"Sometimes," said Pooh, "the smallest things take up the most room in your heart."

Friday, December 31, 2010

New Years Eve trip to the ER

This morning when we woke up, as I was changing Ella, I noticed that she was retracting in her chest just a bit. That's when the chest is sucking in under the ribs, which can indicate respiratory distress. It was pretty mild and right after, she got the hiccups so I decided just to keep an eye on it. We went to a small New Years party with just a few (HEALTHY!) friends and then came home for a nice long nap. I had seen it still while at our friends house but it was still mild. This evening, I checked and she still had the retracting. It hadn't gotten any worse but since it was still there, I called our pediatrician's office. I spoke to the on call ped who said that based on Ella's history and her current respiratory status that he wanted her seen immediately at Children's. So, off we went to the ER at Children's in Minneapolis.

When we got there, she was still having some mild retracting but everything else was totally fine. They hooked her up to a pulse oxymeter which indicated that her O2 saturation was 100%. She sounded totally clear, no temperature and looked great. We went back into a room and the doctor saw us and everything was the same except the retracting was barely noticeable. The doctor said that her belly was very full and had a lot of gas in it and that can sometimes cause babies to retract like that. They did do an influenza and RSV test just to be on the safe side though. If either of those come back positive, Ella will have to be readmitted into the hospital. We're really hoping it's not either of those two things because if Ella gets RSV or the flu, it is much, much more dangerous then if you or I get the flu. She could end up back on the vent or she could even die from it. With preemies like her, especially with the chronic lung disease and being on O2, it can be deadly so we're praying that it's not that. Thankfully, the doctor seemed relatively sure that it wasn't that.

We were in and out of there pretty quickly and got home about 10 PM. So no trips to ER in 2011 yet! ha!

Thursday, December 30, 2010

What a merry, merry Christmas!!


I think this was probably one of the best Christmas' we've ever had. We are so blessed to have two beautiful, amazing girls and to have them home on Christmas was the best gift we could have EVER asked for! Ella came home 8 days before Christmas and has been doing wonderfully. On Christmas Eve, we baked Christmas cookies and watched The Muppets Christmas Carol, which is something we do every year on Christmas Eve. Great Grandma Phyllis was going to come over, but unfortunately she had a cold and we can't let anyone who is sick come around Ella. We'll have to celebrate with her a little later!
Baking mama's special butter cookies on X-mas eve! 
The stockings were hung over the entertainment center with care...

On Christmas Day, we opened gifts with just our little family. Great Grandma Carol, Grandma Jany, Grandpa Paul and Uncle Tim came over in the afternoon, and we opened more presents. We had a wonderful meal and watched Christmas movies all day. It was a nice, relaxing Christmas.









We got lots of pictures of Olivia...but not any of us together as a family. I'm not sure how we managed to miss one of those. I was kind of bummed about that, but on Sunday we have someone coming over to do some professional pictures in our home. So we'll make sure to get a good family photo together then.

It was a simple Christmas, but a wonderful one. It couldn't have been a happier Christmas, with our Ella home and our girls together. My wish was to wake up on Christmas morning, with a girl on either side of me. And on Christmas morning, I woke up with one girl curled up in my arms, and the other curled up on my back. My Christmas wish came true! <3

Saturday, December 18, 2010

First full day home



Wow, what a journey it was going through the NICU. It's amazing to finally be home. Yesterday, we didn't even know 100% sure if Ella was coming home until we were driving to the hospital. We were about 90% sure but you never know with the NICU! We got her all ready to go, got her medications (it's a good dang thing Ella qualifies for MA because of her prematurity and chronic lung disease because a single months worth of just ONE of the meds she came home on would have cost $1500), went over discharge and 3 hours later...we walked out of the ICC to start our life as a family of 4!!! 


We got home and we could hear Olivia in the apartment...she knew we were there and she was trying to open the door to greet us. She immediately knew we had Ella and was enthralled! She was giving her hugs and kisses right away. I sat on the couch and she brought a blanket over and started playing peekaboo with Ella. It was so sweet. We spent the day lounging around with the girls, letting Olivia get to know Ella and just relaxing as a family of 4. We got take out from our favorite Chinese restaurant to celebrate Ella coming home. 


