September 29, 2008

Things are pretty much the same with Amaree. She did go up a little on her settings (*sigh*), but is stable and mostly calm. She is scheduled to have another head ultrasound today, but the results won't be available until much later. This is routine and is just a 30 day check up.

Since there isn't much news, I am posting some fun pics and video we took over the weekend. Enjoy!

The whiring sound you can hear in the background is the ventilator. You can also see the size of her binkie. Tiny!

This is a view of Amaree's room. You can see Andrew by her isolette, and she has one roommate. This is so much better than room 1. The lights are softer and there is so much less going on.

Big eyes! You can also see the blanket she is laying on is one that I got to pick out. I know it is silly, but I like them.

September 28, 2008

Amaree had a rough night. They said that she went up on her oxygen and they think that part of her lung collapsed. Her settings on the ventilator are up quite a bit. They did another x-ray this morning and it looks good, so they think they got the lung to re-inflate. She has two days left on the antibiotics, and so we are hoping that the infection is gone by then.

She has gained some weight, and is now approximately 2 lbs 13 oz! Two more and she will have gained a pound! I got to pick her linens last night, too, and I had a fun time doing that. I choose mint green with a blue moon and star pattern. Sometimes it is nice to feel like I am DOING something, even as silly as picking her sheets and changing the occasional diaper.

September 27, 2008

Amaree has been sleeping almost all day. They are giving Amaree some asthma medicine to help her breathe easier. She is still struggling on the settings with her ventilator. We really want to get this infection and pneumonia over with! Her x-ray this morning did look better, but her settings haven't gone down much.

Last night she really went to town on her binkie. She really enjoys it. She also had the covering removed from her stitches. Her incision looks great! There will not be a huge scar from her surgery. The line is really smooth and clean.

Things are pretty much status quo. Not many changes, but we keep praying she will get better soon.

September 26, 2008

She is still handling her feedings very well. The infection that she has responded to a certain antibiotic so they switched her medicine to it. She also has stayed about the same on the ventilator today.

When we got here last night we made it in time for evening cares. I put some milk on her pacifier and gave it to her when they fed her and she really liked it. She sucked on it fairly well considering the tubes in her mouth. Hopefully when they come out she will be able to learn to feed fairly easily.

This morning she was on her tummy and had her eyes open. She was doing this funny bouncing thing where she was pushing up with her feet and then moving back down. It was really funny to watch.

They do Halloween pictures here where they put the babies in little costumes and take pictures. Amaree has to be off the ventilator for that to happen, so we are hoping that she is off the ventilator and the CPAP by the time Halloween rolls around.

September 25, 2008

I just heard from the hospital. The infection is from the fluid in her lungs, so it is pneumonia. The blood and spinal tests are not showing any of the infection. The good news is that she has been on the antibiotics for a few days already and they are the same ones that they would have started to treat the pneumonia. They did an x-ray this morning and it looks better than the one that they did last time. She has had to go up on her ventilator settings, but what do you expect with pneumonia? It sounds like she is doing better and has already been receiving the treatment. Hopefully we can get this taken care of and keep moving on getting off the ventilator. Andrew's main priority is getting her off that thing!

September 24, 2008

When Amaree is comfortable and relaxed, she puts her hands up by her face. We see her in this position quite frequently. The tube that you see coming down and covering her face is the tube for feeding. it goes straight down into her tummy. You can also see the gel pack in front of her body. Sometimes this is under her, and sometimes it is like you see here, and they wrap her arms around it. It gives support and also it is warm and is supposed to help her feel comforted.

I spoke with Galina (her NNP) this morning about her. She doesn't have the infection in her spinal fluid (hooray), and she isn't showing any signs of being sick. The infection is showing up in a test, but Amaree is still eating, (now up to 24) and resting and has opened her eyes and was looking around when Galina looked in on her. They are still just going to give her seven days on antibiotics as a general rule. Hopefully we get this thing beat before Amaree even knows she is sick. They are still running some more tests to determine where and and what kind of an infection she has. If the infection isn't causing the fluid in the lungs, but is just in her blood, they will have to give another medicine and probably some steroids to help get the fluid out of her lungs. I hope I am conveying all this information correctly-sometimes I get overwhelmed and a little confused about everything!

