Another hospital stay

Well, we were home and recovering from surgery only to return a few weeks later to Iowa City for a respiratory illness. I called the Dr.'s at her clinic with some concerns about her respiratory status and they asked to see Lily so we ended up driving up on Thursday and she was admitted so they could monitor her overnight.

We ended up staying two nights so they could monitor her, test for respiratory viruses, and see how her feedings were going. She has still had a little bit of difficulty with increased gravity feeds through her g-tube; it has been a little slow going. But recently, now that we are home (even though she has been sick), they have seemed to improved a little and she's tolerating a little bit more. Hopefully this can continue and we can get her eating more during the day so we don't have to get up and feed her at night. That is hard on Lily and mom and dad. Lack of sleep for a prolonged amount of time is rough, as many of you moms know. I feel like we are kind of back to a newborn stage again. Waking up a lot to suction/do her cough machine and feed her during the night. Poor girl. It's so hard to see her uncomfortable and we just want this cold to be over. Your prayers would be appreciated. These last few weeks have been tough. They have been hard on us all and the lack of sleep is definitely wearing on us.

Pray that Lily would continue to tolerate feedings and more volume so we wouldn't have to feed her at night, that she would recover from this illness quickly and her secretions would lessen, so she could rest comfortably. Pray that we continue to have the strength and the patience to take care of her the best we can and enjoy her for the sweet, happy girl she is. Illnesses are so hard on kiddoes with SMA and a simple cold like this just knocks them down harder than a kiddo without SMA.

Thank you all for your support and prayers. Although we don't always understand why Lily has to go through this and it's so hard to see her so uncomfortable, we continue to pray and trust that God has a plan for her, for us all. And we have reason to hope and to believe that she may be healed and her body will be strengthened. The last few weeks have just been hard on all of us and sharing about this journey we face with SMA means sharing about the good and bad and what we go through, even though sometimes it is overwhelming and sad. To end on a positive note though-Lily's pulmonologist, Dr. Starner told us in Iowa City this week that Lily was a strong Type 1 SMA and that we were very lucky that she was already 10 months old and not needing any respiratory support (bipap, vent) at this time and especially during illness. Praise the Lord for that. We have a very strong little girl!!

Lily has been sucking on her lower lip a lot lately---this is a common face for her :) Love that girl. 

Home Sweet Home

Well, as most of you know from my facebook posts, we are home from Iowa City and recovering. We are still sleep deprived (especially mom and dad) due to feedings throughout the night and pain meds, but we are on the way to getting back to a normal routine!

We are very thankful and grateful for how well Lily tolerated surgery and recovering. We were so impressed with her strength and how quickly she was extubated and moved to room air. Even though she was in pain, she smiled and laughed, and boy, did that make us feel good. Friday (surgery day) was a long, exhausting day and we were so relieved to hear when she was out of surgery and that things had gone well. We had a lot of family waiting with us which helped distract us and of course, they brought us lots of goodies. Thanks to our family and friends for all their notes of support, prayers for strength and encouragement, and those who sent or brought goodies---all those things helped us through our stay.

Here are some pictures from our Iowa City experience:

 


Can this please be the last day of this darn tube mom?

Hanging out with dad on the peds floor 

Watching some Frozen---this girl laughs at this movie!

Some much needed sleep!

                

             
                                Snuggling with mom and dad is my favorite!

Visit from Gma Schwarck and Gma Stewart

And....Home Sweet Home====Thank you Lord

Best daddy EVER!
                                     
        

                     Our girl is growing so fast -I just think she looks like such a big girl in this photo
                                               10 months tomorrow already!!!

So blessed to have this girl in our lives. So blessed she is home and so far is recovering so well. Thankful for all of your prayers and thoughts. Please keep praying that Lily would continue to tolerate her feedings as we increase them and her pain would lessen as she heals from surgery! Pray also for rest for us all--we are very sleep-deprived from our stay at the hospital. Thank you all for your support! 

Busy week

Miss Lily has been busy and has had a lot of visitors. Last week Gpa and Gma Schwarck, Aunt Abbie and Michael, and Great Grandpa Schwarck came over for lunch. Miss Lily also got a new pool so we got to try it out! Of course, we had to fill it with super warm water, so it was more like a bath outside-can't beat that. Lily seemed to enjoy her pool; I think this girl loves being outside in the fresh air.

                                            No biggie, just reading some books in my pool!

We also got to have supper with Gpa and Gma Kramer and spend some time with Gpa outside in the wagon. Lily's grandparents just loooove their Lily girl and spending time with her. 

                                                                       

 

                                                                           

Lily is now a big cousin to my sister's kiddo Maddox, who was born on May 21st. He is such a sweet lil' bundle of joy. Lily had a special big cousin outfit to wear to go meet Maddox when he was home.

Lily looked so huge next to Mr. Maddox!

 Wide awake!

Love those sweet cheeks

Sorry for the picture overload this time- this girl is just too cute and mom is just too proud!

 Sweet cheeks :)

                                                                    

Holding hands with my dad!

We head to Iowa City for Lily's g-tube placement and a surgical procedure called nissen fundoplication which will help prevent aspiration and reflux in the future, especially if Lily requires more respiratory support. It will be a long stay in the hospital but we're praying for a successful surgery and quick recovery for Lily. Your prayers would be appreciated! Pray that she will tolerate surgery well, recover quickly, and will be more comfortable after the g-tube is placed, and be able to sleep better. Pray that mom and dad have strength as Lily undergoes surgery and that we can have peace and not be super stressed during her hospital stay. This mom and nurse will be watching over her every second of the day. :-) We know our Lily girl is a strong little girl and we have no doubts she will do great!

"Be strong and courageous! Do not be afraid of them! The Lord your God will go ahead of you. He will neither fail you nor forsake you." Deuteronomy 31:6

"I can do all things through Christ who strengthens me." Philippians 4:13