing that happened that made me sad was that a girl that had her baby Sunday was able to come and hold her baby. It's hard having the smallest, and seems to be the only baby on the oscillator in the whole NICU, and being so in love with her.

Anthony is finally home today from being away since Monday. Hopefully the weather isn't bad and we can go see Ava tomorrow.

Happy Birthday Ava - I hope I can say that to you when you're 1!

Day 30

Today was the first 24 hours of Ava's steroids and also the first day of her full feed of 15ml. The steroids finally started taking effect this morning when her gas was in the 30s. The gas (CO2) is usually in the 50s and 60s. A good CO2 is between 40s and 60s. So that meant they needed to turn down her settings. She later got a gas in the 20s so they turned it down again. Tonight she had one in the 40s. They are taking her gas every hour right now to keep up with her change in settings on the oscillator. Yeah! Later tonight, her CO2 was in the 40s, so they adjusted the amplitude to 19. She hasn't been at that setting in awhile

I went in early this afternoon to see Ava. I was changing her diaper when her O2 saturation (which should be in the 80s and 90s) went down to 40. It scared me because her skin turned a grey color. She looked the color that ET did when he was dying. I did not like seeing her that way. She went back up in a bit and she was her lovely pink color. She is down today to 1lb 9oz. She lost 1 oz. but they are not concerned about it unless it happens frequently.

I watched the Duggars tonight (19 and counting), and basically everything they are going through (minus their baby's tummy troubles and not being able to eat) seem to be the same thing that we are going through. They are on 4 weeks and you can see their baby get an x-ray, just like Ava gets. Pretty much everything is the same, so if you watch the show, you can see a bit of what's going on for us.

Hoping for a great night and for the settings to go down dramatically... Tomorrow is exactly a month from her birth!

Day 29

Ava's brain scan was good. They couldn't find anything wrong. She is on 13ml of food. At 9:30pm she is on 14ml of food, and in the morning she will be on her full feed of 15ml. Thank you heavenly father! Unfortunately though, her O2 went up again this morning and her O2 saturation was low again this morning. The doctor decided to put her on steroids. She started getting them at 1:30pm and she will get them every 12 hours. I found out it is a very small amount. Hopefully by the morning, we will hear that her O2 and settings on the oscillator are going down.

I went in this evening to see Ava before her 6:30pm feeding and I got to put lotion on her and talk to her. They also took her PIC line out today so her arms are free. Free to move around - You can see her arms free in the picture. She looked pretty comfortable while I was there. Her CO2 gas was 56 which was down from 65 earlier that day.

So, we are praying for the steroids to not cause her harm and improve her lungs...

Day 28 - 4 weeks old!

Ava is 4 weeks old today - Praise God! She is up to 11ml of food, and is at 12ml of food at 9:30pm tonight. She also weighs 1 lb. 10oz. again. Her head went from 22cm to 23cm and her length is now 12.5, up from 11.5 inches at birth. Her saturation of O2 is not making the alarm go off that much. Her CO2 levels were at 36 this morning which means they turned down her amplitude (the pressure that the oscillator gives off on her lungs) to 23. Her CO2 was up to 66 tonight but they kept the settings the same with hopes she can make this jump.

The nurse told me that the doctor that comes in on Wednesday does not like using steroids. So if we make it to Wednesday without the steroids, then that doctor may not put her on them at all unless they are desperate and we can't get her off the oscillator. I didn't know that she can continue to grow off of that machine, I figured that she should be off of it by now. The nurse said that they just wait sometimes for kids to grow their lungs and get off of it. Either way, we have options and she's sustaining her life. Once she gets to her full feeds of 15ml, they will increase her calories. Sometimes that can affect their feeding and they can spit up their food, but hopefully with "amazing Ava" that won't be the problem.

Tomorrow is another big day with the brain sonogram. We should know how it was around 4pm. Keep prayin' and God will keep providin'.

