An unexpected surprise and a very good day!! ,

13 days old/days in the NICU

Weight: 3 lbs 6 oz (still retaining a lot of water)

Oh yes. That is EXACTLY what you think it is. A picture of me. And Ella. Together. HAPPY DANCE! Last night, Ella did SO well! She only destated (btw, that is pronounced de-stat-ed, not de-state-d if anyone cares) a few times and usually there was a reason (she was moving around a lot etc). She didn't have any manic reactions to the steroids (WHOO!) and just sailed through the night. They lowered her ventilator so that now she is receiving 50 breaths per minute instead of 60. What that means is that she is doing some breathing on her own! They've also been slowly weaning her O2 all day (very little bits at a time) and she's down to 30%. We (you, me, everyone) breathes 21% so we're getting closer to being off the vent! They left her feedings as they were because of all the other changes but it sounds like tomorrow they'll probably be increasing her feedings a little. 

After I had breakfast in the cafeteria this morning, I came back up to Ella's room and her nurse came to me and told me that her and Ella's doctor thought today would be a good day to hold her. OMG I about FAINTED!!! I hadn't even CONSIDERED that I would be able to hold her! I called Shane and luckily they hadn't left yet so I told him to take his time and now show up until 11 that morning (they want you to do K-care for an hour at a time). Then starts the prep. Doing K-Care with a baby like Ella is not as simple as taking her out of the incubator and handing her to me. It takes two nurses to prepare her cords etc and get her out of the incubator. I needed to change into the hospital robe and wash up. We got blankets and a pillow for my lap. 15 minutes later........

High on the oxytocin rush going through  my body!!!!!!

Today was also neat because my grandma Carol got to meet Ella for the first time. My mom brought her over to my place and I brought her to the hospital. It was a special moment, seeing my grandma meet Ella for the first time! :) Especially since my grandma was also born extremely prematurely, just 79 years ago!!!

Great Grandma Carol and Ella (she got better pictures then I did!)

12 days old and maybe a bright spot??

With the elephant big sis Livia got her!

12 days old/days in the NICU

Weight: ?

This morning, when I spoke to Ella's doctor, she told us that the caffeine and extra meds in her Neb treatments were still not doing any good and Ella was still destating a lot (her O2 levels were dropping). She was still doing the up and down in her O2 levels so they were going to start steroid treatments. The steroid treatments can be really effective but they can have some icky side effects like manic feelings, jumpiness etc. I asked her doctor what we would do if they didn't work and she said the only thing after this would really be to give it more time. It's hard to hear that because at this point, most babies Ella's gestational age are NOT on the vent and most of the time are even breathing on their own. Having her on the vent this long could be causing lung damage which could potentially affect her lungs in the future. Of course, we'd rather have a baby with slightly weaker lungs then no baby at all. 

So today, Ella got her first dosage of the steroids. I called at 3:00 and they'd only done it about 2.5 hours prior to that and there was no update. I called again this evening at 6:30 and spoke to her nurse who told me.............

SHE HASN'T DESTATED ALL NIGHT LONG!!!!!!!!!!!!!!!!!!! Since Monday, Ella has been destating (O2 going down to bad levels) constantly, as much as several times an hour. Since the steroids started to take effect, she hasn't dropped to dangerous levels AT ALL! She has another dose at 10:30 tonight and the nurse said that if the steroids are going to cause her to have side effects, it usually happens after the second treatment so I will be there for that. I'm staying at the hospital tonight to be there with Ella in case she has those side effects. They'll sedate her as needed. Of course there isn't much I can do except a gentle touch, sing to her and pray but it's better then nothing! Plus, it will make me feel better to be there with her. 

11 days old

11 days old/days in the NICU

Weight: ?

As I've mentioned before, for the last few days, Ella's O2 levels have been up and down up and down. Her doctor showed me a chart of it today and it's just crazy. And they cannot seem to find a reason as to WHY it is doing this!! Today they added a new medication (I don't remember what) to her neb treatments, which she gets every 4 hours and they started her on caffeine. We had **really** high hopes that this would work but when I went in to see her tonight, the nurse said that she had still been up and down with the O2. Her doctor said it wasn't the most dangerous thing (basically, it's not lethal) but it's definitely slowly down her progress! I don't really know what the next step is :(. Ella's doctor also said she may just be prone to asthma since I have it and Olivia often needs neb treatments when she has a cold. It's so frustrating because at 29 weeks, the average preemie would not still be on the ventilator and need this much support. I know that she will eventually be off of it, and her doctor even said that with these issues we would still probably see her home by her due date, but it's still super frustrating and it really hurts that I can't fix it. I feel so helpless, especially when those alarms are going off and they're having to raise her O2 or her pressure on her vent. 

