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!

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.

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. 

What an AMAZING DAY!! (8 weeks)

Don't you just want to chew on those cheeks?? <3

55 days old/days in NICU

Weight: 4 lbs 15.5oz (+70 grams)

Today was a good day at the ICC!! Ella's still on the same amount of pressure, 3 liters, but it seems that the albuterol neb treatments may be working! She needed just a little bit less O2 today. The biggest thing that happened today was that Ella nursed for ALL FEEDINGS from 12 PM until 9 PM. That's 4 feedings...which is the amount of times we're allowed to breastfeed. Well, Ella actually nursed 5 times today...but they were half an hour apart and Margo (our favorite nurse) and I decided that the two nursing sessions were so close together, we'd just call it one...hehehe. Sh, don't tell! ;-) So tomorrow, we're REALLY hoping to be able to nurse on demand! This is one of the BIG things we need to conquer before coming home. Feeding, and then get off the high flow cannula! That's it...then she's home! 

THAT is a true milk drunk look RIGHT there <3 <3

Today my very good friend Meghan got to come see Ella and hold her. It was really fun! She also got to see Ella nurse, which she was just over the moon about! I {heart} my friends who are so into breastfeeding like me!  

Meghan and Ella

First bath! 7w6d

First bath!! 

54 days old/days in NICU

Weight: 4 lbs 13oz (+20 grams)

Today Ella had her first real bath! She's had sponge baths and been wiped down of course, but this was her first tub bath. Her nurse, Margo, and I did it together. It was pretty uneventful but still fun!

Ella's still on the same amount of oxygen and liters of pressure. We'd hoped that today I could feed on demand but the doctor ordered a Renal Ultrasound (kidney) and we figured it probably wouldn't be a good time to ask. Maybe tomorrow. They ordered the renal ultrasound to see if she had any kidney stones and also because she'd had that minor bladder infection on that Saturday where she got so sick. The nurse gave me a sneak peak at the results (shh don't tell the doctor) and the radiologist said that there COULD be some stones in the left kidney that aren't causing any obstructions. So, I'll know more about that tomorrow. Sigh. I asked if that could cause needs for more O2 and she said no, definitely not. GAH!! I was hoping that'd be an answer to all of the oxygen problems. But no such luck, the answer to that is, apparently, her lungs just freaking suck.

Ella was supposed to go down to a different area for her ultrasound but when we started getting her ready to go, she started screaming like someone was MURDERING her. Her heart rate was well over 200! Margo (nurse) and I were in absolute shock. NOTHING we could do would calm her down. We tried rocking her, giving her a pacifer, burping her...I even brought her up to breast to see if she would comfort suck or to see if she was hungry. We finally decided there was NO way she should be leaving her room and scheduled the u/s people to come up to her. We got her hooked up onto her regular cannula and I put her against my bare skin and she calmed down. I think it was a combination of being really gassy (Margo gave her a suppository and she pooped like crazy), hating the cannula that was put on her for the go and wanting to cuddle. It was super weird!

That's about it in NICU news. We put up the Christmas tree today when we got home. As many of you know, last summer some stupid jerk broke into our storage and one of the things they took were ALL of our Christmas stuff (why?!?! WHY?? jerks). So all the ornaments and stuff we have we got last year. I personally believe that ornaments need to have a special meaning so other then the balls we have for the tree, we only have a few ornaments and we'll have to build back up ornaments over the years. We have a tradition of giving each other (and our girls now) an ornament for Christmas each year so that'll help. Here's some pictures from today.

Happy Thanksgiving!

"HI!" This is the same shirt Olivia wore on her first Thanksgiving! <3

53 days old/days in NICU

Weight: 4 lbs 12oz (+1.5 ounces)

Today is Thanksgiving and we spend the whole day at the hospital. When Shane has a day off, that's what we do , so Thanksgiving was no exception. Thank God for the Ronald McDonald house (one of these days, I'm going to take pictures of it and blog about it. It's A-M-A-Z-I-N-G!) which gives us the ability to do that!! Well, a family who had previously been at the hospital came in and did Thanksgiving dinner for people at the hospital. We were SO TOUCHED and it was a wonderful meal. We also had our favorite nurse on ALL Day long, which was awesome. We absolutely love Margo. She's gone to bat for us several times and tomorrow is going to talk to the doctor about letting me feed on demand for an 8 hour period without giving Ella her tube feedings. We don't have SUPER high hopes but it certainly doesn't hurt to ask!! 