Day 27

Today was good day for Ava. She was at 9.5ml of milk today, then at 9:30pm she went up to 10ml of food. They are all very excited to have her doing so well on her feedings. Her settings went down again today and she was at 60% O2. The nurse told me that the her alarms that go off when her settings are low, barely went off today. Her PIC line is probably going to come out tomorrow. That line goes up her arm to her heart and they won't need it anymore. The other good news is that the nurse that watches Ava has another baby in the room. Usually a nurse would just have Ava.

The nurse asked me tonight if I noticed how positive everyone was being about Ava. I said I had. I guess they decided to come over on my side. ;) She also told me that it will be so important to have Ali and Ari wash their hands when Ava gets home. They can also never kiss her on the lips. She told me that there is a medication that preemies can take that can limit their chances of getting RSV: Respiratory syncytial (sin-SISH-uhl) virus, or RSV, is a respiratory virus that infects the lungs and breathing passages. Most otherwise healthy people recover from RSV infection in 1 to 2 weeks. However, infection can be severe in some people, such as certain infants, young children, and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children under 1 year of age in the United States. This is what they are most concerned about Ava getting. IF Ava can get this drug, which cost $1,500 a dose, and most insurances fight about it, she will only have a 2% chance of getting RSV. The other thing I plan on doing for her to keep her from getting sick is to breast feed past her second winter and that will also limit sickness as well. We also can't let people touch her. Thank goodness the girls aren't in school either which will help our family limit sickness.

I put in a picture of Ali and Ari in Ava's incubator tonight so she can look at them. The girls were really excited to hear that.

The nurse practitioner told me that they are going to wait on the steroids as long as they can. I found out that they can even effect how she eats and how her stomach digests. When I left I said to the night nurse that she's protected by God. Amazing Ava is protected by God. AMEN!

Day 26

Today was the typical rollercoaster with the only good news being that she was up to 8.5ml of food today. As of tonight she is up to 9ml. They are going to increase her feeds to .5ml every 12 hours. Her full feed is 15ml, not the 12ml that I thought. That means it will be 6 days until that - next thursday.

Her O2 was up to 70 to 90% today. Her CO2 level was at 62, 65 most of the day until 6pm, it was at 82% CO2. That was really bad so they put her on her back, and she went down to 65%. They went up on her amplitude to 25.

The doctor spoke to us tonight about steroids again. He said he would like to put her on them now since she has not moved down on her settings for her lungs. He may do it tomorrow or soon after. They would like to get her at least until 30-35days but because she hasn't improved, he may have to do it sooner. He again warned of the risks like brain damage. But he said that if she had the steroids, her settings would go down in 24 hours. She could be off the oscillator by a week. If her blood pressure goes up (which is a side effect), than they would have to go down on the steroids and it may not work well. We are first praying that she can go down on her settings and if that doesn't work that the steroids work and she doesn't have brain damage and she her lungs have a complete transformation and she can be in room air (that would be an awesome miracle). We need her to be off the oscillator before it causes any damage and especially so she can go home.

The doctor also told me that the brain sonogram on Monday would just be a check to see if there is any immediate damage and that there still could be some major damage later that we would find out developmentally.

I did speak with the woman tonight who I spoke with a week or so ago, who was afraid of having the baby at 24 weeks. She did have her son and he is 1lb 7 oz. She also told me that our doctor told her to be as positive as I am being. I found that surprising since the doctor never says anything to me about how good it is for me to be positive. I did find that very encouraging.

Ava also opened her eyes more for me tonight and she held my finger. I can't wait for her to really see me.

Hoping for more miracles tomorrow... And longing to hold Ava.

