My sweets....

Hannah is doing so good! Her vision teacher was tickled pink with how well she is doing. She had her 4 month check up and the results are:
Weight: 11lbs 3% ( shes on the chart)
Height: 23 inches 25%
Head: unknown but 25%

The only thing we are working on is holding her head up... due to being in the hospital for so long and then recovery time for her heart she was not able to due tummy time. She is getting better every day and before we know she will be crawling!

She has her mick-ey button now and this allows her to play on her tummy. She likes her play mat and her bumbo. She is such a happy go lucky girl and her smiles and giggles bring warmth to my heart! She is our little miracle.

She is working on her feeds. Our new goal is to hopefully have her eating all her food by mouth in time to eat her birthday cake :)

We do physical therapy daily. She loves it.... no, not really but she needs it so we try and make it as fun as possible.


Caleb is such a cute boy! I love him! He has such an active imagination. He is so fun to play with. Some fun things about Caleb:

acth this (watch this)
heavely fadder (Heavenly Father)
he likes to tell the nurses to go away
every night at bed time he tells me "ay down mama" (lay) and then we go through our nightly routine of nose nose beep beep, butterfy kiss (butterfly), big kiss, big hug and then after laying there for 5 minutes he turns his back to me and tells me "leave now" (every night)

He is so much fun to be around :)


She looks so cute in green and pink

He has so much energy and the sweetest spirit :)

Christmas

Hope all had a very Merry Christmas! We did... we even ended up with a white Christmas! Ricky and I had fun playing Santa and seeing how excited Caleb got...2 is a fun age!

Thanksgiving & Christmas Prep.

What an eventful month! It has been a while since my last blog and I do apologize to all that follow. I must say though that it sure is nice to be busy caring for my kids and of course no news is good news :)

We have spent the last month enjoying the holidays as a family. We spent Thanksgiving at home in our Pj's and it was so much fun! Ricky grilled our turkey while I cooked the rest of our food.

We made a turkey, an Indian hat, reindeer, a Santa Clause, snowflakes, a ginger bread house, 12 loaves of cherry bread, a center piece for my table, put up our Christmas decorations, went to Ricky's work Christmas party, Drs. appointments, family pictures, and the best part of all we played in the snow!

Updates....

Hannah: She passed her swallow study test! We get to feed her by mouth. This is a slow process but it is one step closer getting the gtube out! She has finally reached the 10lb. mark, she sticks her tongue out, she plays with her hands, she can hold her head up, and she reaches for her toys! She is doing so good right now... she is our little angel. Hannah now has a more expensive piece of jewelry than I will ever own in my lifetime... she got her baha (like a hearing aid). This will help her localize noise. We are excited for this sweet girl..she is doing so many great things and is truly a blessing to our family!

Caleb: He is getting so big! He loves his sister and is a great helper. He is into trains, Dumbo, reading books, playing in the snow, and his most favorite thing to do at the moment is to help us cook. Caleb has such a strong spirit and is an amazing boy! We sure do love our sweet boy!

Ricky: plays basketball in the mornings, he has been busy with work and really does enjoy his job, reading his new book, plays with the kids at night so I can have some me time, and his new hobby.... making apple pie from scratch! What a stud!

Me: I haven't really done a lot of new and exciting things. I have been busy being mom and getting us used to our new normal. I love being able to stay at home! Over the past few months we have gone back to KC a few times and I have met some amazing women. I have learned a lot from having Hannah. There are so many families out there (some that our more heroic than I could ever explain) that are in a similar situation or worse situation. You can tell that these families are tired by looking at them but at the same time you can see the love and hope in their eyes they have for their child. I have also seen the opposite where families crumble under the stress and loss of the dreams they once had. This makes me grateful for the Atonement of Christ, my supportive husband who sees the good in all, our family and friends who help lift us up in our hard times, and all the resources we have been blessed with to help our sweet girl. I feel so blessed and am overwhelmed with the love and peace I have felt these past 3 months and continue to feel.

Love,
Sam

Blessings

The last 2 weeks have been great! The first week we were home my mom came to visit and help me out with the kids. I had a lot of fun and really enjoyed my time with her :) Rick's parents came for a visit as well and we always enjoy their company!

