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

Tuesday, November 30, 2010

8w3d old


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. 

Saturday, November 27, 2010

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

Friday, November 26, 2010

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.

Thursday, November 25, 2010

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! 

Tuesday, November 23, 2010

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! 

Monday, November 22, 2010

7w2d old and out of the incubator!!

Ella in a big girl crib at 7 weeks old exactly (36w2d gestation)

50 days old/days in NICU
Weight: 4 lbs 9 (+2 ounces)

It's been a busy weekend! On Saturday, Ella came out of her incubator and is in an open crib now. This is a HUGE milestone. It's a major step towards going home. She's still on the 3 liters of O2 and the doctors aren't planning on moving her down to less liters until more towards the end of the week. That's kind of frustrating because she needs to be off the high flow cannula before she can come home. Granted, she also needs to be taking ALL feedings from breast as well but the cannula is the thing I see as our major obstacle now.

On Saturday we were able to start breastfeeding again. She didn't nurse at all on Saturday, but she did for both feedings on Sunday. Then today, we were able to increase to 3 nursings a day and she didn't nurse at all for any of those sessions. :( It's frustrating that she doesn't nurse each time. They keep telling me it's TOTALLY normal and that most babies don't nurse as early as she did and even at the gestational age she is now (36 weeks), most babies still aren't breastfeeding. But it's still discouraging sometimes. Not that I'm going to stop trying or introduce the bottle, it just feels discouraging sometimes.

Friday, November 19, 2010

We're getting places...

Ella's hands, 6 weeks old
Ella's feet, 6 weeks old

48 days old/days in NICU
Weight: 4 lbs 7 (-1.5 ounces)

It's been a busy two days for Ms. Ella. On Wednesday night, Ella was in about 60% O2 so they put her back up to 3 liters of pressure. They did an echocardiogram to see if she had any extra pressure in her lungs and found that she didn't. They also saw that the PDA duct had closed in her heart, whoo hoo. There is something else in her heart that of course I can't remember what it's called. It's minor the doctor said and at this point, isn't causing her problems but could potentially in the future. Sigh. Hopefully not. And of course I'm a dinkis and can't remember what it's called...
On Thursday there were no changes made. She stayed the same weight of 4 lbs 7 oz and the pressure stayed the same. Today, her O2 has been about 35-40% and she's still on the 3 liters of pressure. It sounds like they're going to keep her there for a while and very slowly wean her down as they can. However, very exciting news today--we can start breastfeeding again, up to twice a day AND she's doing to be weaned out of the incubator into a real crib!! Hurray! The incubator has to be 29 degrees (celcius) with her able to maintain her body temperature and when I called at 7:00 PM tonight, it was at 30 degrees. They'll check her temp every 3 hours and bring it down a little each time. So by tomorrow, I'm pretty confident she'll be out of it. I'm soo excited! 
The bummer thing about the O2 is that the doctor told me today (or was it yesterday? I can't remember) that they don't expect to see these kind of lung issues in a baby born 29 weeks gestation. She said that these are the kind of issues they see in a baby born at 23 weeks gestation. Great huh? I can't TELL you how THRILLED I was to hear that <<sarcasm>>. That's very scary and frustrating for me. At this point, it would be an absolute SHOCK if she didn't come home on oxygen support and need specialists for quite some time. But, if that's the case, I suppose we'll cross that bridge and deal with it as we've dealt with everything else. I'm going to do my best as her mom to help her believe that no matter what issues she may have with her lungs, she can do anything she wants. I've seen stories of babies with extreme lung disease with severe problems all their life running track in high school. If that's what she wants, you bet your butt I'll help her do it! I will NOT be one of those moms who says she "can't do it" because of her lung problems! 

Olivia, we had a movie night tonight
Tonight Olivia and I went to her buddy Aiden's 2nd birthday party and then came home and had a movie night. We watched The Polar Express, which is a newer movie and I think is just fabulous. :) We had a lot of fun, especially since mama isn't usually home at night! 

Wednesday, November 17, 2010

6w4d old

46 days old/days in NICU
Weight: 4 lbs 8.5 (+ 4 ounces)

Today is a *sigh* will this ever end? day. Ella didn't go down on her liters of pressure like we thought she would. She's needing around 50%, give or take a tiny bit, of O2 on the 2.5 liters so the doctor kept her on it. So, no breastfeeding. She also gained a lot last night so the doctor is putting her on the Lasiks (the diuretic) twice a day instead of once because she may be retaining water again. She is increasing her caffeine dosage from 10 ml to 20 ml in hopes it will help her O2. 

