Welcome Home Ella!!!

Getting ready to leave....this is a car bed!

One proud and very "helpful" big sister

Getting Ready to Leave

Ella's Last day in NICU

Maddi the Blankie Monster

Our first car seat attempt!

Well we are officially one big happy family now and all under the same roof. Exactly 4 weeks from the day Ella was born. It's hard to believe it's been a whole month. Ella had her carseat test on Tuesday night and failed it pretty bad. After about half an hour she desated down to 60 (this is really bad) and she changed color so they scooped her out of the car seat and put her in her bed and she resolved it on her own but then she had 3 bradys after that. So the doctors decided that since we will be taking such a long car trip across the country that they wouldn't even try the car seat test again, and just give her a car bed. Who knew they even made those! It looks just like a car seat except that it's flat. Being in a laying position makes it easier for them to breathe when their muscles aren't strong enough to hold their head up. She will eventually transistion to a regular car seat when she gets a little bit bigger but for our big move, its the car bed for Ella! When we tried to put her in the regular car seat we had such a hard time getting it to fit right, and it really put it in perspective for us on how tiny she is. She's actually pretty big for a NICU baby (5 lbs 12.2 oz) but that's still much smaller then our other babies. Anyway after our monitor training today we were ready to go home. It was so nice to eat dinner, put the girls to bed and for the first time in 4 weeks not have to leave the house again! And so far we're doing good....we'll see how the night goes. haha

Ella update....Finally!

Well it's been a crazy couple of weeks (I actually can't believe it's really been that long since I last updated the blog....being in the NICU feels like time stops and you enter a different world...I can never keep track of days or times...we feel like we just go and do what needs to be done and then move on to the next thing) but I know people have been wondering what's the latest news with our crazy life so bear with me as I recap (for journaling purposes!) and get to the latest and greatest with little Ella.

Monday April 13th

Lance came to the hosptial for the day and they took Ella completely off oxygen and she did great all day and right before he came home the Doctors came in with results on the cultures of Ella's lung Infection. It was determined that she had Ecoli in her lungs. Another one of those fun bacteria (like group b strep) that just lives in our bodies and doesn't do anything to us but that can be fatal to babies. Apparently bacteria can travel up into the uterus and infect the amniotic fluid without any signs of infection to the Mom. We are fairly certain that she developed the infection while in utero which would explain the preterm labor and the need for her to get here so quickly. Thankfully at that point though on Monday she was over the infection.

That evening however Ella was put back into the isolate, was not allowed to eat and got an IV in her head for fluids because they had noticed that her belly was enlarged on after an x-ray they saw that her intestines were dilated. This is one of the signs of NEC a very scary/fatal infection preemies can get when their intestines do not know how to digest their food properly and the intestines basically die. They have to be very careful with this and watch for the signs because if a baby has this infection they can die in like 10 hours if left untreated. This was not fun news to hear but by the morning after careful observation and a very hungry night for Ella the doctors decided that it must have been a false alarm since she didn't show any other symptoms and that it was okay to start feeding her again.

Wednesday April 15th

I was able to start nursing her once a day and she was taking everything else by bottle and things were going okay but by Thursday or Friday she had lost weight (and was still not back to her birthweight) and was taking less at each feeding and basically working too hard to eat and burning more calories then she was taking in so her feeding tube went back in (not a fun day) and was only taking every 3rd feeding by bottle.

Saturday April 18th

A rough day as we watched how badly Mia was wanting to be able to see her little sister for the first time and we couldn't do anything to heal that little ache.

Monday April 20th A GREAT DAY

RSV season was officially OVER in Indiana which meant siblings were now allowed to visit the NICU. This couldn't have come at a better time since our family had reached the breaking point of waiting for this. Little Mia was the most excited little kid I've ever seen as I was pregnant with Ella and would ask me every day when she was coming out, so to have her come and not be able to let Mia see her was just heartbreaking.

But seeing the girls walk down the halls of the NICU to see their little sister was a wonderful thing. Maddi kept saying, "I go NICU" Kind of sad that a 2 yr old would have that word in their vocabulary. Mia immediately came home and starting "Playing NICU" with her babies. She put them in plastic tubs on top of a stool (similar to an open air crib) and used the cords from a cellphone charger down the babies shirt (just like Ella's monitor cords). When we told the Nurses that night they put together a little "NICU kit" for the girls with tiny diapers, hospital hats, tiny bottles, and leeds. They were pretty excited the next morning.

