Tuesday, July 20, 2010

A first for everything...

Hello!

First time on the playmat

First walk around the neighborhood


First trip to restaurant



First bath in my whale tub

It is so fun to experience all of these firsts with Avery. We are having fun settling into a routine at home and introducing Avery to all of these things. She had her first pediatrician appointment yesterday and had a great report. She now weighs 7lbs 12oz, is 20 3/4 inches long. All of her fussiness and noises are all normal according to the pediatrician, which is great because I was worried that it was abnormal.
Avery loves her baths and loves riding in the car. We have been trying to keep her awake during the day so that she will sleep a bit more at night. Last night we got two 3 1/2 hour stents of sleep which is awesome! We actually felt like we slept! Hopefully this will continue....


Saturday, July 17, 2010

Surprise!- We're Home!

In the carseat for the first time!

Leaving the hospital, look at all my stuff!

Getting my PICC line out!


Me with my nurse Erin

Me with my primary nurse Sara


Avery is back up to rockstar status! The past couple of days have been very eventful. On Wednesday evening the doctors decided that Avery didn't need to have the sleep study again, she hadn't shown any signs of decreased oxygen and was not showing any apnea, so they cancelled the study! She was doing so well with feeding, they let me exclusively breastfeed her on Thursday and if she gained weight, they would let her go home on Friday! So we ate and ate on Thursday to make sure that she gained weight. Well, when we weighed her she was actually .45 grams less, but she had just had a diaper that weighed .83 grams, so they gave her the go ahead to come on home! We left around 3 pm on Friday and it was so great! It was sad to leave the hospital, we have gotten so close with everyone there and they gave us a great send off.
Avery did very well with the car seat and ride home, she slept the whole way. I can't even begin to express how great it is to walk around the room holding her without any lines or tubes! We hung out on the couch all afternoon together and are just so excited to be home! Last night was actually better than in the hospital. She slept really well and only fussed a few times but it was only when it was time to eat. After she ate, she went right back to sleep. We are definitely feeling sleep deprived, waking up every 2-3 hours, I know all you parents know how that is. But, we are so happy to have her home and be parents to Avery. I still can't belive that she is here right next to me at home while I type this! Thanks to everyone for all the prayers and good thoughts, Avery says thanks too!

Thursday, July 15, 2010

Egleston Day 25/26 - Full Feeds!


Enjoying some tunes during my hearing screen!

What your freezer looks like after 1 month of pumping!
Avery is now up to full feeds! She is taking 60 mls of milk now and loving it! She is alot less fussy now that her belly is full. We are also doing well with the breast feeding. We give her the bottle first to make sure that she gets at least 60mls then she latches on. I think the plan is for me to exclusively breastfeed beginning either today or tommorow, I will know the plan when I get to the hospital.
Avery passed her hearing screen! So that is one more thing to check off the list before home. She is also got taken off of her hyperal and lipids which was her nutrition before eating. She still has the PICC line with saline to keep it open, but she may get to lose that in a few days! Now that Avery is up to full feeds, the reflux is beginning to be a problem, so they started her on prevacid. It seems to help so far and hopefully this is the only intervention she will need for that. The only sad thing is that Avery has to have another sleep study done, not because they think anything is wrong, they just have to prove that the apnea problem is gone before she goes home. I am dreading this test, she hated it the last time and I hate that she has to go through it again. Maybe now it won't seem so bad now that she is eating, we'll see....


Monday, July 12, 2010

Egleston Day 23/24 - Unleashing the Beast!

Me in my Georgia Peach Hat

Snuggling with Daddy

Smiling at Mommy


Trying to work on holding my head up!


Avery continues to do really well with her feeding. She is now at 20 ml of milk a feeding and they are increasing her feeding to 25 ml overnight. She is no longer getting a suppository and is having stools on her own, which is outstanding.

The problem with this new found milk stuff is that Avery likes it and wants alot more of it! It is consistently taking us 30min-1hours to calm her down after her feeding because she wants more. A few days ago, we were able to trick her with the pacifier, but last night we saw a new side of our sweet baby girl! We are excited that she is eating so well and cannot wait for her to get to full feeds so she can calm down a bit.

