Saturday, August 31, 2013

Fear Factor

Friday, August 30

The girls didn't have the best day today. I think I'll blame it on their new location in the NICU. They are right beside the front desk in the front of the NICU so they hear everyone coming and going, as well as all the chatter of nurses and doctors from the desk. Compared to the dark, quiet corner they had before, this must be annoying.

Instead of giving Devyn the swallowing test, the doctor decided to just go ahead and try the rice cereal in her milk. The nurse tried giving her a bottle at all of her feedings today, but it didn't seem to help. The nurses and I think one of the problems is that she doesn't like the taste of the fortifier they add to her milk. So, tomorrow the doctor said we can try giving her regular milk without it to see if she likes it better.
Devyn....before and after eating!

I missed out on the Fear Factor moment this morning when the doctor, nurses, and therapists were  discussing Devyn's eating troubles. They were disagreeing on how bad the fortifier must taste. So, both the doctor and speech therapist opened a package of the white chalky paste-like substance and tried it out. Apparently they didn't think it was that bad. I'm still not convinced.

Even Miss Kinley had a down day. She wasn't breathing as well as she normally does during feedings. Her oxygen levels dropped a few times. This just proves that she really isn't ready to come home tomorrow. We wouldn't her oxygen dropping at home!
"Mom, I don't like this bow."   -Kinley
 
"This bow is much better."   -Kinley
Devyn with Grandma Carol.
 
Hmm...maybe this bow is just too big for them right now:-)


Friday, August 30, 2013

Change of Address

Thursday, August 29

Well, today didn't turn out exactly as we'd hoped. Kinley will not be coming home as planned. This morning during her feeding, the nurse set her down to get her reflux medication and she threw up. Some went up her nose and the nurse ended up needing to use temporary oxygen support before she got her all cleaned up. Her doctor immediately ordered a chest x-ray to check her lungs, but they looked clear. She will have a follow-up x-ray again in the morning, just to be safe. Anytime a NICU baby desaturates (oxygen levels drop) and requires staff support to recover, the doctors require five days of additional observation. So, Kinley will be staying to keep Devyn company for a few more days.

Kinley is not quite ready to go home yet.
 
On a positive note, the girls' eye exams went very well. And they both continue to gain weight. Kinley is now 6 lbs. 5 oz. and Devyn is still hovering at 7 lbs.

 See how grumpy Devyn looks when she's not swaddled?

The girls were relocated to another section of the NICU today. They still didn't make it into the brand new wing. They are now right near the nurse's desk and front door....right in the middle of all the action. Now that she has so much to watch, Kinley will never sleep!

 Where's the baby?!?! Devyn was moved while I was feeding Kinley.

 Patient Kinley is on the move!

 Kinley's entourage.

The new Marsh wing of the NICU. Devyn on the left, Kinley on the right.


Devyn is still practicing her bottle feeding. The doctor has ordered a swallowing assessment like Kinley had, just to make sure she has no other problems preventing her from eating successfully.

Although we are very disappointed that Kinley isn't coming home yet, we know in the long run it's for the best. We want her to be completely healthy before she does come home. And it also gives us more time to finish settling into the new house. Maybe she was planning this to make sure she comes home to a clean and organized home.

Thursday, August 29, 2013

Fingers Crossed

Wednesday, August 28

Devyn and Kinley are doing great! Kinley is still on track to come home soon...although I don't think we'll know for sure until after her eye exam tomorrow. My guess is that we'll spend the night with her on Friday and bring her home Saturday. Our fingers are crossed!

 Kinley under her cabana.
 
 Kinley looks ready to come home to me!
 
Burrito de Kinley!

Dad and I went in late tonight for their 11 and 11:30 pm feedings. I nursed Devyn while Dad fed Kinley her bottle. Both girls did fantastic! It was probably the smoothest, and quickest,  feeding time we've ever had.
Daddy changing Devyn.

Kinley is trying to catch up in the weight department. She now weighs 6 lb. 4 oz. Devyn gained a bit as well, but still weighs 7 pounds.

 Devyn relaxing....
 
Devyn screaming...

Wednesday, August 28, 2013

End in Sight!

Tuesday, August 27th

Life in the Marsh home is finally starting to come back together again. We haven't had hot water since we moved in (thank goodness the girls aren't home yet)! The cable was finally hooked up today (Dad is happy now). The house is slowly starting to look like a home, rather than a tornado zone. And just in time too....because Kinley might be coming home this week!!!! Her doctor put her on reflux medication yesterday, and it seems to be helping. If she can make it 48 hours with no problems we can start planning her discharge!