We would also like to thank everyone for their comments-it is so much fun to hear from you and we are so grateful that you care enough to check this. We love you all and really do appreciate the prayers and thoughts. We sincerely thank you.

This is Amaree's favorite position. She loves to be on her tummy. They can put her on her tummy since she has a machine breathing for her. We know it is her favorite because her settings are always good, and she sleeps, and she digests her food best in this position. Also her hands relax and and she just looks so comfortable.

Well, we know why Amaree is struggling moving down on the ventilator. She has stayed about the same, or when ever they move it down, she has been going back up. Amaree has fluid in her lungs. They ran some tests to find out why she has the fluid, and she now has an infection. It is for real this time. They have started her on antibiotics but they are running some tests to find out what kind it is and where the infection is, if it is in more than just her lungs as a pneumonia. She won't be coming off the ventilator for a while. She needs to have strong lungs and at this point she has to get over this before that can happen. The good news is that she is still eating and handling her feedings of breast milk. They did have to put another IV in to give her the medicine that she needs. Another bump/hill/mountain to cross.

September 23, 2008

Amaree had to go back up on some of her ventilator settings due to a poor blood gas. We are still not sure what that means, but they are still trying to wean her, so we are still hopefull that it will happen sometime in the near future. She is doing well with her feedings and has been very calm and restful.

September 22, 2008

It has been more good news today! The PICC line has been removed because she is up to full feedings! The PICC line is the one you can see in her right arm. She is getting everything from the breast milk. They say we should really see her start to grow now. The ventilator has stayed about the same, but they are still trying to wean her, and hope to be able to take her off sometime this week.

September 21, 2008

They had to put a new tube in her this morning. She had worked the tape on the other tube off around her mouth, it was still attached on the sides. The tube was also a little too small, they had been waiting to remove it, hoping to just take it out, but since they had to redo it, they put a new one in and they are hoping that it will help her wean faster. She was down on her ventialtor settings again, so hopfully we can take her off soon, and she will stay off! Her feedings are up to 15 ml! We are excited becuase they hope to remove her last IV tomorrow or the next day, assuming she continues moving up on her feedings. That will mean that she is getting all of her sustinance from the breast milk, and none from the IV. She will have to have her sedation given through her feeding tube, but at least the IVs will be out.

She is still very agitated, and was strong enough to push herself up on her legs. She was on her tummy, and we were trying to tuck her legs underneath her, but she pushed her legs out and then pushed her butt up in the air by locking her legs. The agitation is coming from her not being medicated as much and she is highly sensitive to stimulation as a premature baby. We have been trying to let her rest as much as possible.

This morning Amaree has been agitated still. They are trying to wean her off of her sedation medication, and she is struggling with all the stimulation. Containment is when you put your hands on a baby and give gentle pressure. You don't push too hard, but you try to make the baby feel as if it is in the womb and contained. You try to comfort the baby by holding its arms and legs so they don't fly around. It is all very gentle. Babies that are like Amaree struggle with patting, stroking, and rubbing. It is better to keep them calm. Our nurse showed us some really great ways to calm and help Amaree today. She responded really well, so we feel like we are doing something for her.

Her lung x-ray came back really good today, so the fluid in her lungs is mostly gone. She is also up on her feedings-again! She is also down quite a bit on the ventilator, and her oxygen is in the 20s. She is moving in the right direction.

Room 2!

Amaree has finally made it to room 2! It is so much nicer! We were always getting kicked out of room 1. In fact, we got here tonight and they told us that we couldn't go into room 1 because they were doing an admit. We looked at the board, and said, oh yes! We can go in because she isn't in room 1 anymore!

She is doing GREAT on the oxygen tonight. We are happy about that. She is up to 11 ml on her feedings. They even had to move to the next bigger syringe! She still needs to work on that pooing thing.

She is also getting SO strong! Last week she wasn't able to move her head, but tonight she was really moving it. Also she is hating the tube down her throat. Her little hands find that tube and she starts playing with it. Andrew was really concerned that she may pull it right out. He was using containment to get her to calm down, but we finally had to give her some sedation because she was acting like she was going to wiggle right out of her isolette.