All in all, it was just a nice coming home day. We did absolutely nothing except watch a movie and sit around relaxing with the girls. Olivia is absolutely in love with her little sister and Ella seems to be pretty fascinated with her big sister! Ella is breastfeeding like a pro and she wakes up to eat. We don't have to set alarms or force her to eat. The only problem I've encountered so far is she seems to be a one boob baby so far--she does NOT like my right side and will scream if I try to get her to eat on that side. I'm going to work on that though--I don't want a one boob baby!!! 


Here's some pictures from the day!
















Now that Ella is home, I'm still planning on continuing to blog about our family and update everyone on the girls and just life in general!! 

Friday, December 17, 2010

Wednesday, December 15, 2010

Hernia surgery

72 days old/days in NICU
Weight: 6 lb (+2 oz)

Today Ella had the hernia surgery. We weren't sure if she would need it or not but apparently the situation was a bit more severe then we thought. In all babies, there is a hole that for baby boys, their testicles will drop through and go into their scrotum. In baby girls, the hole should close. Well, in preemies, that doesn't always necessarily happen. What happened with Ella is her ovaries dropped through that hold and were bulging through and you could feel them on the outside of her vagina. It was CRAZY. They did the surgery, put the ovaries back where they're supposed to be and closed up that hole. While there were in there, they also fixed her umbilical hernia which is a hernia in her belly button. The stomach muscles aren't closed all the way in preemies and her intestines were bulging out her belly button. Yes, it was gross. They said it was a REALLY good thing they did the surgery now because her ovary was stuck and it was difficult to get it back up. Had they waited, Ella would have lost at least one of her ovaries, if not both of them. 

The surgery does put off her homecoming date...although we aren't sure when. There's still a good chance she could come home on Friday if she's doing really well, or it could be this weekend. I have pretty high hopes for Friday but I'm trying not to be too disappointed if it's NOT Friday. 

Today, Ella weighs 6 lbs exactly! Whoo hoo! Tomorrow is my due date and Ella is without a doubt the size of a newborn. She's over 20 inches and weighs 6 lbs. A small newborn, no doubt (well weight wise!!) but still, a newborn! 

Tuesday, December 14, 2010

What a day!!

Lots of things happening this week! Ella had her carseat test--which she passed. She had a kidney scan that showed the stones were still there but they weren't any worse and she had a brain ultrasound which showed that the stage one brain bleed had cleared itself up. Hurray! Totally on the right track! She's taken EVERYTHING by mouth since, I think, Saturday and is gaining weight. She's on 1/8 a liter at 100% O2.

Yesterday we found out that Shane's work is refusing to give him the law required FMLA. Don't get me started. Yes, we could fight it. Then he could lose his job. So we just decided it's not something we can deal with right now. They're giving him 2 weeks off after Christmas and we simply CANNOT be without his job. Plain and simple. Believe me, I've raged and raged about this and many a naughty word has slipped passed my lips so please don't tell us how we can fight it. It sucks but our family comes first and our family will be homeless without his job. So he only gets the day she comes home off and we had to fight even for that. UGH!!!!!!!!!!!!

Last night, her night nurse found what appears to be a hernia on her vulva. Sigh. The NICU neonatologist thought it was a lymph node, our ICC neonatologist thought it was a hernia and the surgeon (who is a total A-hole), who hasn't even looked at it, is convinced it is a hernia and it's her ovary and it needs to be replaced immediately. Tomorrow he's coming to check her out and the surgery has been scheduled for tomorrow afternoon on the basis that if she doesn't need it, it can be cancelled. What really sucks about this was that this morning we were raring to go out the doors Thursday morning. If she has this surgery, according to the jerk surgeon, it would push it back to Friday. ::mental head bang:: I know, it's one day but Shane already has Thursday off as an approved day but we won't know till Thursday morning if she's going home on Thursday or Friday. It's been a lot of ups and downs today with all this hernia crap.

Tomorrow we have our O2, monitor and CPR brush up training and we'll learn her meds. The good news is that Ella should be home before the weekend (which Shane has to work..again, don't get me started).

Sorry this post is all over the place and doesn't flow well. I'm super busy and just writing while I pump.

Who cares........

ELLA'S COMING HOME!!!!!!!!!!!!!!!!! :D

Sunday, December 12, 2010

10w1d old--so close I can almost taste it!!

