October 31, 2008

Amaree had her crit tested again early yesterday morning and it was down to 22. At that point, they decided to give her blood. She has since recieved three transfusions, and after her third transfusion her crit was up to 43. She was really fussy today, and just wanted to be held. Andrew and I spent several hours just holding her. As long as we were holding her, she was calm. She looks so much better now that she has had the blood. We havent' tried any breastfeeding because she was so low. We really want her to get her rested and back to herself.

We also want to welcome Gavin to the world! Amaree's cousin was born yesterday morning, weighing in at 8 lbs, double the size of Amaree, but we are sure they will be good friends.

October 30, 2008

Things were going so well I should have known that something was going to come up. Last night Amaree had a grade 2, a grade 2, a grade 1 and a grade 2 A&B. We were there for the first two, and she was really really pale afterwards. They ran some tests and her hemotocrit is low, at 26. She is already on iron, but they aren't sure if they want to give her blood because it ruins all the red blood cells that her body is making. Then we will have to start over on that process and we could be looking at this same thing in a few more weeks.

Also, we learned a little more about her eye exam, but not enough to make me happy. They won't really tell us what is going on, so I am going to have to pursue more information today. What the doctor told us yesterday is "there is a change we want to watch." The nurse said, "it is already at a grade two, so it is in the middle." Another nurse said, "her eyes could keep her here longer." Eye exams are only scheduled every other week unless there is a problem, and she has one scheduled for next week. Does anybody else see red flags?

October 29, 2008

We tried to post last night, but the power went out. Doesn't help if there is no Internet.



Anyway, Amaree has had a very busy past couple of days. Yesterday she had her first immunizations because it was day of life 60. Today she had an eye exam. The eye exam is showing some changes, but her eyes are still immature. If there are problems with her eyes, they could keep her here until there isn't a problem. We are praying that things keep going well.



The breast feeding is going well, but she still gets really tired easily. I am learning to recognize some of her signals. One thing I have noticed is that if milk starts to come out her mouth on the sides, I need to tip her up so she can swallow, and if I don't, she will have an A&B. It is nice to get to know her signals better. Hopefully I will be prepared for when we go home.



This morning she had her little hat tipped a little so it looked like a 30's hat. It was so cute, so I took a few pictures, and I even caught a smile!

October 27, 2008

With Amaree in the open crib, we can hold her as long as we want, whenever we want as long as she is being a good girl. Today I held her for about three hours. We attempted breast feeding, and she did okay, not as great as yesterday, but okay. Then she fell asleep, and we took a nap together. It was great. She is doing well with the open crib. We tried again to breastfeed this evening, and she did okay, but not as well as yesterday. They said that might happen and we just have to keep trying. She is doing so well they told us to purchase a car seat for 4lbs and under. We keep getting asked if we have everything ready at home because all of the sudden she will be ready, and she is doing so well, that it could be quite soon.

The protocol says that she has to have two days of two 75% feedings from the breast before advancing. She did that yesterday, but not today. Today she had two feedings, but neither one was greater than 75%.

Andrew was changing her diaper today, and she kept pooing. It was so funny, he would get her diaper just about changed and more would come. He was getting a little flustered and didn't quite know what to do. I think it took four diapers before she stopped.

She is also in the newborn size diapers! She is getting big enough and has peed through the preemie sizes, so she gets the big baby diapers. However, most of the preemie clothes that we have are still a quite large on her. We have quite a few that fit, and some that say preemie, but are huge. It is a real trick trying to get her dressed with all those wires and cables though.

October 26, 2008

Amaree is doing great. She was weaned on the oxygen from 2 liters to 1.5. As soon as they have an open crib, they will be moving her into a crib. She has been able to maintain her temperature at room temp so she should do great in the crib.

The best news is that she got a full feeding from the breast! She was awake for the 2:00 cares, so we tried, and she just had a ball. She ate and ate until she fell asleep. She had a little bit of a hard time because she has a feeding tube in her mouth, so milk was leaking from her mouth. They tried to give her some more food, but she was just too full. She was amazing!

