New Normal

Everyone says we will find it.  I am not so sure....  Time either flies by too fast and we wake up one day realizing Paige has been gone 5 months or the days between 5 months and 6 months drag from Day to day, minute to minute and hour to hour.
A week after Lily's MRI I realized I had shut all emotion behind the wall in my heart.  Even getting the good news of no intervention needed right now hasn't broken the wall.  On Wednesday morning the wall started to crumble a little, but I find the anger is breaking through.  I am so angry that she is not here, that I hurt as much as I did all those months ago.  I really want to smile to feel happy, but I don't know that I ever will.  I have a mask that I wear to work, to the grocery store, virtually everywhere.  I only let the real mask off to my two closest friends and my counselor.  Then I have to carefully put it back in place for Tom and the girls and whomever else I run into.  Unfortunately it is not a great mask and there is a lot that slips past it.
I have lost contact with friends that can't deal with the new Sarah.  I see people hide from me or change their conversation so as not to hurt me.  See that mask does come in handy, I can pretend I don't notice or don't see you too.
I find comfort in strange places, Paige's nurse that came to see us while Lily was having her MRI and then again in recovery.  From strangers on facebook and people I will never truly meet.  I am trying to educate the few people who can tolerate me how to deal with other mothers who have lost a child.  I even set up a facebook page to allow myself to just talk about my feelings and share pictures of only Paige.  However I am finding I can't separate myself like that and there is a lot of crossover especially in the feelings area.
So no I hope this not my new normal, it is just me right now.  I am working on Paige's angel/thank you cards and hope to get them in the mail before May.  I can only get through about 5 on a good day without completely losing it.  I am working on organization, I need a lot at home, work and with the girls.  I had an issue last week with crossing responsibilities.  I was supposed to work and be on a field trip at the same time all the while I had no one to care for Lily. It didn't dawn on me until the day before when my boss was double checking that I could work(not a normal Friday) that Friday was also the eighth which was the date of the field trip.  (If anyone finds my missing brain matter, please return :) 
So I am going to try to write more here now.  Hopefully it will help and hopefully it will be to document the good not just my needy self.
Thanks for reading.

Paige 2

·      Paige update:
I have had the opportunity to visit with Paige twice today. Her blood loss has minimized and is in the less than 10 ml range and appears to be getting under control at this time. Swelling has decreased dramatically since Wednesday with her total body fluid output exceeding input by about 300 ml per day for each of the 2 days.
As the swelling continues to subside, the Doctors, Nurses, and ECMO techs want to see her work to use her heart to start to take over the flow of blood through her body. To quote "The reduction of blood loss and the increase in fluid output with associated reduction in swelling is good. We now need to concentrate on weaning her from ECMO and let her own heart and lungs work to take over". We ask that you Pray for Paige and for the continued reduction in blood loss and continued increase in fluid loss with the attendant reduction in swelling. The most important request for prayer at this moment though is for "pulsatile blood flow". Your continued prayers are requested for this precious little girl. God is listening and answering these prayers as evidenced by her progress in the last 36 hours. Thank you for your prayers! They are sincerely appreciated!

This is from my Dad's facebook and email.  I am too tired to write this much.  Still praying for pee to be plentiful, bleeding to cease and heart to start to beat on it's own.  We are praying for our own miracle baby.

Paige

Dearest Friends,



Paige is not quite 48 hour out of the first surgery. They have gone back in two times bedside to suture up some of the bleeding and pull out clots. She is extremely sick, her heart upon close inspection by the surgeon was deemed very sick. Today we have celebrated the small things, her pee has increased due to medications and this helps take down the swelling in her entire body but most importantly the swelling around her heart. She continues to be on a machine called ECMO which is a heart/lung bypass machine so that her heart can rest and hopefully heal. We pray that she continues the trends from this afternoon. She needs to continue to pee constantly to get rid of all the extra fluid, she needs to bleed minimally from the chest tubes, she needs to use the pace maker pulses to try to pulse on her own. The hope is that by Monday that her heart will have healed enough for her to start to take back over. Please continue to pray for her, God is listening and we feel it here in the small steps she is taking. There is a long weekend ahead and we are prayerful that she will recover. Please also pray for Grace and Lily. Lily's birthday is Sunday and I haven't seen her or Grace since Monday evening.



