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!

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).

3 Weeks Old and 3 Pounds!

Today the babies are 3 weeks old.  Last night Ainsley weighted 2lb 12oz (up 9oz) and Lorelei weighted 3lb 3oz (up 12oz)!  I am so happy and shocked she is over 3lbs.  They are both doing okay on their oxygen.. it doesn't really changes, always going up and down.  They thought they heard a heart murmur on Lorelei but echo didn't show anything.  They did see that the PDA was still there but it was very small, almost closed.  Both of their continuous feedings have been slowly going up.  Ainsley is up to 3.8ml/hr and Lorelei was up to 4.8ml/hr until her tummy got distended.  So they took for off for about a day, then started her back up later at 3.2ml/hr and took out the protein they were adding to the milk.

Speaking of milk.  I have been pumping and doing much better than I did with Rhiannon and Konnor.  Until today.  Yesterday I got engorged and got a lot out.  Then in the middle of the night last night I only got a total of 15ml, if that.  And so far today I didn't get any at all.  It is also starting to hurt really bad.  Also, if I can be completely honest, I have been going nuts with all this pumping.  First it's a pain just doing it every 3hrs or so, it feels like I'm always doing it.  And sometimes I wish I could just stop doing it.  But then thinking that makes me feel really bad, like I'm a bad mom, because it's the only thing I can do for my girls right now - even thought it doesn't feel like it's even for them at all.  So I feel extremely bad right now.  I am still pumping hoping it will pick up again.. but I don't know if it will.

I got to hold Lorelei for the first time on July 24.  I was so happy. The other day I also got to hold Ainsley skin-to-skin for 2hrs.  And last night Brian held Lorelei for the first time also.  That was the first time he got to hold either one of them.

Ainsley

Lorelei

L's off the jet machine

Didn't get to visit the girls today but called to check up on them.  Lorelei is off the jet machine!!  She is only on the CPAC now which also means I can hold her next time I see her!!  I am hoping to go down there tomorrow, just need a babysitter.  She is doing good on just the CPAC so far and getting 1.8ml/hr feedings.  Ainsley is doing good about 21-23% on her oxygen and getting 1ml/hr feedings.

Got to hold A!

I got to go see the girls with Carol (mother-in-law) and my mom.  They were doing good everything was pretty much the same as it has been.  But I got to hold Ainsley!!  It was such a great moment.

Ainsley

Lorelei

The Girls' Birth!!

My identical girls were born on Monday, July 09 at 27weeks 6days.

Ainsley Isabella 2lb 3oz 14.5in at 10:54pm

Lorelei Annabell 2lb 7oz 15in at 10:55pm

 

Here is the story (trying to keep short but will probably be long):

July 3, 9am - I felt a little wet like I peed a little.  I went to the doctor and was told everything was find but to go to L&D right away if it happened again, just in case.

July 4, 3am - I woke up to a big gush of fluid, and continued to gush all the way to the bathroom and all over.  Rushed to L&D were they confirmed Baby A's sac completely ruptured.  I was having contractions 5 or more minutes apart.  Which wasnt surprising since I was just in L&D that weekend for contractions as well.  I was told I had to stay laying completely back (but could go on my sides too) just not allowed to sit up at all, even to eat or drink.  I was put on a fast IV plus lots of IV meds (antibiotics and stuff to stop the contractions).

July 5, 10pm - I started having a hard time breathing and was put on oxygen but it wasnt helping.  They were thinking the contraction meds were relaxing my lungs as well.

July 6 - Found out I had fluid in my lungs, around my heart, and even around my veins.  If I didnt get better they would have to deliver so they trasferred me to the nearest children's hospital (same one my first set of twins were born at).  There, they were worried something was wrong with my heart because the medication they gave me wasnt flushing all the fluid out.  Turns out... it was simply the fact that the first hospital was literally drowning me with too many IVs and meds.