Day 25

Today I got to go to my first meeting since having Ava. Afterward, I went to the hospital to see her. She was up to 7.5ml of food today. She does spit up a bit of it, which they call reflux, but the nurse said that typically happens to babies at the gestation age of 27-28 weeks. Ava was high up on her O2 in the 90s but her saturation was pretty good. They also had to go up on her amplitude as well, but her CO2 gas was stable at 62% CO2. Ava also had another blood transfusion which will hopefully make her stronger. They put the transfusion in her head again. I really liked the nurse today and I spoke to her about yesterday's nurse situation. I showed her how they moved Ava and she said that isn't how you should move her. She also said that it is my job to protect her and that is the only real thing I can do for her. I was able to change her teeny diaper and wash her up and bit and put lotion on her. I spoke to the doctor again, and he told me that most likely she will need steroids for her lungs at a month. I said that a month is next Wednesday. He couldn't believe it. He told me that one of the other docs start back on days again that day, so we'll be dealing with a new doctor. He also told me that steroids can really affect the brain and cause disabilities even when given during pregnancy. It usually happens when you have more than two doses. I thought that was interesting since I had never heard of that. I will have to look that up.

I did meet a really nice mom tonight who has a two pound daughter in the NICU. We talked quite a bit so that was nice. She also has two boys at home so she knows what we are going through.

I also brought home 3 of Ava's diapers - One for Ari, one for Ali and one as a keepsake for Ava. The girls hugged the diaper and took photos with it. So cute... I also got a few photos of Ava with her eyes open. She had her eyes open more than any time and the nurse said that was the only time that day that she was awake and her eyes open that long. Ava must love her mama! =)

I spoke to the nurse before her shift was over and asked her if she could also be one of Ava's primary nurse. She told me that another nurse had signed up to be her primary as well and that if we wanted her to be as well, she would. Now we should have three on days. Yeah!

I just called to check on Ava and she was doing much better tonight. Her O2 was in the 70s and her saturation most of the time is in the late 80s, early 90s with some 70s. She hasn't had any problems with her food so we should be going up tomorrow. So we're only about 4 days away from her full feed of 12ml which would be on Monday. Praise God!

Day 24 - Why do I have to deal with this? Seriously!

So, today started out as a good day. Ava didn't have our typical nurse, we had a new one that I hadn't met yet (I really wonder how many nurses there are). She told me that she was stable. I went in to see her tonight and she was on her back for the past 3 hours. She saturating (O2) at 90% or more. So, another nurse turned down her O2 setting. Her nurse really didn't want me to massage her with lotion because the probs couldn't stick on her. So I was only able to rub lotion on her knees, one leg, and one arm. At first Ava was saturating (O2) at 60 or so % and then it did go up to 80 or 90% when I was doing that for her which surprised the nurse because she kept saying how sensitive Ava's skin was. There was another nurse in the room who kept turning down or up her O2 setting which is called "chasing" her by our favorite nurse. She told me that just because she is a bit higher or lower you don't want to change her O2 setting because that is not good for her. I have pretty much learned a lot from this nurse or the other nurse in the 3+ weeks to know what is going on. Not that I could do their job, but that I know Ava and I understand what's going on. By that nurse "chasing" her it made a trigger go off in my head to watch this and to be a bit nervous. I was gone for a bit to pump and they took her gas during that time. I came back and the gas (CO2) was in the 60s, which they like to be in the 50s. So they again changed the settings up. I started to get concerned when her saturation was going down into the 40s and I said that she probably wanted to be on her stomach. I said that repeatedly. The one nurse kept moving Ava around rather sharply or jerky-like motions which made me upset and nervous. I had never seen anyone handle her that way before. Finally after being in the low 40s and 50s, that nurse says we should switch her to her back after they had suctioned her. Her nurse, knowing that her shift was almost over, looked up at the clock as if she didn't want to do it because she was almost done. The other nurse says she would do it, and then she rapidly moves Ava to her back (I asked if I should leave) in a jerky motion again, and I gasp. The one nurse asks me if I have seen her being moved. I said yes, and that I have helped before. I have never seen Ava being moved that carelessly. Then her saturation started to get better. The nurse kept telling myself and the other nurse to not watch the stats because a "watches pot never boils..." Her nurse comments that that Ava "has a reputation", whatever that means. I respond with "then she must uphold it." That comment really bothers me. Finally I leave after her stats get better. I was and am still quite shaken up by this. More than even last Thursday, when we thought we might lose her. I would never want to lose her because of a nurses judgement.