Aside from that, a few good things DID happen today! Her feedings were TRIPLED. That's right. TRIPLED. She was getting 1 ml every 3 hours and now she's getting 1 ml AN HOUR! I was super excited to hear that. She was also completely weaned from the Nitric Oxide, which was what they gave her that night that she was so sick and we almost lost her. Surprisingly enough, that was the ONE thing I never asked them what it was for! But I know it's a step forward for her to be off it. This morning, Ella was awake and aware for Shane. They had a nice long conversation while looking at each other. I was so glad to hear that, since I got to experience that twice!

10 days old

10 days old/days in the NICU

Weight: 3 lbs 3.5 oz (+2.5 ounces)

The last two days were kind of rough for Ella. All day yesterday and last night, her oxygen kept plummeting then crawling back up. She would either have too much pressure on her vent or not enough. The alarms were going off and on constantly all day and night. It was super stressful since I spent the night. Every time it seems that she is slipping backwards, I get absolutely terrified that she's going to get as sick as she was last week and we'll lose her. This morning, I talked to the doctor and she said that while of course they can never guarantee anything, she has very few doubts that Ella is going to pull through this. She said that slowly she'll eat, gain weight, get off the vent and eventually come home. She just spelled it out for me and it was a comfort to hear it put like that. According to the scale, Ella gained 2.5 ounces but the nurse and I don't really think that's accurate. If you look at Ella in person she looks a lot slimmer and like her swelling had reduced so her nurse is thinking that it's not an accurate weight. BUT, that's what the scale says so that's what gets put down. The GOOD news is that today they resumed feedings and she is reacting well to them. She's only on 1 ml every 3 hours but that's better then nothing! They are using suppositories to help her poop, but she IS pooping! The doctor also reassured me that Ella is NOT the sickest baby in the NICU (she had been one of them) and that while some of the things she does aren't typical of the run of the mill preemie of her gestational age, nothing she has done is out of the ordinary for a preemie. She said that Ella is acting similar to many other babies her age and that they were not concerned that she would slip backwards.

Ella is starting to self comfort by sucking on her fingers. It's sweet and oh so cute, but it's also extremely difficult for me to watch my 10 day old baby self comfort when *I* should be the one comforting her. I so desperately want to crawl into that incubator and cuddle her against me. She was so distressed yesterday that I wasn't able to hold her which was a HUGE disappointment because I really was looking forward to holding her and doing some k-care (kangaroo care) with her. I know that eventually she'll be fine and we'll be able to do it all the time, but right now, it's so rough. I expressed a concern to the nurse that as she got older she would be cold and not affectionate since she's not being held in these first few weeks. The nurse reassured me that's not the case, and told me that her son was extremely sick when he was born (swallowed his first poop) and she didn't get to hold him for 3 weeks and now he's her most affectionate child, even though he's in college. 

Last night I spent the night at the NICU and got to help with her cares. I got to pick her up to weigh her and then this morning, I got to pick her up to reposition her. After we repositioned her to be laying on her belly she opened up her eyes and was looking at me. We spent a good 10 or so minutes looking at each other and I told her all about her family members and her God Mother Faith and how much each person loved her SO much. Then this morning, she opened her eyes again and I kneeled in front of her incubator and sang to her. The entire time I sang to her, her stats were absolutely perfect. I loved it!! I stayed at the NICU until about 3:15 today and then came home to spend the rest of the day with Olivia. Today is the first day since she was born that I haven't gone to the hospital at night. I spent all night and into this afternoon there so I decided to spend the rest of the day and evening with Olivia. We did lots of coloring and then went to Target. After she goes to bed tonight, I'm going to catch up on some cleaning. It felt good to be able to drive and go places with Olivia today. 

Each day is a blessing!

8 days old/days in the NICU

Weight: 3 lbs 1 oz (-2 ounces of water weight-YAY!)

Health Update: Today was another good day in the NICU! Ella is totally weaned off her blood pressure meds and is keeping her BP steady by herself. VERY exciting! She no longer needs a catheter and actually PEED IT OUT! ha ha I laughed when they told me that. She is peeing very good now and is losing some of that water retention. I didn't realize that she had gained several ounces of water retention and was over 3 lbs. I realize that SOUNDS good but it's not the kind of weight she should be gaining because it's all swelling since she isn't peeing like she's supposed to. After they gave her the two dosages of the diuretics though, it really helped and she's finally losing some of that water retention. You could definitely see that she didn't have as much swelling today. I talked to the nurse today and she said they think she'll be off the vent and on CPAP or the nasal cannula within the next day or two. That's really exciting but I won't be too disappointed if it doesn't happen in the next day or two. I've kind of come to the conclusion these days that I know she will be off that vent one of these days and as long as she's alive and slowly getting better, I"ll take it. I guess I just have a whole new view of life after we came so close to losing her. Her x-ray from today was WAY better then it had been and you can definitely tell that her pneumonia is slowly clearing up. She's still working on getting that junk out of her chest. Tomorrow night, I'm going to spend the night at the hospital and I'm super excited because the doctor and nurse feel that she's finally well enough to start back onto Kangaroo Care. We're so lucky that we have a nurse who absolutely adores Ella (she requests her!!) and is extremely pro kangaroo care and has been pushing for it. Before this, she really was too sick for it though. She would get really distressed during her cares and had to be sedated most of the time. She's finally starting to feel a little bit better though so tomorrow night, I should be able to hold her again!! I'm so excited! 