The other really exciting thing is that we got to try breastfeeding today. I thought that it would be a few days more, but Avery is doing so good, they thought just give it a try. The lactation consultant was there and told me not to expect her to latch right away and that it might take several trials. Well, Avery latched right on and started going to town! The lactation consultant had to leave to go ask the doctor if it was ok if she kept eating, because we have no way of monitoring how much she was getting. So we fed for about 7 minutes or so and then Avery was really mad! I am so proud of her. My biggest fear was that she wasn't going to be able to breast feed and all of my pumping would have been for nothing, but my little trooper did awesome. We are going to try again for a few feeds tomorrow.

Saturday, July 10, 2010

Egleston Day 22 - Milk Time!

Eating with Daddy!

First taste of milk ever!

What is this magical stuff, Mom?


Dad, stop messing with me!


Avery is back on track! She got to eat for the first time yesterday for the noon feeding. The doctors let her have 5 ml of milk for each feeding yesterday and she absolutely loved it! She gets this really cute glazed over look right after downing the bottle, it is so cute and exciting.
She has done so well with the 5 mls yesterday, they increased it to 10 mls for today. She is still holding the milk down and loving getting to eat the increased volume.
The other big step is that Avery was able to poop on her own. All the other times she has had a suppository to help her out, but today around noon she was able to do the job all on her own. This is great news, it means that everything is starting to process through just like it should without medicine, naturally! YEAH!
So the plan is to increase by 5 mls everyday until she has reached full feeds with the bottle. Then once she is gaining weight with bottle feeding, we get to try breast feeding. After a few days of productive breast feeding we may get to start looking at going home! We still think it will be about 3-4 more weeks, but we have been there 3 weeks already, so we are almost halfway there. Avery sends her love and thanks for all the prayers, she can't wait to meet everyone!

Friday, July 9, 2010

Egleston Day 20/21 - 3 weeks old!

Me without my tube! Yeah, I'm free!

Sleeping with Grandpa

We've had a great couple of days! Avery is doing really well, she has had a couple of really good poops, which means that her intestines are finally really waking up. She had to have another xray done to look at her lower intestines as things were still kinda green, but that came back looking great. Her fluid cleared, but there is still a large amount. However, they decided to pull her tube and see how she does. If she throws up then she gets the tube back, but (fingers crossed) as of 4 am this morning she hasn't thrown up. She may even get to eat today!

Avery also has become more and more alert and awake as the days go by. She is so fun to play with and is finally focusing on objects infront of her. She is also doing really well with her exercises... she is able to be on her belly and lift her head and turn it to the other side. Hard to believe that she is 3 weeks old already! Here's hoping to her getting some milk today!!!!


Wednesday, July 7, 2010

Egleston Day 18/19

First elevator ride with Mommy and Daddy

My scary radiology test, it's such a big machine!

Looking at Daddy!


Wide awake! (at almost 1 in the morning!)
We have had an eventful couple of days. We first lost our private room at the hospital because another baby came in that needed an isolation room, so we were moved to a semi-private room. We spent the night with 2 crying babies! Then fortunately, they moved us to a private room yesterday. We are so thankful that we were able to have a private room, it makes staying with Avery so much easier.
Avery is still doing well, but the surgeon and neonatologist were getting concerned because her output is still very green and there is still alot of it. They thought that there might be a blockage somewhere that may need more intervention. As you can imagine this was very scary for us because we want Avery to be progressing and not have any setbacks, let alone another surgery or intervention. So, we had to have a Upper GI study done. They put a very dense water soluble liquid in her stomach and traced it on xray to watch it go from the stomach through the small intestines. It took several hours, they came every 30 minutes to take an xray. Well, the results came back positive, she didn't have any blockage in the small intestines and the material went through without any problems. But, we still don't know why it is taking longer than expected for the output to clear up. Avery just wants to take her time, which is fine with us. She seems happy and only gets upset when she is spitting up green stuff.
Avery slept well last night and we still haven't had any problems with the oxygen desaturation, so hopefully we are in the clear with that. So, we will pray that the output decreases and gets clearer and hopefully this little miss can get some food!




Monday, July 5, 2010

Egleston Day 16/17 - Happy 4th of July

Me in my 4th of July Crib

Sleeping in my 4th of July Crown

I know more pink! You can see my dimple again!