July 8, 4pm - I was feeling much better but they were getting worried about my contractions so wanted to keep me on the monitors for a while and I wasnted to eat or drink.  A few hours later, I started bleeding.  I thought for sure they would be born that night.  Oh was also giving two bags of blood due to sever anemia.

July 9, 8pm - They finally said I was going in for a csection due to placenta abruption (placenta seperating from the uterus), which is why I was bleeding of course.  When I finally went in, they wanted me on just an epidural because the other stuff could cause more problems with my breathing and other things like that.  They kept having a hard time getting me numb all the way... I was numb at the bottom of my tummy.. but it wasnt going high enough up.  Finally things looked good and they cut me open (didnt feel anything except them shaking my body around a little) and then as they started to actually open me up I could feel everything on the top half... I was screaming out in pain - its like nothing I could ever describe - so they put me to sleep.  I hate that DH had to leave the room and could see the babies being born.

Ainsley's apgars were 2/4/9 - so she was doing good at all at first and quickly starting looking really good. Lorelei's apgars were 8/9 so she was great.  They were both on oxygen but doing well.

They are now 11days old.  Ainsley is on the CPAC (as of 07/15 otherwise she was just on regular oxygen), was having blood in her stool but it looks like it was blood she swalled from the placenta abruption, had one blood trasnfusion due to anemia, stated a continuous feeding of my breastmilk through a pump thats like the IV pumps currently giving her 0.3ml/hr. She is currently 2lb 5.6oz - more than her birth weight! Lorelei is on the CPAC and another breathing machine (dont know the name), had a tube in her chest after her left lung collapsed but that was taken out 07/16, also had a blood transfusion, also started feeding currently at 0.6ml/hr.  She is currently 2lb 6oz - only 1oz less than her birth weight.  The most serious thing both girls had is called PDA, its an opening between the lungs and heart that is suppose to close at birth.  Theirs still had a very large opening.  After a series of meds, they finally got a followup echo exam that showed both were almost completely closed - so no surgery!!!  Head ultrasounds came back normal, so no brain bleeds!  As far as I can tell, if everything continues as it is right now, all we have to focus on at this point is getting off the oxygen and eventually feeding. It will still be a long road ahead even with just those things.. but it makes me so happy nothing is actually wrong right now.

AINSLEY

LORELEI

L&D

Starting Saturday (26wks4days) afternoon I started feeling pain.  My hips mostly, just sore.  At first I figured it was from van shopping all day on Friday and it would go away after a while.  As the day went on it got a little worst until the very end when it was getting really bad.  I took a shower thinking the warm water would help with the soreness - but it got even worst when in the shower.  That was when it really starting hurting in my lower back.  That was when I really got worried.  I only felt a few contractions throughout the day - but with my first pregnancy I wasn't feeling contractions at all... just pain in the hip.  So I told Brian that I should probably go to the hospital.  This was already around midnight.  He was at work so his mom, Carol, came over to watch the kids and give me her car.  I got to L & D around 2am.  Pretty much right away found out I was having contractions 2-4min apart and dilated (up to) 1 cm.

They did an fFN (Fetal Fibronectin) test.  This test checks for the fFN protein which basically helps stick the baby to the uterus.  So if extremely little to no protein is present then the baby hasn't started 'unsticking' yet.  Basically a positive results mean you will deliver within two weeks.  And a negative result means you most likely won't - but can still go either way.  My results came back negative - so that is good still.  After monitoring me for a long time they finally gave me a shot to stop my contractions (I'm never good with all of the names of different medications).  The contractions slowed down a lot, but didn't stop, so they gave me another one.  I had them before with my first pregnancy and I really don't like them.  I naturally have a high pulse and they make my heart race even more, and my body shack.  I only feel "okay" if I lay completely still and don't move even the slightest.  They actually wanted to give me a third shot but my pulse was too high - around 140bpm.  My OB came in the morning and checked me out... since my contractions seemed to have stopped and I didn't dilate anymore so he sent me home.  I wasn't out of there until 11am.

So its started already... this is a sign that I can end up on bedrest at any time and we are not ready at all.