Hailey

Hailey has been having hearing and ear problems since November. We first noticed it when we were still at Children's and brought her up to be checked out by an Ear, Nose and Throat specialist. The Dr. said she had fluid in her ears and recommended we put tubes in. We were hesitant because A.) We had ALOT going on with Madeline, and B.) Hailey doesn't have a history of frequent ear infections, so we didn't feel it was necessary. Fast forward 3 months. After many doctors appointments, and one doctor saying one thing and her pediatrician saying another, we have decided to go forth with getting tubes for her. She has 30% hearing loss, and we have to repeat everything we say to hear at least 3 times before she hears it. It is awful, and beyond frustrating. Honestly, it's more than I can handle right now. So she goes in on March 5 for tubes. I can't wait until she can hear again. No more repeating things constantly or yelling all the time!

Other than that, Hailey is doing so great. She moved up to a new classroom at school, so she is with older kids now. She loves it and we love her new teachers. Hailey loves to tell us stories about anything, and she loves to hear stories about Jeff and I getting married, or when she was born. She has a great personality and loves everyone she meets. her memory is crazy good and we can't get anything past her.

She is 100% potty trained, and I am even considering letting her wear underwear to bed instead of a pull up because she has woken up dry for the past 3 months. She is still sleeping well, and liked us to sing her 2 songs after she gets in bed, and then she likes us to say goodnight to her on the video monitor. She sleeps with about 40 stuffed animals, who are all named Gloria.

Hailey started doing a dance class a couple of weeks ago, and she is having a blast. She is easily distracted, and likes to run up to the door to make sure we are watching her. But she is enjoying learning new things, and wearing cute ballerina skirts. She also got her first pair of ballet slippers, which she thinks are the coolest!

Hailey is an amazing big sister, who truly loves Madeline. She is not jealous of her, and seems to understand that Madeline needs special care that some times takes up a lot of our time. She is so helpful with picking out her outfits or grabbing burb rags to blankets. It is also very apparent that Madeline loves her big sister. Madeline just stares at Hailey and is always watching her if she is close by. Hailey can always get Maddy to smile :-)

It's hard to believe that Hailey will be 4 this year. She has already picked out the theme for her birthday (Hello Kitty), and says she wants to have the party at Whatcom Falls again, even though I suggested Jungle Playland.

Follow up 2/1/12

We went back to Children's on Feb. 1 for another follow up visit. There wasn't much to be said besides that Madeline needs to start drinking more from the bottle. Her doctors, nutritionist and occupational therapist are all stumped as to why she isn't drinking more. When she is asleep, she will drink 40-50 mls from the bottle pretty consistently and quickly. But during the day, when she is awake, she is just not interested in drinking. She doesn't seem overly worn out after drinking from the bottle, so it's  not a matter of her not having the strength. It is so frustrating that we don't have more answers or a set time when we can get the tube out. She has gotten so good at rubbing the tape off the tube with her covered hand, or just rubbing her face in to us or the wedge she sleeps on, which makes it easy for the tube to come out of her nose. I absolutely hate to put it back in, and her poor face is so read and irritated from the adhesive.UGH! We can't get it out soon enough.

Snow!

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...