I'm looking at my new mobile.

Happy 4th of July everyone! We have had a good one. Avery got switched to gravity suction on Saturday and also got her oxygen removed on Saturday. She is doing really well without the oxygen and hasn't dropped her oxygen levels at all. They put her tube to gravity suction which makes her have to work alittle harder to express the fluid from her belly that the intestines are rejecting. So she is abit more gurgly and the fluid is still not all that clear. Once the fluid clears she can have some food, so hopefully in the next few days or so. I would much rather her take her time, then start to force feedings and have to take some steps backward.
We got her a mobile for the crib and she loves looking up at the little animals. There are several times a day where she is very alert and will just take in anything. She loves the mobile, being read to and sung to.
We decorated her room for the 4th, since we couldn't take her to see the fireworks, but I did like Carrie's post about running through the halls with sparklers, we did consider that, but didn't want to get banned from the hospital!


Saturday, July 3, 2010

Egleston Day 15/16

Me with my new favorite stuffed animal from Aunt Meredith and Uncle Rich

Here is my new oxygen tube.

In the swing for the first time, I love it!

Me during the sleep study, it looks scary, but I handled it like a champ!


We've had a good couple of days! Avery now weighs 6lbs 11oz, almost a pound more from when she was born. We had to go through some rough testing to figure out what was causing her oxygen levels to go down, the worst was a sleep study. They collected about 7 hours of data on her while she was sleeping, she did really good until about the last hour when she was just tired of having all of the leads and tape on her head and face. They determined that she has a form of reflux apnea.. because her intestines aren't working yet, it causes some pressure in her belly that causes her to take shallow breaths when she is sleeping deeply. They think that it will resolve on its own once she starts moving things along and her belly isn't as full. Worst case scenario, she will go home on oxygen for a little while, but we will see how she progresses over the next few weeks. Her output from her oral tube has gotten much clearer and less, which is a great sign. The plan is for her to go back to gravity suction today, so hopefully she can stay on that for a few days and if that decreases and looks better they can take the tube out and start getting some food!
We had the Physical Therapist come and visit the other day and she showed me some exercises to work on with Avery. She actually likes all the new positions and the Therapist said that she is right on track developmentally, even doing some motor control movements ahead of time! Her head preference is better and she is able to pick her head up and move directions when she is on her belly, which is a good thing for strengthening her belly muscles. Babies with gastroschisis can have some weak belly muscles, so it is important to make sure that Avery has good abs! She's gotta show off that pretty belly that Dr. Parker made for her!
We also put Avery in the swing for the first time yesterday and she loved it! We kept her in for a long time and she was super content and loved looking up to watch the little mobile above her.
We are looking forward to Avery's first 4th of July! She is sad to miss the fireworks outside but we will have some pretend ones in her room!

Thursday, July 1, 2010

Egleston Day 12/13/14 - 2 Weeks Old!

Snuggling with Daddy!

GOOOOO Dawgs! Sick 'em!


Yes, I know I am in pink.




I pulled out my tube, so my nurse was nice enough to let me have a bath before putting it back in, now you can see my chin!


Well, it is hard to belive that Avery is 2 weeks old today! We have had a good few days, but with some ups and downs. Avery was placed to gravity suction on her stomach tube, which is a step in the right direction to feeding, but it was too much for her little belly so yesterday they had to put it back to wall suction for a few days. The other thing that she has been doing lately is her oxygen levels go down when she is in a deep sleep, so last night they had to put her on some oxygen to keep her levels from going down. They still don't know what is causing it, they thought it was just the stress from the tube not having suction, but she is still doing it on wall suction. Hopefully, I can get some more answers when I talk to the doctor today. Avery is also going to get a visit from the Physical Therapist today. She is favoring sleeping on her left side because of her PICC line being in the right side of her head, so we are going to learn some exercises to do to help keep her head even!
She is still trucking along and a very sweet baby. She only fusses when stuff is coming up from the tube. She loves her pacifier and loves being held. I am so glad that she is a snuggler, it is so nice to hold her and rock her, it helps me to forget sometimes that she is in the hospital going through all of this!
So, please keep those prayers coming, we want her to get off the oxygen and maybe back to gravity suction so this little baby can get some food!