Ella is still on 3 liters of pressure and that doesn't seem to be going anywhere anytime soon. I really wish she could wean off the high pressure cannula :sigh:. We've pretty much given up on the idea that Ella is going to come home by my due date which is exactly 3 weeks from today, but I"m still hoping for Christmas. On the bright side, Ella is gaining weight really well and is almost 5 lbs!! 

Today, Ella is 37 weeks gestation. She is officially a full term baby. If she'd been born at this point, she'd be more then 5 lbs I'm sure...breastfeeding...coming home...not on O2 probably. Sigh. Not something I think about TOO often but since today I would be technically full term....it's just sucky. 

Here's some pictures from today! 

51 days....

51 days old/days in NICU

Weight: 4 lbs 10.5 (+1.5 ounces)

51 days...why does 51 days seem like SO MUCH longer then 50 days?? We're approaching Thanksgiving and for the longest time, we were all convinced Ella would be home by Thanksgiving. Notttttttt going to happen. Her breathing issues are not getting any better so today they are going to start giving her NEB treatments again. They started them this morning so hopefully we'll see a difference. They won't help with the lung disease but hopefully help with her respiration in general. It's so frustrating because in order to come home we need two things at this point: all feedings from breast and off the high flow cannula. Well, in order for all feedings from breast, her respiration needs to be better. They say that will happen with age and growth....she's growing. She's getting older. Her respiration is getting worse. And believe me, we are absolutely in the best place we could be so it's not that I don't have faith in the hospital, I'm just frustrated. 

We've been working on breastfeeding and what lactation has us doing is weighing Ella before she eats, then afterwards to gauge how much she's getting. Well, the scales are NOT consistent. The LC (lactation consultant) showed me how to use the scale...like 20 times. I KNOW how to use the scale. The nurses KNOW how to use the scale. We are not stupid people. But the LC insists that scale is a $3000 scale and is accurate. Okay, if it's accurate all the time, then why does it sometimes say that Ella lost 30 grams after having a 10 minute nursing session? It's inconsistent and cannot be relied upon. Which has been a problem from the beginning. Today I was expressing my frustration with the scale to the nurse after Ella had nursed at 9:00 PM because I weighed her 3 times after she ate. The first 2 times, it said she lost a bunch. The third time, it said she gained an ounce. Well, Ella didn't do the greatest job nursing so I KNOW she didn't take an ounce. It's not giving us an accurate view on what Ella is actually eating and I'm really getting irritated and frustrated with that. So our evening nurse talked to the charge nurse and they're going to try and get us back on the timed protocol. I'm not sure if you all remember what that was before but 0-5 minutes of nursing=full feeding, 5-10 minutes=half a feeding and 10 minutes or longer=no feeding. Based on the times that we HAVE gotten an accurate weight after she's eaten, that's about right. If she nurses for around 10 minutes, she definitely gets a full feeding and then some. When she DOES nurse, she's an effective nurser. I have breastfed a baby before. I KNOW what a letdown feels like, I KNOW if she's eating and the scale is not always on track with what is actually occurring. So hopefully after tomorrow that stupid scale will be out of Ella's room! 

I have an exciting Olivia story to tell. Today she woke up and I went to change her diaper and it was TOTALLY dry! First time ever! WOO! So I asked her if she wanted to go pee on the potty and she said "Yes!" We went into the bathroom and she sat on the potty, then stood up. She did this a few times and then she peed a little bit on the floor and I gently told her to move to the potty. She did and peed the rest on the potty!!!! Yay!!!!!!!! So exciting! I was very proud of her. I'm definitely NOT even trying to potty train right now, but if she wants to sit on the potty sometimes and then once Ella is home, I think we'll be able to really start potty training. Hurray!