I was able to speak with the Doctor tonight. He told me that she is going to have her brain x-ray next week on the 22nd which is Monday. Thankfully, we don't have to worry anymore that there is blood on the brain (one thing down.) This brain x-ray will tell us if she has any disabilities - like cerebral palsy or any other major disability by seeing holes in the brain. Some disabilities may not be seen up to 2 years of age, but anything major from birth can be seen a month later. We REALLY need prayers that she will be perfect in every way and a testimony to God that her brain is perfect and an example of why not to end a pregnancy. The doctor also told me that if she doesn't get significantly better by a month to a month and a half that they will have to give her steroids. Steroids can injure brain growth and they don't like to give them until they are a month old. Thankfully she got better in the last week so she hasn't needed them. Praise God!

I spoke to the night nurse tonight and at first she wasn't too sympathetic to what happened earlier that evening with Ava. She acted as if I was overly dramatic, which I haven't been. Believe it or not nurses, I actually can understand what's going on. I am not pretending to do their job, but I understand the situation...

Oh what a night... And I wonder if I am the only one going through this???

Day 23

Today was a good day for Ava. She is up to 5.5 cc/ml of food. They are going to increase much more in the following days till she gets to 12 ml or whatever is according to her weight. She is now 1 lb. 10 oz., and increase of 1 oz in 2 days. That's pretty good. Her amplitude on her oscillator is down to 20 and her O2 is at 60. Her O2 has been lower but the settings are going lower so that is really good. Her chest xray showed improvement in her lungs, the first xray to show that. I didn't even know they could get better, but it's showing growth in her lungs. The nurse also changed the tape on her face to hold the breathing equipment because it was too tight - so her head is growing too. =)

I was able to put cream on her today and Ava's O2 saturation afterward was in the 90s. She loves her mama! Our favorite nurse is off until this weekend, so I am hoping the nurses will allow me to put cream on her the rest of the week. All the rest of my family is sick, Ali has an ear infection, Ari is just getting over hers, and Anthony is having asthma problems combined with whatever the girls have. I am still doing good (at least God is protecting me so I can see Ava.)

Another day closer to holding Ava...

Day 22

Ava had a pretty good day today. She is up to 4.5cc of food. She did have a rollercoaster of a morning. Up in her settings, down in her settings, a good gas result, a bad gas result. The doctor doesn't think the hole in her heart (it's called a PDA) has reopened. So that is good. They sedated her last night, but not today. She has been pretty relaxful. We came in late this afternoon and I was able to give her some lotion again for her dry skin. The nurse that we have on most days is so wonderful. She always lets me take care of her. I am even able to change her diaper. I told the nurse today that she's starting to get a booty. She laughed and said "What booty?". But there definitely was something there, that wasn't there before. The nurse also said that she would not stay on her back. She put her there for 45 minutes until Ava won, and the nurse put her back on her stomach. She's on 65% O2, down from 80%. Her saturation of O2 ranges from 70's to low 90s. They don't like that, but they say that's what such young preemies do.

Anthony and I thought we were starting to get sick tonight. I was concerned that I got too close to Ava and that she would get sick... Oh, all these worries. But I am feeling better now. Hopefully we stay healthy.

She looked bigger and her skin looked a beautiful color tonight. I can only imagine how beautiful she will look when we get her home.

