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