We have learned a lot, since, other than when Scarlett was born, we have neither one ever been hospitalized.
- Avoid getting admitted on Friday night. Hospitals are bunisness, too, as much as we might like to think otherwise. The regular staff is not available, so we dealt with one whole round of social workers, chaplains, etc. before the "real" team was in place.
- Earplugs are important. There are so many noises 24 hours a day - crying kids, alarms, chatty nurses, code blues, hospital-wide announcements.
- Plan for sleep. We got into a routine with our night nurse to plan when we would give meds, feed, change and check vitals so that we could fit in blocks of sleep.
- Breastfeeding mothers are considered part of the baby's health care (at least at LPCH) so I was provided with meals 3 times a day. This was a godsend financially (though we will pay for it in the end) and for sanity. The food was put in front of me, so I ate it. And it wasn't half bad.
- There is help for pretty much every need. We have already been informed of what kinds of emotional and financial support we might qualify for once we have a specific diagnosis. Money was a huge concern for us, and still is, but we know now that they won't be bankrupting us just yet. For instance, we will qualify for California Children's Services once we have paid 20% of our annual income in costs (and it shouldn't take too long to reach that point, as far as we can tell).
- Even as a team, doctors don't agree. We have two great specialists for Scarlett, and they both disagree as to what comes next. Surgeons are very matter-of-fact; Oncologists are more treatment-oriented. There are nurse practitioners who filter for them, since they aren't always great at talking to parents.
- Ask for crazy things and you might get them. We were told there was a couple who are doctors here who experienced a similar situation with their daughter a few years ago. We asked if we could talk to them, if they were willing and able. Our doctor asked them, and they agreed to meet us yesterday. I can't say how comforting it was to get a hug from a mommy who knew exactly how I felt. She is the only person I have met who knows how my heart aches, and how helpless I am right now; they also gave us really practical tips for how to manage our first days at home with Scarlett.
- Look around - you might know someone. We ended up finding people we knew or had connections to all over, and seeing a familiar face was great. A nurse in NICU is a friend from high school, and dropped by with goodies (Hi Jen!); one of nurses on the floor I recognized from school, and was married at my parent's church; a doctor in pre-op was a parent from the school I teach at.
We meet with the ocologists on Monday. Until then, we're going to try to go back to our regular life, as best we can. Christmas Eve with family, play with our dog, and loving on Scarlett.
I'm from the Nov board and have been following your blog since yesterday. I'm very happy to hear about Butterfly going home for Christmas.
You and your family are in my prayers. I just want to wish a very Merry Christmas.
Im from October Board. God is on your side and He will continue to shower Scarlett with love. May she feel how much you love her over this magical Christmas Season.
I'm from the July 2010 Board. You and your family are in my prayers every night...I believe in good, and I believe in miracles.
I'm a friend of Leslie & Lindi's. I've been following over the last few days and I just wanted to let you know that you & your family are in my thoughts. I'm so very happy that Scarlett gets to be home for Christmas. Wishing you & all of your family a very Merry Christmas and hopefully a better 2011. xoxo
I'm from the October Board. I will be thinking of your family and praying for you. Stay strong and keep the faith.
Hi there I am glad you are learning to navigate the hospital system and sad of course that you have to. I read your last post too and wanted to suggest something for the medication.
This one was really helpful in getting foul tasting medication into my neurologically challenged child. It doses behind the taste buds which helps with the gagging.Hope this helps.
I have a daughter 1 month older than Scarlette. I pray that the best news possible comes from the biopsy. I am so sorry for everything you are going through and I wish you a Merry 1st Christmas with your beautiful daughter.
Good evening Brandi. I am amazed at your bravery and your and your husbands strength! I believe that God blesses those who live there lives right and sometimes things happen beyond gods control .. but he never gives us more then we can handle no matter if we think we can deal or not. I am praying for you and your family and I know that with prayer love and support that Scarlette will make it through. Thank you for your story and I will be following faithfully <3
Hello. I am from the October 09 board. I saw your link yesterday and caught up on your journey so far. I have been trying to find the words to say. I don't know what to say other than our family in Eustis FL is praying for your family. The hurt you are all feeling is not known to anyone unless they are in your situation. So, while I can't say I understand, because I don't, I can promise my family will pray daily, and check here daily for the latest on Scarlet and your family. Prayers to you.
I saw a post about your sweet baby girl on the 6-9 month board on the Bump. I am so sorry you and your family are going through this. My heart breaks for you. I hope the results come back with the best possible outcome. Just know that your precious girl is in my prayers. I hope you are able to enjoy her first Christmas.
From the Sept 2010 board and I am praying for Scarlett and your family very much. Merry Christmas to you! :)
I learned of this blog from babycenter. A woman I went to high school with has a blog of her own about her daughter (about 3 months old now) and her heart condition. You may find some comfort and an empathetic ear! Good luck!
The pictures are precious! My LO has the same bathtub and same Wubbanub. I look at the photos and cry for your Scarlett. Each tear is another prayer.
From the July 2010 board...
You and your beautiful daughter are in my every thought and prayer. I'm wishing you the very merriest of Christmases and may the new year prove miraculous for precious Scarlett.
I am also from the July 2010 board. Your Scarlett is precious. She is so alert and has a twinkle in her eyes in every photo. I can tell that she's a fighter! Not a day will go by that I won't be thinking and praying for your family and your beautiful Scarlett. Sending lots of love too!
I am from the Oct 2010 board. Many prayers for your Butterfly, you, and your husband. May you enjoy every second of your first Christmas with your baby.
So happy you will be home with fam for Christmas. Best of prayers and love and can't wait for happy updates!! <3 <3 <3 to you all!
Praying for baby scarlett and hoping for a christmas miracle im so glad you get to go home Merry Christmas!!
I am also on the october 2010 board. You have a beautiful daughter, enjoy every minute. I don't think anyone can imagine what you are going through. Life is not fair, but God is looking out for you in that time of challenge.
I am praying for your baby, your family and your team of doctors!!
im from june board in BBC and im praying for little butterfly,you,your family....she is beautiful
Hi my name is Ashley and I read your story from the bump. I know all too well the inside of a childrens hospital and I feel for your family. I truly hope you get answers and soon. The waiting and trying to answer questions continually is so tough and exhausting. Hang in there! If you ever need someone to talk to that went through a similar situation my email is email@example.com. P.S. Good tip for sweet ease is put the open cup in a new diaper. Keeps it from spilling everywhere, and if it does it is easy clean up. Hugs and prayers for your family and baby Scarlett.
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