Day 21 - Rollercoaster again

Ava is 3 weeks old and our little Valentine. She has had a rollercoaster of a day again. Her stats have been all over the place. She was getting more O2, then they went up on her oscillator and down on her O2. They think that her heart HASN'T opened again. Thank God for that. She is weighing 1lb 9oz. now give or take all the equipment in her bed. She is up to 3.5cc of food. She is off of the bilirubin light and now can be cuddled by her nip nap thing a bit more. We went to see her this afternoon and even with me holding her, her stats didn't get better. I am a nervous mama. It makes me so exhausted and tired. It's hard to keep this up. And as the nurses are constantly saying, we have a long way to go...

But in the meantime, Happy three week Birthday Ava and Happy Valentine's Day! We hope and pray you can have your first chocolate next year!

Day 20 - A Good Day

Today was a pretty good day for Ava. She slept and she is eating 2.5cc every three hours. She has never eaten that much before and she is keeping it down. She gets very fussy when she has a wet diaper. Now I see it and tell the nurses, and what do you know... she does have a wet or poopy diaper. They were able to go down in her settings on the oscillator as well. She is down to 47% oxygen, down from the 100% on Thursday. Praise God! I can hardly believe that the miracle is still happening, especially after the rough week. Tomorrow she will be 3 weeks old. I will keep praying for another great day. I think we're due for a week full of great days. The nurses still say there will be rollercoaster rides...

I got to touch her again tonight. I really enjoy it and I think she knows it's me. I always tell her how proud I am of her, and how much she will be spoiled. No doubt about that. I think we all will spoil her once she gets home, but she deserves it.

Day 19

Unbelievably, all of Ava's stats have gotten better. Her oxygen level that she is getting from her oscillator are getting better. She is eating 1.5cc of my milk every 3 hours. Her nurse that was in the meeting with us on Thursday told us that she is going to ask to be kept with Ava and she is working on getting the same nurses for her. She also told us how impressed with us she is from that meeting and what perfect parents we are for Ava. She told us that she even told our doctor that. That made us feel really good, because at that meeting they really looked at us like we're strange and/or crazy. She said she can even tell what a great relationship Anthony and I have (and we do... thankgoodness God answered that prayer almost 10 years ago). The doctor came in and said a few things to us like things were going better and he smiled a bit. He said that we are going to increase her food intake while keeping her on the oscillator and hopefully she won't get a kidney infection or any type of infection that would be mortal. He also said he's glad when he only has to spend a few minutes by her incubator. Than that would be a good day for Ava. I told him that I am calling her "Amazing Ava". He left and our nurse told us that he is really happy but he just doesn't want to show it in case something goes wrong.

Our nurse let us touch her again and I put cream on her back, head and hands. Ava melts when I do this and falls completely asleep. She even holds my finger. We also cup our hands over her head and bottom to make her feel like she is still in my womb and her stats go up where they need to be. I sing to her and talk to her. She opens her mouth like she is trying to talk back when I tell her that I want to take her shopping with her sisters and go to H&M. I think she agrees. ;)

Day 18 - The really bad day that turned into a good one

 After the crazy night before, my ladies awoke very early. We waited for Anthony to come home and after getting the girls already, Anthony came home about 10am. The nurse told us to pack a bag and that we would probably stay the night in their suite. So we packed up, and dropped the kids off at my parents.

We got to the hospital and the doctor wanted to speak with us. Pastor Rocky also came into the meeting and the doctor discussed Ava with us. It wasn't good, and he told us that Ava will have some disabilities. He still said that maybe she won't but IF she makes it through this that it is a high possibility. They said there is only a 10% chance she could make it to the age of 2. They also wanted to know how far we wanted to go to save her, ie. resuscitate her if her heart gives out. Pastor Rocky quoted some scripture, which gave us hope because even he is still hoping for a miracle.

We got the opportunity to hold Ava a bit in our hands and also to put some cream on her body and head. She really loved it and her stats were doing very well when we would talk to her and hold her. In fact, that morning her eyes opened up. We are praying that she can see good! We were able to go home and sleep, so that was wonderful as well.

