Monday, September 3, 2012
L's Surgery
Lorelei's surgery went great. Of course they knew it needed to be done but after doing it they were really glad they did it when they did. The PDA was much bigger than they thought and it was really affecting one lung. They had to use 2-3clips, larger clips than they usually use. They temporarily collapsed her left lung to gain access to her heart, but it didn't require a chest tube. She is even off her jet machine! They have to keep her intubated for a few days just in case (tube is in her mouth but its only connected to the oxygen machine, the jet machine is off). And she went down a lot on her oxygen settings as well! During her surgery she was completely under, but she jumped (sounds familiar aka my csection)... so they had to paralyzer her which lasted 4hrs. She gets morphine and other pain meds every 3hrs as needed. I couldn't get over how well she looked after. I don't know if it was the surgery, the open crib, the lack of vibration from the jet, or combo of all, but she looked more comfortable and peaceful.
Surgery in 6-1/2hrs
Lorelei's surgery is tomorrow (well later today actually) at 7am. I am so worried... I don't see how I can sleep.
Sunday, September 2, 2012
Labor Day Weekend Sponsored by Ronald McDonald House Charities
This past Labor Day weekend we spent at Ronald McDonald House for the first time since Ainsley and Lorelei were born. My mom came with me Thursday and planned on staying until late on Monday. Ronald McDonald was full so they put us in a hotel, but we still have full access to the RMHouse and everything they offer. I was looking forward to it so much and so glad we got to go.
Thursday: Dropped the kids off with their Uncle Kevin (Grandma Carol was taking over after work and keeping them for the whole weekend except whenever Brian might be around). Picked up Mom and headed to see the girls. The nurse have shift changes from 6-8pm so we cant go in. We weren't going to get down there until about 6pm so we checked in at RMHC/hotel first. Around 8pm we went to see the girls. Our favorite nurse Penny - who is the girls primary during the day - was working for half of the night shift too. We had a good time with the girls. Since they are final closer together I held Ainsley as close as I could to Lorelei's isolette. We put some preemie size onesies on Ainsley that were sent to us from some very nice thoughtful ladies.
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Friday: Got to talk to Dr. Phillips for an overall update. She said that Ainsley was going to get off the vent and on CPAP a few times now but every time decided that she isn't ready just yet. She said that Lorelei's last day of antibiotics will be Sunday (09/02) so she should be getting the surgery on Mon or Tues (depending on what the surgeons decide since its a holiday on Mon. Dr. Phillips even gave me her cell phone number and said I can call any time if I have any questions. All day Lorelei's jet machine kept messing up but it wasn't affecting her at all. Oh and we took some pictures of Ainsley's birthmark we recently discovered. It's on her left inside arm near the elbow.
Saturday: When I first went into the room I went to see Lorelei first. As soon as I touched her she started to have a fit. I decided to leave her alone a little bit and see her later. I got to do skin-to-skin with Ainsley for about three hours or so. During that time she had a lot of apnea episodes so Dr. Phillips checked on her. Found out her caffine prescription expired so she reordered it. She said that the blood transfusion she needs will only help the desats not the apena but if she keeps doing both she will do a transfusion tomorrow. When I went to touch Lorelei again she started to throw a fit again.. And I know not to take it personal because she is going through a lot - but its kind of hard not to - its hard not being able to touch your child. When we went back after shift change the nurse gave Ainsley and "bath" and put her in a new onesie and put her new socks on. She looked so cute.
Sunday: As soon as we got into see the girls Penny told us that the surgeons wanted her to page them when we got there so they can come talk to me. Because they want to do Lorelei's PDA ligation surgery tomorrow. Before we got to speak to them and find out time or any other details... Mom and I were next to Ainsley's crib when we thought we heard a noise (Mom says it sounded like a kitten), I didn't think anything of it but Mom was looking at Lorelei like she was trying to figure out what was wrong. I checked on Lorelei and she was throwing another fit, I noticed she had of saliva bubbles that gets her upset a lot so I suctioned her then I noticed... I can hear her crying! With her jet tube she isn't suppose make any noise so I told Nurse Penny right away. It was still in her mouth so the end of it must not have been positioned right. The RT had to come in and he kept going "get a dr in here now because otherwise I am just taking it out". They kicked us out of the room. Later Dr. Phillips came out to the waiting room patio to let us know everything went find and they put the tube back in so it can be in when she has the surgery. When we went back into the room Penny said Lorelei was breathing great on her own before they got the tube in. She might not need it except they will have to put it in before the surgery anyways so they are trying to leave it in. We found out she is getting the surgery at 7am. Even though its suppose to be "minor" surgery I am very nervous.
