First laugh

On Jan. 16, we got to hear Maddy chuckle for the first time. It was soooo cute. I was cleaning her hands because they were filled with lint and she gave me a deep chuckle. She is such a smiley girl, especially during diaper changes.

3 months old

Madeline is 3 months old!! She is such a happy, content baby. She doesn't cry much, mostly when she is tired. She loves to be swaddled to sleep and nap, and loves her butt patted until she falls asleep. She really likes sleeping in her swing and sitting in her Bumbo seat watching Hailey. She loves to stare at the dogs, or look at the patches on daddy's uniform. She is drinking formula and thickened breast milk from the bottle pretty well now...around 10-30mls depending on if she is awake or asleep. She is a total binky girl, and loves to chew on it.

She really doesn't like her feet played with or tickled. She mostly likely has some PTSD associated with her feet due to having heel pokes everyday in the hospital. But she likes her hands tickled. She likes to coo and talk. She sounds like a cat with her low coos. It's adorable.

Swallow study

A couple days after our check up at Children's, Jeff and I both thought that Maddy was showing decreased interest in the bottle. Even more than she had. I emailed our OT and our dietitian with my concerns and they scheduled us for a Swallow Study that week. On January 11, we took Madeline back for the study. They put Maddy in a little seat with an x-ray machine all around her, and they gave me a bottle full of barium for her to drink. Then they took live x-rays of her drinking. Or in our case, Maddy holding the liquid in her mouth and spitting most of it out while involuntarily swallowing a tiny bit. They then tried it with breast milk and she did the same thing. Thankfully, we learned that nothing is physically wrong with her. She is capable of swallowing, however, she isn't doing it. Possibly due to her throat being sore from constantly spitting up and throwing up.

They suggested thickening breast milk with a thickening agent to see if she prefers the thicker liquid. Our OT also brought up that Maddy may need an G tube if she doesn't start drinking more from the bottle. We really don't want this at all. It's means surgery, another stay in the hospital and I feel like it's a step backwards.

Only time will tell. In the mean time, we are loving our girls!

1st out patient appt.

On January 4th, we went back to Children's for Madeline's first follow up appt. I was nervous about being back there. I kept thinking that they would want to re admit Madeline for some reason and we would be stuck there again. Of course that didn't happen, but it was just stressful being there again. We met with Maddy's surgeon, Dr. Avansino and her dietician, Jenny Stevens. It was so great to see them again. They took wonderful care of Maddy and us during our stay so it was nice to see familiar faces. They thought she looked great and were impressed with her weight gain. They were not happy with how her feeding were going though. Maddy really does not like drinking from the bottle, and constantly takes a large mouthful of breast milk, and then spits it out. However, if she is asleep, she drinks like a champ. They were also concerned about how much she as spitting up and vomiting after feeds (as many as 4-5 times a day). This is especially concerning because she throws up after being given her Iron, which she needs badly because she is so deficient. Dr. Avansino briefly mentioned the possibly of Maddy needing a G tube (a feeding tube surgically implanted in her stomach). But we really didn't think it would come to that.

After our surgical appt, we went to see Maddy's Occupational Therapist who watched Maddy drink from the bottle and she gave us some tips to try to encourage her to drink more. They decided to eliminate her 3am feed to increase her hunger. So now we have a long stretch from midnight to 6am that she doesn't need to be feed. Too bad I still have to get up and pump :-(

At our appt in Seattle

Christmas morning

Madeline was awake bright and early, but Hailey was still asleep at 915am. So we woke her up. She was so excited, I've never seen her get out of bed that fast! Santa brought Hailey a huge doll house with a bunch of furniture to fill up the rooms. She loved it. Santa also brought her a big bear dressed up as a Trooper, just like daddy. The bear is actually wearing one of Jeff's old uniforms that was made special just for the bear. He is really cute. It was so much fun seeing Hailey open up her presents. She loved everything and kept asking how Santa knew that she wanted these things?! The one thing she kept asking Santa for was Hello Kitty earrings (somewhere during our hospital stay, Hailey developed an obsession for Hello Kitty). So of course Santa came through with very sparkly Hello Kitty earrings. She was over the moon about them.

