Caden held Emma!

Things continue to go well. Emma is up to 2 lbs 14 oz. She is at 24 cc/ml every 3 hours. Her o2 stays between 22-30% but is typically around 25%. She continues to have less and less spells. she only had one brady episode on the night shift last night. I was able to help weigh her last night and do her vitals. I was going to give her a bath tonight, but I'm just WAY too tired to head back down there (she doesn't get a bath until 9:30 or 10 at night).

We took the kids to see her tonight and decided that Caden could hold her. Unfortunately, we didn't have our camera so they took a polaroid of him. I'll have to scan it tomorrow. He was so cute and gentle. He was telling her all about Thomas the train. He got a kick out of her making squeaking noises. She even relaxed enough to have a good poop on him (yucky). She is getting alot stronger and youo can hear it in her cry. Sean held her for a few and then I put her back in her bed. The kids were amazingly well behaved today (normally lily is screaming, yelling, and trying to run away, and Caden is climbing all over the chairs and opening and shutting the isolette doors).

Oh, a side note. Emma was moved to the next door NICU. They only have 3 babies in the NICU right now so the condensed them down to the one room. It's not as cozy. It's one large room and just feels more like a hospital. I KNOW it's a hospital, but it felt more cozy "next door".

Still doing well..

Emma is still doing well. She continues to need her small bit of oxygen. It ranges between 21-30% throughout the day. She normally needs closer to 30% during her feeds and goes down to the low 20's throughout the rest of the day. She now weighs 2 lbs 12 oz. You can really tell she has gained some weight. She's getting 23 cc/ml over a 1 hour period every 3 hours. She is handling her feeds well. She is still having quite a few spells, but there is less brady and it's more of the desats at this point. She is only having about 9 brady spells a day which is ALOT better than what she is having. The ones that she is having are more self resolved at this point which is also great. Unfortunately, she needed another blood transfusion this morning since she is anemic which means she had to be poked again. Poor baby. Other than that, not a whole lot to report. Sean and I have a class tonight on preemie care and bringing your preemie home. They only offer this class about once a month unless there are ALOT of babies due to be discharged so they offered it to us to get it out of the way. So, we'll be doing that tonight. Oh, and Emma is now wearing clothes (shirts which look more like dresses).

3/23/06 Update

Quick Update: Emma is up to 2 lbs. 10 oz. She had her eyes checked yesterday and so far so good. There is nothing which would lead the doctor's to believe she is in danger of having any vision issues at this point. YAY. She is now 15 inches, so she has grown 1/2 inch since she was born. Today she was up to 22 cc/ml per feeding. They give her this over the course of 1 hour through her pump, every 3 hours. Tomorrow they might try giving her the feeds through a hanging syringe, instead of through the pump. Which basically means she'll get it at a much faster rate and it would be one more step towards starting nipple feeds. She is beginning to pull out her canula constantly which is good and bad. Good because they are going to try to wean her since she is doing it, bad because she sometimes gets spells when she does it. Speaking of her spells. She is having fewer spells now and the ones she is having are more "self resolved" now. She is still needing some stimulation at times, but definitely nowhere near where we were last week. All in all she is doing well. We have been given the go ahead to put nicu shirts on her so the next pictures you see she'll probably be "all dressed up"!

3/21/06 Update

Emma is doing well overall. She is up to 2 lbs. 9 oz. She had the probe test done to measure her acid reflux over a 24 hour period and we should get the results back tomorrow. She is now getting 20cc feeds, over a 2 hour period, every 3 hours. She is handling it well so far and digesting it. Her spells are getting less and less and she is resolving more of them on her own. We are SO proud of her. She looks great, her color, her skin, she has tons of dark hair (although towards the front it looks like she got a bad blonde highlight job done. lol). The nurse today said she can start wearing light shirts and onesies. I am so excited. If we go see her tonight than I will bring some and hopefully the night nurse will let me put them on her and we will snap some pictures. Seems as though she is on an upward swing now. We're hoping she continues. If all goes well without any setbacks than it's just a matter of weaning her off of her oxygen and getting her big enough to maintain her own temperature (around 3 1/2 pounds), and getting her to be able to take all of her feedings from breast or nipple. Oh, and of course to stop having her brady/desat spells. It's hard not for us to get giddy about her progress, but we know that anything can happen. So, all is well. Here are a few pictures from the past few days, including a few of Lily and Daddy baking cookies for all of the nurses!