The other fun thing we got to do was dress her! She is so cute in clothes! We are going to change her clothes every day, so it will be fun to put new things on. It is a little strange trying to figure out how to dress her with all the wires and tubes connected, but we managed.

October 25, 2008

Amaree had to be taken down on her food a little. Apparently they were concerned that she was gaining too much weight too quickly and that it might be water weight. That is bad for little lungs. She is still getting 29.9 ml, so that is not a huge amount that was decrease.

She has had only one A's & B', and it was a grade 1s. And they have been decreasing. What a blessing.

Her incubator is down to 28.6. She can come out of the incubator at 28- so we are so close to crib time!

Her oxygen has been great- around 24%, so we can start weaning on that too! Her weight was 1815 grams, or 4 lbs, 1 oz!

Today was Alexaus and Barlow's wedding. We got to see a lot of people we haven't seen for a really long time. Everyone asked how she was doing and told us that they have been praying for her. It means so much to us and for us to hear that. I also heard that people have been having problems posting, but you want to send us a message, you can also email us at haha_56@hotmail.com. Again, we would like to thank everyone for their prayers and thoughts.

October 24, 2008

Amaree is now 1800 grams or about 4 lbs. She is weaning on the temperature of her incubator and as soon as she is down 1 degree (they wean .2 degrees) and maintaining her temp, she will get to go to an open crib. She will also start wearing clothes so I am taking out all the clothes that I have for her.

She did have one grade 2 A & B this morning. She was angry that they were taking some labs, so she decided to show them who was in charge and had an A&B. She hasn't had any others all last night so she is having fewer of them.

I have also asked the nurses to watch what times she is awake to see if there is a pattern. Hopefully we can find one and get her on a feeding schedule.

October 23, 2008

Amaree has had a really good night and a good morning. No A's & B's, just a few de-sats. Her oxygen needs have been 25-28%. That is so great!

She also is weighing in at 3 lbs 13 oz! That is double her birth weight! Her feedings have also been increased to 32 ml, and she is doing really well with it, no residuals.

The video I am uploading is as promised of her wiggling around. She is so strong! If you don't think that is strength, you try it. I have some exercise videos that have you do the same thing, and it is pretty hard.

October 22, 2008

Amaree is no longer under the headbox. Since she is on the high flow cannula, it has the humidity so she doesn't need it. She had some growth labs done today. I am not sure what all that includes, and the nurse could only tell me the results of one of the tests, her hematocrit-or her red blood cells. She is a little low, but they are not going to give her blood just yet. Her body is having a hard time making red blood cells because she is so immature. She has some, but they are immature, and if they give her blood, then it takes over hers and so they want her to have a chance at making her own. (from what I understand)

She is also still having a few A's & B's. Mostly they are minor, either grade 0 or grade 1, but we really want her to stop having them. We are learning to recognize it before the alarms go off. When she does it when we are holding her, she goes completely limp, and then her skin goes a little blueish. You can tell she isn't breathing, and you start tickling her feet and saying her name, and what they tell us to do is to take a deep breath. This helps remind her body to breathe. Sometimes you have to rub her chest or her back and try to arouse her. This usually brings her back and her numbers back up. Andrew has started calling her a possum because it is like she plays dead. Sometimes she does it when she is so relaxed that she just stops breathing, and sometimes she does it when she gets upset. Supposedly she will grow out of it, I can't wait until she does!

My goodness, it seems like there is always some drama with her! I hope it isn't always going to be like this-I would like some peace and quiet! ;)

October 20 and October 21

Amaree is doing is growing fast she is up to 3 lb. 11 oz. She is having some struggles remembering to breath and is having some A's and B's so they are going to put her on a high flow nasal cannula for a few days to help her remember to breathe. They think she is having so many A's & B's because she is coming off of the caffeine. She has been doing well with the feedings whenever she is awake. That has been a trick though, catching her awake.

Also, last night, we noticed for the first time that she has a dimple! It is on her right cheek-the same as her father! Go figure.