Hannah is 11 weeks old and has finally reached the 9lbs mark. We are excited for this. She is growing and getting stronger every day. She spends a lot of time sleeping but in her awake time she coos at us, smiles, and giggles. The vision teacher stopped by to evaluate her and she was impressed with Hannah. She said that it seems Hannah is using her vision. Coloboma is a gap in the eye... it is our job to help Hannah focus and learn to look around the gap in her vision. She is doing so good! She will get her baha in December and this will allow her to hear out of her left ear and better localize sounds. She had her cardio check up on Monday and the doctor is satisfied with her progress. Hannah has some underlying problems and we will know more about those in January when she goes in for another heart cath. Dr. Swanson is going to let Hannah out grow her meds and we will see how she does after that.

Caleb is doing great and is such a sweet boy! He loves his sister and loves helping mommy and daddy. He is growing so much and no longer looks like a toddler but a boy. When did this happen? I must have blinked.

Ricky is great! He is back to work and enjoying that. He is such an amazing man. He is always willing to help me and never complains. he loves the kids and Hannah does indeed have him wrapped around her finger. When he comes home the first thing he does is play with Caleb and give both kids loves! He always asks me if there is anything I need and that if I want to go out and have alone time that I should go and he will take care of the kids. He truly is an example of selflessness. We just celebrated 4 years of marriage last weekend. I am so grateful for Ricky and look forward to an eternity with him!

I am doing good. I have a cold right now but other than that I can't complain. Life is good. I am a blessed woman. I am thankful for so many things but the first thing a am thankful for is a loving Heavenly Father who loves me and knows of my individual needs. He uplifts me in my times of need and all the blessings I have are because of Him. I have a different perspective on the atonement of Christ and I am grateful for His sacrifice so that we some day could all return to live with our Father in Heaven and return to a perfect state of being, bodies and all.

I am grateful for the nursing care we receive in the home so that I can get my errands done and spend time with Caleb. I am grateful for family and friends and that they have done for our family. The last thing I will share is that I am ever so grateful to be a mother. I love being a mom and know that this is the one of the best blessings I could ever have in my life time. It is a divine gift from Heavenly Father. They have already taught me so much probably more than I will ever teach them. I learn something everyday from being a mother!

Happy Thanksgiving :)

Love,
Sam



Caleb for some reason unknown to us likes to sleep in the crib form time to time.

Hannah loves her sugar bear :)

We made a hat and a turkey for family night.

So cute

My new haircut... it sure was nice to get my hair done after 4 months of canceled appointments :)

What a stud! Celebrating 4 years together

He loves his sister

Not a happy girl :(

My mom and I got our hair done together.. she is the cutest! I went back and got mine shorter

Caleb loves to play in the leaves

Surpassing all expectations

We've been home for two weeks now and loving it. Yesterday we took Hannah out for the first time because we wanted to get a flu shot. That wasn't easy. Hannah has a strict schedule of when she gets her meds and feedings so we didn't have much time to do everything. Needless to say that we were an hour late on her feeding. Oh well, stuff happens.

Today she weighed in at 9lbs even. She has been gaining 1 ounce every day on average since we've been home. That is exactly what the doctors want to see and I would like to say that mom was right once again. The doctors wanted to fortify her milk (suppliment it with formula) and mom didn't like that idea. It was hard enough for mom to conceed not being able to nurse her new born let alone give her formula. Well in the end mom was right and Hannah didn't need any added formula. We might add that we tried it two other times before and Hannah just spit all of the food up anyways.

Hannah has two nurses now that watch her at the house. One during the day and one during the night. I will tell you that I was very hesitant on getting a night nurse (she comes from 10:30 pm to 5:30 am while we are sleeping) but after we missed one of her medications and then just last weekend she started to show signs of digression I realized that Hannah is still much too delicate for any slip ups in her care giving so I bit the bullet and decided to go with the night nurse. I just felt like I was not being the parent that I should be to my daughter by getting help during the night. I'm stubborn and thought that we should be able to do it since we are her parents, but then again we don't have the typical child right now. Once she keeps growing and completely heals from the heart surgery then things should be much more normal.