3/16/06 Update

Sean and I have been trying to spend some more time with the kids and focus more on eachother. It's been rough over the past few weeks with our stress levels so high. It's definitely taking EFFORT to remain positive through this all. From what I've heard this can either break or make a couple and we're determined to make it out even stronger. So that's why there hasn't been an update for a few days. We actually didn't even turn on our computers yesterday evening at all!

Well, Emma has put on some more weight. She is no 2 lbs. 5 oz. YAY! You can definitely see the difference too. Her neck is almost starting to get a roll. She is just getting cuter and cuter by the day. she's now up to full feeds (6 cc/ml per hour). Her PICC line started to clot today so they went ahead and removed it. They're hoping not to have to put it back in. It was used to deliver her fat emulsion and added nutrients, but now with being on full feeds she shouldn't need it anymore. It's so nice that she doesn't have any IV's or anything in her now. All she has is the NG tube which goes down her throat and into her tummy for her continuous feeds and her nasal canula for oxygen. She is still requiring about 25-35% oxygen through the canula. When they try to bring her down to room air she starts having more spells. It's just a matter of her maturing a bit in age and size. Hopefully as she gets bigger the spells will lessen.

There is a concern with her still having oxygen. The longer she is on oxygen the higher chance of retinopathy of prematurity (ROP) and having vision issues. At this point though there's really no choices. She needs the oxygen. She will most likely be tested for ROP sometime next week. Her hearing tests can't be performed until she is in an open crib since they are sometimes affected by the isolette noises. Once she can maintain her body temperature on her own and handle the noises of the NICU she will move into an open crib.

Sean and I are now able to hold her pretty much whenever we want. It's starting to feel more like she's actually our baby and less like she's a baby we gvo to visit and have to get permission to touch. That is a great feeling to be able to touch our daughter without asking if it's ok. We've learned to wtch her monitors, and her color and how she's acting to know when to just let her rest or when she would be better off being held. She seems to know us and typically does better while there, especially when we hold her skin to skin. Yesterday and today I even took her out of her isolette, swaddled her, and untangled all of her wires to hold her all by myself. I felt so accomplished!

Other than that there hasn't been a whole lot of change. They did up her caffiene since she seems to have all her apneac episodes and brady episodes while asleep. They're hoping the caffiene will help.

I will probably not update again until Monday, unless there is another major milestone or setback.

3/12/06 and 3/13/06 Update

Before I update on Emma I want to thank another one of my forum, The swap n shop forum members for their contributions towards a gift card. We'll be using it to buy a fisher price cradle swing when she gets closer to coming home. Everyone's continued generosity is just amazing. THANK YOU and God Bless You!!!

Yesterday Emma was up to 2 lbs 3.8 ounces. She was on 3 cc/ml per hour feeds and minimal oxygen through her nasal canula. We took Nana Mary and Great Grandma Stanford to see her. Lily didn't go in since she has a cold starting but Caden came in for a quick second. Both Sean and I were able to hold her for a few minutes. They had just finished putting in a new Picc line so she was already out of her isolette. I just LOVE holding her. We went back to visit her around 9 so I could bring more milk and we both got to hold her for a little while longer.

We went back today, 3/13/06 at lunchtime and Sean held her kanagaroo style, skin to skin. He was just loving it! I pumped while he was cuddling with her. Her stats were good while he was holding her. They both got so comfy in the rocking chair that they took a 40 minute nap together! Sean was as content as to be, and Emma looked pretty comfy too. I really wish I had the camera. We'll be going back tonight so maybe I'll get to hold her (I hope). She went down 2 grams today but is still weighing 2 lbs 3.6 ounces. Her feeds are up to 3.5 cc/ml per hour. MORE than halfway to full feeds. They started her on Reglan and Zantac today for her Reflux issues (her esophogus is still not mature so some of her food is coming back up a bit which is causing some of the "spells" she is having). They are hoping that her spells will decrease. so are we. Overall, she is doing well though. Maintaining her weight, not requiring too much oxygen and pretty stable.

Here are a few pictures from yesterday's visit.

3/11/06 Update

Just a quickie update. Emma has surpassed her birthweight. YAY! She is weighing in at 2 pounds 3.8 ounces. Yippee. Way to go Emma! She was having less "spells" yesterday. As far as I know her blood tests were still not back. She has not had her PPIC line re-inserted yet. She is on minimal oxygen through the canula. Still at 2.5 cc/ml per hour on mama's milk. All in all doing okay right now. Sean and I each got to hold her for about 10 minutes last night. I LOVE holding her. Unfortunately, we did not bring a camera with us. The ONE time we forget the camera. Oh well. We will be going back with Sean's mom and grandma after chrch today. We'll take the camera to get some new pictures. In the meantime, here are a few pictures from about 2 days ago.