October 19, 2008

Amaree is usually up farther under the headbox, here she had worked her way down. She is really squirmy when she sleeps. I am going to get a video of it, it is really fun to watch.

Amaree is now only under the headbox at night. She wasn't very happy to be put back on the nasal cannula. She really liked not having anything in her nose.

She weighs 1620 grams, or 3 lbs, 9 oz. She looks SO big to us.

The breastfeeding is going fairly well. it goes the best when she is awake. when she isn't, it is a lot harder!

She has had a few more A&B's. They have all been very minor and they assure us that she will grow out of them. She has had one while each of us were holding her, and it is nerve-wracking to be holding her and then for her to stop breathing and watching the machines go wild with alarms and see the numbers take a nose dive. She usually comes right back up, but if we were hooked up to machines as well, I am sure that alarms would be going off on us too.

Her eyelashes are getting so long! She is also a little bit of a mouth-breather with that cannula in-it makes her a little stuffy.

October 17, 2008

Wow! so much has happened since my last post. I was going to post yesterday, but time ran out. When we arrived, she was under the headbox. She was really enjoying it. No tubes in her nose, and she was just able to breathe from the air around her. She loved it. It looks like a bubble and it goes around her head and the upper part of her chest. The humidity was good for her too. We tried breast feeding again this morning and she was really aggressive. The occupational therapist told me she wouldn't have guessed she was as young as she is by the way she was going after it. We are going to have do some learning together so we get it right, but we are working on it. They also moved her to room 3! She is moving up in the world! The move made her a little cranky, too much stimulation! She is much calmer now and was sleeping when I left. We are going to try breastfeeding again this evening.

October 15, 2008

Andrew looks so nervous holding her, but she was so happy to be in his arms.

Amaree's vocal cords are not paralyzed! This is such a relief and blessing because it could have made learning to eat that much more difficult.

Amaree is having another great day. She has been really stuffy and they have been talking about putting her under a head box, which is just a box with humidity in it to help break up the congestion. The congestion is from the constant air flow of the nasal cannula. Her oxygen is still in the low 30's. The nurses have been taking her out and holding her when she is awake so she can get used it, and they all tell me how beautiful she is, so I am hoping that I am not just biased.

Amaree has also gained some more weight, she is 1490 grams (3lbs, 4.5 oz) When she gets to 1800 grams (4 lbs) she can be put in an open crib. She is getting bigger all the time!

In celebration of her having normal vocal cords, I have a video of the first time that I really heard her cry. She was still on the C-PAP, but you can hear her just fine.

October 14, 2008

I love this picture. She is so beautiful and peaceful. You can really see how she looks and it just makes me want to hold her.

Amaree was moved back into a Giraffe incubator because the noise of the other one was irritaing her. They said it was really noisy and that they were going to try to get another one, but it may be a few days. She has gained a little weight, and has only had to be sedated once in the last three days. Her oxygen has been around 30%, and she is no longer recieivng steriod treatement.

She had another A & B this morning. It was a grade 0, so it was very minor, and not much for us to stress about, but we still do sometimes. Mindi, our nurse and one of our primaries, said that once she looked at Amaree then she came out of it. It was really good that she came out of it on her own, and that she has had so few. Some babies have 8-10 a day.

We are still waiting for the scope on the vocal cords, it will probably be much later today. I talked to them about it and they told me that it is a very short procedure where they take a 2-3mm camera and go up the nose and then down into the throat to look at her vocal cords. It takes 30 seconds to a minute and they have the results. It is just getting them there to do it that takes so long.

October 13, 2008

Amaree is having a calm day. She hasn't even had any sedation for two days. That is great because she is maintaining without anything. Her oxygen is around 30%, which is wonderful. She was also moved into a room with two roommates because she is doing so well. We are still waiting for the results of the scope, but it will probably be later this evening.

The nurse told me that she was on her tummy and sleeping, and when she checked on her, she had scooted her way up against the glass and was pressing against it. She was still asleep, but I guess she has just squirmed her way up to the door, just like she wanted out. She said she has never had a baby do that before.

I have also been told by several people that she doesn't look like a preemie. She looks just like a normal baby, except that she is tiny. The nurse even told me that.