We also have an update on Saturday. The nurse and head nurse tested the cannula and nothing was wrong with it. The fact that it was changed and her O2 needs dropped was coincidental. I know what you're thinking, "yeah right". First of all, I trust this nurse as much as I trust anyone else and know she's not lying, plus she offered to test it in front of me and show me that it worked. Second of all, they explained what happened. Ella's hematocrit and red blood cells were extremely low. Dangerously low and she needed the transfusion, which we knew of course. The blood had been going in for a while and was nearing the end of going in at the same time that the cannula was changed. Plus, they discovered abnormal cell counts in her urine which indicated that she actually DID have a small bladder infection and the antibiotics had been going by that point. So the blood transfusion and the antibiotics were doing their job. The doctor said they don't always see such a fast improvement from a blood transfusion but it appears that was her major problem, was the major need for another transfusion. 

Today is prematurity awareness day and to show your support, the March of Dimes asked people to wear purple. Olivia and I are both dressed in purple. :) 

Tuesday, November 16, 2010

6w3d old

45 days old/days in NICU
Weight: 4 lbs 4.5 (no change)

Today was a good day! Ella is off the antibiotics. There was definitely no growth on the cultures done on her urine, blood and spinal fluid--thank GOD!! She still has the IV in but that'll probably come out tonight or tomorrow morning. They don't like to take out a perfectly good IV in case the babies end up needing something. Yeah, I thought that was weird too. But she doesn't like IVs and they've needed to change it 3x since Saturday so I suspect that bad boy will be out by tomorrow morning at the latest! 

She's down to 2.5 liters today and around 35-40% O2. Her neonatologist will put her at 2 liters in the morning if everything goes good overnight (it's been fine all day so that will be happening) and then we'll be back to breastfeeding. We should also be looking at getting OUT of the incubator and INTO a crib in the next few days!! Hurray!! Now all we need to do is get her to be able to take every feeding from breast (or bottle they say but no bottles for me for now.......) and hopefully get off oxygen or at least off the high flow cannula. I'm reasonably sure Ella will be coming home on O2 but I HIGHLY doubt it'll be on the high flow cannula. 

Today is 11-16-2010 and my due date is precisely one month from today. Hopefully we can accomplish feeding before then because I tell you, if my due date comes and goes and we're still in that hospital, I will be absolutely crushed! I'm already bummed we're spending Thanksgiving IN the hospital (yes, in the actual hospital, we're eating at the Ronald McDonald house and our family is coming to the hospital). 

I actually have some cute pictures from today but it appears I left my camera at the hospital or in my car. I'm too tired to go out and check my car though so this will be a picture free post. 

Monday, November 15, 2010

What a weekend! 6w2d old

Ella, a few minutes after we walked in Saturday night

44 days old/days in NICU
Weight: 4 lbs 4.5*
(this weight is not completely accurate due to fluid, extra blood and the IV)

It's been several days since I updated. The end of last week wasn't too exciting, just normal happenings. On Friday night, I stayed over. The plan was that on Saturday, Shane would bring Zilly the cat to the vet, then come over to the hospital and we'd spend the day at the hospital at the Ronald McDonald house and trade off seeing Ella. Saturday morning, there was a TON of snow and it was storming so it was taking a lot more time for Shane to get things done. I ate breakfast and was feeling just really down, so I sat in the Ronald McDonald house and drank some coffee while the storm was going on. I went back into Ella's room at a little after 11:00 AM. Sometime around 11:30ish, give or take, her O2 all of a sudden starting dropping DRASTICALLY. She was in the 50's for what she was intaking so the nurse kept turning up her O2 percent. She had her all the way up to 100%. Ella was usually on 45-55%, which is still higher then they would have liked and was something they were looking into. The 100% wasn't working, so her nurse turned her up to 2.5 liters pressure. This went on until she was up to 4 liters and 90% O2. I was frantically trying to call Shane to tell him to find somewhere to bring Olivia and get to the hospital immediately.  Just before noon, she had stabilized at 4 liters and 90% O2. I was in an absolute freak out mode. She was pale and unmoving and none of us could figure out what was going on. 