So, today was a pretty good day and they were able to give her food and wean down her O2 a bit along with her settings. We have no idea what will happen, but we are praising God that she is here every day and also praying for a miracle.

Day 17 - Exhaustion

I don't even remember how this day started... And it was yesterday. I believe around 4pm, Ava's oxygen saturation was getting into the 50s. They put her on 100% on her breathing machine. Anthony was on his way to Vegas and they called me to tell me what was going on. The told me to wait an hour or 2 and they would call me back. I waited an hour and called back. They said she was doing ok. I called later and talked to a new nurse and she told me that she would come in if she were me. So, I told my mom to come over and be in the house while the kids slept, and then had my friend Connie meet me by the airport. My other friend Rachel (who is a nurse out of Sister's), was meeting us there as well, along with my mother-in-law. We all got to the hospital and they told me that we may lose her. The doctor also said that most babies are off the breathing machine and breathing regular air sometime during this time and Ava has never. So that is another bad sign. But she made it through the night and her gasses seem to be better. And she continues to fight... You should have seen her shake her fist at those nurses. I thought I took a photo of it, but I didn't. It will be embedded in my mind forever though. =)

We are now supposed to stay in the hospital and we really need another miracle...

Day 16 - A Rough Day

Today started off fine when I called for Ava. But when we went in to see her, the hole had again reopened. The doctor told us that if it doesn't close permanently that she will surgery. The surgeon is in Rochester, so he will either have to come to Ava, or Ava will have to go to Rochester, which is dangerous. She would also have to stay in Rochester for 2 days till coming back to Sister's. Either way, she would be out for two days after surgery. We are praying that she doesn't need it and the heart stays closed. She will get another echocardiogram either Thursday or Friday. They did find out that the hole is "small" compared to the size of "moderate" before. The doctor also said that her lungs are so small and that we have a long road to go on those as well. If she ever gets pneumonia, it could be fatal.

Today was very hard and I have been a tad bit more emotional than normal. I just need this to get easier. Anthony is leaving tomorrow for Vegas and he won't be back until Saturday afternoon. I am hoping everything will be fine while he is away so that I can handle all of it. Ariana also wasn't feeling well today. Anthony took her to the doctors and she has an ear infection and is having asthma problems. At least they didn't send her to the hospital.

They also had to put another line in her foot to draw blood. Her bilirubin is looking better and she was getting more blood again today.

Day 15 - Half of a month with Ava

We got some really good news today. The hole in Ava's heart did close. Praise God! In addition, she was able to eat again. She is back to eating 1.5cc and will be on that much for a couple of days. They weighed her yesterday and said she still weighed 1lb 5 oz. give or take with all of the equipment. When Anthony and I went in to see her she was on her tummy and her back looked not as skinny and she looked bigger. It also looked like she had a bit more hair on head. Her gasses did go up a bit and they were checking her every 1 to 2 hours, but I just called at 10:30pm and they said that her CO2 was better.

Can't wait for Day 16 with Ava!

Day 14 - Two weeks with Ava

Today, we woke up to Ariana being sick, which also means that we could be carrying the sickness to Ava. Poor Ariana was very listless today and having a hard time breathing. I went by myself to see Ava, after Nurse Judy telling me that if I washed my hands and wore a mask, I would be ok to come. Good thing too since I ran out of bottles for milk.

The nurse said that Ava was doing well today and her gasses went down. Her O2 went down to 63 from 80, but tonight it was back up again. The cardiologist stopped by to check on her, but he couldn't hear anything with her heart because of the oscillerator. He told the nurse that he would be waiting for her echocardiogram tomorrow. Her bilirubin also went down today to 2.1 from 2.5. So, we are praying that the hole is closed in her heart and that would be a huge relief and we could move onto something else.

Praying for both of my babies to feel better...