October 12, 2008

In my excitement yesterday, I forgot to mention that Amaree has to do two things before we can breastfeed. First, she has to have her vocal cords checked. If they are damaged from the ligation, or PDA surgery, then breastfeeding is going to be more difficult. She is having the scope done tomorrow morning and we will know if it is damaged. 15-20% of babies who have had the PDA surgery have one of their vocal cords damaged. We are praying that she isn't one of them. We don't think that she has damage because she has a really strong cry, but we will know more tomorrow.

Secondly, tomorrow is the last day of the steroids. She has to stay on her nasal cannula and not back track and have to go back on C-PAP. She is on .01 of the steroids, and she was below 30% on her oxygen all day today. If these two things are good, then we are on for the breast feeding. We will know more a little later this week.

Andrew did skin-to-skin last night with Amaree. She LOVED it. She cuddled up with him and slept peacefully. Right before that she had an A & B. It stands for Apnea and Bradycardia. It means that she stopped breathing and her heart rate slowed. It was really scary. We think she did it because she was angry. She did it during cares and the nurse had to get her to breathe again. It was a level/grade 2 out of 5. It could have been a lot worse, but she scared us pretty good.

Today, we did skin-to-skin again. She latched for a few minutes but then she started to fall asleep so I didn't try much more. I just held her, but then she started to get fussy and she grabbed my finger and started to suck on it! I just gave her the pacifier and she sucked on it for ever. Then right before we left, the nurse did her cares at 2:00, and she was still sucking on it at 3:30 when we left. It so was much harder to leave her this time after actually having held her and cuddling with her.

I keep praying that she did not have any damage from the surgery and that all goes well this week.

October 11, 2008

**WARNING!!! THIS POST MAY CONTAIN OFFENSIVE BREAST FEEDING LANGUAGE**

This morning we arrived at the hospital quite early hoping to make it in time for rounds. When we arrived, we learned that they had already done the rounds and they decided to take her off C-PAP!!! She was on her nasal cannula. WE GOT TO SEE HER WHOLE FACE!!! ALL AT ONCE!!! We couldn't believe it. Since she was only on the regular cannula and not the high flow, our nurse (Jami- one of our primaries) said that we could do skin-to-skin. This is also known as kanga care or kangaroo care. Basically, you take off all your clothes from the waist up and then the baby gets set on your chest wearing nothing but a diaper.

I had to pump, so we did that first. Then I got to do skin-to-skin with her. Since I had pumped, we thought we would try non-nutritive sucking. It teaches the baby to suck without drowning/choking them. This is generally difficult for some babies to learn, and since they have had a lot of negative oral stimulation they don't like it. We were optimistic because of her current love affair with the binky. When we tried it, she latched without a problem. She sucked for a quite a while before she fell asleep. She actually sucked 1 ml of milk. Then I got to cuddle with her for an hour while she slept. She had a great time and her numbers were great the whole time.

Amaree did so well that we talked about the breast feeding protocol. Right now there are several things that she has to do before she can come home. She is able to do almost all of them. The two things that she still needs to do is breathe and eat on her own. Since she did so well with the non-nutritive, we will probably begin teaching her how to eat next weekend. Once she learns how to eat she gets to come home!!! (Assuming that there are no other major problems) We are seeing the light at the end of the tunnel more clearly now.

I forgot to mention that Amaree has a great little cry. She is learning that when she cries she gets attention.

October 10, 2008

Amaree is doing great on the C-PAP. She is currently at a five, so we are praying that tomorrow she will come off and be on a high flow nasal cannula. Her oxygen has been really low mostly the whole time, around the 23-26% range.

C-PAP is interesting because it is a little cap, with two hoses that come down and a bar that goes across her face and two prongs that go up her nose. Then she has a little nose cover that holds the prongs in place. It doesn't allow the oxygen to escape, but it gives her a little piggy nose. :( She also has to have a chin strap to hold the mouth in a more closed position so the air doesn't escape as much. The pressure makes her eyes a little swollen as well. We really don't get to see her eyes much because of the cap though.

