Sad news from 7c

In the last blog I introduced you to Grandma Martha, Hailey and La Whitney.  On Tuesday I got a call from another 7c mom translating for Grandma Martha.  Little Hailey passed away the night before.  It hit me like a ton of bricks.  She was doing so well the last time I saw her two weeks before.  I know her grandma was broken hearted.  No one loved that little girl more. I hurt for her.  She wanted me to come see her the next day, when Vance had his cardiology follow up, but I knew it would be an all day appointment, so I went down that night. I started a project a while back to provide pallative care families with a memory box, photo album and teddy bear. Hailey's mom Rachel would be the first recipient.  It felt good to have something to share, but still so sad to have to do it.  Plus I wasn't sure it would help. With the last $8 I had in my pocket I bought a rose for Martha.  I couldn't leave her out and I knew she would appreciate the thought. I went down to the hospital.  It was an emotional experience.  I could feel how alone she felt. At least Vance cheered her up. They played and you can't help but smile when that boy looks at you with that dimple and grin! We talked and I asked if they moved La Whitney because I saw another baby in her room. Then they told me, La Whitney passed away two days before.  I was hit by a wall all over again.  These two little girls stole my heart and now no one would get to share the experience of seeing their sweet little faces.  And my heart broke for their innocence.  I questioned was this allowed to happen because their parents didn't have the kind of commitment for them that would have been necessary to keep up the CHD fight. But then my thoughts shifted to the Wilsons and Deebs. You couldn't ask for more committed parents.  SO why their babies and not mine.  Yes a little bit of survivor guilt set in, but didn't last long.  I know that God doesn't randomly chose who lives and dies.  There is purpose in everything and thus proving yet again that Vance's life has a purpose.  God has a plan in mind for that boy. I have such a deep appreciation for the parents who have had to let go of their babies too soon.  When you know how blessed you are you can't help but be thankful for all you have been given.  We have the greatest gift that could ever be given right in our hands LITERALLY!

Home again, Home again, jig gidy jig

Yes we'll do a little dance!  We're home, but still busy enough that we haven't blogged or Facebooked in a few days. And not facebooking is like not getting up in the morning for me!  I don't skip it! Too many follow up appointments and work to be done getting the portagen formula he needs due to the chylothorax, though. (He is on a fat free diet for the next 6 weeks.) We literally spend the first two days home in drs' offices!   The girls came home too and will be with us for the next two weeks, so I can have a "vaca" with them for the summer. They have been really helpful he last two days and honestly I am not sure how I could manage without them.  Growing up fast.  They came to the store with me today and we picked out some fat free foods for Vance that were different than what they gave us in the hospital so he doesn't get bored with the same three veggies and two fruits! Plus I wanted to try to expand the texture of his food a bit.  He seems a bit grochy and tired, which given all he's gone through is understandable. I do worry about his not wanting this portagen and the diarrhea he has had because of it.  He lost about half a pound in the hospital and could lose more this way. We'll check him again in two weeks to see how things are progressing and possibly take him off the lasiks and aldactone if his weight is too low or if there are no effusions. For our non-heart friends, that just means if there is no fluid on his heart or lungs.  His o2 sats are still low mid to high 70's but he looks really pink so that must be better than where we were.  And we still have oxygen available IF he were to need it. He is still cheesing everyone up and learning new ways to catch a laugh or smile from everyone else.  So amazing how HE just wants everyone around him to be happy when he is the one going through so much.

Complications & new friends

Grandma Martha

Hailey

LaWhitney

Well, for as well as the surgery went we have been plagued by complications. I must admit though none too difficult for my little warrior to get over. He has had chylothorax, a "possible" stroke from a blood clot on the brain, unending diarrhea from the portagen,  and pneumothorax. What a tough little guy to go through the ringer like that and still just want to play and smile at the nurses. He is nearly ready to go home though.  Just need to get this air pocket absorbed and we're out of here. We've meet new friends along the way.  Ones I am sure will touch my heart forever. The first was little Hailey.  Her grandmother Martha was the first to tell us our little monkey was out of surgery and doing well. She didn't know us yet, but she knew he was ours because we were the "newbies" in the waiting room. Funny after being here you know who is "suppose" to be there and who are the current day's surgical family. The grandma, as Vu and I affectionately call her, barely speaks english.  As we later learned, she is from Columbia, South America. We watched her spend tireless hours at her granddaughter's bedside and tried not to listen as she poured our her mother's heart to Hailey's other grandmother in plea for Hailey's mother to be physically closer to the baby during her time of need. Her eloquent choice of words pulling both mine and Vu's heart strings as we sat silently nearby.  I was so overcome with compassion and longing for my own mother to have that dept of feeling for me that I could not help myself but to have to tell her what a wonderful mother and grandmother she was. I doubt I will ever forget her loving devotion.  Then there is little Lawhitney. She's 14 months old. Has already had 2 surgeries and is in heart failure.  I first saw her when we were in our pre-op visit.  During our times in the same day observation unit, I have never seen the nurses do much nursing, just lots of coordination of various drs, & other services, some vitals here and there, but not too much other than that.  Well on this day, I saw a nurse hovering over this child, barely getting more than two feet away from her and watching her every breath. I knew this child was seriously ill. I heard the nurse do the best she could to try to have this sweet baby sent to PCICU and not the step down unit to no avail. During the 8 hours that we were there, never once did a family member appear to sit at her bedside. It was gut wrenching to think of how she needed to be holding her mother's hand at that moment and not see anyone there.  She was eventually sent to PCICU that evening. We were there three days before I saw anyone show up to visit her and by that time I had already decided to reach out to this little heart. I bought her a dress to wear and a crib toy. Not much, can't spare much especially when we have the extra expenses of being in the hospital.  I also made her a little name sign to hang above her bed or on her door. I gave it to the nurse to give to her, but she had been moved to the step down unit again. I later ran into her grandmother and was able to pass along the gifts.  I've learned that Lawhitney's mother is a teenage mom. Barely 15, I'd say.  That is only a bit older than my oldest daughter. They live a distance away from the hospital and in the next two weeks will have to go back home.  Lawhitney's mother will have to go back to school and her grandmother back to work and home to care for her other children.  Meanwhile this precious little girl must sit and wait for a new heart to become available. I had the chance to talk to her mom alone the other day and just reach out to her, share that every day her little girl is with her is a gift from God. We were both nearly in tears and I did want to go on, but Vance started to cry from the pain of his chest tube and I had to get him back to his room to lie down. I know I haven't seen the last of little miss Lawhitney. I'll be up here trying to hold her when her mother can't.