Hannah keeps on impressing the doctors and assistants. The neurologist was truly impressed with Hannah's interactions with people. He has seen 10 other charge babies before so he had something to compare Hannah to. The TARC lady came over today to work with Hannah's vision. Before she came over she read up on CHARGE so she knew what to expect. Well, once again she was impressed. Hannah was following the objects that were placed in front of her. We also learned how we can help Hannah develop the sight that she does have. Oh, and one side note, we were the second family that didn't care much for the opthomologist from Topeka and there are other doctors that weren't impressed with the doctor either, so I guess we weren't alone when we decided that we would go find someone else to help us.

Hannah also has occupational therapy everyday. She has cute little splints for her hands and we do stretches for her arms and legs every day. When we were in the hospital she was extremely tense (high muscle tone) and we couldn't get her fists or arms open. This is a side effect from the open heart surgery. Check out the pictures of Hannah before and after:

Before

After

Becausae we work with her every day she seems to be back to normal.

Hannah is in good hands right now. We are extremely grateful for all of the prayers that were given for our family's behalf. We have seen many miracles happen in the long couple of months that Hannah has been with us. Our hopes are high for her and she is surpassing them already. Hannah loves to lay flat on her back and stretch her whole body and when she is doing that we can get her to laugh and smile. She has definately come a long way.

Home

After four weeks in the hospital we are home! So much has happened since I last wrote. Monday I went to visit Hannah in the PICU and received the news that we were moving to the floor! I was so excited, we were one step closer to home. Before we went upstairs I meant with some neurologists who were looking into the seizure Hannah had last weekend. They ordered an EEG and the results were normal. What a process to get one of these done... poor girl! (picture below) As far as the size of her brain goes they are still standing by the only time will tell statement so we will wait and see. Dr. Graff and his fellow were extremely impressed with Hannah. They said they have never seen a charge baby as social, content, and attentive as Hannah. The fellow had Hannah in giggles. It was so cute and brought so much joy to my heart!

There were many different specialists in and out of our room all week, it was a revolving door. They seemed to all have one thing in common, and that is they were all impressed with the little miss. They also all mentioned how she seems to use her right eye to track and see. Of course she does! Did we ever have a doubt?

Hannah has some high muscle tone in her arms so OT/PT made her some cute little hand splints that she wears 3 times a day for an hour to prevent them from staying that way. They also have her taking Valium 3 times a day to help relax her muscles so we can do physical therapy. It has already helped and we are seeing a big difference from how tight they were 4 days ago.

We tried to feed by mouth but she was aspirating so we called the ENT to look at her throat. The conclusion is that her throat area is much to swollen to swallow correctly. This is common and caused by the surgery and from being intabahted twice. In a month we will follow up with the ENT and have a swallow test done. Hopefully everything will resolve on its own and then we can work on oral feeds and get rid of the Gtube :)

If we count the specialists needed for Hannah and the couple of groups involved with early intervention there are at least 10 different groups involved in Hannah's overall care. I need a bigger folder and I think it is safe to say that we have a MILLION DOLLAR BABY! The saying that babies are expensive is an understatement in our case :)

On Tuesday they said we could go home Wednesday but Hannah was having problems with her feeds so they wanted to watch her another day. Hannah has reflux and she was having a difficult time with that and the amount we were giving her. They lowered her volume of milk and started her on zantac. It has helped. Thursday we were set to go and then rehab added the Valium so they wanted to watch Hannah over night yet again. (she tends to act up with new meds) She did great! We said our goodbyes Friday morning and we are enjoying being home! I am loving being able to take care of both my kids again. Thank you to all that helped me take care of my babies!

We were driving home Friday morning and it was then I realized I missed the fall! Where did all the colors of fall go? They did what they usually do, they fell of the trees. Life goes on even if you are in a hospital for 4 weeks :)

So what is it like being home? AMAZING! Hannah's schedule is still a little overwhelming but we will get used to it. The most important thing is that we are together again as a family!