69 days old/days in NICU
Weight: 5 lbs 14 oz (+2 oz)

Countdown to D-day: 4 days

We're going in the right direction, that's for sure!!! Ella has her NG tube out--it came out yesterday and she's taking ALL feedings by mouth. She wakes up for all her feedings and eats more then she is "required" to eat (they have a certain amount she needs to eat based on her weight). She's on 1/4 liter of oxygen and needing about 65-70% O2. That sounds like a lot but keep in mind how much she's come down! If she comes home on oxygen, she'll come home on 100% so now it's just a matter of finding out if she can go down to 1/8 liter or if she needs to stay at 1/4 liter. They are working on fine tuning that!


ETA: I JUST TALKED TO ELLA'S DOCTOR. HE'S BRINGING HER DOWN TO 1/8 A LITER AND THAT'S WHAT SHE'LL COME HOME ON. 

The doctor ordered her carseat test this weekend!!!!!!!! So that'll be done next week. At this point, I see NO reason why we won't be home by late next week or possibly the weekend. She has some medications she's on that they'd like to be able to get her weaned off of. Her neonatologist wants her to get off the diuretics so we can take her off the sodium and the potassium. We're SO close!! My due date is in FOUR days! 

Yesterday, we got a storm to remember. This one will be talked about for YEARS to come. I heard it was somewhere around 2 feet of snow. I tried to get to the hospital yesterday morning but I started driving and visibility was almost nothing so I had to turn around and go home after just a few blocks. I stayed home all day with Olivia and Shane ended up going to work then coming right back home because they took the plows off. If he had listened to me in the first place...I TOLD him not to go in!! Anyways, I got LOTS of cooking done for our freezer for when Ella comes home! Double batch of meatballs for whatever we want to use them for, stir fry, chicken caccitore and I also got some cleaning done! I still have some more cleaning to do before she gets home...hopefully I can get that done tomorrow! Today, my mom is coming over early and Shane and I will go to the hospital. He's dropping me off so he can take my car to work (4 wheel drive on mine) and I'm staying all night and into tomorrow. Ella's on demand feeding now so she can breastfeed and bottle whenever she wants!! 

Thursday, December 9, 2010

Exciting things happening!! 9w5d old

66 days old/days in NICU
Weight: 5 lbs 12.5 oz (-10 grams)

Well first of all it appears that I've labeled some entries wrong. TODAY Ella is actually 9w5d old. I'm not going to go back and fix them though. 

I didn't get to go in to see Ella today because I woke up at 4:00 AM with a BAD flu bug! I curled up in bed, popped Mickey Mouse on the Mac and we watched TV in bed for half the day. Then we went into the living room and watched a movie out there. Such as life when you have the terrible flu. But I've been calling the ICC to check on Ella and of course her doctor called me today and left a message with some VERY exciting news! Ella has been moved down to .5 liter of pressure on her O2. She's only needing 36% O2 on that so they'll probably be able to move her down even MORE!! AND she's getting all feedings by mouth. Last time I talked to her nurse, she had taken a bottle all day long. These are all things that are necessary for Ella to get home. I am thinking that by tomorrow, maybe Saturday, we'll know Ella's coming home date!!!!!!!!!!!! I'm so excited...yet so nervous too. I'm nervous about her coming home on O2...and I'm nervous about her NOT coming home on O2. I'm nervous she won't breastfeed...I'm nervous she will get sick and end up back at the hospital...I'm nervous she won't gain weight....a whole MYRIAD of thoughts rushing through my head!!! 

Sorry I have no pictures for today...hopefully we'll have an even BETTER update tomorrow!! 

Wednesday, December 8, 2010

9w5d old

66 days old/days in NICU
Weight: 5 lbs 12.5 oz (+2.5 oz)

Today, Ella is needing a bit more O2. More like in the 40% range. Her nurse, Margo (our fave) said that's not necessarily a terrible thing and it's just something we'll keep an eye on. Hopefully she doesn't require more overnight. Right now, she's on 1 liter of pressure on the low flow and we're hoping to go down to .5 liter, which is the most she can go home on. Obviously we don't want her on it if she isn't ready, but we're hoping she's READY for it, or will be in the next few days. Ella is now getting 48 mls per feeding (a whopping ONE ml more then she was before haha) and has taken 3 bottles and taken them very well. I had a lot of fears we'd have issues going back to breast but today she nursed 2 out of the 4 times we tried. Hopefully she doesn't continue on this path of not always nursing though because when she comes home I intended on exclusively breastfeeding. I think she will, in time. The doctor ordered that Ella is now feeding by mouth by cue. So as she indicates that she's hungry, she will take all feedings by breast or bottle. If she wakes up squawking, as my Ella is known to do, she'll get to eat by mouth. Another step in the direction of coming home!!! 

