Hello,
Well Emily is now at the Children’s Hospital. She was moved to the conventional vent yesterday so they could do a EEG (to monitor her brain waves and check for seizure activity). She did well enough for it to get her transported to the other hospital, where she was put back on the oscillator.
It was hard to say goodbye to the place that had been our home for the last 6 months. There was a crowd of people partially lining our exit out. Many of her nurses want to see her in her new “home” for now and so Emily will see some familiar faces (other then ours) from time to time. Also the doctor who was on service during those critical first few weeks of life is going to be on service at this hospital soon. We can tell he really wants to take care of Emily in her new home as well, though he doesn’t know if he will be able to.
Emily is doing well at her new home. They will not let her desat even a little bit. When we were finally able to see her her sats were in the very high 90’s to 100%. They have IV’s in everywhere and I have said numerous times that she looks worse now then she did when she was first born. To the best of my memory, she has one in each foot, each hand and one in her head. One of the ones in her arm is an arterial line that they can draw blood from. Her color looks good but she is noticeably puffy. This is mostly do to the muscle relaxant that she is on that is paralyzing her. They did an EEG on her for 12 hours last night. It will be interesting to see how she did. We do know that at the first hospital the EEG that she had yesterday showed a 2.5 minute seizure. It is still unclear what is causing these seizures though.
This new hospital has some nice features. First of all the parking is 1/2 what is was! We paid $8 a day at the old hospital (that is after the first 2 months when we found out there was reduced parking, it was $15 for the first 2 months), here we pay only $3. There are lots of interesting places to choose from to eat if we eat out. Some of which even offer discounts to parents. When Emily gets off some of this equipment that she is on I can even sleep next to her bed sometimes!Emily does have a window, and her spot doesn’t appear to be as cold as the last spot. We still hear stories about other parents who have children that were barely preemies but now we don’t hopefully have to see them all the time. We did hear how some parents hated the hospital that Emily came from and complained about this or that. Most of which I know from all the discharges that I heard (through the 5 months) were false. One last thing that we like is she now is known officially as Emily and not Baby girl B.
We expect Emily to get a spinal tap today (or tomorrow) and an MRI when she is back on the other vent.
That is about all the news I have for now. Thank you for your continued prayers!
Jennifer
Just wanted you to know that I learned about Emily through another preemie mom and have been reading parts of your blog and praying often for your little girl. I hope the EEG news is good and that she can keep her sats up. I’ll be checking back often and will keep those prayers coming.
Jenn and Tony
I am praying that we get some great news from this new hospital very soon. Emily is fighting everyday to be able to come home soon and she will continue to do so. I am hoping that you guys are holding up well though. This road you have been going down has been a long and hard one, so please remember to also take care of yourselves too. Emily needs to come home to parents who are emotionally and physically strong. I realize I am clear on the other side of the country, but please let me know if there is anything I can do to help you.
I love you
Julie
Hi Jennifer, Tony, and Emily,
I am glad that the ride over to CHOP went well and that Emily is more stable. We’ve all been really worried about her and of course will keep praying that they can figure out what’s causing the seizures so that they can treat them and that her ECHOs and lung functions show improvement. And hopefully we’ll even to run into you at CHOP during one of Hallie’s (NUMEROUS) visits there. The 3 dollar parking is a good thing; the parking lot, however, is just as badly laid out as Pennsy’s is. Take care of yourselves and of your precious little girl!
Abby, Sharon, and Hallie
Great, is is such a big step for Emily and for you parents, too. Surely, she will prosper in her new environment. We all know how positive changes can influence our lifes, and it must be the same for Emily.
I keep praying for her health and also that she will be able to go ‘home’ soon.
Doris from Church
Great, is is such a big step for Emily and for you parents, too. Surely, she will prosper in her new environment. We all know how positive changes can influence our lifes, and it must be the same for Emily.
I keep praying for her health and also that she will be able to go ‘home’ soon.
Doris from Church
Thanks for the updates. I think of Emily often. Our prayers are definitely with you all.
Oh boy, I have been away for a couple of days and really regret not checking her site earlier. I am praying for Emily and both both of you everyday! I hope that you will have better results at Children’s hospital. It is nice to know that she is known by her name now and not the baby girl label. Please give her kisses for me and tell her a lot of people are thinking and praying for her.
Hugs,
Susan
I just came across your site through Asher’s. My Ivy was born at 27 wks. weighing 1 lb. 6 oz. and having Down Syndrome. She just turned 5 last week and is doing amazingly well! Keep your spirits high and I wish you all the luck in the world! Lots of Love!
Misty and Ivy
caringbridge.org/nc/ivymeredith