You can see a difference from yesterday in the swelling!

Olivia has been such a trooper during all of this! She definitely is acting out and has some EXTREME separation anxiety with anyone but my mom, but I think she's great considering the circumstances. She knows Ella and she knows that Ella is her sister. She tells people that Ella is her sister and today she told me that she loved Ella and that Ella was her sister. I about melted and died from the cuteness. I thank God that I have Olivia. Having her makes this easier in a way because I have her to help me take the focus off of being sad or worried. Not that the worry isn't constantly there, but Olivia makes us laugh or constantly amazes us with how incredibly intelligent she is! During the time I was in the hospital, she had another word explosion and now has multiple sentences! Yesterday, I was in the bathroom brushing my hair and she yelled out "Mama! Where are you?" Today, I brought her outside in the front of our apartments to play with her bike and she ended up playing in the mud. Eh, whatever, kids are washable. But then she got all upset because she was dirty. She's turning into quite the little girly girl and HATES being dirty! When her hands get dirty, she holds them up and says "I dirty! I dirty!" and makes us wash them. I just can't believe how much I love my two girls!!!!!!!!!!!! 

Pictures of Olivia playing outside today

Happy 1 Week Birthday to our sweet Ella!

She looks chubby in this picture but that's actually the water retention. 

7 days old/days in the NICU

Weight: 3 lbs 3 oz (the increase in weight is water retention which is BAD weight)

Health Update: Ella is still doing really well. They have continued to slowly bring her vent down and she's currently at a 24 (as opposed to in the high 80's the other day when she was so sick). In order to be moved to the CPAP machine, the nurse said she'd probably need to be between 12-16. Those numbers, I believe, are the amount of pressurized oxygen that's being used on her but I'm not totally sure about that. I keep forgetting to ask and there are so many things that are used on her and so many numbers that I get them mixed up sometimes. But regardless, I do know that when it goes down, it's a GOOD sign! She's also being slowly weaned off her last BP med. I thought she'd been taken off both but I misunderstood and it was just one she'd been weaned off and now they are weaning her off the other one. Ella is still reacting well to the antibiotics and her chest x-ray this morning was a "teeny" (their words) bit better, which is great! In the world of preemies, we'll take a teeny bit! :) She's starting to loosen up the junk in her chest herself too which is super exciting. They suction it out but she moves around a little and gets some up herself. There hasn't been any growth on any of the cultures yet but they are positive that it is pneumonia and are treating her for it. They said that it's not uncommon for that to happen sometimes. I suppose in a way, it is good because it must mean that it's not super bad?! I don't know that makes sense to me at least! Ella is retaining a lot of water and they had to give her another diuretic today which will hopefully help her pee. She's currently on a catheter and we're really hoping that she'll start getting more urine out, to help decrease that water retention. Her neck and around her eyes are pretty puffy. She also still has the heart murmur and they are saying they'll need to treat her with another dosage of the medication to help close that. Shane spoke to the doctor today and she told him that if it it doesn't close, they'll probably have to do surgery on the heart murmur to close it up. I don't know what the chances are of that but from what Shane told me, it's a pretty minor surgery in the world of surgery but definitely not optimal to have to perform surgery on her. 

Today was a really neat day. When I went in to visit Ella today, she had her hand curled up by her mouth and she was sucking on her fingers very lightly. I was SO excited!! It was so precious to see. Her little legs were curled up and she was moving them around a little too. This is the first time she's been so active, but in a calm way, if that makes sense. I was sitting there talking to her nurse, Kelly, and Kelly was telling me how earlier she'd been in the room and was holding on to Ella through the incubator and talking to her for almost an hour. I broke down crying, I was just so touched that this nurse had come in to give Ella a comforting touch. I worry about that a lot, when we aren't there because of course the nurses are there to medically take care of the babies. We have run into two nurses whom I know wouldn't go in there and give the babies a comforting touch. They were very much the job and that's it. Of course, they were two nurses that we had twice, one right after the other so I had a big freak out about how the nurses there must suck. After them though, we've had nothing but wonderful nurses, so that's been a relief. But today, when Kelly told me she was in there talking to Ella, telling her how much her mama and daddy loved her (crying harder!!!!!!!!), I was touched beyond belief. 