She has been getting very agitated at cares. The C-PAP is quite annoying and she isn't enjoying it, but she is doing great. Andrew was a master tonight at keeping her calm. He took her temp, changed her diaper, changed her sheets, weighed her and kept her from de-sating (needing more O2). She loves daddy! Anything Daddy, she is all about it.

I did notice that she is getting eyelashes! She hasn't had any and they have just started to grow. They are really short and light, but they really make her eyes look much better.

Lex, I thought you would like to know that she is off the study because she is more than 30 days old. If she hadn't had pneumonia she probably still would have been on it, but that was a setback. As for the light at the end of the tunnel, we are trying not to get our hopes up too much. However, we see a faint glowing.

P.S. She is now 1430 grams! ! ! (3 lbs, 2 oz)

October 9, 2008

Taken September 4, 2008

Taken September 6, 2008.

Taken October 5, 2008.

Amaree is doing great again today. Her blood gas was perfect so they moved her down to a 6 on the C-PAP. I don't know how long they are going to leave her there because they don't want to wean too quickly, but she is doing great and her oxygen is around 25%. The nurse said she cried for her! She hasn't been able to cry since she was born. She said it was a nice cry, and she was crying because she needed her diaper changed. Go figure. We are super excited to see her!

October 8, 2008-Part 2

I called to check on her and see how she was handling her C-PAP. She is doing SO well. Even when she gets angry, (the babies don't like the C-PAP-it is irritating to them) she is only at 30% oxygen. Also, she is at a 7 and she is doing so well with it that they are waiting for a blood gas and if it is good then they are going to go down to a 6. They get taken off the C-PAP around a 5, sometimes a 4. If she keeps doing this well we will get to hold her this weekend! I am so excited!!! The nurse (Christine-one of our primaries) said that she is even sleeping and she is taking the Binky and it is calming her still. This is so much better than last time. She didn't sleep or rest at all last time. I really pray that we can charge ahead and not have any more bumps. However, I am going to try not to let my hopes get too high. It is so exciting though!!!

October 8, 2008

Amaree with her hands clapsed while she sucks on her Binky.

A close up of her little face.

Amaree is being extubated today! I am so excited! I am also a little leery because she failed last time. However, that was a month ago, and she had the PDA, her lungs weren't as big, she didn't have the steroids, she was smaller and just weaker. I really hope that this is the real deal and she is able to kick it. C-PAP here we come!

She has been doing great since they fixed the incubator. She started gaining some of the weight back and she has been moved up to 30 Cal on her feedings.

Kellie asked how big she is now. She was born at 1 lbs 15 oz and was 14 inches long. She is currently at 1320 grams or 2 lbs 14 oz. She is also 40 cm or 16 inches. JoEllen also asked when her due date was, and I forgot to answer, but it was December 1. Amaree is gestationaly 32 weeks. Her corrected gestational age is -2 months. The corrected gestational age is used to determine when she should be meeting milestones, when she is 6 months old, she will be 3 months CGA, and that is what they will use to determine her developmental progress.

In honor of today's events, I am uploading a video of me holding Amaree when they changed her bed. I know it is kinda noisy, but the ventilator is noisy. If you watch, you can see Amaree sneeze. You can also see them move the Giraffe around.

October 7, 2008

Amaree's love affair with the Binky. This is the larger Binky. They move up in sizes so they can develop the correct muscles to learn to suck. It is so big!

A lot has happened. First, Amaree has lost some weight, quite a bit actually, around 100 grams (four ounces). This is due to several things. First, the steroids make her loose weight. Secondly, the caffeine makes her loose water weight, and thirdly, her isolette wasn't working quite right and she was cold and had to use some of her energy to keep warm. The good news is that she was able to maintain her temperature on her core or they would have found it sooner, and they fixed the incubator to keep her warm. The water weight is good to come off because a lot of it was in her lungs and making it more difficult to breathe.

She is breathing really well now and is maintaining oxygen of 25%. Humans breathe 21% so it is really close to room air. She also moved back down on her ventilator settings. Her lung x-ray showed that her lungs are really clear-the pneumonia is gone and she is getting stronger.