Thanks,



Sarah

Paige Leigh Campbell

Paige Leigh Campbell

May 29th 2011

9:58 am

8 pounds  6 ounces

19 1/2 inches long

She is stable in the NICU awaiting transport to Egleston Hospital in Atlanta.  She will undergo heart surgery as soon as there is a surgeon and bed for her to recover in.  She is not allowed to eat and is getting all her nutrition and medicines through her bellybutton.  We are not allowed to pick her up due to her lines running through the bellybutton.  She has coarcation of the aortic arch, bicuspid valve of the aorta, supravalvular aortic stenosis(like Lily) and pulmonary stenosis(like Lily).  At this point we do not know with the exception of the coarctation what her surgery will entail.  They could possibly want to correct everything but the valve now or wait to see how she fairs with just the coarctation surgery.  Please pray for her health, her doctors, surgeon and nurses.  Pray for strength for Tom and I.  Please pray for her two sisters who have not been able to see her, other than through pictures, they do not understand why they can't see her.  Pray for Grace to have strength also, she is starting to show signs of stress and her stomach is hurting again :(.

Love to you all

A letter

Dear Friends,

Three and a half years ago we had a beautiful daughter who entered our world earlier than she was supposed to and with a few issues but has been a firecracker ever since.  On Tuesday our last child will be born via C-section (as long as she follows the plan).  Yesterday we found out that she may also have a heart issue that needs to be dealt with immediately.  She possibly has a narrowing of the aortic arch called coarctation.  If it is too narrow they will do surgery sooner rather than later.  However because I am having a C-section I will not be allowed to leave the hospital to go to Children’s Hospital for 3 to 4 days.  Hopefully the hospital I am in will be able to keep her in the NICU put her on prostaglandins and have the specialist check her in the NICU.  Hopefully she will not need surgery and they will be able to take her off the prostaglandins and she will be able to come home when I do.  None of this can be determined until she is born and they can get an accurate sonogram of her heart.  She likes to throw shadows on the sonograms the specialists have done while she is baking.  And believe me there have been a LOT of sonograms.

At this point best case scenario is that she is immediately put on meds and then it is determined she is ok and we will be home in a week all while staying in the NICU at the delivery hospital.  Worst case scenario is that she will have surgery to correct this problem when I am able to get to Children’s Hospital where she will be and I will not be able to see her, hold her, and feed her for 3-4 days.

Of course Lily and Grace know none of this.  Grace is filled with anxiety as it is and has already asked me this week if what happened to Brendan could happen to this baby.  The girls may not get to meet their sister until after surgery, or through a window at the NICU.  Right now there are a lot of ifs…

The baby and Lily will most likely be tested for something called the elastin gene.  The geneticist believes that this might connect the two girls and their possible similar heart defects.  If they are positive; Grace, Tom and I will have heart echocardiograms and cheek swabs to see if we are affected or carriers. 

So I am telling you all of this to ask a favor.  First and foremost pray for us as we face this challenge, that we have the strength to possibly separated at different hospitals at such a critical time and not be overcome with stress and anxiety.  That you pray for our baby’s health so that she can come home soon.  And finally that you not talk to Grace about it.  We have had a very rough year with her emotionally, physically and we do NOT want to add stress and anxiety back into her life now that she seems to be calming down.

Thanks,

Tom and Sarah

Five

Brendan Daniel Campbell

March 1, 2007

On Angel wings to heaven you fly

We remember you everyday but most especially on this day

We love you always.

Where I have been and have a lot of catching up to do....

We are adding another little girl to our family.  She is growing nicely and we are all very excited.  I hope to catch this blog up and add more details soon.