The slow down on feedings started working and Ella immediately started gaining weight. And slowly but surely we got her taking every other feeding by bottle and nursing twice a day. She was doing well with this but she started having some more Bradys where her heart rate slows down. In preemies because their brain is still immature it forgets to tell the heart to keep beating sometimes. Usually after the alarm sounds a few seconds later the she will just self resolve and things go back to normal and most babies grow out of this fairly quickly but if they were not able to self resolve CPR would have to be started on them which is kind of scary! Usually the rule in the NICU is that they have to go 5 days without a Brady before they can go home but in our case (where Ella wasn't having a multiple bradys each day and where we are moving soon) the doctor said that if she continued to have bradys then she would be sent home on a monitor instead of making her stay longer in NICU. This was a relief to us since trying to get ready to move is difficult when you are also trying to be a Mom in two different places and for Lance trying to fill in for me and also finish up his semester! Thank goodness for Grandma Tresa she was an absolute lifesaver in addition to our incredibly wonderful friends in our ward.

Thursday April 23rd

Things were still going well and we had increased Ella's nursing but it was looking like she still wouldn't be coming home for another week at least so on Wed. Lance and I extended my Mom's trip a week so that hopefully we could have her with us for a few days after Ella came home. And then Thursday afternoon while my Mom was watching the girls she fell on our driveway and fractured her knee cap! It was a horrible night as Lance took her to the walk-in clinic after work and we found out the terrible knews. And my poor Mom was in so much pain that whole night. So Lance took the night shift at the hosptial while I stayed with my Mom trying to make her as comfortable as possible.

Friday April 24th

We took my Mom to the orthapedic surgeon and he said that she might not have to have surgery if she could keep her knee completely straight (with the help of a brace) and that she could even walk on it. He did say it would be best to get her home asap so that the knee could be monitered by x-rays closely in case it started separating in which case she would have to have surgery.

Saturday April 25th

We found a plane ticket for my Mom to head home on Tuesday. Ella was still doing well and had gone 3 days without a Brady

Sunday April 26th

I went to church for the first time since Ella was born and was overwhelmed by the support from the ward after they had heard about our most recent drama with poor Grandma's broken knee. On my way from church to the hosptial one of the Nurse Practioner's called to say that Ella had had another Brady which would mean she would for sure be going home on a monitor. Not terrible news, but also not great news.

Monday April 27th

They took a brave step and took Ella's feeding tube out and let her run the show with feedings. I was able to stay most of that day and nurse her 3 times in a row and she was such a happy baby. She decided to eat every 2 hours those first three feedings and was so content in between and much more alert and crying (like a normal baby) when it was time to eat again. That night she took her bottles well and got back on a 3 hour schedule. And Grandma Tresa was able to come with me to the hosptial to say her final goodbyes to Ella.

Tuesday April 28th

Lance and my Mom headed off for the airport at 5 in the morning and I got the hospital around 9 to hear some WONDERFUL news. Ella had gained weight after doing her trial run with no feeding tube on Monday so things would continue the same and provided that she continues this way she will go home on Thursday!!! I'm trying to not get my hopes up too too much just in case something happens but it's nice to see things progressing. She will have her car seat test tonight (a 3 hour one since we have to drive to Washington in 4 weeks), Wednesday Lance and I will do CPR training, and Thursday we will do the Monitor training and that evening go home. Keep your fingers crossed for us!

More good news: I just heard from my Mom who arrived safely home and had her appt with the orthopedic surgeon who said her knee is looking great, will heal in 6 weeks, and she will not have to have surgery. We were all so relieved to hear this!

The Best Day!

My Mom got here late Thursday night so Friday morning I got to leave the girls with Grandma (yeah for having Grandma here!) and when I got to the hosptial Ella was off her C-pap and just on the heated nasul canula and on room air oxygen. I couldn't believe it! When the doctor came in to do rounds they told me not to be disappointed if she had to go back on the C-pap because that happens sometimes and then told me that I would get to hold her. And I think I was on cloud nine all day. I honestly hadn't thought too much about holding her up to this point because we had been so worried about her and wanted her to get better that not being able to hold her was lower on our list of concerns and frustrations but when they put her in my arms it was the best feeling in the world. Here stats were great the whole time and she kept her temperature great also. And right after I put her back in her bed she opened her eyes and was the most alert I've seen her since she's been born. When they did her next check-up they said her lungs already sounded better (up to this point she was still having chest therapy and albuteral treatments every few hours to try and clear up one last area in her right lung that still had some gunk in it) so this was wonderful to hear. I got to hold her twice on Friday and then Lance and I came back to the hospital after the girls were in bed to have Date Night in the NICU. :) And Lance got to hold her and getting to see him hold her was just as great as getting to hold her myself.