We had a close call on Christmas morning...Hailey was standing in front of the tree when it started to fall over. Jeff pulled her out of the way and the tree ended up landing on Hailey's new dollhouse. Only a couple of ornaments got broken. It was scary because a few minutes earlier, we had Madeline set up in front of the tree for pictures.

After a yummy breakfast, we headed down to Mt. Vernon to have Christmas with my family. We had an great early dinner of turkey with all the fixings and then we opened mountains of gifts. AS always, everyone was much too generous, and we all got spoiled.

We have more pictures somewhere, but we can't seem to find the memory card...

Christmas Eve

On Christmas Eve, we went to Jeff's sister's house to have dinner and open presents. The girls got so spoiled and it was so great to be around family. Hailey is at such a fun age and truly loved opening presents and seeing Ashley and Lincoln open their presents. No one wanted the night to end, but soon it was time to go home and prepare for Santa's arrival.

When we got home, Hailey and Madeline got to open 1 present. They each got a pair of matching Christmas pajamas to wear to bed. Hailey thought it was so cool to have the same pajamas as Madeline.

We set out cookies for Santa, and carrots for the reindeer and big glass of milk for Santa. Hailey wanted to stay up and wait for Santa, but we finally convinced her to get in bed so he could come.

After the girls were snuggled in their beds, Santa's elves got busy on setting up the toys and presents.

Madeline

Madeline is on a 3 hour feeding schedule. Every 3 hours, we try to give her a bottle of breastmilk. What ever she doesn't drink, goes into her pump (a total of 106ml). She is given 106ml's over 45 minutes and then her tummy gets an hour and half break before her next feeding. This is to give her a chance to get hungry. We aren't even sure if she ever feels hungry because her whole life she has been on IV nutrition or being constantly fed through her feeding tube. She doesn't show much interest in drinking from a bottle and sometimes will only drink a ml or 2. She just holds it in her mouth and then spits it out. It's very frustrating. Our goal is to get to 30 mins feeds of 106ml's, and have her drink that amount from a bottle, but at this point, it seems like a long way off.

Her schedule makes for long nights because Jeff and I are up every 3 hours to feed her, set up her pump and then get her settled back in to bed. On top of that, I am still pumping every 3 hours, so I have to do that as well. Jeff will soon be going back to nights, which will make things even harder.

Madeline also has severe acid reflux and is on her fourth medication to help control it. But it isn't working. She spits up and throws up about 4 times a day. She has gotten to the point where she doesn't even cry anymore, it just comes up. Which is just sad because it means she is just used to the pain now. Having the NG tube in doesn't help either because it makes it so her throat can't close all the way, making it easier for the spit up to come up. She is also taking iron twice a day, which is very hard on her stomach and also causes her to throw up. For some reason, when babies spend a lot of time in the hospital their iron levels drop, so she is anemic. We are hoping she can get off the iron very soon.

Madeline sleeps on a foam wedge in our bed (thank God we bought a king sized bed a few months ago!). It helps with her reflux, and we have her close by in case she spits up in the middle of the night. It will be a long time before she will move in to her own room.

Madeline does pretty well not grabbing her NG tube, but we have had to put it back in 4 times. It is not fun at all, and I can't even imagine how uncomfortable it is for her. We can't wait for the day when it finally come out.

Hailey loves having a little sister and loves to help us get things for her or watch us change her diaper. She has done so well adjusting to all of the changes, we just can't believe it. I see Hailey and Madeline being the best of friends.

Look how far she has come...

Madeline's 2 month check up

3 days after we got home from the hospital, Madeline had her 2 month check up with our local pediatrician. She weighed 10lbs 8oz (45%), she is 22 inches tall (25%) and her head is 37.5cm around (24%). Dr. Gass thought she looked great considering all she has been through. She also got 3 shots, which she hated and screamed through. Poor girl.

Misc. holiday pictures

Hailey with the Bellevue Santa

At snowflake lane

In the Teddy Bear suite

With the Nordstrom Santa

At the Lights of Chrismtas

Bruce the Spruce

We made a Barbie gingerbread house