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.

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! 

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. :) 

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. 

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. 

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

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!!!