Real quick. Thank you so much to the woman from my Mommies without Labels forum for your contributions towards a gift card to help get things for Emma a little later one when she gets closer to coming home. That was very very thoughtful of you. You guys are wonderful and true blessing to our family.

Special Thanks to Kristin and her family for the 2 adorable preemie outfits complete with bibs and hats. They are oh so cute. I can't wait for Emma to be able to fit them!!!

Without further ado, here's our precious Emma...

3/9/06 Update, another step back

Well, we took the kids to visit Emma last night around 5. the kids weren't being that great while we were there so we didn't stay long. They had decresed her feeding from 3.5 cc/ml per hour to 3 cc/ml per hour because she was having alot of "spells". They also told us she was having some reflux issues most likely because her esophagus is immature and that it's common. Well she had a major spell while we were there and stopped breathing. She did eventually recover on her own, but it took a LONG time. We ended up not being able to visit her later last night (much to my dismay but I'm way to exhausted, emotionally and physically to go into details).

My mom and I went earlier today to visit. her. She looked good. I took her temprature, changed her dirty diaper, turned her onto her back. held her soft little head for awhile and she maintained her oxygen level and didn't have any spells. So that was nice. She was very alert, kicking her legs, moving her arms, "chewing" on her feeding tube, etc. They ended up turninhg off her feedings COMPLETELY. So she is not getting any of mama's milk for now. Her doctor thinks she might not be handling the feedings very well and might be having these increased incidents of spells due to an infection, possibly cause by the PPIC line in her leg. She had blood drawn, but it takes 3 days to get results back. In the meantime they are going to remove her PPIC line and have started her on 2 antibiotics just in case it is an infection. We will know for sure in a few days. If it turns out it's not an infection then the antibiotics will be discontinued. Apparently she was still having quite a few spells before I went in this morning.

This rollercoaster ride sucks. All we can do is hope and pray that she continues to progress. 2 Steps forward and 1 step back.

I'm hoping Sean and I can make it over there again tonight. Caden is spending the night at my mom's so hopefulyl after Lily goes down for the night we'll be able to go and spend some time with her. I also hope to add some more pictures sometime soon.

3/6/06 through 3/8/06 Update

Sorry I haven't updated in a few days I have been exhausted and then was waiting to upload some pictures and still haven't gotten around to it. I figured I would give a quick update pictures or no pictures before somebody really got worried.

Emma has been pretty stable over the past few days. Still having some desats and brady "spells" in response to lots of noise or being too stimulated but she seems to be recovering from them well on her own. On the 6th they tried to take off the nasal canula but she didn't handle it well so it went back on. She still needs that extra little bit of "security" which is fine. She is only 2 1/2 weeks old. They tried to up her feeding from 2.5 cc/ml per hour yesterday but she started having more desats and brady spells in response so they brought her back down to 2.5 and decided not to "push her" too quickly. We took the kids to visit her with Nick night before last. We didn't touch her, just looked. The kids were excited to see her. I got some pictures which I will hopefully get up sometime tonight or tomorrow.

I stopped in for about 45 minutes yesterday morning. She was doing well and sleeping. I pumped while I was there (which was a big ordeal since they lost the pump parts which had been "issued" to me. They had to go on a search for new parts. But after after about 30 minutes they found me some new parts (which apparently cost $100 bucks just for the tubing, 2 phlanges (the part which touches your breasts) and 2 bottles...OUCH! The nurse had never met me and was somewhat of a "negative individual" as my husband would say. If she takes care of Emma again and comes across the same way I think we'll ask for her not to take care of Emma anymore. Sean and I decided to take a night off and didn't make it back to the hospital last night. Instead we spent some much needed time with one another.

I have already made one stop today (around 11:00a.m.) She was resting peacefully. She was on 30% oxygen (21% is room air) through the nasal canula and they had "successfully" raised her feedings to 3.5 cc/ml per hour. so far she was handling it okay. Once she reaches 5 cc/ml's per feeding she will be cnsidered to be on "full feeds" for her size and age. That is one ounce every 6 hours. I didn't stay very long. We plan on heading over there with the kids again in a few minutes when I'm done pumping and Caden wakes up from his very late nap. I will try and update with some more pictures sometime tonight. I know we all love new pictures!