September 19, 2008

Amaree now weighs a whopping 2 lbs 10 oz. She is doing well on her ventilator settings, they are coming down, slowly, but surely. She has had a little trouble with the feedings, her body isn't digesting it as well as before the surgery. Her body is still recovering. She only had heart surgery on Monday. Anyway, the simple (Andrew's) way to say it is that she needs to poop more. We don't know about the fluid in her lungs yet, they are going to do another x-ray tomorrow and we will see how that is doing. The most exciting news is that they are going to move her to room two in the next few hours!!! (If you don't know what I mean, check out some of our previous postings.)

September 18, 2008

Amaree looks very comfortable, all streched out, wearing sunglasses, and getting some sun (phototherapy).

This is Amaree's bedroom. They call it a Giraffe. The top lifts off, and all the sides fold down. Usually, we open the two doors on the side to reach in and touch her. When we left last time, they lifted the top, and let me lean in and kiss her. That was only the second time that they let me do that. The first was right before they took her on Life-flight. I can't wait until I can kiss her all the time.

Amaree is back to 9 ml on her feedings. They have turned down the ventilator a little, but they are concerned about fluid in her lungs. She needs to get off the ventilator, but with the fluid in her lungs, it is going to be difficult. She has been given some medication to get rid of the fluid, but we will have to see how well it works. She has lost a little weight, but that is to be expected since she was off feedings for a few days.

Amaree's foot is so small compared with Andrew's hand.

Amaree is doing very well today. She has had a few feedings today and is doing well with them. She had one of her IV's removed (Yeah!) and she is off of her blood pressure medication. The nurse told me that she has been awake a few times, but has been resting fairly well. Hopefully within the next few days she will be onto full feedings where she gets everything from the breast milk. Right now, she has still had to have the glucose/protien/vitamin mix in her IV because she isn't all the way up to full feedings on the milk, but she should be able to get the full amount in the next few days, we hope. We are also hoping that she will be moved to the next room soon. It is quieter, and we won't get kicked out whenever there is a new admission! She has been in the admit room since she arrived, and so we would really like to see her moved to a calmer room. It also means that she is stable enough to be moved. I will let you know when that happens!

September 17, 2008

Andrew's hand on her little head. She weighs about 2 lbs 9 oz right now.

Amaree did very well yesterday. She came down on her oxygen and they should start feeding again today.

September 16, 2008

I know this looks like a lot, but this is 7ml of milk that she was getting. It really isn't very much to us. She was at 9ml before the surgery, so they will probably go back down when they start feeding her again and then move back up.
Amaree had a rough night, she was clear up on her oxygen and she is having some problems maintaining her blood pressure, but she is doing much better this morning and afternoon. She has been able to start coming down a little on the ventilator and the medication to regulate her blood pressure. They were going to remove the tube from her chest that was the drain for surgery, hopefully sometime this afternoon. She is still sedated, so she isn't in any pain and is just resting. She looks really good, and so we have been praying that this will be the thing that will just let her move forward. We appreciate all the prayers. We know that Amaree is doing so well because of all your prayers and faith. Thank you, it has made a difference.

Surgery is over!

She is done with the surgery! The surgeon came and talked to us and said that all went well. Her nurse said she did great. The surgeon also said that once the PDA was closed, her blood pressure doubled. Which means that 1/2 her blood was being sucked away by the hole, and it was a really good sign that it doubled when closed. He also said that her lungs looked good from the outside. We will see her in a few minutes. We are so relieved that it is over. Now we have the recovery part, but the surgery was really hard for us.

September 15, 2008
The surgeon was only an hour late she is going into surgery right now it is 4:10 p.m. The doctor told us that he would be about 30 minutes and then he would find us and tell us how things went.

September 15, 2008
Amaree will be going into surgery within the next couple of hours. They gave us a time frame between 11 a.m. and 3 p.m. Her heart rate is normal about 150 beats per minute, but ours is normally suppose to be much less then that but today our hearts are pounding. This is probably the scariest thing we have ever experienced up to this point in our lives. The only thing that brings us comfort right now is that god lives and he is watching over her and we must trust him. We will update after surgery, we have a continual prayer in our hearts that she does great.

Things have been pretty quiet here. She has been really good, staying stable. We are still waiting to find out what time the surgery will be. We know it is tomorrow at some point, but we don't know if it will be 7:00 am or 7:00 pm or sometime in between. Her weight is still around 2 lbs 7 oz and they will continue feeding her until midnight, unless we have a more specific time. We just had a fun few minutes with her after we changed her diaper, the nurse moved the lights off of her and we took her little sunglasses off. She opened her eyes and looked at us. At one point I swear she even smiled at us.