Her echo showed that the murmur is due to a valve narrowing, if I understood it correctly. They aren't going to do anything for it, and it isn't serious. It is very likely she will grow out of it eventually.

Just look at those fingers!

The last bit of news is that she continues to love her Binky. Several of the nurses have told me that when she is agitated they give it her and she calms down and just sucks on it. We really need to get her off the ventilator so she can really suck on it and learn to feed.

Annie said that Andrew had a small murmur when he was a baby too. She really is his child in so many ways!

Amaree has grown two whole inches! When we put her back in the Giraffe after changing it, she was stretching.

October 6, 2008

I finally got to REALLY hold my baby for a few minutes while they changed her isolette out. She is SO beautiful!

Andrew also got to hold her. She opened her eyes for him. I think she is so in love with him, and he is certainly in love with her!

This is her incision from her heart surgery. It looks really good in person, and really red on camera. You can see that it isn't that big and it looks really clean.

Amaree had a busy morning. She had a blood gas, a heart ultrasound, and an x-ray. The gas wasn't as great as they wanted, and they wanted one more rib showing on the x-ray so they moved up on one of her settings. That means that she had gone down four points, but is back up one. She still moved really well, and is down on one of her other settings. They are still talking about extubating soon. We really want this to happen!

The ultrasound was for a murmur that they were hearing in her heart. They don't think it is her PDA or anything like that. However, they check everything and so it is great that they are going to take a look at her heart and see what is causing it. They aren't too concerned, but it will still be nice to know what is going on in there.

October 5, 2008

Amaree is down another two whole points on her settings!  This has been really encouraging for us.  We almost feel this is too good to be true.  She is getting so big and strong.  They really hope to get her off the ventilator soon.  I found out something encouraging also.  I thought we were going to have to be on the C-PAP for a really long time.  However, they said that one to two weeks is a really long time for a baby to be on the C-PAP.  I had thought that Amaree would be on the C-PAP for weeks and weeks, but it sounds like they are really pretty good at getting off the C-PAP.  They say that it irritates them and they get off of it.  

Amaree is so strong, she can lift her head!  We have seen her do it a couple of times.  When she gets too much secretions in her tube she gets upset and we have seen her lift her head up off her bed and hold it up for a few seconds.  It is a good thing she is going to get off the vent soon because when she gets a little bit bigger and stronger she can extibate herself.

OH I learned something of mine that she has! ! !  Finally!  Okay, so Amaree has a Mitchell stomach.  She gets so ornery whenever her tummy gets empty.  She feels much better once she has eaten.  If she had an Andrew stomach, she could go for hours and hours without food and not even notice.

October 4, 2008

Amaree is having a good day, the steroids seem to be working well. Her oxygen has been really low all day, in the 20's and 30's, and so they have been able to wean quite a bit. She looks great, and has been really calm. She hasn't been as awake today, but she has been doing well, so we will take it. She has decreased on her ventilator settings two whole points (huge improvement).

She has made it over 3 pounds (she is a fatty!). They started Amaree on the steroids yesterday, and today we both swear she is bigger than she was last night.

Lex asked if she would be on the study still when she came off the ventilator, and she will be when she comes off the ventilator. The study was to see how well babies do on C-PAP vs NIPPV. They are essentially the same thing, but the NIPPV gives an extra puff of air with pressure, while the C-PAP just gives pressure.

Amaree has also been doing well with her feedings and they have increased to 25 ml. Yesterday and the day before she was having some tummy problems and we think it was the fortifier that was causing the problems. They switched formulas and she is doing so much better. Her little tummy is much less bloated.

We are very encouraged by her progress. We are just praying that there will not be any more bumps in this part of the road. We know that there will be more bumps, but if we can just get her off the ventilator, we will have conquered one more mountain!