Thursday: Dropped the kids off with their Uncle Kevin (Grandma Carol was taking over after work and keeping them for the whole weekend except whenever Brian might be around). Picked up Mom and headed to see the girls. The nurse have shift changes from 6-8pm so we cant go in. We weren't going to get down there until about 6pm so we checked in at RMHC/hotel first. Around 8pm we went to see the girls. Our favorite nurse Penny - who is the girls primary during the day - was working for half of the night shift too. We had a good time with the girls. Since they are final closer together I held Ainsley as close as I could to Lorelei's isolette. We put some preemie size onesies on Ainsley that were sent to us from some very nice thoughtful ladies.
.JPG)
Friday: Got to talk to Dr. Phillips for an overall update. She said that Ainsley was going to get off the vent and on CPAP a few times now but every time decided that she isn't ready just yet. She said that Lorelei's last day of antibiotics will be Sunday (09/02) so she should be getting the surgery on Mon or Tues (depending on what the surgeons decide since its a holiday on Mon. Dr. Phillips even gave me her cell phone number and said I can call any time if I have any questions. All day Lorelei's jet machine kept messing up but it wasn't affecting her at all. Oh and we took some pictures of Ainsley's birthmark we recently discovered. It's on her left inside arm near the elbow.
Saturday: When I first went into the room I went to see Lorelei first. As soon as I touched her she started to have a fit. I decided to leave her alone a little bit and see her later. I got to do skin-to-skin with Ainsley for about three hours or so. During that time she had a lot of apnea episodes so Dr. Phillips checked on her. Found out her caffine prescription expired so she reordered it. She said that the blood transfusion she needs will only help the desats not the apena but if she keeps doing both she will do a transfusion tomorrow. When I went to touch Lorelei again she started to throw a fit again.. And I know not to take it personal because she is going through a lot - but its kind of hard not to - its hard not being able to touch your child. When we went back after shift change the nurse gave Ainsley and "bath" and put her in a new onesie and put her new socks on. She looked so cute.
Sunday: As soon as we got into see the girls Penny told us that the surgeons wanted her to page them when we got there so they can come talk to me. Because they want to do Lorelei's PDA ligation surgery tomorrow. Before we got to speak to them and find out time or any other details... Mom and I were next to Ainsley's crib when we thought we heard a noise (Mom says it sounded like a kitten), I didn't think anything of it but Mom was looking at Lorelei like she was trying to figure out what was wrong. I checked on Lorelei and she was throwing another fit, I noticed she had of saliva bubbles that gets her upset a lot so I suctioned her then I noticed... I can hear her crying! With her jet tube she isn't suppose make any noise so I told Nurse Penny right away. It was still in her mouth so the end of it must not have been positioned right. The RT had to come in and he kept going "get a dr in here now because otherwise I am just taking it out". They kicked us out of the room. Later Dr. Phillips came out to the waiting room patio to let us know everything went find and they put the tube back in so it can be in when she has the surgery. When we went back into the room Penny said Lorelei was breathing great on her own before they got the tube in. She might not need it except they will have to put it in before the surgery anyways so they are trying to leave it in. We found out she is getting the surgery at 7am. Even though its suppose to be "minor" surgery I am very nervous.
Not my girls
Starting this past Thursday, my mom and I have been staying at Ronald McDonald so I can see the babies more. (I'm going to post about our weekend here later). At first it was really great being here and seeing the girls all day, several days in a row. But now, its just getting to me really hard and in some since I wonder why am I even here. My girls don't feel like my girls, especially Lorelei. I go into their room, say "hi" to Lorelei, hold (usually skin-to-skin) Ainsley for hours, say good-bye to her, say good-bye to Lorelei, and that's it. I can't hold Lorelei, which is hard enough, but now I can't even touch her. It's not that I am not allowed to, but every time I do she starts freaking out. She "cries" and "screams" (no tears or sound due to the tube) and turns dark red to a purple or black color and starts moving around a lot which just hurts her more because of the tube, etc. She does it every time, so I can't even touch her. When I am in the chair holding Ainsley I am always looking at Lorelei - but even then I usually can only see maybe her foot or hand and part of her head. She is rarely awake too. I don't know what happened to that cute little girl with the big bright eyes. I feel like a bad parent, or not a parent at all .. at least not to them. Lorelei is suppose to have surgery on Monday or Tuesday.. but that still seems too far to me and its only Saturday night. She needs to start getting better NOW. And she can't even start to get better in the slightest way until she gets the surgery. And even Ainsley is going nowhere. Still not on the CPAP like they have almost put her on many times, tried nippling once on Thursday - she only did 2ml. - And I am still really upset that they didn't tell us they were going to do that, but I requested many times that they let us know ahead of time so we could be there. - They just let her sleep through all of her feedings, so when they do try to nipple her again, she will be too sleepy. And she isn't going to ever get and interest in it because all she knows is that she sleeps and still get food in her tummy.
Then I had to call Brian... big mistake. He is out at the bar drinking instead of being here. He clams he is coming her tomorrow afternoon, but I said (just like I always say when he is out late when we have plans the next day) "no you are at the bar which means you will sleep most of the day away tomorrow" and he got pissed off. I just really can't take any of this anymore. I think I'm going to take a shower just so I have a place to go cry.
Then I had to call Brian... big mistake. He is out at the bar drinking instead of being here. He clams he is coming her tomorrow afternoon, but I said (just like I always say when he is out late when we have plans the next day) "no you are at the bar which means you will sleep most of the day away tomorrow" and he got pissed off. I just really can't take any of this anymore. I think I'm going to take a shower just so I have a place to go cry.
Thursday, August 23, 2012
Yesterday, via my mom's suggestion, I made Ainsley and Lorelei a Facebook page for support and also a donations page. Here are the links below:
http://www.facebook.com/ainsleylorelei
http://www.giveforward.com/ainsleylorelei
http://www.facebook.com/ainsleylorelei
http://www.giveforward.com/ainsleylorelei
Monday, August 20, 2012
6 Weeks Old
Today my babies are 6 weeks old. Tomorrow they will be 34 weeks gestational.
Ainsley weights 4lb 1oz! Today she started gavage feedings! That is were they put it in the tube that goes into your mouth - its not longer slowly going in like an IV would. She is getting 37ml every 3hrs. So far she is handling it great too - haven't spit any up, tummy is soft, and she is digesting all of it. If she keeps doing good then she just needs to get off the NIPPV (type of oxygen machine) and she can try a bottle. She can still be on oxygen but not pressurized air like she has now. They are putting the settings down a little in the morning.
Lorelei weights 4lb 11.5oz - although a lot of it is water weight. She isn't getting any better but not getting worst either. Her settings on the NIPPV or jet machine are not going up or down. She isn't getting any milk at all - at least until the 26th. And so far it looks like they wont be doing the surgery until sometime after she is done with her antibiotics (the 26th).
Ainsley weights 4lb 1oz! Today she started gavage feedings! That is were they put it in the tube that goes into your mouth - its not longer slowly going in like an IV would. She is getting 37ml every 3hrs. So far she is handling it great too - haven't spit any up, tummy is soft, and she is digesting all of it. If she keeps doing good then she just needs to get off the NIPPV (type of oxygen machine) and she can try a bottle. She can still be on oxygen but not pressurized air like she has now. They are putting the settings down a little in the morning.
Lorelei weights 4lb 11.5oz - although a lot of it is water weight. She isn't getting any better but not getting worst either. Her settings on the NIPPV or jet machine are not going up or down. She isn't getting any milk at all - at least until the 26th. And so far it looks like they wont be doing the surgery until sometime after she is done with her antibiotics (the 26th).
Sunday, August 19, 2012
A little behind
I am behind on updates. I am sorry. So I took and edited the info from my Facebook updates to family.
Friday, August 3, 2012
Lorelei has an infection. All of the blood work hasnt come back yet so they don't know what type of infection yet but they are treating her with 3 different antibiotics. Of course we don't know if thats what is causing the problems or what but it might be so its a start at lease. It could also be that some levels in her blood are really low and she is getting a transfusion. I dont like that she has an infection and everything but hopefully it isnt serious and will be gone quickly and solve the breathing problem at the same time. They also have her on NBM (nothing by mouth) so she isnt getting any milk at all right now. Hopefully that will give her time to get a lot of the air/gas out so her tummy can go down. She is also getting x-rays every 12hrs.
Ainsley on the other hand is doing great. She is up to 8.1ml/hr feedings. They took out her IV. She was 'tested' today to see if she is ready to start nippling. They want to test her several times before she gets her first bottle. When they tested her she was too sleepy. But I am just happy she is doing well enough to even be tested. They are testing her again in the morning.
Saturday, August 4, 2012
I hate nurses sometimes.... I called to check on the girls (hopefully going to visit them later today) and Lorelei's nurse kept referring to her as a "he" and didn't give me any real information at all .. she spoke for like a minute before passing me on to Ainsley's nurse. And that he didn't really tell me anything either which I know there isn't really anything going on with her but still. Total phone call was 4min - its usually 10-15minutes.
Tuesday, August 7, 2012
Lorelei is having too hard of a time with everything (lots of water weight including fluid in her lungs like I had at the hospital, air in her belly, the infection, etc) so she wasn't breathing well at all. They put her back on the jet machine that she was on before and it is doing most of her breathing for her. This way she isn't working too hard and using up too much energy while trying to get better. Her belly is looking five times better (according to the nurse). Ainsley is doing great, she is at her max on feedings for her weight of 3lb 1.5oz - 8.1ml/hr. She had an eye exam today and everything looks great. She just sleeps all day like a typical baby.
Thursday, August 9, 2012
- Ainsley Isabella is now 1 month old. Its been 31days in the NICU. She is the smallest but doing great. She currently weights 3lb 3oz - she has gained 12oz. She is off all IV fluids and IV meds. On full feedings 9.3ml/hr. through a tube. She is still on the oxygen machine but doing good. She got to wear clothes for the first time a few days ago. They tested her to see if she is ready to nipple a bottle and she did good at first but then she had enough after a while.
In the photo: Yesterday she was wide awake for about an hr and kept trying to pull her oxygen tube out. She would get really mad when I put it back in her nose too.
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- Lorelei Annabell is now 1 month old. Its been 31days in the NICU. She is currently 3lb 12oz - but a lot of it is water weight (technically she has gained 1lb 5oz). She is not on any feedings in order to rest her tummy. Her tummy is enlarged and full of air mostly. She was on the same oxygen machine as Ainsley but now she is also back on the jet machine. That is due to fluid in her lungs and an infection that is being treated with antibiotics. We also just found out she has a thyroid problem.
In the photo: She only opened her eyes for a little while. I hate when she is on the jet because she can only lay on her back. The IV line in her head doesn't help. Her tummy has actually gone down a lot and she has lots a lot of the water weight.. but she still looks big.
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Wednesday, August 15, 2012
37 days old - Just spoke to the doctor about Lorelei. Looks like the infection might be gone.. but they want to repeat the test several times to make sure it keeps coming back as negative. They started feeding her 0.1ml/hr last night until they found blood in her stool. She had an echo exam yesterday and results show that her PDA is wide open again. The medication will not work this time... so she has to have surgery on her heart maybe Saturday if not Monday. They say its 'minor' surgery and only last about 30minutes to close the whole, but it doesn't make me feel any better. Apparently, the infection caused the PDA to open up (since it wasn't completely closed anyways), which caused the fluid (its actually blood) in her lungs, so they didn't give her as much IV fluids, which could be causing her tummy/intestines to not get enough fluids/nutrition, which could be causing the blood in her stool. And that or the infection itself could be why her tummy is distended, or it could be something else. Oh and her picc-line was infected also. Once the doctors are 'satisfied' with everything they will wait a week before starting her feedings again.
Ainsley on the other hand is doing great. She is getting fed 32ml. throughout 1.5hrs then rest for another 1.5hrs before doing it again. And she is handling that fine. The other day she kept "forgetting to breath", but its because she wasnt ready to go so low on her oxygen machine settings. So they put the settings back up and will keep her there for a few days before slowly taking her down again.
I just can't do this. I worry so much about both of them (especially Lorelei) all the time. Even if they were doing great I would still be going nuts because they are suppose to be with me, all the time. And now I only get to see them once a week for maybe 2hrs or so. Today has been a week since I seen them and it wont be until Friday when I do see them. I can't do this.
Friday, August 17, 2012
We saw the babies yesterday and Rhiannon & Konnor got to see him too!
Friday, August 3, 2012
Lorelei has an infection. All of the blood work hasnt come back yet so they don't know what type of infection yet but they are treating her with 3 different antibiotics. Of course we don't know if thats what is causing the problems or what but it might be so its a start at lease. It could also be that some levels in her blood are really low and she is getting a transfusion. I dont like that she has an infection and everything but hopefully it isnt serious and will be gone quickly and solve the breathing problem at the same time. They also have her on NBM (nothing by mouth) so she isnt getting any milk at all right now. Hopefully that will give her time to get a lot of the air/gas out so her tummy can go down. She is also getting x-rays every 12hrs.
Ainsley on the other hand is doing great. She is up to 8.1ml/hr feedings. They took out her IV. She was 'tested' today to see if she is ready to start nippling. They want to test her several times before she gets her first bottle. When they tested her she was too sleepy. But I am just happy she is doing well enough to even be tested. They are testing her again in the morning.
Saturday, August 4, 2012
I hate nurses sometimes.... I called to check on the girls (hopefully going to visit them later today) and Lorelei's nurse kept referring to her as a "he" and didn't give me any real information at all .. she spoke for like a minute before passing me on to Ainsley's nurse. And that he didn't really tell me anything either which I know there isn't really anything going on with her but still. Total phone call was 4min - its usually 10-15minutes.
Tuesday, August 7, 2012
Lorelei is having too hard of a time with everything (lots of water weight including fluid in her lungs like I had at the hospital, air in her belly, the infection, etc) so she wasn't breathing well at all. They put her back on the jet machine that she was on before and it is doing most of her breathing for her. This way she isn't working too hard and using up too much energy while trying to get better. Her belly is looking five times better (according to the nurse). Ainsley is doing great, she is at her max on feedings for her weight of 3lb 1.5oz - 8.1ml/hr. She had an eye exam today and everything looks great. She just sleeps all day like a typical baby.
Thursday, August 9, 2012
- Ainsley Isabella is now 1 month old. Its been 31days in the NICU. She is the smallest but doing great. She currently weights 3lb 3oz - she has gained 12oz. She is off all IV fluids and IV meds. On full feedings 9.3ml/hr. through a tube. She is still on the oxygen machine but doing good. She got to wear clothes for the first time a few days ago. They tested her to see if she is ready to nipple a bottle and she did good at first but then she had enough after a while.
In the photo: Yesterday she was wide awake for about an hr and kept trying to pull her oxygen tube out. She would get really mad when I put it back in her nose too.
.JPG)
- Lorelei Annabell is now 1 month old. Its been 31days in the NICU. She is currently 3lb 12oz - but a lot of it is water weight (technically she has gained 1lb 5oz). She is not on any feedings in order to rest her tummy. Her tummy is enlarged and full of air mostly. She was on the same oxygen machine as Ainsley but now she is also back on the jet machine. That is due to fluid in her lungs and an infection that is being treated with antibiotics. We also just found out she has a thyroid problem.
In the photo: She only opened her eyes for a little while. I hate when she is on the jet because she can only lay on her back. The IV line in her head doesn't help. Her tummy has actually gone down a lot and she has lots a lot of the water weight.. but she still looks big.
.JPG)
Wednesday, August 15, 2012
37 days old - Just spoke to the doctor about Lorelei. Looks like the infection might be gone.. but they want to repeat the test several times to make sure it keeps coming back as negative. They started feeding her 0.1ml/hr last night until they found blood in her stool. She had an echo exam yesterday and results show that her PDA is wide open again. The medication will not work this time... so she has to have surgery on her heart maybe Saturday if not Monday. They say its 'minor' surgery and only last about 30minutes to close the whole, but it doesn't make me feel any better. Apparently, the infection caused the PDA to open up (since it wasn't completely closed anyways), which caused the fluid (its actually blood) in her lungs, so they didn't give her as much IV fluids, which could be causing her tummy/intestines to not get enough fluids/nutrition, which could be causing the blood in her stool. And that or the infection itself could be why her tummy is distended, or it could be something else. Oh and her picc-line was infected also. Once the doctors are 'satisfied' with everything they will wait a week before starting her feedings again.
Ainsley on the other hand is doing great. She is getting fed 32ml. throughout 1.5hrs then rest for another 1.5hrs before doing it again. And she is handling that fine. The other day she kept "forgetting to breath", but its because she wasnt ready to go so low on her oxygen machine settings. So they put the settings back up and will keep her there for a few days before slowly taking her down again.
I just can't do this. I worry so much about both of them (especially Lorelei) all the time. Even if they were doing great I would still be going nuts because they are suppose to be with me, all the time. And now I only get to see them once a week for maybe 2hrs or so. Today has been a week since I seen them and it wont be until Friday when I do see them. I can't do this.
Friday, August 17, 2012
We saw the babies yesterday and Rhiannon & Konnor got to see him too!
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