September 13, 2008

When this first happened, we counted our time in hours. After the first 48, we began counting our time in days. We have officially reached two weeks. It feels like it has been years. We have learned so much and been so blessed.

Amaree's surgery is scheduled for some time on Monday. We are not sure if it is morning or afternoon. We were hoping to have it done sometime today, now that we know she needs it, we want to get it done so we can keep moving on. They told us that the reason they couldn't do it today, was that there were several other major surgeries scheduled for today, like the ones that take hours and hours. We are grateful that she is doing well enough that she doesn't need that kind of surgery. Although this surgery is scary for us, they tell us it is routine, and that it is short, something like 30 minutes. Hopefully she will start doing better after this.

We had a good day with her. She has been eating 9 ml of food every three hours, so she has her dad's appetite too. She weighed 2 lbs 7 oz yesterday, so she has gained 8 oz since she was born. When they feed her, they give her a Binky so she gets used to the feeling of something in her mouth and the feeling of her stomach getting full. They put a drop of milk on it so she gets used to the taste and smell. She really likes it. The Binky is really tiny, probably smaller than the diameter of a pencil. Actually, we can't think of anything that it is like. It is small. So when we put it in her mouth she tries to suck on it. We were able to take the lights off of her for a few minutes while she was awake and she had her eyes open. She would look at us, and at one point it was almost like a smile. She still responds really well to Andrew's voice. Two of our favorites nurses were working today and they both said that often they can't see resemeblence so early, but with Amaree, she is DEFINATELY daddy's little girl. When she opens her eyes, they can see him.

The nurses also think she has some spunk that is helping her get through all of this. Several of the nurses have commented about how sweet and adorable she is and that they all try to get her for their shifts.

September 12, 2008

Sorry it has taken so long to get an update. We spent the morning at Social Security trying to get help for Amaree. We saw her last night and she looks so good! She has gained 5 ounces since she was born! And it isn't water weight either. They were feeding her 7ml last night, but this afternoon they started her on 9 ml. That is almost one whole syringe! She had ANOTHER echo and we are still going to see about surgery.

We have learned that she does NOT like to be dirty. She was very upset when she had a dirty diaper and it needed changed. The nurse was trying to figure out why she was so agitated when she realized that she had a blow-out. Once she got that changed, Amaree was calm and happy again. She spit up a little when they fed her and she was very distressed about that as well. Once she was cleaned up, she was fine again. Note: do not let her get dirty.

As we were updating this, Galina came and talked to us. They are going to have to do the surgery. We don't know when it will be, either tomorrow night or Sunday. Her heart is starting to become strained, so we really HAVE to get it done now. We are both scared, but they reassure us that it is a common surgery that she will start to make improvements on the ventiltor once it is done. She is gaining weight and doing well, but her lungs have been struggling and she hasn't moved on the ventilator in three days. Her lungs can't improve while her heart is strained, and so it has become necessary. We are praying that all goes well.

September 11, 2008

Here is a full body shot of our little Amaree. Her diaper is enormous, but since she soaks through the smaller ones she had to have the larger one.

I spoke with Galina this morning. Amaree is doing very well. She is gaining some weight, and they are working on weaning the ventilator. They have increased her feedings and she is getting a lot from the breast milk. There is some wetness in her lungs, but with her on the ventilator and with the PDA still not closed, it is to be expected. It has been so hard to be away from her. I have been counting the hours until we can see her again and I am so excited!

hungry little girl

September 10, 2008 4:00p.m.
Talked to the nurse about how Amaree was doing and she said that she is still doing great and is now eating 4 ML of breast milk and lovin' it.

September 10, 2008

She is trying to open her eyes. Her one eye is really swollen because of the tube in her mouth, and you can see from her expression that it is a lot of work for her to open her eyes. Andrew must have been talking because I only get one eye and he gets two.

This morning and last night have been really good. She is doing well on her oxygen and on her feedings. They have moved her up to 3ml and hopefully will move her up to 4 ml soon. She also had a real poopy diaper! That means that everything is working the way that it supposed to, so that is a relief. They also removed her IV's, so she only has one line going in now. Her nurse last night said that she is really sensitive to the noise, and she wants to move her into the next room, which is more quiet, and much less intense. One more day and we can see her again!