Saturday we had even more progress. They took her canula down to 2 litters (this is the amount of pressure she is getting and she had been at 3 litters the day before and provided that her stats stay good they continue to wean her off). And then Saturday Night my Mom and I came down to the hospital and I got to put her in clothes and she got to move to a Big Girl Bed (aka. an open crib without a warmer). It was very exciting and thanks to her little friend Kingsley she is well outfitted with lots of adorable premie clothes! (thank you Lindsay).

She did well all night and when I got here this morning they said she was holding her temp. well, and they just moved her to 1 litter on her canula so we will see how that goes. Her doctor this morning said the next steps (leading to going home) will be to get her off the canula and then start doing oral feedings. Once they see that she is able to getting eating down without having alarms (where her heart rate is too high or low, or her oxygen level gets below 85%) and she is gaining weight then we will be able to take her home. The Nurse Practioner would not give us any time frame for when this might happen though because she said this is the first couple of days where she had actually started looking better. They did say that her lungs sound completely clear now which is so so good.

that's kind of where we are at right now. Things are looking up and we've just been so so grateful for our wonderful friends her in Indiana who have done amazing things for us these last couple of weeks. Since our family is all so far away it's such a blessing to be surrounded by such wonderful friends who fill the void. And we are now so grateful to have Grandma Tresa here (Mia and Maddi have been soaking up all the one on one time...it's amazing how even when they haven't seen their Grandparents in a long time...I think it has been over a year since we last saw my Mom...that they instantly have a bond with them and just somehow sense how much they are loved). And we also so appreciate all the emails, blog comments, and phone calls, from our family and other friends who are all over the country with prayers and concerns. We love you all.

I included a couple pictures from Easter morning before my Mom and Lance and the girls headed off to Church. Ella and I decided to keep up our little family tradition of spending Easter Day in the Hospital! Both Mia and Maddi were born different dates but still on Easter Weekend which meant we were in the hosptial on Easter and we used to joke about Ella somehow coming on Easter Weekend but looking at the dates thought oh well that's not possible...but somehow she found a way to make sure she fits in with this family!

No more Vent!

After the Vent with C-pap

With the Ventilator

So on Tuesday morning they took Ella off the ventilator. I was so glad I got to be here when they did it. And she did great. They tried going straight to a heated nasal canula which is just the little thing under their nose that gives a little bit of oxygen. She did well for awhile but they later had to put her back on the C-Pap. Something neither I or Ella are big fans of. C-Pap goes in the nose like canula but it's bigger, bulkier, and way more uncomfortable for her and she has a tendancy to just pull it out of her nose over and over. I guess she did okay during the afternoon when Lance was there but by the time I got back to the hosptial in the evening she was not at all happy about the C-Pap. She pulled it out any chance she got and after keeping 3 nurses in her room, for 3 hours straight they finally decided to take her off the C-Pap and try the canula again. And as soon as they did that, she was happy as a clam, and completely comfortable. I stayed the night that night and she seemed to do just great throughout the night but by morning they did a blood gas test on her (this tests the levels of oxygen and carbon dioxide in her blood to see if her blood is absorbing the extra well enough) and her levels were not as good as they should have been so it was BACK to the C-Pap. Lance said she struggled with it and wasn't too happy during the day but last night we had an awesome Nurse who took alot of time trying to get the C-Pap as comfortable for her as possible and it worked and she slept pretty much the whole night. You'll see from the pictures how uncomfortable it looks. Her poor little nose looks like it's being smashed and pulled apart at the same time. You'll also notice shiny stuff all over her eyes which is ointment for an infection she got in her poor little eyes. After doing a culture on the goopy stuff coming out of them, they determined that it was the same stuff that has been coming out of her lungs and proabably just spread to her eyes. For Lance and I this was actually good news because Maddi had been treated for pink eye on Sunday and when I walked in Ella's room Monday night and saw goopy stuff all over her eyes, I was scared to death that somehow she had caught Maddi's pinkeye (pretty difficult since children are not allowed in the NICU until RSV season is over!)