It is Ella's one week birthday today. We decided that after such a crazy week with so many ups and downs it was worth a big celebration! So we went out and bought her a balloon in the shape of a princess crown that says "Happy Birthday Princess" and we wrote "1 Week" on it before they blew it up. We also got her a card. We've decided that every month that Ella is in the NICU, we will celebrate her birthday with a card and balloon. Just a little something to celebrate and look forward to while she is in the NICU. 

I have a cute Olivia story to share with everyone too. today, in the Sibling play room at the hospital, Olivia brought me a play white jug that she thought was milk (was actually dish soap) and said "Milk! Milk! Milk!" then she put it near my boobs, handed it to me and then lifted up her shirt to show her chest and said "Milk!" I about DIED!!! It was hilarious. She's so used to seeing me pump by now that milk just comes from boobies and goes into bottles. 

A blissfully boring, uneventful night/day in the NICU

6 days old/days in the NICU

Weight: 2 lbs 11 oz (+1 ounce)

Health Update: Today was an exciting day. Ella received another transfusion which helped her blood pressure to the point where they were able to wean her off the BP meds. It's kind of weird for me to think about the fact that saying getting a blood transfusion is such an exciting thing but it's so minor to us at this point, and helps so much, that it just doesn't even faze me! They check her blood gas quite often and each and every single time they did, it got just a little bit better, which meant they were able to wean her vent a little each day. She's still on it (has never been OFF it since she was put on it, in fact) and I'm sure she will be for a while, but she's reacting well to the pressure being slowly lowered. She had another chest x-ray and they are positive she has pneumonia. Luckily they've been treating her with antibiotics since Wednesday for pneumonia and she seems to be responding well to them. They are still keeping her mildly sedated because she gets so excited easily and she's very active so she burns a lot of energy. She also gets upset easily so keeping her sedated is the healthiest thing for her. It's not like on Wednesday when they gave her something that paralyzed all the muscles in her body (ick!! so scary!), it's just something to keep her calm, keep her sleeping and keep her from being in any pain. Today, Ella also got an ultrasound done of her brain. This is routine for all preemie's to check if they have any bleeding in their brain. When a fetus is growing, they have vessels in their brain that help provide nutrition to their brain. By the time they are born full term, the vessels are gone. With preemies, they are born with the vessels still in their brains and in about 5% of preemie babies, they have severe bleeding which can cause severe mental deformities. We were extremely nervous about this test, of course, because that would totally change Ella's (and ours and Olivia's) lives. We would, of course, deal with it and take whatever God handed to us, but that doesn't mean it wouldn't be extremely stressful. We were relieved to have the doctor call us and tell us that Ella has the most minor grade there is, which is the equivalent of a small bruise on her brain and essentially means nothing. It was one less thing we had to worry about. I'm so overwhelmed with pride for my sweet baby girl. She is so brave and such a fighter. All of this will just make her a better, stronger person. I know that it has already made us so. Shane and I have become closer and stronger as a couple in only the weeks time that we've been on this roller coaster and our family is tighter.

I have a really fun story I'd like to share with everyone too. Every 4 hours, Ella receives "cares". So they check her temperature, change her diaper (which by the way, Ella absolutely DESPISES having her diaper changed! Her oxygen level drops because she gets mad at having her legs messed with!), do "oral care" with breast milk, etc. Well, when we're there, we help out with the cares, which is such an intimate thing to be able to share with your baby that has to lay in an incubator all day, away from your aching arms! Last night, I had the idea that I'd like to express fresh breast milk and give it to her for her oral care because then she would be able to experience the warmth and taste of fresh breast milk. Plus, it was just a sweet, intimate experience for me to be able to feed that to her. The closest thing I can in regards to breastfeeding her right now! So I pumped some fresh breast milk and used a q-tip to moisten her lips and put breast milk in her mouth.

I also got to pick her up today, which of COURSE, I cried during. I didn't get to hold her, she gets far too distressed easily right now while being held, so she has to stay in the incubator. She had to get weighed though and the nurse, whom I adored, let me pick her up while she zeroed out the scale. I actually got to do it twice because she wanted to double check. I wanted to crawl into that incubator and cuddle her against my chest, but at least I got to have her in my hands and feel her precious weight against my fingers.

Also, here are some pictures of Olivia playing at the Sibling Play Room at Children's. We bring her and I bring her in there while Shane visits Ella and then we switch off. I love how this hospital does everything they can to make this as easy as possible for families!