Oh, and one more important piece of information, Emma is up to 2 lbs. 1 oz. Almost back up to her birth weight. YAY! Hopefully she'll keep getting bigger and stronger with no major setbacks.

Donate to March of Dime's on Emma's behalf

I have created a band in honor of Emma and her fight with prematurity on the March of Dime's site. You can help March of Dimes fight against prematurity by making a donation on Emma's behalf. Please do not fill obligated to donate. This is for those of you who feel compelled to do something but do not know what to do. Once again Sean and I are grateful for everyone's continued support and prayers!

3/4/06 Update: Lily's 1st Birthday Party!

We celebrated Lily's birthday party today. Overall it went over well considering the stress and everything else. We did a garden/ladybug theme. Sean made Lily's cake and I decorated it (pictures below). I think it turned out beyond cute and am quite proud of myself. Lily ended up sleeping through the half part of her party. We had to wake her up for cake and presents. She ended up being fairly cranky from being woken up though. The pinata was a hit again (no pun intended). Caden was whacking the daylights out of it. Even the adults got in on the fun (Come on, how else would it finally break open?) After the pinata, we had cake. Lily cried when we sang to her but her tears ended when she got her first taste of her birthday cupcake. she devoured it! She got some really cute gifts. Her favorite is this alphabet pal she got. She didn't end up taking an afternoon nap so she went to sleep around 6. Slept until 8. Woke up long enough to get her jammies on and head back to bed. Poor baby. All in all it turned out ok. I'm glad we went ahead with the party considering the circumstances because I think I would have really regretting not doing anything for her very first birthday.




We didn't end up getting over to see Emma until late last night (around 9.30 p.m.). I did try to go with Susan and Kym after Lily's Party but we got there during shift change which I totally forgot about. Anyways, We went with Sean's friend Dan. Seana nd I went in first and then I went out so Dan could go see her. The nurse Christina, who we absolutely LOVE, came to the door and told me to go take off my shirt and come back with just my zip up jacket that she wanted me to try skin to skin kangaroo care. Oh my goodness! I couldn't believe it. I was changed and back within 2 minutes. Sean's friend left so I could go back in. I took a bit of preparation just to get ready for me to be able to hold her. we had to set up a heat lamp to help keep Emma warm, then we had to "pre-heat" her receiving blankets, rethread all of her various lines to the outside of her isolette, untangle them. Finally she was laid on my chest with receiving blankets over us and my jacket zipped up a bit over as well with the heat lamp directly on us (man that thing makes you sweat! She had a brady episode and desatted at first but then settled right down. Her stats were even better than before I was holding her. her oxygen went from the low 90's to 97-99 percent. Her respirations were lower and her heartrate was perfect. It felt so amazing to feel her chest rising and falling against mine! I got to hold her for about 30 minutes. Then we wrapped her up and let daddy hold her for about 5 minutes, but she was tired and starting to show it. So Christina put her back in her isolette before doing her cares. We stuck around so we could see what she weighed. She is now up to 2 pounds even. YAY. and still at 2.5 cc/ml full strength breastmilk per hour. Hopefully she'll continue to progress well like she has been these past few days. :)

3/2/06 and 3/3/06 Update

3/2/06

Sean and I celebrated our One year wedding anniversary yesterday (hence no blog update last night). We had a lovely evening. We went to visit Emma and then went to Claim Jumper. Our friend Susan was nice enough to babysit Lily and Caden for us last minute. Sean and I were given the best anniversary gift ever, we got to hold our baby girl for the VERY FIRST time!!!

Emma was still doing well on room air through the nasal canula yesterday with very few brady episodes. The nurse pulled up a rocking chair and another chair and came over and started taking her out. I almost freaked out. We were SO scared to hold her. She was swaddled tightly in her receiving (i think it weighs more than her). After getting all of her lines untangled the nurse handed her to me. I got a little teary eyed but managed to not cry. It was the best feeling in the whole world. It finally felt REAL to me that I had a new daughter. I gave Emma her very first kiss from mama and Sean got it all on video. After a few minutes I had to hand her over to Daddy who was itching to hold her. He was just as excited to hold her as I was and we got some video of him as well. We didn't get to hold her that long though since we didn't want to stress her out. She was up to 1 lb 15 oz and her feedings through the NG tube had been increased to 1.5 cc/ml. per hour and she was handling it well.