As far as a time frame for when she might come home, we haven't been given one by the nurses or doctors but they have said that it looks like she may be able to come off the C-Pap in the next couple of days and from there I think it's just a matter of her continuing to breathe without assistance and then learning to eat etc etc. She has been tolerating her feedings (through the tube) and they've been able to increase them each day which is good and so far her bowels have been doing what they should be. The Nurses joke that the NICU is the only place where people get excited about poop! But if they aren't pooping then it could be a sign of serious infection so stools are well watched here. :) The things you learn!

Progress Progress

So I spent my first day away from little Ella today. Sunday late afternoon I came home from the hosptial and we had dinner as a family and put the girls to bed and then Lance came back to hospital to stay the night with Ella while I stayed at home and then he stayed all day until about dinner time this evening. It was amazing to me when I walked in tonight to see her because she already looks different to me. Her swelling has gone down even more, so it's easier to see her face and she was TRYING to open her eyes a little bit.

And she is making progress. It's really looking like tomorrow they will be able to wean her off the vent. They took the billi light off today. They started feeding her a little bit of milk today and so far it's seemed to go okay. We'll see by the end of tonight if she starts having stool in her diapers then we'll know she's digesting the milk okay. Her oxygen levels have stayed around 22-25% today and she's been very calm and relaxed. They are still having to suction her out quite a bit to get rid of all the secretions from the infection but that is a good thing because it means she's getting better.

My Mom is officially coming on Thursday which we are very excited about and Maddi turns 2 tomorrow! Happy Birthday Maddi. :)

Billi Lights

On Saturday Ella got to spend some time under the billi lights to help with some jaundice. We were just laughing because not only did she get to wear the cool looking sunglasses but because she gets so thrown off whenever she's disrupted or hears extra noises they also gave her some awesome yellow ear muffs to block out added sound. It's really sad when she gets upset because she can't make any noise when she cries. She looks like she's crying but no sound is coming out and Saturday she started coughing up a lot of the secretions from the lung infection and it was really uncomfortable for her when they had to suction her out so she would get upset and have to be calmed down again and I just loved these pictures of Lance holding her little hand when she was really upset one of these times and he was able to calm her down. Because we can't hold her yet it's hard to know how to help her or do really anything for her besides just be here so it's fun when you feel like you've done SOMETHING! :)

Much Better Day

Here are a few pictures from yesterday when they were getting the ventilator set up. So Ella had a much much better night last night and has done well all day today. Her chest x-ray looked a little better today and they were able to keep her oxygen at 30% or below almost all day. I think she even got to 22% at one point. They have been adjusting the numbers on her ventilator as they have seen her progress and I don't understand all the details yet, but the jist of it is that the more they take her numbers down, the more they allow her to do on her own as part of the weaning process. Tomorrow they plan to continue to wean her until they can take her off hopefully tomorrow night. They told us today that they still feel that there might be some pnemonia in her lungs so she will need to continue to stay on antibiotics for another 7 days. The neonatalogist said that we shouldn't plan on her coming home at that point though because we will still have lots to do in the way of helping her learn how to eat etc. I guess this is the one benefit to seeing 2 good friends and my sister go through this NICU experience before us because the idea of her staying in NICU for possibly a month or so doesn't seem so shocking given what they experienced. We're just kind of taking one day at a time here and hoping for the best. Also on a positive note we may be able to get my Mom to come out here as early next week thanks to our friends with some inside connections in the pilot world and that will be so helpful as far as babysitting goes. Our friends here have been just WONDERFUL and it's been so nice to have places for the girls to go without having to worry about them, but I know at some point they are going to need some more structure and having a 3rd adult IN our home will be very very helpful especially when it's a Grandma. :)

As for me, I was supposed to check out today but the doctors decided to keep me until tomorrow. I am doing really good with everything as far as the delivery goes but I've had a pretty bad headache/lightheadedness since I delivered and it just hasn't gone away. I feel much better when I'm laying down and don't have trouble sleeping so they had me talk with an anestehiologist to see about an epidural headache which is something you can get as a result of an epidural where a little bit of spinal fluid can leak out into your body. He said that it doesn't look like I have a true spinal headache because I am still able to function and if I have a mild one, it can be resolved on it's own (without having to do a blood patch which is where they essentially go back in like they are doing an epidural again and put some blood back in there to solve everything....not something I really want to do again) with time. The annoying thing is that this type of headache is not affected by pain medicine at all so it's just a matter of getting lots of fluids and rest.