October 3, 2008

Last night Amaree had a really big belly. They were concerned about some problems, but it appears to be gas and some intolerance to the fortification. We were glad that she didn't have problems because they have been waiting for us to change her bed and if she did have another infection then they didn't want to change the bed right away. Thank heavens it doesn't appear to be anything more than a little intolerance and gas. They are going to change the fortification to a different kind and see if she can tolerate it better. We are waiting for her to have a huge blowout. It is going to be messy.

Andrew and I both got to hold Amaree last night. This time for REAL! When they change the beds, they have to take them out of the incubator and then move it out, move the new one in, and then put her back. So we actually got to HOLD her while they did this. It was great. She is so tiny, but she was awake and looking at us. I will post pictures soon. It was amazing.

She has not moved on her ventilator, so they have decided to take a more aggressive approach to her treatment. Amaree is going to be getting some steroids to help her lungs develop. It is a very small amount, and it is only going to be for a few days. Andrew hates that ventilator and we are feeling like at least we are doing something. It is hard to just wait when the machine can cause permanent damage the longer she is on it.

October 2, 2008

I really like this picture, the only problem is that it looks like she has black eyes. They didn't look like that in person.

Amaree has gained another ounce! One more and she will have gained a whole pound, two more ounces and she will be three whole pounds!

She had another x-ray this morning, and it looks a little bit better than the last one, but they are still concerned about some lobes being collapsed. I didn't know that lobes could collapse, but I guess it is common in these little babies. She hasn't moved on her ventilator settings, but hopefully we can start moving them down soon.

They have waited to change her bed so that we could be there. Apparently it is a little bit of a process, but it means that we get to hold her! Hey, I will take what I can get when it comes to holding her.

I hear that Amaree looks like a normal size baby from the pictures. In this video, I try to take her Binky because I thought she had fallen asleep. You can see how small she is compared to my hand and how much she loves that Binky!

October 1, 2008

I love this picture of her sucking on her Binky and her hand over it, keeping it in. She loves that thing.

First, I would like to apologize for not getting this updated yesterday! Somehow the day just escaped us and we didn't get it updated.

Here is the latest on Amaree: She is doing really well. They have increased her feedings, to 27 Cal and 22 ml. This means that they are fortifying the milk and giving her some extra fat. The past two days she has spent one hour each day with the Binky! She really enjoys it and it is really good for her to be strengthening those muscles. This is really encouraging for us.

She still has a lot of secretions, but partially it is from the ventilator. Her settings are still the same, but they started her on Caffeine again so they are hoping to start weaning again. The nurse said she is doing really well on breathing on her own for a few minutes. They turn the ventilator off for a few minutes when they do cares to listen to her lungs and her stomach and see how she is doing, and she does really well when they stop the machine. She just needs to get a little stronger!

She weighs about the same, and that is why they have added some extra calories to the milk. They want her to get bigger.

Amaree also had another blood transfusion yesterday. They said she is doing much better now that she had it. She looks better and is feeling better. They have to give her blood quite frequently, I don't know how much she has had, but I know that she has quite a few. One of the reasons that they have to give her blood is that she doesn't make enough just yet to cover what they take. They are always taking a little here and a little there to test blood gases, hematocrits, etc. They don't take much, but she doesn't have much, so she always does better when she gets a little boost.

Amaree also had a routine eye exam today. We don't have the results of it just yet, but the results from her head ultrasound came back normal. The eye exam is just routine, to make sure that there are no problems, so I am not too concerned about it.

Also, I don't think I told about this, but one of the nurses told us that she had to change Amaree's IV. She started to do the prep work, and Amaree was awake. She said that Amaree knew what was happening, and gave the nurse a look that said, "Please don't do it!". The nurse said, "I'm sorry, but I have to, honey." Then Amaree puckered her lower lip and pouted! The nurse said that in all her years there she has never had a baby do that and it broke her heart to have to poke her to get that IV in.

So since we didn't get things posted yesterday, here is another fun video and a few pictures:

We don't get to see her with her eyes open very much, but she was really alert this day, so here she is!

We took her Binky out and she started to suck on her thumb. I know that this is pretty common, but it was the first time that we had seen it. We thought that it was pretty cool!

Here she is, resting peacefully.