Oh yeah, and she has Andrew's blood type. I don't know if we will ever find anything of mine that she has. :)

King size me

September 9, 2008
Talked to the nurse at about 5 p.m. tonight they have doubled her meals from 1 ML to 2ML. She is doing well and her oxygen settings are still staying on the lower end. They are hoping that she can grow big and strong and things will contiue to get better.

September 9, 2008
Talked to the nurse around 11:00 a.m. this morning and she said that Amaree was back down on her oxygen and breathing well, she was also awake and had her eyes open for awhile. Amaree was moving around a little to much and so that nurse gave her a little medicine to calm her down so that she does not rip out any of her IV's or monitors.

September 9, 2008

So last night there was a complete break down of communication. Last night they told us that she has an infection, that the hole in her heart is huge, that her heart is strained and that the machine was doing all of the breathing. This morning, when I talked to Amaree's regular NP, Galina, things are fine. She heard about what they had told us and she was frustrated as well. We are NOT going to do the surgery yet, things are the same as they were two days ago. She does not have an infection, her heart is not enlarged, her hole is not gaping. Yes, she did have to go clear up on her oxygen support, but her lungs also collapsed when they took her off the ventilator, and Galina thinks that this is just part of the damage, and her lungs are struggling from what happened. This morning, Amaree is back down to normal levels on her oxygen. Andrew and I both really frustrated. This is SO hard as it is, let alone misinformation, scaring us half to death and us not being there. We had called to get the results of the scan, and we were not given the correct information. I don't know what happened, but we are going to make sure that this does not happen again. We are really frustrated.

Results

September 8, 2008

We are waiting for the results of the head scan and the echo. She has still been really sleepy. They put her back under the lights, so she can work on her tan. She already has darker skin that I will ever have, so the tan is the least of her worries.

They did start feeding her yesterday, but she might have to go off the food again if they decide to do the surgery. She tolerated the food really well. Sometimes babies can have a hard time digesting it, but she hasn't shown any signs of having a problem. She did have her first bowel movement yesterday, and I got to change it. They have been waiting for it, so it was nice that it showed up and we know that that part is working.

We were there for her nightly bed changing and they weighed her at about 2 lbs. She is also about 14 1/2 inches.

I give up--she has Andrew's toes too.

September 7, 2008

We went to a sacrament service at the hospital and then we visited with Amaree while we waited for rounds. It is really nice to be there for rounds because the Doctor and the NP and the nurses come in and talk about the baby and then make decisions. The doctor is not happy with her murmur. He is concerned that the hole in her heart is getting bigger or that it is causing fluids to be left in her lungs (if I understood correctly). Anyway, he is concerned about the hole in her heart still. They are going to do another head ultrasound to check on the bleeding on the brain, (we aren't TOO concerned about it because the first one was good, but they still check it) and they are also going to do another echo on her heart. If it comes back that the hole has grown or that there is any stress on her heart then she will have to have surgery to close it. Amaree has been sleeping, mostly by herself since they put her back on the ventilator. She must be exhausted from the effort that it took to try and breathe on her own. They are going to start giving her some milk today.

Andrew and I are both exhausted as well, but we are going to try to go home and take care of a few things and then come back out. We may have to make a very short trip home because if they do the surgery, they do it within 24 hours of deciding to do it and we both need to be here for it.

We did get some really great pictures of her that we will publish tomorrow. Thanks again for praying for her and for us. It is really helping us.

Oh, and she has Andrew's legs.

September 6, 2008

The CPAP didn't work. She had to be re-inibated. That was sad for us, we were hoping that she would be able to do it, but she wasn't ready. She has been sleeping most of the day, she worked really hard trying to get the CPAP to work, but just wasn't ready yet. She is really calm, and has been started back on pain meds and sedation so she is just sleeping a lot today. She didn't even wake when we changed her diaper, but she really does need the rest from working so hard those few hours. They took the line out of her belly button and will be taking the IV out of her head and she will have another one where ever they can get a good line.

We are working on just trying to take things more evenly. We are getting our hopes up and then something happens we get discouraged. The roller coaster can have SUCH highs and lows. We understand that it just takes time, but we need to take things as they come and remember that this is a journey not a Sunday afternoon drive.