3/3/06

We took the kids over this evening. Emma lost 20 grams so she's just under 1 lb 15 oz. but she is also burning more calories from breathing on her own and not with the ventilator so that is to be expected. She is now up to 2 cc/ml. per hour. She had a few brady episodes and desats today so we decided not to hold her tonight and let her rest. Lily was sticking her head through (as much as she could) the porthole in the isolette "talking" to her sister. Caden of course held her head gently and let Emma wrap her hand around his finger. He always enjoys seeing his sister. He made her a bear (kind of like build a bear but it's made to be made at home), but he forgot to bring it. Emma was on her left side (which she doesn't like) so she was crying a bit and fidgeting but she had her eyes open for quite some time so that was nice to see. All in all not a whole lot of change and she is doing well.

Tomorrow is Lily's first birthday party (her birthday is sunday) so there probably won't be an update since we'll busy.

You can view the videos from last night at www.lilliana.aboutmybaby.com once again in the video section.

P.S. Thank you Di for the Birthday Bear for Lily and the "mother" beanie bear for me. :) That was very sweet of you to think of her!

3-1-06 One Giant Leap Forward!

Sean and I just got home from visiting Emma. We got a call around 6:00 p.m. saying that she had been extubated and was breathing on her own with just oxygen through a nasal canula! This was both exciting news and intimidating since we've been through this before and she didn't do so well. We were eager to go see her after dinner and after the kids were down for the night. We were almost like kids in a candy store, racing down the hall, rushing to wash our hands and get by her side.

Seeing her without the ventilator tonight was the greatest feeling. even though we've seen it once before this time felt different. It felt "right". I really have a good feeling about it this time. So far she has done wonderful breathing on her own. Her oxygen saturatuon was between 97-99% without any desatting. Her heartrate was between 140-160. She did have one very short episode of bradycardia but she recovered very quickly. They suctioned the drool from her mouth (she had been blowing bubbles) and then she was fine. Her respirations were in the "normal" range and she wasn't having very noticeable chest retractions. YAY. She was fairly active and kept stretching out her left foot. Sean said she was "kickin' back". She also yawned quite a few times and blew quite a few bubbles, all of which we got on video. You can see the video clip at http://lilliana.aboutmybaby.com/ (copy and paste into a new browser window). Look for it in the video section titled "Emma Grace"

She is still handling the full strength breastmilk well. She is now on one full cc/ml per hour. They took out her umbilical arterial catheter which is what they were using to draw blood from. They put in a new line on her left arm to do this from now. Hopefully if all goes well we might be able to start talking about kangaroo care soon. I'm trying not to get my hopes up too high since I know it's baby steps, but it's hard not to.

Sean and I will definitely both sleep well tonight knowing she is doing so well right now! Thank you Lord!

Many more thanks!

Since we have been receciving gifts from all over the world and from people we have met through various different ways, I figured the best way to thank everyone at this point would be for all thanks to go directly through the blog until we find the time to thank each of you individually and personally!

The Bradley Family, Thank you for the card and for the adorable preemie clothes. I just love the soft veloux outfit. I plan on taking the blanket to the NICU tonight for them to use with her at one of her next isolette changes. Your kind words and prayers are much appreciated.

Kym, Thank you for the funds you sent to help outfit our sweet Emma in "Maahhhvaalouss" clothes. That was too sweet of you! Can't wait to see you and Teresa at Lily's birthday party on Saturday.

Cynthia- Thank you for the adorable preemie diaper and soaker pants. They are oh so cute and TINY. Just a little shout out for your work. She makes BEAUTIFUL products. If you're into cloth diapering please check out www.rumpknits.com

Jen A.- Thank you for the cute Preemie clothes. I especially loved the willow tree card. It definitely made my day and will be going into a scrapbook for Emma to read when she's older to see just how special and loved she is!

Once again, Thanks to all of our friends and family and even strangers for your continued support!

3/1/06 Mid-Day Update

I went and saw Emma very briefly this morning. They were going to do another Blood gas soon and then going to discuss whether to try and extubate (take out the ventilator) her or not today. She is still on room air on the vent. Still doing well on full strength breastmilk. She is up 1/2 an ounce so she now weighs 1 lb. 14 1/2 ounces. No real change since last night. I'm beginning to enjoy hearing there is "no change" while she is doing well. Better than hearing that we've taken steps back. Sean and I will be going back tonight. Maybe she won't have the tube in anymore!