Homecoming

This morning we prepared Delaney for home care. They removed all the remaining IV lines, removed heart rate monitors, temp monitors, and respiratory monitors.

Around 1:30 we were discharged and made our way home. It was very scary to venture out of the loving care of Children's Hospital. Away from so many caring souls who not only diligently watched over Delaney, but took us under their wings. We have made connections with tremendous minds and hearts who are absolutely in the right field.

The primary care physician, and many of the nurses who cared for us were in tears as we left. They wished they could have done more for us, and I know that in their hearts they want our precious angel to recover. They are faithful people, which surprised us. Each one of the specialists sat with us personally, cried, and tried to console us. They took such personal interest in our family. Each success and each failure was met with elation and devastation respectively. The were true human beings who never lost sight of the fact that all of out hopes and dreams were tied to this beautiful baby, who has had such an impact on this world in such a short time. Unfortunately, with what they know in western medicine the prognosis isn't good. In their eyes, she may only survive days, weeks, or months. No one can really say. It's in God's hands, and Delaney's heart - which is strong despite it's defects. She's such a fighter.

All I know is my daughter is resting comfortably on my chest, breathing easy, and I'm loving our healing embrace. She's cooing from time to time, stretches and arches her back. She's even grasping our fingers. Her breathing has been much more easy and rhythmic even better than it was yesterday. The notable shudder in her breathing that seemed to scare even the doctors has all but subsided now that she's home and in my loving arms.

Our home has a different look to it. We have a lot of hospital equipment to get used to. She has an O2 concentrator, an infuser, and a suction device to help clear her secretions from her mouth, nose, and throat. There are some new noises and beeps and buzzes, but it's all here to keep our angel as close as possible. She has a feeding tube which runs in her nostril and down to her tummy. We give her breast milk and meds through a syringe, and while it all seems so alien and strange, we will do anything to give her a second chance.

The one thing that every doctor said, is that "we never know". We have hope. All of this can be very overwhelming at times, but we are coming to terms with this new set of standards. In many ways this is like coming home from the hospital all over again. A "new" baby with different needs. We have to learn a whole new set of skills.

As we settle in to the task at hand, we will be agressively pursuing alternative medicines. We have not lined up treatments concretely but we were actually encouraged by the doctors at CH, to pursue "any and all options". I know that they so badly want for all of this to go away and return our sweet Delaney to the way she was, in what seems to be ages ago, but was only a little over a week's time.

It was more than a little stressful this afternoon, but after a wonderful visit by two close friends who brought food and good cheer, and complete with Lindsay's Dad who will be staying over for the next three days we know we will be able to get comfortable with this difficult job.

We love you all for the continued support. At our core we are strong, and we know that we will get through this. We thrive on your thoughts an prayers and energy.

We love you all,
B & L & d

Easter

Today, we are at least one step ahead. Delaney's sats continue to be high, and after slowly weaning her off of the ventitlator she is now breathing on her own, with some oxygen support. They took the vent out at approximately 6pm and will only replace the the tube if her sats become compromised or her secretions do not remain clear.

Last night we were able to leave the hospital for a while with my parents, brother Jamie & girlfriend Sarah. It was a welcome distraction but not easy as so often our hearts and minds turn to our sweet baby girl. We are so overwrought with the unfairness of all of this, but despite that fact we remain optimistic. We are taking things really one moment at a time.

When we went to tuck her in last night her breathing was very "junky" with oral secretions and mucous. We were holding her and she seemed to be really uncomfortable and upset. So we thought it best to put her back in bed and let the nurses treat her. We really had a hard night, seeing her in pain and having difficulty breathing clearly brought back those awful memories from a week ago. We are just so thankful that we have eachother, we couldn't do this without such a strong relationship - let alone our faith.

Most recently, this afternoon I was able to hold her for about 2 hours. Her heart rate was calm and her blood pressure was down from where it had been. We know that she responds to us in some way. She just seems to be so much more at peace in my arms. I will continue to hold her and soothe her as much as possible. I can't tell you how good it feels to see her calm an breathing on her own, on my chest...like it was just a week ago. Lindsay is holding her as I write and it's wonderful to see that motherly glow in her face. I imagine her taking an afternoon nap on our couch, we long for those days.

Medically, they have weaned her completely off of dopamine, and adjust her oxygen feed as needed there may be a day soon when she doesn't even need that. They are also looking to reduce one of the siezure medications so that she may be less sedated and possibly engage her senses more. We are hoping that when the meds are reduced we will see more of her "typical baby" behavior return. More importantly we want to see her suck and swallow which will mean that when they allow feeding by mouth we can trust that she won't need assistance. Time will tell.

Today is Easter and is a day of rejuvenation, rejoice, and rebirth. We hope and pray that gods plan is to bring back our Delaney to truly be a part of our family. We want her to truly live, engage with us, and have some sense of autonomy. If this is not His plan we hope thy he will embrace her in His arms and bring her in peace to those who have already passed and that they may be able to look after our sweet Delaney.

We hope this message reaches you in peace and happiness on this Easter Sunday. Please continue to share in our intentions. We thank you for being with us on this most difficult stretch of our journey. You continue to give us strength and optimism.

Love,
B & L & d