Happiness

Darling Claire is home!

She was discharged on Tuesday in the late afternoon/early evening.

The first night, as I am sure is usual for every baby, was a bit rough, but she hit her stride and is sleeping fairly well through the night.

(From this:)

(To this:)

We parents were quite exhausted, but each day is getting better.

Claire still has several appointments and will have at least one appointment each week now that she is home. There is also a large possibility that she will need another stomach surgery in about 3 weeks. We go for the consult at the beginning of August.

As for at home, she is still restricted from doing activities and does dialysis at night. We welcome visitors, but please do not come if you are in any way sick, sniffling, or coughing.

Thanks again for all the prayers. Please keep her in your thoughts as we transverse the path to transplant!

4 months

(Originally posted on 9/15/2014). 

Claire turned 4 months on Saturday!

Nothing much has changed from last week. She has the sniffles and is thus not eating well, but she smiles on. 

Here are the pictures from this week:

(Trying to sit up on her own)

Beautiful

Claire has had a good week despite supply issues with Baxter who are in charge of dialysis supplies.

She's a happy kid who is smart and sassy. Developmentally, she is on cue, yet Mommy and Daddy are working with her on future skills: like sitting which she loves to do, but can't do on her own as well as crawling which she comes close to doing and then she gets distracted trying to suck her thumb. 

She is also incredibly picky about who and when she smiles. For example, she only smiles for mommy in the morning when playing between feeds. 

Here are the pictures from this week:

Playtime with Mommy. 

(Mommy loves this picture. And yes, Claire did this on purpose. She even pushed against Daddy who tried to sit her up straight. Claire can and has sat straight in the Bumbo but Mommy and Daddy are so busy working on introducing new toys that they forget to capture this cutie doing her thing.)

Baby girl sleeping when Mommy got home. 

Livin' life

Claire's had another good week. Mom and Dad are starting to get into the groove. 

She's still growing, at almost 11 pounds. 

And she is having so much fun playing with daddy during the day; mom's a little jealous...

Here are a few more pictures from the week:

(Or)

Hard, but good

It is going to be a tough, yet exciting year as we try to manage a life with/being a teacher and Claire.

Claire cannot go to daycare for a couple of reasons, so Daddy is staying home to take care of her, which means a long day for him, while mommy is busy at work. 

This week she visited the doctor again who said she was looking great. She also reached 10 lbs this week which is a huge checkpoint!

Here are a few snapshots from this week:

Enjoy your week!

More coming next Sunday!

Nothing new

There is nothing new with Claire this past week. So here are some pictures. (And, yes. She is officially 3 months.)

My computer malfunctioned and this got posted late. It won't in the future! Enjoy.

One month down

It has been close to a month since Claire came home. These past few weeks have been both wonderfully exhausting and trying.

The first week she needed to adjust. It took time, but once she did she took off! She no longer needs the ng tube or a g button- for now. She is eating enough to be able to sleep through the night and not having to wake for a 2 am feed. She is 9 lbs. She is awake and active during the day. She is holding her head up and rolling front to back. 

Thank you, everyone, for your prayers. For those curious, we will be updating the blog every Sunday now that things have settled. 

To catch up, here are the pictures of her progress by week. 

Week One:

At home, eating (above and below).

At home, playing (below). 

At the doctors for blood work (below).

Week Two:

Sleeping (below).

At the doctors, again (below). 

Playing at home (below).

Week Three (to now):

Again, thanks for the prayers!

Much love from the Hughes family. 

<3