Ella and I took a walk out in the unit today!! That was really exciting! I had her in my sling for a while, and then I took her out and wrapped in her a blanket so she could look around. It was a lot of fun! 



And today...Ella is officially TOO LONG for most of her preemie stuff!! Margo gave her a bath and got her dressed but her legs were scrunched up so we had to change her into a newborn outfit which fits perfectly!! Last night I was going through Ella's clothes and I realized just how LITTLE size "Newborn" stuff I have (VERY different from 0-3 month!!) so it looks like we'll need to get some newborn clothes for little Miss Ella!! l

First size Newborn outfit--she believed it was time to eat, not take pictures


Tuesday, December 7, 2010

9w4d old

65 days old/days in NICU
Weight: 5 lbs 10 oz (+2 oz)


Today Ella came off the high flow cannula and is on the regular cannula. Tomorrow, I'm bringing in my sling and taking her for a walk in the unit hallway!!! Yay!! I can't WAIT!! She also took her first bottle today, and took it like a CHAMP. I'm super nervous we'll have issues transitioning between breast and bottle...I hope not! The doctor is weaning her albuterol to every 8 hours instead of every 4 but he said that if she shows signs of needing it, he'll just put it back up. So lots of good changes, slowly moving in the right direction. I'd love to see her home by next weekend but we'll see. It just depends on how this week goes!

My mom has the flu, so I won't be able to see Ella at night till she gets better. One of my friends offered to watch Olivia for a few hours but Olivia is still kind of sick and I'd hate to expose anyone else to that. Both Olivia and Shane had a NASTY flu bug. I've managed to avoid it and I'm PRAYING I don't end up with it!

Monday, December 6, 2010

9w2d old--and SO much is happening


64 days old/days in NICU
Weight: 5 lbs 8 oz (+10 oz)

So much has happened in the last week. I kept meaning to blog but something would come up and I wouldn't be able to. The hospital blocks blogger for some weird reason so I can't use the computer there to do it.

I don't even know where to start. Let's see...well, as you can see Ella has gained just a TON of weight since last I posted. 10 ounces in less then a week! She cracked 5 lbs last week, which is super exciting. She's doing absolutely amazing at breastfeeding. She's still getting her NG feedings but today the doctor said she felt it was time to introduce bottles to Ella since she's so good at breastfeeding, and enjoys it so much. I'd originally planned on not introducing bottles at all but the doctors say we have to give her 2 bottle feedings that are fortified once she's home. I don't know if I'll actually do that, but we have to do it in the hospital at least. Now, you may be asking, why are we introducing bottles now? Well, let me tell you why. 

BECAUSE ELLA'S COMING HOME!!!!!!!!!

Before we get TOO excited, we don't actually have a date but it's going to be soon. Very soon. Like, within 2 weeks (possibly SOONER) soon. Doctor says before Christmas and we should know more by the middle to end of this upcoming week. They started weaning Ella down on her high flow cannula and she's currently at 1.5 liters. 1 liter is the lowest setting for a high flow and is the transition to a low flow cannula. As soon as she's on that, all we have to do is get her down to 1/4-1/2 a liter and figure out how she handles that and she is ready to come home, as long as she's taking all feedings from breast or bottle and gaining weight. This could all happen VERY quickly. The weaning from the high flow has happened much faster then we anticipated once they started it. Even her neonatologist was surprised. Dr. Camp (dr. on this week) started taking her down .5 liter every few days. On Thursday, she was down to 2 liters and Dr. Camp said she was absolutely NOT going to wean her ANY more until the following week when a new doctor was on and they could take her labs. Well, on Friday, Ella was still only needing 25-30% O2, which was what she'd been needing on the other flows. So, Dr. Camp turned her down to 1.5 liter!! And, even better, Ella is still only needing about 30% O2. Occasionally a bit more, but she averages 30%. Today (Monday), a new doctor came on. After her blood gas was checked, and she'd still been on 30% O2, he turned her down to 1 liter!! Hopefully, by tomorrow, Wednesday at the latest, Ella will be on the low flow cannula. 