Shane got there and Ella's nurse, Deb, said was saying that she was sure something was wrong with Ella's nasal cannula. She looked in the hallway and saw a RT (respiratory therapist) and asked him to come in Ella's room immediately. She told him what was happening and said she thought she heard something and thought something was wrong with the cannula. He poked around a little bit and said it was fine. Shane and I both felt at the time that he had kind of blown it off because he was in the area for a different baby. But, RT made the call, so time to move on. The doctor got an X-ray taken and we were all thinking it was pneumonia or the CLD (chronic lung disease) but the X-ray was actually remarkably clear. If you remember, Ella had gotten an X-ray about a week ago and it was WAY better then that one. Which totally stumped us all because we were SURE it was related to her lungs! They drew some blood work and when that came back, her RBC (red blood cells) count was very low as other things related to the oxygenated blood in her body so they decided to do another blood transfusion (count 'em, this makes FOUR!). The doctor also said that something in her blood (I keep forgetting what it's called) that can be indicative of infection was elevated so they were going to start her on antibiotics. She also said that the symptoms that Ella  was exhibiting could be meningitis so they would do a spinal tap. Once the doctor made the call, things started happening really fast.  

There were 3 nurses in and they discussed the order in which everything would happen. They started prepping for the spinal tap. They recommended that we leave during it but we chose not to. I told them, If my baby, who can't understand what's happening, has to experience this physically and mentally, then surely I need to be in here to experience it with her. If you've never experienced a baby getting a spinal tap, pray to God that you never have to. They gave her a pain killer and a sedative and the scream that came out of my precious baby's mouth...it was horrible. Shane jumped and I started crying the minute she made that noise. At this point, her O2 was down to 70% but it jumped back up to 100% during the procedure. It was pretty awful. Then they started the transfusion and the antibiotics. 

I'd asked the doctor earlier if we'd end up in the level III NICU again and she said no, that probably wouldn't happen. As the day went on, she just kept getting worse. She was so pale. It didn't look like there was drop of blood in her body. She literally looked like a dead person in her incubator. The doctor was trying to get  a response from her and she couldn't. Ella was completely unresponsive to stimuli. She was still breathing and everything internally was working, but she was incredibly sick. Dr. Camp told us that if they couldn't get her more stable, she would end up back on the ventilator in the NICU. After she told us that, I completely lost it. I'm talking curled-over-sobbing-uncontrollably lost it. I really felt like I had reached my breaking point. After my little melt down, we decided to take a walk over to the Ronald McDonald house. Ella's O2 saturation was okay on the 4 liters and at 90% and I'd hit my breaking point. I wrote down our numbers and the nurse promised she'd call if ANYTHING changed at all. We were about 30 seconds away, down two hallways and I needed to breathe. 

We got there, sat down and were just numb and worried. We didn't know if it was infection or if she'd end up back on the ventilator or what was going on. We weren't in there too long and Shane went over to check on her (around 8ish). He came back and said they'd replaced the cannula and she was starting to drop in her O2 needs. Instantly I yelled "BUT THAT'S WHAT DEB SAID WAS THE PROBLEM BEFORE!!!!!!!!" I was absolutely livid. LIVID. I couldn't believe it! We went over there and her nurse who was on now, Anne, said that they'd replaced it and thought there was a problem with it. I told her I was super angry because Deb had called RT in earlier and they'd said it was FINE! After talking with Anne (the nurse) about it for a bit, we decided to leave again to get something to eat. We came back about 10 or so minutes later and Ella's O2 needs hard dropped from 90% to 40%...in LESS THEN 30 MINUTES. We walked in and I saw two little legs kicking straight in the air, bright wide open eyes and a pink little baby staring back at me. She was totally fine. It had been the cannula after all. She'd also needed the transfusion because her RBC was REALLY low but other then that, the only issue was that the cannula was defective. Today, she's on 3 liters of pressure and at about 40% O2. The doctor is bringing her down .5 liter a day to make sure she can handle it okay but she's pretty much 100% better. I talked to the doctor about it today and told her I was "Extremely angry because this all could have been avoided" (except the transfusion). She was pretty upset when I told her and promised she was going to figure out what was going on, who it was and get back to me. Deb saved the cannula so that it can be tested to see what was up with it. 

