Update Friday: I thought I would try to update while Em is sleeping (there is wireless in the rooms here). Things are pretty much the same- although she did pee late last night with some medical help. They have put her on a strong IV antibiotic (Claforan) and are going to do some more blood tests this morning when she wakes up. She didnt sleep very well last night, but then again she is connected to every imaginable machine, so comfort at this point is secondary.
I went down the the NICU last night where Emma spend 5 months waiting for her heart transplant- almost 5 years ago. It was an emotional yet rewarding time. Alot of the same nurses were still there (her Nurse practitionar was still there, which was great!) We all talked about the last 5 years, and how far Emma has come- they were all amazed. My heart broke for all of those moms sitting by their infants beds- and even more so for the infants who had no one by their beds. It brought back such a huge amount of emotion being there- the smell of sterile soap is something I will never forget. Ever.
There are 4 other transplant patients in ICU with Emma, which in a way is nice. Us moms go to meals together down in the cafeteria, its nice to have that right now- The things we as families have been through, we were laughing last night that we should all write a book together- we really have been blessed.
Im going to go home this afternoon for a while. Easton has a doctors appointment, and I want to be there with her. The hospital is going to get a sitter for Emma (which I thought was very nice). As much as I want to be here, sometimes I just cant. Its nice to know that she isnt going to be alone (I wouldnt go, if that were the case).
Neurology is going to come in today. We already had an appointment with them, but since we are here now, he said he would just come in and see her today. Im going to talk to Transplant about their thoughts and timeframe on going home. The floor cardiologist stated that he wanted to keep her here atleast through Sunday- But the Transplant Cardiologist usually wants his kids out sooner than later- this is not the safest place for transplant kids to be.
Thank you for your continued prayers and concern- I laid here last night thinking about how much I really hated being here- and how much I hated watching her have to be here. All the beeps, and voices and just the “hospital-ness” of it all. I know she doesnt know any different, but this is not what I want for her- pray that the Lord would work on my spirit, because right now I am struggling with the path He has put her on… as aweful as that sounds, its the truth. It still, 5 years later, sometimes seems so sureal.
Ill update when I get a chance, thanks for your prayers
-H
Update Thursday: This is Heather, Thank you first of all for your thoughts and prayers- They are so very appreciated. When we picked Emma up from school yesterday, her teacher stated that she had not pee’d all day, which for her is odd because she is on a lasix (for fluid retention) she pee’s 4-5 times a day. We then met my parents for dinner and Emma just wasnt her self- so we went home. A little while after we got home, Emma spiked a very high fever and cried uncontrollably for hours (again, unusual for my daughter- even when she is sick). Mark stayed home with the older two and My parents took me and Em to the ER- where they did numerous tests and a CT scan of her chest/heart. They then transported her to a closer childrens hospital (at 2 in the morning). Weve been in ICU here since then. The Transplant cardiologist just left and said that her enzymes and cardiac function look good, and that her kidneys look stable via her labs, but she still has not peed (over 24 hours now). They are going to keep her for 48 hours to make sure things are still stable, and put her on some hefty Antibiotics just for precautionary reasons. She is perking up a bit and asking to watch barney, which does my heart good.
We are also going to be seen by Neuorology while we are here, and possibly have a 24 hour EEG done.
Ill update when I can- thank you again for praying for us! Im doing okay, this is all very emotionally draining, but it is also part of her life and we take it in stride. My oldest daughters school called me a few hours ago to tell me that Easton was in the Clinic with a fever, and a very sore throat. Her Nana and Papa went to pick her up and she is getting TLC at their house right now. I hate not being able to be in 2 places at one time.
Hopefully this is all just a bug- sadly bugs are really hard on Emma’s body and take quite a bit to fight off.
Ill update when I can.
-H
————————————————————————————————————
Dear Friends,
My name is Susan and I’m a friend of Heather’s. Since Heather’s dearest friend Laura is away, I am posting this important request from Heather.
Please pray for precious, little Emma.
Emma has gotten very sick today and is currently in their local hospital. Within the next hour, she will be flown to a children’s transplant hospital and be put in the ICU.
Although her lab results look normal, her heart rate and respiratory rates are high. She has a fever of 102.5 and all afternoon she’s been crying and holding her chest.
Heather is of course very worried and asks for everyone to please pray.
I know that we as friends of Heather wish that we could help and we must remember that we can. We can and we must PRAY.
In Christ,
Susan
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Dear Heavenly Father, we lift Emma up to you right this moment, Lord and we ask for your complete healing for her. Please take away any suffering, Lord, and give her doctors wisdom and clarity of mind. Help everyone involved to make the right decisions. Lord, give her parents the peace that passes all understanding, and strength. Lord, wrap your arms around this family, that they would feel your love. Amen.
by sarahgraceI will pray and post it on my blog!
by KilikinaSo sorry to hear this. Will pray and post on my blog. Please update when you can. xxx
by SuzyHeather - we love you and we are praying!!!
by JaniceHeavenly Father, I pray that you will wrap your healing arms around precious Emma and her family. This is such a scary time for all of them. I ask that You take away Emma’s pain, and give Heather and the others much peace and calm. Help them to feel the love and support from those of us all over the place and let them know that they are being covered in prayer at this very difficult time….
by alisonMy prayers will be with you all for a quick recovery and healing for Emma, and for wise and discerning doctors that are able to quickly determine the problem and bring about an easy solution. I pray for the peace that passes ALL understand to inhabit your hearts and minds right now. And strength to put one foot in front of the next until this crisis is over.
by AddiePraying.
by HeatherPrayers and with Emma and the whole family. And I ask God to heal this precious child and help her recover soon.
by MaI’m praying for you today too.
by Pass the TorchI’m praying.
by RebeccaI’m praying for both you and Emma Grace and your whole family. My thoughts and hopes are with you.
by TurtlesI am praying for your little girl.
by Ruthand for your family.