And that's the update on us! Thank you again for all the help, calls, concern, prayers, and love.

Baby Update....rough day...but looking up

Well today started out a little rough. After a chest x-ray this morning the doctors thought little Ella (we named her Mariella Ann) had some type of infection in her lungs like pnemonia. Since she is already on IV Anitbiotics there was nothing to change. She continued to have trouble breathing though and was working so hard to do it, that they decided to put her on a ventilator. After putting her on the ventilator she was still not relaxing and her blood pressure had dropped enough that they were worried about her body's ability to absorb all the extra oxygen she was being given and decided that a blood transfusion was neccessary. They had also done another chest x-ray and determined that while the first x-ray made it look like her lungs were fully developed and we were just dealing with infection, this second one showed that her lungs still needed some help expanding so they gave her another round of surfactant (which helps lubricate the lungs making it easier for them to expand). They were also still trying to play with the numbers on her ventilator to make her more comfortable (up to this point she was still trying too hard to breathe on her own), and so they could start lowering the amount of oxygen they were giving her (they had to start giving her 50% or higher for most of the day....and goal is to get her breathing what we breathe about 21%) I feel like I'm learning another language here trying to understand what all the different numbers, terms, and alarms mean! Finally at the end of the day here we are seeing some positives. They finally got the ventilator to work the right way for her and she started relaxing and getting more comfortable and able to just sleep which she so badly needed giving all the stress her little body had been put through. And probably about the time Lance went home for the night around 4pm things have been going up up up. They were able to start lowering her oxygen levels (she is currently at 27% which is just wonderful) and after the blood she was given her heart rate had gone up too. She is holding steady with all the new changes and they have even been able to adjust some of the numbers on her ventilator so that she is doing a little more work on her own. They plan tomorrow is to slowly try to wean her off the ventilator and possibly give her some food. We will see how things go and we'll keep you posted on changes. Thank you for all the prayers, concern, and help everyone has given us we really appreciate it.

During all the craziness of today one fun thing was that I was able to get a few pictures of her without anything on her little face and to actually kind of see what she looks like. She has quite a bit of hair (kind of like Maddi did) except it is blonde (like Mia's was). And speaking of the other girls they came to the hospital once today and while I was sad to see that they both seemed to be struggling to understand everything going on here (for instance Maddi didn't really want anything to do with Mommy) the cute thing was that while I was sitting in the waiting room with them while Lance went to see Ella, I could tell Maddi wasn't happy so I tried to get her to come sit on my lap with her blankie and cuddle (something she normally responds well to) and she did not want to do that, but a few seconds later I noticed Mia sitting on her little chair and saying "Come here Maddi I'll hold you" and then she scooted Maddi onto her lap (slightly awkward since they aren't THAT different in size) and Maddi grabbed her blankie and started sucking her little finger while sitting on Mia's lap. I thought, "well if I can't comfort her at least she has her sister". Kind of heartbreaking but cute :) Also tonight after Lance put them down for bed he went to check on them and Mia had taken all her pillows and blankets and books, put them all in Maddi's crib and they were reading books together. Must be their little coping mechanism to just stick together. :)

I'll post pictures later.

Unexpected Arrival

For those who haven't heard our little baby girls decided to come a little earlier then expected. I was 34 weeks along and due May 13th. I started having contractions Wednesday morning and after spending a day in the hospital we were sent home on the hope that it was all a false alarm. That night after the contractions didn't stop and continued to get more painful we headed back to the hospital around 1am. The doctors decided to not to try and stop labor because 34 weeks is considered the cut off for the "safe zone" for babies. Lance and I were worried but felt pretty good about this decision. She was born around 6am and weighed 5 lbs 4 oz. 18.5 inches long. She was pretty good sized for 34 weeks.

Right now she is in NICU. Her lungs aren't fully developed so she is hooked up to a few different machines to help her breathe and she is working on getting strong enough to do it on her own. We'll try and update this as we go along to keep everyone posted on things here. Here are a few pictures from today. I got to hold her for a few seconds after she was born before they wisked her away to NICU. And the girls came down to the hospital but since they aren't allowed in the NICU Lance and I took some video to show them and they settled for that!
Thank you for all the help and prayers.