Thank God Ella is okay. Thank GOD she wasn't deprived of enough O2 or for long enough to sustain brain damage but I can't tell you how terrifying Saturday was. I was absolutely beside myself with terror and grief. I was reliving what happened on That Night when Ella was 4 and 5 days old plus living through what we were currently experiencing. We got to kangaroo that night and I ended up staying until Monday night to make sure she was stable and fine. They had drawn some blood work and done some cultures on the spinal fluid, blood and urine and nothing grew on those, which means no infection. 

Wednesday, November 10, 2010

5w4d old

39 days old/days in NICU
Weight: 3 lbs 10 oz (-10 grams)*
*30 grams=1 ounce

Not too many changes today. Ella lost 10 grams and the nurse said the neonatologist was considering decreasing our breastfeeding but she didn't end up doing that, Thank God. I was prepared to fight for it though. Have I said that Ella is on caffeine? I can't remember. They give it to preemies to help with their breathing and prevent apnea. She is also now getting protein in her feedings, iron, sodium and potassium supplements daily because she's low in all of those. Her O2 is much better today though, on the high flow cannula. Ella's neonatologist increased her amount of food that she's getting in by 2 ml every feeding. That doesn't seem like very much and I personally think she could have increased it by something like 5 because often Ella will latch on, cause a letdown and just take in that while still getting a full feeding. Oh well though. Eventually she WILL gain weight. She won't stay 3 lbs forever. And she won't be in the NICU forever. Although today, it feels like it. Today I'm frustrated. I am tired of doing all of this and tired of having to choose between my children and tired of spending an insane amount of money on gas and tired of eating at a hospital cafeteria. I'm tired of not having time to cook or clean. I have to go to the grocery store today and try to make some double batches of food because we have gone through our store of meals that Shane made while I was pregnant as well as what other people brought. I have to choose between cooking for Olivia or spending time with her. GAH!!!!!!! I'm just really, really frustrated and tired. I want my girls under the same roof. I want Olivia to know her sister and I want to sleep with my 2 girls instead of 5 feet away from my struggling-to-breath newborn in a freaking plastic box.

Oh and PS. For the last week or so I've been meaning to get Olivia's thank you cards for her birthday presents. That hasn't happened. Just know that we appreciated the gifts and you will get them eventually. Even if you get it with our Christmas cards.

ETA: Jeez, I got so wrapped up in my own personal pity party that I forgot to share the very cool thing that happened yesterday! At her 8:00 PM feeding, I brought Ella to breast and she latched on and ate for about 15 or so minutes. Then she played for a bit, latching off and on. I switched sides because she was getting all kinds of cranky and she latched on and ate for about 5 minutes on the other side. We started weighing her before and after nursing to ensure she's getting enough instead of using the time protocol and she got 24 ml (remember, 30 ml=1 ounce). Preemie's are not as effective eaters as full term babies so while a full term baby would probably get a lot more, especially because of my flow and supply, in that amount of time, that is EXCELLENT for preemies!! Then at 11:00 PM, she latched and ate a bit but she was REALLY hungry and very impatient. She was screaming and writhing around because my milk wasn't fast enough for her hungry tummy (stupid mama had pumped less then an hour before nursing!! GAH!) so we did a tube feeding. She DID get 10 ml from me though, so that's not bad considering she was acting like my breasts were completely dry. Such a drama queen. <3

Tuesday, November 9, 2010

Back on the high flow cannula, 5w3d old

The blue tube is connected to humidity and some other stuff which is part of being the high flow cannula. 

38 days old/days in NICU
Weight: 3 lbs 10.4 oz ( +1 ounce)*
*30 grams=1 ounce

Ella was still on 40-50% O2 (sometimes more) so today the doctor put her back on the high flow cannula. It looks exactly the same but comes with a bunch more junk and it's a higher flow. She's also on 2 liters pressure now. Thankfully, that seems to have made a difference as when I left, Ella was in the high 30's for O2. That's what she was on only when she was being held by me and even then, she was usually in the low 40's. Hopefully she just needs this for a few days or so and then she can start to wean off of it then back onto the regular cannula and God willing, eventually not need any oxygen support. As we're getting towards going home in the next several weeks, I have to wonder if we're going to end up going home on oxygen. I asked the nurse if that would prevent us from being able to babywear (wear her in a sling or wrap or carrier of some sort) and she said no, it shouldn't prevent us from being able to wear her. 