Shalom. xo
Am praying! Voni
by voniPraying and posting. Keep us updated.
by Robyn TippinsI hope everything is going okay.
by TessPraying…right this very second.
by boomamaWill be praying throughout the day and checking back for updates.
by LyricA prayer has gone up from this keyboard!
by Michelle in MXI’ll be praying until I hear good news. Prayers ascending right now.
by Lauren[…] From Heather’s Blog: Emma has gotten very sick today and is currently in their local hospital. Within the next hour, she will be flown to a children’s transplant hospital and be put in the ICU. […]
by Created for HIS Glory » Blog Archive » Emma Grace Needs PrayerPraying for Emma and peace for your family.
by KieshaPrayers for Emma will continue throughout the day.
by BrendaPraying, Heather!!
by MichelleDBless your heart.
I will be praying for you, Emma Grace, and the family.
by GiBeeNot our will but let your will be done God. Please give peace and strength to Heather and her husband. Be with Emma, take this pain away.
by ktI’m praying too, Heather. Thank you for taking the time to update us…
by KatrinaHeather, there have been times when Parker has been fluid positive even on lasix. During these times he has been put on Aldactone, which has helped to balance his ins and outs. Don’t know if that info will help you any, but I’d thought I would share it just in case.
You guys are in our prayers.
by Tammy HodsonHeather, I have been at the hospital all day today having tests run, so I just forund this. I am praying for you and especially Emma. I know God is in charge, and I pray for a peace for you, and healing for Emma.
by Paulette1958I pray that you will be able to bring her home soon. I also pray for Easton, and your hubby and son.
Take care my friend, and know you are emensely loved.
Heather: Praying for Emma Grace and for yourself and the rest of the family. May our Lord God watch over you both.
by SusanneKeeping Emma in my prayers! You too Heather! ;)
Sounds like your family is getting hit with the nasty virus I had this past week. Praying that everyone get’s well fast!
by YellowRoseFather,
Please put your arms around Emma Grace and allow her to be 100% well. Thank you God for the doctors and nurses that you have chosen to work with her. Let their tenderness and knowledge be used to give her comfort. Please wrap human arms of comfort around Heather and her family as they are waiting for the healing to be complete. Thank you Lord for the allowing us to lift this family up to you, knowing that you have heard every prayer uttered aloud and in silence. May you be glorified and praised in all of this. In Jesus’ name, Amen
by ShaleeI’m so glad to read an update from you, Heather! I’ll keep praying for Emma Grace, and for Easton, too!
by RebeccaPraying and believing….
by PaulaOh, I’m just now getting to this (at 4:30pm Thursday). I wish I’d known sooner so I could have joined in standing with you all way earlier - one of those things. :(
by KarlaMy prayers are certainly with Emma and all of you even more than usual during this time!!
Thank you so much for the update!
I have been praying continually for Emma and you all.
Praise God that she is perking up. Hopefully, this is just a virus.
Looking forward to more updates.
We’ll be praying for your family. Many hugs sent your way. . .
by Jaime[…] Heather was able to post an update about Emma’s condition on her blog. Thankfully, Emma has perked up a bit, but is still in the ICU. Filed under Daily Life by Susan. Permalink • Print • Email • Comment […]
by Please Pray for Emma Grace | 5 Minutes For Mom[…] One of my favorite bloggers has a very special daughter, Emma Grace. She’s a gorgeous, happy gal who has had numerous health issues throughout her short, but definitely miraculous life. Just yesterday, she was taken to the hospital. This was only her 2nd week of school in a brand new program. She is one special spirit that needs our prayers right now. In addition, her oldest sister is also sick right now too. For more of the details, see her mom’s blog at My Midlife Moments. […]
by Pray for Emma Grace & her family « The Life and Times of Daniel, Jaime, and Ava SimoneI’m praying for all of you. Please keep us updated as you can.
by BarbI emailed you!
by KilikinaI have been praying for you all since Susan talked to you yesterday and I will keep praying.
I sure hope it is just a bug and that she is back to normal soon!!!
Will keep praying ….
by JaniceI am new to your blog (came via Lauren) and so don’t know your entire story. But I know enough to pray for you precious little one. She will be in my prayers as will all of you.
by LindaYou are in our thoughts and our prayers! I am glad I got a chance to talk to you today. You always know I am here for you! Love ya girl
by ShaynaI’ve been praying for you and Emma since I heard about it.
by Jennifer, SnapshotShe’ll be getting my middle of the night, cant sleep prayers. Every time I wake up.
by Blessed Beyond MeasureThanks for the update again! Sounds like you are surrounded by people who can lift you up and encourage you. I am happy to hear you will get a little break. We are still praying!
by ShaynaThanks so much for taking the time to update again, Heather. Please know that I am continuing to pray for you guys.
by Rebecca[…] Besides the tear-inducing stories that make me embrace my children and weep for our veritable fortune in good health, there are literally hundreds of miniscule blessings I experience each and every day. And they’re often cloaked in complaint. […]
by Pass The Torch » 30 Days of GRATITUDEThanks for todays update Heather. We are still praying here….
by alisonI’m so relieved to hear she’s doing okay and wonderful that she peed.
Try to take care of yourself too… and we’ll look forward to more updates.
We’re still praying…
Heather, I’m so sorry that Emma is in the hospital. I am indeed praying for her and your family.
Thank you for the update. Please keep us posted.
by Overwhelmed!