Here is a run over of Hannah's schedule:
7am- feed
9am- distribution of her medications (5 total) and put on her hand splints
10- feed/splints off
1pm-feed
4pm-feed/splints on
5pm- distribution medications/splints off
7pm-feed
9pm- Give meds/splints
10pm-feed/splints off
1am- feed/give medications

This is around the clock and the way feeds work there is really only about 1hr 1/2 between the next feeding time.

I am so grateful for my husband who is a great help, the home nurse we have for 5 hours a day, and my sweet Caleb who is an amazing kid. There are so many who have helped us and prayed for our family(you know who you are) and we are forever grateful and feel blessed to have so many wonderful people in our lives! Thank you all!

Hannah is still home bound and will be for the winter and spring. Her heart is still healing and will be for at least 6 months. She will always need to be watched closely for heart failure and will eventually need a valve replacement. We have learned to take every day one day at a time and as of today Hannah is doing great!

I have learned a great deal thus far in our journey and continue to do so each day. I have met other moms and families in similar situations. They are a great strength and example to me. I am not alone and never have been. I feel like we belong to 2 different worlds and they are both wonderful places to be! Life is a journey to be enjoyed so that is what we will do... we will cherish each and every day given to us!

With love,
Sam

Grandpa King and Hannah

Our first day home and all tuckered out! She loves her sugar bear.... so cute!Pretty in pinkThe EEG was not painful for Hannah, it was just a lengthy process

No one said this would be easy

Hannah is doing well. She should be moving to the floor tomorrow some time if she behaves through out the night. They will then watch her for a few days in recovery and then we should be set to go home :)

Last night Hannah had some twitching(thought to be a mild seizure) in her feet and fingers for about a minute. So far this was a one time thing. They wanted a CT of her brain just to make sure everything was okay. Around 1:30 today the PICU doctor came to deliver the news. The size of Hannah's brain is only about 80% of what a 7 week olds brain should look like. What does this mean? We really don't know at this moment. For now all it means is that Hannah is at a greater risk for developmental delays. Neurology is going to do an MRI before we leave. All this will do is tell us the structure of her brain, it does not and can not tell us what she will be able to accomplish in life.

What I know as her mother is that Hannah is a fighter and a survivor! She has been fighting for her little life from day 1! She may indeed be behind developmentally but Hannah has not had the chance to do all that a healthy baby gets to do. She has been in a hospital bed for more than half her life and is on at least 4 different medications to help her thrive. I know once given the chance she will catch up. This news is not easy to hear, as a parent you have dreams and hopes for your child and it was as if those dreams and hopes were ripped away from me in a moments time. I will not limit Hannah in any way! She has to have someone push her to reach the many milestones in life and to hope for her. I will do that no matter what. If Hannah does happen to have some developmental delays oh well! Hannah is the same to me today as she was when I first held her in my arms and that is she is perfect and I love her. She is who Heavenly Father intended her to be! She is loved by Ricky, myself, Caleb, and many others. That is whats important in life...love.

Ricky and I will continue to fight with and for this beautiful daughter of God that we have been blessed with. We will take this one day at time, that is all I know how to do. We will learn many new things together and this will only make us stronger as a family. We will not allow it to be any other way. Hannah has so many hurdles in life and this is just another one added in the mix of it all and we will overcome this obstacle as well as the others.

Again, we do not know what this means. This is going to be a wait and see process. We will take it one step at a time and we will learn as we go and do the things needed to help our little miss! Hannah has such a sweet spirit and she was given to Rick and I for a reason. We will care for her and love her unconditionally. She will teach us many things in our life. It has not been easy and it will not be easy but it has been and will be worth every second of every day!

Love,
Sam

Halloween

Halloween was great! We dressed Hannah up in a super cute headband and onsie to be festive and Caleb was a dragon (again). He loved trick or treating (trick treat)! We ended up going to this really nice neighborhood, the houses were huge! Caleb the dragon was a hit, his roar was so fun to hear. When we were finished and in the car driving away he kept saying "trick treat big house, trick treat big house" so cute! He is bathing at the moment and is asking me to go "trick or treat" Love it!