Cannula looks the same as the regular one
Yesterday, Ella was acting very sleepy and wouldn't breastfeed at all. She also spit up a few times so I was pretty concerned with all these different things but the sleepiness appears to have been caused by her focusing all her energy on breathing. The biggest spit up occurred when she had the poop of the century and they said that often goes hand in hand for the preemie babies. 

I've noticed the last day or two that Ella has started smiling in reaction to laughter. Today, I was talking to her nurse while holding Ella and each time we laughed, Ella would smile. It was so sweet!!! 

Monday, November 8, 2010

37 days old

37 days old/days in NICU
Weight: 3 lbs 9.4 oz ( +10 grams)*
*30 grams=1 ounce

Not too much change today. Ella is still the same amount of O2, so they are going to be giving her a dosage of Lasiks (the diuretic) everyday. The murmur is still coming and going, it hasn't been heard today but it was heard yesterday. I'm REALLY hoping that the diuretic will help with her O2 needs. I asked what happened if it doesn't, and the nurse just said she thought it would. Then I got on another topic and forgot to pursue it. 

On the bright side, the doctors and nurses see what a drastic difference Ella's O2 is at when we kangaroo with her and are really encouraging us to kangaroo with her. This week will be my first week staying every night, so that should be interesting. Luckily they have the Ronald McDonald house opened which is beyond amazing. It has a stocked pantry, a full, top of the line kitchen, a big screen TV that's at least twice the size of our TV...it's absolutely gorgeous. I'll actually be staying in Ella's room but the Ronald McDonald house is open from 9-9 for families and friends to use. 

Sunday, November 7, 2010

She may not know she's a preemie, but her body does

36 days old/days in NICU
Weight: 3 lbs 9 oz ( +20 grams)*
*30 grams=1 ounce

Check out my new tab called "A Month of Thanks". Every day in the month of November, I'll have a new thing I'm thankful for in honor of Thanksgiving this month!

Today had a lot of ups and downs. The GOOD news is that today we got to start the breastfeeding  protocol today with Ella. The breastfeeding protocol is this: if she breastfeeds 0-5 minutes, she gets a full feeding through her tube, if she breastfeeds 5-10 minutes she gets a half feeding through her tube and if she breastfeeds 10+ minutes, she gets NO feeding through her tube! At 5:00 PM, she nursed for 14 minutes so she got her first FULL FEEDING from just breastfeeding! Very exciting! I can still only breastfeed 4 times a day and I'm guessing it'll stay that way until her O2 needs come down, but it's still really exciting. This is a HUGE HUGE milestone in the NICU. It's a step towards being able to start breastfeeding on demand! I spent all of Sunday at the NICU. We did some talking today and we're down to the final weeks. My due date is almost 5 weeks away, which means that Ella could be home in probably 3-5 weeks. So we decided that Monday-Friday, I would spend the night at the NICU to be with Ella and to work on breastfeeding. It was a really hard decision to make to be away from Olivia that much but I have two children who need me and right now, the greatest need is from Ella. The more I'm there, the more she gets to practice breastfeeding and the sooner she comes home. I'll still come home in the afternoons and spend that time with Olivia and Shane will be with her in the mornings. It's just the decision that made most sense and worked best with our family. A minor thing we realized is that it will actually save us a little bit in gas too, which will help a TON. We are spending a ghastly amount on gas going back and forth so much to the hospital so this will definitely help a little. 