Kinley is almost ready to come home!

The doctor said that Thursday would be the earliest she might be sent home. But, the girls have eye exams on Thursday morning, which is a pretty rough experience for them. So, it will most likely be Friday that we begin the process (assuming she has no problems before that). We will need to bring in her carseat soon so that they can monitor her sitting in her seat for 90 minutes. This is standard for all babies in the NICU to make sure they can handle the new environment and position. Then, we will be rooming in with her for the night before her discharge. Now that the new wing of the NICU is open, there is a beautiful room-in suite for parents. For most new parents of preemies, the parents are required to spend the night at the hospital with the baby under the supervision of the nursing staff. If everything goes as planned, we would do this Friday night and then (hopefully) bring her home Saturday! Of course....Kinley may have plans of her own, but for now we have an end in sight (for Kinley at least).

Devyn is doing great as well! Her breathing is very stable, with the exception of feeding times. She has such a strong suck that we cannot find a bottle slow enough for her to eat from. Devyn and I met with one of her therapists this morning to try out a new bottle. She sucks so hard that she gets too much milk and struggles to swallow it all before breathing. The bottle did not work out as well as we had hoped. However, Devyn is great at breastfeeding! She still has to be paced so that she pauses to breathe every now and then, but overall she does fantastic! The major consequence of these problems is that if we can't find a bottle that she can succeed with, then breastfeeding will be the only way to get her home. She has to be able to eat on her own (with no feeding tube) and gaining weight for 48 hours before they will send her home. That could prove quite difficult if Kinley is home. I would need to be at the hospital every 3 hours to nurse Devyn, and Kinley would not be allowed back in the NICU once she is discharged.. I'm going try my best not to worry about that for now....

Devyn is pretty in purple today!

Uncle Scott with Devyn 




Julie with Kinley
 
 It's not polite to stick your tongue out Devyn!
 
Oh...I see where you learned it from.

Tuesday, August 27, 2013

10 Weeks Old!

Monday, August 26

Today was the first day of school in the Vegas area. The NICU doctors had predicted Kinley would be home by now, so I scheduled my Family Medical Leave time to begin today. It feels like I'm playing hooky! I told the girls that SOMEBODY needs to come home so that I can say I'm using my time-off wisely.
 Kinley Grace

Devyn Marie
 
Devyn has been doing great off of her oxygen! Her feedings are the only challenge keeping her in the NICU. She is still having a hard time controlling her sucking, swallowing, and breathing. Every now and then she shocks us by finishing an entire bottle herself, but most of the time her milk is fed through the feeding tube. Devyn made it to 7 pounds tonight! I was looking at her today and decided I don't think these two gals would have fit inside my belly at this point in the pregnancy. They are still over a week away from their due date!
 The nightly weigh-in. Kinley (above) Devyn (below)

Kinley and I met with the speech therapist today to assess her progress on the feedings. The rice cereal seems to help a little, but every now and then she still chokes. The doctor decided to try a reflux  medication to see if that works. Tracy, the therapist, observed Devyn nursing today and was blown away by how good she is! She went hunting in her office, and came back with a bottle that we are going to try tomorrow. The bottle makes it much harder to get the milk out than a normal bottle, similar to nursing. We'll see how it goes tomorrow.

 Why Devyn...what big eyes you have!!!
 
Snuggling with Devyn


Almost there....

Sunday, August 25

Devyn is still off of her oxygen! I am so proud of her! Perhaps she has decided it would be nice to eventually come home. She has really improved over the past week or so. She is awake for longer periods of time, has been eating more from a bottle, and is more alert. She weighed in at 6 lbs. 14 oz. today!
 Daddy with Devyn
 
Mommy with Kinley
 
Kinley made it to 6 pounds at tonight's weigh in! She has been eating the milk mixed with rice cereal to improve the reflux condition that has been giving her problems. She eats well, but at times she refluxes and then chokes. This problem is the only thing keeping her at the hospital. Once it is managed she can come home!

 Feeding Time. Devyn (above) and Kinley (below).


 Poor Kinley...we've been so busy moving, I forgot to bring in clean clothes for her. Now she has to wear this ugly hospital shirt that doesn't even fit her. She doesn't seem to mind.

Sunday, August 25, 2013

Moving Day

Friday, August 23

The Marsh twins got a new home today...even though they never set foot in their "old" house. Now we just have to get settled. Although we are VERY anxious to bring the girls home....it's a good thing they are still in the hospital. I'm not sure they would appreciate coming home to a house full of boxes.