So tomorrow I'm going to bring our own bottles, to help with the transition between breast and bottle. I also brought Ella's carseat into the hospital and told them it's motivation...that the carseat was staring at them, willing them to send us home! No, we're not doing the carseat test yet (which is where they sit her in it for 3 hours, with a full tummy, and see how her O2 is and if she desats) but it's going to be happening soon, so I figure it's just one more thing I won't have to worry about later...plus it's kind of exciting to bring it into the hospital knowing that it's going to be needed soon!!! 

Sunday, Santa came to the ICC and NICU to see the babies. They took a picture and are giving us a copy of it. I'll try to get it up. Here are some pictures from Santa day.




Tuesday, November 30, 2010

8w3d old

BIG SMILE <3


58 days old/days in NICU
Weight: 4 lbs 13 oz (-2 oz)

Sooo much has happened in the last few days. I should have blogged so that this all doesn't have to go into one blog post but oh well. I've been so busy. 

Sunday the doctor said we could feed on demand. Olivia was sick with a really bad cold so I went to the hospital alone. Ella nursed twice that day. She lost 85 grams that day BUT, the nurse (and I) both agree that was because the doctor is changing her diuretics to a different kinds and she had two dosages of diuretics that day, so of COURSE she lost weight. The new doctor who is rounding this week doesn't see it that way unfortunately. Then on Monday, she lost another 15 grams and today only gained 10 grams so we got one of our breastfeeding sessions taken away. The nurse and I BOTH tried to talk to the doctor about this and the thing with the diuretics but she didn't seem to agree with us. It was pretty frustrating. However, I had a really long discussion with the nurse and we came to a compromise. I told her I was fine with Ella getting only three FEEDINGS without the NG tube at breast, but I wanted to be able to put her to breast for comfort sucking or when she was rooting around. I told her I didn't care if Ella had to also get an NG feeding but that I was tired of denying her what she was asking for by rooting around. They give her a paci when she starts rooting and that's essentially telling her that when she wants to nurse, she'll get a latex nipple to suck on instead of me. Not fair. Luckily, I had a fabulous nurse today and she agreed with everything I said. She was also unhappy with the neonatologists decision and we agreed that while Ella can only go to breast for three FEEDINGS, she can go to breast at any time she wants to and even if she DOES get a feeding, I suppose she'll still get an NG feeding. That way, if I'm holding her during her feeding and she wants to go to breast, she can. Plus, if she's cranky, or has a big spit up, or just wants to suck, I can bring her to breast instead of giving her the paci. I was VERY pleased with that compromise. I KNOW that eventually she'll get her feedings from breast...she is so good at nursing when she does, it's just a matter of getting older and being able to be awake for her feedings. 
Changed from a mobile to an aquarium that plays music. She REALLY likes it!
On Saturday, Ella had a renal scan and it was found that she had kidney stones in her left kidney. The doctor said that was from the diuretic which was why they had to change it to a different diuretic. They said the kidney stones were non obstructive and weren't causing her any pain or discomfort so changing the diuretic will help. 

I can't remember if I mentioned before that Ella was put on Albuterol, which is a steroid lung treatment--it's what I use for my asthma and Olivia gets neb treatments when she's sick and gets Albuterol. It's working REALLY WELL. Her O2 needs went down to 25-30% on Saturday night and stayed down at that level. I was really surprised and pretty annoyed that they didn't turn her liters down from 3 liters to 2.5 yesterday but they did today, so now she's at 2.5 liters. 

We are 99% sure at this point that Ella is NOT going to be home by my due date. My due date is in 2 weeks and 2 days (Dec 16) and there is just no way. I'm not even sure if she'll be home by Christmas. Sigh. That's really hard for us to accept. I know, she'll be home eventually and this is where she needs to be. I KNOW that, but that doesn't make me feel better about it. 


Olivia saw this and said "Nurse!" I asked her if she wanted to color it and she said "Ella nurse!" So we colored it and gave it to Ella's nurses. Ella's nurse Margo came out in the hallway so Olivia could personally give it to her <3.