I found out that the doctor can still hear Ella's heart murmur sometimes. The way the doctor described it is that there are two kinds of heart murmurs essentially. There is the one that Ella had, where the duct was opening and unoxygenated blood was able to make it to her lungs (which is what occurred ThatNight she got SO SICK). The other one, the doctor told me that because babies chests are so thin and their heart is right there, they can often hear a murmur that isn't a problem. I know, that was a terrible description but since I'm not a doctor, and I'm trying to describe it as basically as possible, I don't really know how else to describe it! HA! Just know that there's a "bad" one and a "not-so-bad" one. They don't know which one it is, which is what really freaks me out. Her doctor says that usually, if it's the "bad" one (which she had before), there will be other indications such as extra need for O2, blood pressure problems, her heart rate may drop or rise a lot...stuff that all happened before. Of course, we all know that Ella has had a need for extra O2 lately and she is currently on 1.5 liters of pressure. However, today, her need for O2 has been mostly in the 40's, as opposed to the high 50's-60's like it had been. The way they would find out for sure is to perform an echocardiogram, which is the test that they performed That Night she was so sick. That was what told them what they needed to know That Night and what saved her. Her doctor told me today that she doesn't appear to be sick and that an echocardiogram is something that costs thousands upon thousands of dollars to perform. He said that since she doesn't appear to be sick, they try not to perform the echocardiogram. However, if Ella starts showing any other symptoms or needs more O2 or gets worse in any way, they will perform it. 

They also did some labs today and discovered that everything is okay, except she appears to be more anemic. The doctor checked with the blood bank and they don't have anymore of the blood that Ella received in her first 3 transfusions. He is hesitant to introduce a new donor to her, even though the risks involved with transfusions are actually very low but also because if he gives her another blood transfusion, it will essentially stop her body from naturally continuing to produce more red blood cells on it's own from her bone marrow. He said that based on how her body is starting to produce it's own red blood cells, he thought that she'd be able to bring hermatocrit (the level of red blood cells in the blood) levels up on her own. 

So needless to say, after all of this, I kind of freaked out today. I relived That Night when Ella was so incredibly sick and I lost it while talking to the doctor. I started crying and at one point I told the nurse that I just couldn't deal with that happening again (of course I WOULD deal with it). I am so scared of her getting that sick again. The doctor reassured me that if it was the duct ("bad" murmur), Ella is much bigger and stronger then she was and shouldn't get that sick again. Plus, they are aware of what happened before and are keeping very close tabs on it. Of course, that doesn't stop the absolute terror that is clenching my heart. I want to tell them to do the echocardiogram and who gives a flying monkey about the cost (Which I actually half jokingly said to the doctor)! We have medical insurance for a reason right?! So, anyways, that's something we'll be keeping a close eye on. 

Saturday, November 6, 2010

Our preemie doesn't know she's a preemie

Ella in the dress Great Grandma Carol made for her
Great Grandma Carol holding Ella for the first time <3
35 days old/days in NICU
Weight: 3 lbs 8.5 oz ( +1 oz)

That's what we keep getting told. So far, about 4 nurses in the ICC have told us that Ella doesn't know she's a preemie haha. She acts like a tiny full term baby with how awesome of a breast feeder she is, how awake she is and how aware she is. In all ways, Ella is doing fabulous except for her O2 needs. She went up to 1.5 liters of pressure on her cannula and is getting more doses of the diuretics. If this doesn't work, they may have to put her back onto the high flow cannula and possibly give her another dosage of the steroids. The good thing is though she was doing better this afternoon, with her O2 needs around 40%, compared to 60% yesterday so it DOES appear to have worked. Also, whenever Ella is being held, especially if we're doing kangaroo care with her, her O2 needs drop DRASTICALLY. Like, 10-20%. If anyone ever doubts the power of kangaroo care, you send them my way. Kangaroo care drops Ella's O2 needs AND it brought my milk in. 
In one of the outfits Meghan got for her
Last night I stayed the night and Ella did some really good breastfeeding. Then, this afternoon I was doing K-care with her and she started fussing and banging her face against my chest. I thought she wanted to be repositioned so I tried that and then I felt a little open mouth rooting around on my chest! I brought her to breast and BAM, 11 minutes of nursing!! It was awesome! She is doing SO well, I just can't believe it. 

Tomorrow I'm spending the entire day at the ICC to work on breastfeeding. The sooner she can take all her feedings by breast (and/or bottle) the sooner she comes home so we're being pretty aggressive about me being at the ICC these days. I'm staying 3 nights a week and am planning on spending one weekend day there (the entire day). I worry about Olivia and the effect it will have on her but so far it's been okay because she has Grandma (my mom) whom she absolutely adores. She's actually started telling me to go see Ella because she wants to see Grandma! haha I'm sure there were some other things I wanted to talk about but I'm dead tired after about 4.5 hours of sleep in the NICU last night. 