Kinley had a special test done today to assess her swallowing, since she's been having some trouble during her feedings lately. The doctors noticed that when she swallows her milk, a small amount goes   down the wrong tube to her lungs. However, they tested her with a thicker liquid and she did fine. So, from now on the nurses will be adding a small amount of rice cereal to her milk to thicken it, which makes it easier for her to swallow. She now eats from a regular bottle in preparation for coming home.
Kinley sleeping soundly.
 
The doctor spoke to us again about Kinley's MRI results tonight. Her PVL is located on the right side of her brain. This is the area where the blood flow and oxygen were cut off due to her bleed. The doctor said that if she is left-side dominant (i.e. right-handed), then hopefully we will not see any longterm effects.

Devyn finally had some big news of her own today! The doctors are testing her out with NO oxygen or breathing support to see how she can do on her own. Often times it's only for a few hours at first, but we'll see how she does. The doctors have warned us of the possibility of her coming home with oxygen, but we're hoping she won't require it.
Who's under all that pink?!?!
 
 It's Devyn!

That oxygen tube is coming off!

Friday, August 23, 2013

Sticking Together

Thursday, August 22

I wasn't going to blog tonight because it's 1:00 am and I have to be up for work in 4 hours. But then I thought....I can't disappoint the girls' fans! Besides, new moms don't sleep anyway right?!?!

Sadly, I wasn't able to spend much time with the girls this evening after work. Movers are coming tomorrow morning to take everything to the new house so we had to finish packing tonight. I did go to the hospital to drop off milk and get in a quick snuggle with Devyn and Kinley before heading back home to pack. I was there in time for Kinley's feeding, but unfortunately it didn't go well. She had two serious breathing episodes and the nurse had to use the oxygen mask to bring her levels back up. The nurses have come to the conclusion that she just doesn't want to leave Devyn behind in the hospital, so she's playing tricks on us to keep them together:-)

 My (current) favorite picture of Kinley! She's already a better whistler than her mom!
 
 
The only change for the girls today was that Devyn's feeds were increased to 53 cc's. The little stinker is still perfectly happy being fed through her tube. She needs to get a move on and eat from her bottle!  She's being teased by the little boy across from her in the NICU.....he's much younger than her and can down his entire bottle in just a few minutes.
 
I did take a couple more pics...but I have NO idea where the camera is now! Check back later for more!

Wednesday, August 21, 2013

Back to School

Wednesday, August 21

Today was the official reporting day for teachers in Vegas. This definitely hasn't been the summer I was planning on. I thought I would be able to take my time cleaning up my classroom and lesson planning for my long term substitute. I thought we would be able to take our time setting up and decorating the nursery. I thought I would have plenty of time to finish reading my stack of baby books. I thought Justin and I would be able to visit family in Minnesota and watch my mom get married in June.  I NEVER thought we would be spending 65 days (and counting) in a hospital NICU. Perhaps this is part of our training for parenthood.....nothing ever goes as planned.

 Mommy and the girls. Kinley (above) and Devyn (below)

 
I know I keep saying this, but I can't believe how big they're getting! Devyn now weighs 6 lbs. 11 oz. and Kinley weighs 5 lbs. 9 oz. Both girls have now more than doubled their birth weight. I can't wait to get them next to average-size babies so I can appreciate how small they still are, and yet how much they've grown. Kinley was so hungry today she ate 85 cc's with Dad....about a bottle and a half! Wow!

Kinley had a bad episode this morning where her heartbeat and oxygen levels dropped while she was eating, which hasn't happened to her in weeks. Although they haven't given us a prediction yet on when she'll be going home, this will probably delay it. We are eager to get them both home, but we also want to make sure they are breathing fine on their own. 

 Kinley sleeping sideways.

 Grandma and Kinley.
 
Devyn Marie

Tuesday, August 20, 2013

Growing Like a Weed!

Tuesday, August 20

The Marsh girls had a very uneventful day in the NICU today. They seem to be responding much better to the lower-calorie milk. Kinley sucked her bottle down like a champ today! And Devyn is doing better breathing while she eats, but she still does not have enough stamina to last an entire feeding.

I cannot believe how big they are getting! I was looking at their most recent measurements today and realized that Kinley is now longer than Devyn! Kinley was 13.25 inches when she was born, compared with the 15 inch Devyn. Now Kinley is 18.7 inches long, while her sister is only 17.7 inches long.

 "This thing is broken....I'm not getting any milk!"    Devyn
 

 
Kinley snuggling with Daddy.
 
Devyn's crib
 
 Kinley Grace