Day 13

We went to visit Ava this afternoon and they said that her gasses were ok, but that she had a very peaceful day. I got to put lotion on her to help her dry skin. I am definitely in love! =) Afterward, the nurse told me to hold her arms and legs in my hands until she calmed down.

One more day down...

Day 12

I went to bed last night hoping Ava would take her feeds. I woke at 3:30am to pump for Ava, and I called the NICU. Her nurse told me that she had taken her last two feeds fine and that her spitting them up the night before must have been a fluke.

This morning I called and was told that they were going to give her an echocardiogram to check her heart and see if the hole that every baby has been born with, had reopened. She had it checked last week and it was closed at that point. If it was opened, it would tell us why her gasses had been so bad and why she need more oxygen. She was tolerating her feeds so they were going to increase her to 2cc this evening. The culture to see if she had an infection still had not come back positive, so that was also a good sign she may not have an infection. Her arm as well was looking better.

I called later in the day to find out if the results from the echo had returned. They had not. Anthony and I planned on taking the girls with us to Buffalo, and they would drop me off at the hospital while doing errands. I went to the NICU only to find out from one of the neonatalogists, that the hole did open up again in her heart. He told me they were trying to get this type of medication to possibly close it, but that the company had temporarily stopped making it. There was also another type of medication to use, but they haven't had much success at Sister's with it. They called Children's Hospital and Strong to see if they had any of the other medication that they were used to using. Unfortunately, Children's had some but they wouldn't let us have any in case they needed it for another child with a more extreme circumstance. So, Ava is going to get this new medication starting tonight at 7pm, tomorrow and Sunday night. Children's did tell Ava's doctor that they have had success with it. They will check with another echo on Monday. If her gasses get much better, we can also probably believe that the hole is closing. Children's also said that if the hole doesn't close after the first round of medication they will give us the other type of medication. They will try and give Ava 3 rounds of medication to close the hole if it doesn't work the first time. If it doesn't work after the 3 rounds, she will have to have surgery. The doctor told me that there isn't a surgeon close by to do that type of surgery, so Ava will have to go to a surgeon, or the surgeon will have to go to her. I'm praying that we don't get to that point. In the meantime, they need to dehydrate Ava until the hole is fixed. She is not allowed to eat until she is off the medication. I'm sad about this because she was starting to look not as skinny.

On a good note her bilirubin test was better so hopefully she can go off the light.

So another day has passed, and I'm hoping for more miracles...

Day 11 - Another day with Ava

Today I called to find out that Ava has an infection. I don't know much about it, but the nurse also said her settings were up on the oscillerator. But today she is starting to get 1.5cc's of my milk, up from the 1cc.

I had a doctor's appointment at the Seton Center which I had to wait an hour before seeing the NP. Afterward, I went over to see Ava. When I got there, I noticed her arm which is where they believe that she has an infection. It is blue with all this blood and swollen. The nurse told me tonight that they still don't have a sign of an infection but it takes 48 hours to know for sure. Her settings went up again as well this evening on her breathing machine. I'm just praying that they go down soon. We need some good news... It's so tiring. Ava does seem to be resting a bit more. She's my fighter and I hope she keep fighting.

A young woman and her husband came in the NICU this afternoon with ruptured membranes and almost 24 weeks pregnant. She looked really upset and I tried to give her encouragement and advice. She looked really sad at seeing how small Ava was. But I know the alternative.

So, here's to another day - praying for Day 12 =)

Day 10

The one nurse told us that we may have 100 days in the NICU. So, that means we have 90 days left.

Day 9

Ava's CO2 gas is a bit better today. We are praying that her lungs get better so she doesn't get lung disease. We had our friend come over today with food and to clean the house. Thank God for MOPS moms!

Day 8

Today, the nurses are describing Ava as feisty. Wouldn't you be if you couldn't be with your family and you have tubes stuck in your throat and all over your body? That is what probably is keeping her alive.