On a lighter note: We have determined that she has Andrew's hands. So if you are keeping count:
Andrew: Ears, hands, nose, mouth, skin tone, toenails, hair and eyebrows.
Jessica: toes, gender (although I am trying to keep the toes, I think they really are Andrews too; and like I have any control over her gender either!)
The only thing that is still up for debate is her eyes and we all know who has the higher tally!

Off the ventilator

As we type this, Amaree is getting her tube pulled for the ventilator. She will be going to another form to help her breathe (it is like the CPAP machine) , but this is a major step! The big tube will not be going down her throat, and it will just be the little tubes in her nose. More good news today! We are praying that this goes well and that she doesn't have to go back on the ventilator. :) This means that she will start getting some real food (breast milk) soon.

Another thanks to everyone who has been taking care of our house and helping us. Thank you all so much!

GOOD NEWS

September 5, 2008; 4:30 pm. We have some good news! The hole in her heart is not closed, but it is much smaller. It went from being "Large" to "Moderate to Small". Also the scan showed that her heart isn't strained from having it open. If it had been strained, we may still have had to do surgery, but right now we are just going to leave it. Because it is small it probably won't be as much of a concern. Our NP said we are going to up her fluids, check her for the next 12-24 hours and hopefully get her off the ventilator! She will also begin feedings. Which means she can actually use some of the breast milk that is accumulating! It won't be much, but if she can get some of the nourishment she should begin growing. She has stayed about the same since she was born, and so we are hoping that this will be a catalyst to more good news! Thanks for praying! We have evidence that it is working every time we turn around.

September 5, 2008

So it doesn't appear that the hole in her heart has closed, we will know for sure in a few hours, but the preliminary diagnosis is that she still has it. Her NP told us that if it is lessened then we might sit on it as long as th heart hasn't been strained. Right now we just have to wait, but if we have to do surgery, it will be in the next 24 hours. The sooner we can get that taken care of the better. Also, when we got here, her other IVs were not working so they put one in her head. It looks really scary. They told us it is really common and that it is just like one in her hand, but she doesn't move her head as much and it is a big vein. It was alarming to us, but it is okay. We are just waiting right now for results of the images of her heart.

September 4, 2008

Things are pretty much the same this evening. They gave the second dose of the med to close the hole in the heart. I got to hold her tonight! Andrew and I were there for care and we were able to change her bed sheets and I got to hold her up while they took the old sheets and replaced them with the new ones. It was the highlight of my day, I was so elated to be able to hold her for even a few minutes.

The other highlight of my day is that the nurses took hand and foot prints for us. They are so precious. I will see if I can get them scanned and posted next week.

We have also been looking at who she looks like. She has Andrew's ears for sure, and his lips. We aren't sure about the eyes and nose, but the fingers are SO long! We don't know where she got those, we both have short fat fingers. Her thumb is probably as long as her other fingers. Her toes are shaped like mine, but she has Andrew's toe nails!

For the next 18 hours, please pray that the med works to close that hole in her heart! Thank you!

September 4, 2008

Okay, so a few setbacks today. We are still optimistic, but there are a few things that have happened. The most pressing is that the hole in her heart isn't closed. They started a second round of meds to get it to close. We were also hoping that she would be coming off of the ventilator soon, but she isn't quite ready so we are going to wait for her to be ready. She is back under the lights again, and under the sunglasses, but that is to be expected because her body can't break down something that heals the bruising and that is what the lights do. I hope this is a better picture, the monitor that we are using makes it very difficult to see.

Also, sorry about the lack of medical terminology. I just kinda know what they are talking about, but I don't always know the exact terms. On an positive note, she is losing the swelling that was making her very puffy. We didn't want her to pee it off because it would mean that the hole was closing, but since she is peeing it off it is good because it was going to have to come of sometime. Love you all- thanks for checking!

September 3, 2008

This afternoon things are going well again. They have started her on caffeine to help her respiratory system. We would take it to do get stimulated, and they gave it to her for stimulation. Her 4:00 pm diaper change was pretty dry, so that is a really good sign that maybe the medication will work (she needed to not pee so much because that is a sign that the medication for the hole in her heart is working).