Friday, November 5, 2010

34 days

34 days old/days in NICU
Weight: 3 lbs 7.5 oz ( -0.5 oz)

Last night Ella got a diuretic and had a really good pee. I'd hoped it would help with her O2 needs but it didn't. She was still needing around 60% of oxygen needs, which is quite a bit. It's been slowly increasing. The doctor checked her blood gas, as well as a few other things and found that things were basically normal except her sodium and potassium were a bit low so they are going to give her supplements for that. I asked what could be causing this and they said it's probably leftover from when she was so sick and from her lung disease. Now, I didn't really know what they meant when they were talking about this "lung disease". First of all, I thought it was something that ALL preemies had and it went away. Second of all, I didn't realize that Ella still had this "lung disease". I came home and looked it up and was really surprised to learn a few things about it. It's not something that ALL preemies have and it can be long term, which they'd told me today when I asked. :( At the end of this post, I'm going to include some information I found that really simplifies it and makes it easy to understand, for those who are interested. I am more worried about this then I originally was. I didn't understand what it meant or how it's caused (check the end of the post). 
hehehe love this face

On the bright side, last night Ella breastfed at both her 8:00 PM feeding and her 11:00 PM feeding. Well, the second one was at 10:30 because she woke up in quite the hungry rage, rooting around looking for my breast. When I brought her to breast, she latched on IMMEDIATELY and started nursing with NO issues for 14 minutes!! That's a really long time without pulling away or stopping at all. I was super excited. I expressed to the nurse that I'd like to try nursing her throughout a day and keeping track of it (called the protocol at the hospital) to see how much she's getting while nursing and if we can wean any of her tube feedings. They were thinking we might be able to do that this weekend, but with her O2 needs going up and her being kind of hazy in the lungs, we're going to have to push that back. We can still breastfeed though. On the bright side, everytime we kangaroo, Ella's O2 needs drop down quite a bit...into the high 30's or 40's. Literally, as soon as she's laid against me, her breathing evens and she needs to be turned down right away. Tonight I'm rooming in so I'll probably spend most of the evening kangarooing with her. 

Chronic Lung Disease (Bronchopulmonary Dysplasia)


What is chronic lung disease?

Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD).

What causes chronic lung disease?

CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:

  • prematurity - the lungs, especially the air sacs, are not fully developed
  • low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
  • oxygen use (high concentrations of oxygen can damage the cells of the lungs)
  • mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)

Who is affected by chronic lung disease?

Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:

  • birth at less than 30 weeks gestation
  • birth weight less than 1,000 (less than 2 pounds) to 1,500 grams (3 pounds 5 ounces)
  • hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
  • pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
  • patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
  • premature Caucasian, male babies are at greater risk for developing BPD
  • maternal womb infection (chorioamnionitis)
  • a family history of asthma
  • breathing problems at birth
  • develop an infection during or shortly after birth

What are the symptoms of chronic lung disease?

The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:

  • respiratory distress (rapid breathing, flaring of the nostrils, grunting, chest retractions)
  • continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation
Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.

How is chronic lung disease diagnosed?

Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 28 days old. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.

Blood tests (test used to determine if enough oxygen is in the blood) and an echocardiography (test that use sound waves to create images of the heart to rule out defects) are also used to confirm causes of bronchopulmonary dysplasia.

Treatment of chronic lung disease:

Specific treatment for CLD will be determined by your baby's physician based on:

  • your baby's gestational age, overall health, and medical history
  • extent of the disease
  • your baby's tolerance for specific medications, procedures, or therapies
  • expectations for the course of the disease
  • your opinion or preference
Treatment of CLD may include:

  • extra oxygen (to make up for the decreased breathing ability of the damaged lungs) and a pulse oximetry to measure how much oxygen is in the blood
  • mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
  • surfactant replacement
  • medications such as:
    • bronchodilators (to help open the airways)
    • steroids (to help reduce inflammation)
    • diuretics (to help reduce excess fluid in the lungs)
    • antibiotics (to fight an infection)
  • intravenous fluids and nutrition (to help the baby and the lungs grow). It is important to monitor the fluid intake, because excess fluids can build up in the lungs and worsen the infant's breathing ability.
  • radiant warmers or incubators to keep the infant warm and decrease the risks of developing an infection
  • nutrition (to help the baby and the lungs grow)
  • immunization against lung infection by respiratory syncytial virus (RSV) and influenza
CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized.