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:

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).

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.

 - 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.

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!

Thursday, August 2, 2012

Update - Worried about L

This is the first time I am actually worried about one of my girls.  Today they are 3weeks 3days old / 31weeks 2day gestation.

Ainsley is doing great.. she rarely has D-Sat's (oxygen goes too low) and hasn't had any Brady's (heartrate goes too low) in over a week. She is doing so good they are taker her off the IV fluids sometime after 8pm tonight.  The other day she weighted 2lb 14oz (up 11oz from birth weight)

Lorelei on the other hand has been having a problem with her abdomen being enlarged. X-ray shows that its just trapped air. They think its from being fed continuously through the feeding tube which can also push in air but it doesn't have a way out. They are still feeding her this way but not going up on the amount until her tummy is better. Now she has another issue. She use to have 1 D-Sat and/or Brady per shift (so 2 in 24hrs). Now she is having 3-5 per shift. She full on stops breathing (holding her breath?) and the nurses have to wake her up by either by making noise or picking her up making her sit up. And its only after that she starts breathing again. They went back up on some of the oxygen settings and its not helping. They told me this isn't uncommon but they don't know why she is doing it. I am worried.  She weights 3lb 5oz (up 14oz).