They are taking her of the ventilator tomorrow if things continue to go well. They asked us to be in a study to see how she does on her next breathing system. What that means is that they are putting her on what is basically a C-PAP with an extra puff of air. They will study how she does so they know how well/long it takes her to be on her own. It is just so they have the information. They were going to take her off the ventilator anyway and this way they can study the data to help kids in the future. We feel good about it, but it sounds a little scary to be asked if you want to participate in a "study".

We are going to try to get some better pictures, not that what is up isn't good, but that she LOOKS so much better, but the computer we are using isn't set up for that yet. We will see what we can do. We are both really tired, but appreciate the comments and support. Thank you!

Another good day!

September 3, 2008:

Today is another good day. There is a little hurtle that we are trying to work through. The hole in her heart hasn't closed yet and they have given her two doses of the meds and so we are just waiting to see what will happen. She is breathing very well and chances are that she will be able to be taken off of the ventilator soon. She is also doing well enough that she may be moved from room 1 into another room within the next day or so. We hope! The NP has been saying that there is definitely somebody watching over us and giving us these great blessings. We need her to stop peeing so that the hole in her heart will close. Normally, they want the baby to pee to reduce the swelling, but we need the hole to close, and for that to happen, we need her to stop peeing so much. I got to change her diaper and Andrew took her temperature again. She is responding to the sounds of our voices and opening her eyes. She is moving quite a bit, and they took the IV's out of her legs, so she only has one in her arm and one in her belly button. Another good day! Thanks for the prayers! It really is helping! Looking better everyday.

Our little Amaree

My story

On August 30, 2008 my mom was having some cramps and was concerned so she called her midwife to ask what was going on Donna said that mom needed to time the cramp and it turns out they were not cramps that were contractions (silly mom). Mom called Dad and told him to pick up some things and get home. Dad picked up the stuff and rushed home from vernal about 80 mph. Wheh he got home he found mom laying on the bed in a lot of pain. He ask mom what was going on she said to call Donna. Dad called Donna and she said take mom to the vernal hospital dad got off the phone and told mom that we were going to vernal and that she needed to get dressed. When dad was helping mom get dressed mom began to bleeding. Dad called Donna back and told her that we would not make it to vernal and that we are going to Roosevelt. Mom called Uncle Scott and Cousin Alexus and told them that we needed help they rushed to our house and got in the car with mom, dad and me. Dad drove faster than he had ever driven--he reached speeds of 130 mph down Ioka lane. Uncle Scott called ahead to tell the hospital to have them ready to take mom back so we did not lose anytime (because I was in almost as big of hurry as dad was down the ioka highway to get here).
We arrived at the hospital and they called the doctor. when the doctor checked mom, she was at a six. They wanted an ultrasound to see where I was, and they did it as soon as they could. I was in position, and when the ultrasound was over, the doctor checked mom again. This time she was at an eight. They were telling mom not to push because they were not ready for me to come. They were lifting mom and trying to get her in position when the doctor said that she was at a nine and then the next thing anybody knew is that I was here. I arrived in my sac and the doctor had to break it open. Then they had to make sure I was breathing. I cried a little on my own before they took me to the nursery. The doctors worked on getting an IV started in my imilical cord while life-flight came. They also helped me breathe by pumping and putting a tube down me. When life-flight arrived, they took several more hours to get me completely stableized before my first airplane ride. Once I was ready, they let mom come in and see me. Dad and Uncle JD gave me a blessing and then we were off to SLC. I rode in an ambulance to the Roosevelt Airport, where I got on a fixed wing jet. Dad got to wear his own little headset and he thought that was really cool. The flight was really short and really rough becuase of the storm. We landed at SLC airport in the priviate air section where there was an ambulance that took us up to the U of U.

Day 3: September 2, 2008.

Today is a good day for our little Amaree. We are going to be getting some pics and we will try and keep this updated so you can all know what is going on.

Today is good because she is off her blood pressure meds, she is off her insuline, her head scan came back normal. I got to change her diaper, and Andrew got to take her temperature. She also responded to the sounds of our voices. She also got to take her sun glasses off and her skin is doing well, so she is out from under the lights. We met with the social worker and so we are going to work on getting on some programs to help. We will try to update at least once a day. Thank you to everyone who has helped us. We are overwhelmed and speachless at all that you are doing for us. Even the prayers have been felt and we are feeling strong because of them. Thanks to those who are taking care of the house and who have helped us out here. THANK YOU EVERYONE you just don't know what it means...You are all our angels!