Fighting...

Brian ended up staying home from work because he is sick.  I really hope he gets better soon because I want him to see the girls on Sunday and maybe Monday.  We got in a big fight about how it seems like he don't care about seeing the girls.  I know he works a lot but he doesn't seem to make much of an effort to see them when he is off.  The day of Lorelei's surgery he got about 20mins or so of sleep.  He feel asleep in the waiting room after we talked to the surgeon but before the doctor and a few other people came to talk to us.  After I talked to them by myself and they told me we can see her now I tried to wake him up.  He wasn't really getting up so I just left.  Apparently he called me a bitch or that I was bitchy, either way I don't think its bitchy to want to see your daughter right after surgery.  And I wasn't going to wait for him - he did follow right behind me though.  And I told him how all that made me feel.  And how I feel like most parents don't complain about gas or being 'too tired' to see their kids in the NICU - they see they every chance they get.. with little to no sleep, and definitely not going to the bar and/or hanging out with friends.  He really is a good father I swear - he has even been stressing trying to find a new job closer to home so he can have more time with us instead of driving 3hrs everyday to/from work.  And trying to get something around the same pay or more.. but even with the same pay we will have more money since he currently spends $400+ a month on gas just for work.  I know he loves all of his children very much, but sometimes he just doesn't show it, and I really need him to.

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.

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.

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.

Facebook

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

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).

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.

Father's Day 3D Ultrasound

On Sunday, Father's Day, we did a 3D/4D ultrasound of the babies!  It was me (of course), Brian, the kids, Mom, Jimmy, Carol, Kevin, and his "girlfriend" Kaylee.  We got a lot of pictures and video.  A lot of the pictures are not very good but it wasn't the ultrasound techs fault, they babies were just not in good positions and kept moving around a lot.  Baby B was first, she kept putting her arm across her face and later was bringing her knee all the way up to her face too.  When they were taking pictures of Baby A, Baby B put her hand in front of Baby A's face too.  I was joking that at first she was going "No, don't take my picture!" then "No, you can't take my sister's picture either!".  Haha!

Baby B: see that elbow and arm

Baby B: biting lower lip

Baby B: smiling

Baby B

Baby A

Baby A

Baby A: with Baby B's fist

Baby A

After that everyone, except for Kaylee, went to an early dinner at Buffalo Wild Wings.  Mom and Jimmy have never been there before but they enjoyed it.  At the end Kevin left and the rest of us went to Baby Depot.  We bought a really nice big diaper bag for only $35.  I was thinking about making one, but wasn't sure when I would get the time plus it would cost me around $55 or more for material and supplies.  I know Mom and Jim bought some stuff for the babies too but they were trying to be sneaky about it, so I don't know what they got.  The last stop of the night, minus Mom and Jim, was Babies R Us.  We officially picked out the crib bedding so we can pick out paint colors and get started in the nursery.  We bought something small for the nursery that we can use to match the colors.

Yesterday, the cribs were ready for pickup!  After work Brian and Carol picked them up and we put one of them together.  After that it was late and Brian was too tired to do the second crib.