Update: Ainsley & Lorelei

Ainsley never had any problems while in the NICU.  She took a little while learning to nipple the bottle but was able to come home on Oct. 21, 2012 after 104 days/15 weeks in the NICU.  She is such a happy baby, always smiling and has a high pitched laugh.  Although she as a great baby while her sister was still in the NICU, I know she missed her because the first night they were together they both slept through the night, and have continued to do almost everyday since.  She is louder then Lorelei and loves to express how she feels.  She no longer cries when hungry but yells like she is mad.  She loves to "talk" to anyone that will pay attention to her.  Ainsley is currently at a 2-3mo level even though she is 6 mo. actual/3 mo. adjusted.  She is currently 14.5lb and 23in long.

After her surgery on Sept 3rd, Lorelei began to improve... a lot!  Very quickly she was able to step down from one oxygen machine to the next.  Very, very slowly her distended belly got smaller.  Healthy wise she was doing great.  She had a very hard time mastering her suck/swallow/breath skills. She was getting better all the time and the doctors kept changing her minimum requirements in order to help her reach them so she could go home.  But no matter how much she was require to eat, she would take the same percentage every time... it's like she knew.  The doctors couldn't find any reason for why she wasn't nippling, so they wanted to send her home with a G-tube.  A G-tube is a feeding tube surgically placed in the stomach.  Brian and I were completely against it.  Since there was no known physical reason for the lack of nippling we felt like we had to at least try to bring her home with a NG-tube.  An NG-tube is a feeding tube the goes into the nose (or mouth) and down into the stomach.  The doctors refused to send her home with the NG-tube because it is easily pulled out and can easily go into the lungs causing her to get sick or die.  Our older daughter, Rhiannon, came home with a NG-tube because she refused to eat anything at all, started the day her brother left the NICU.  Her first morning home she started nippling her entire bottle and never had a problem again.  So we were afraid of putting Lorelei through another surgery just for her to come home and start nippling just fine.. followed by another surgery to remove the G-tube.  We were fine with getting the G-tube if she continued to not nipple... because if it continued I would be more worried about why - what was wrong, than her getting the G-tube.    She would do most of her bottle fore her primary nurses and very little for any other nurses.  We tried explaining to the doctors that she is being picky about who is feeding her.. so if she came home where just me, her mother, was feeding her every time 24/7 she would continue to improve and not need a feeding tube.  Finally the doctors agreed to send her home with NO feeding tube at all!  They sent a home nurse to check on her and her weight.. and as long as she got check up regularly  consistently increase on her nippling, and continued to gain weight they would be happy.  But if these things didn't happen we would be getting the G-tube in place.  She came home on Nov. 22, 2012 (Thanksgiving Day) after 132 days/19 weeks in the NICU. It took a while and she would only eat for me but she was improving all the time and is now eating everything from anyone that feeds her.  At 6 mo. (3 mo. adjusted) she is taking 6-8oz per feeding (just like Ainsley), sleeping through the night, and is more than 13 lb and 22in.  She mother knows best!

Both girls have a lot of doctors appointments.  They get their eyes checked regularly and an Infant Teacher (similar to a physical therapist but without all the credentials  comes to the house every Tuesday.  Lorelei also sees a doctor for her hip dysplasia (getting it put on this Monday) and specialist for her thyroid condition.  Both girls are having an appointment to their flat heads soon.

We did a DNA test and the girls are identical!  All 26 DNA markers tested were a match.

More detailed information can be found on their Facebook page.

Lorelei right after surgery.

Lorelei's first time being held after 45 days.

Ainsley

Ainsley's first bottle.

One of their first times together.

Lorelei's car seat test: passed.

Ainsley's car seat test: passed.

L pulled out her NG-tube, & was so proud.

Nurse Penny getting Ainsley ready to go home.

Ainsley is finally home!

Lorelei is finally home!

They really are identical!

Happy Lorelei

Lorelei

Lorelei smiling at her reflection.

Lorelei

Ainsley smiling at her reflection.

Ainsley

Ainsley

Ainsley

Lorelei

Lorelei

Ainsley scared of Grandma's voice on speaker.

Cute!

Lorelei 

Pretty girls!

Coming back

I have not updated in a while and I am sorry.  It has just been really hard with the girls in the NICU and then adjusting to having them home.  I am currently working on an update post and a new page with facts about twins and preemies.  Should have the post up tonight at least.

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.