Ayden's "Crib"

Ayden's room was created with a lot of personal touches from people that loved him before he was born. As you may have read in past posts, his bedroom is adorned in children's book decor.

Today's view of his room will be of his crib. Both sets of Ayden's grandparents purchased the crib and all the matching pieces of furniture. The crib bumper pads and bedskirt were made by our close Clemson friend, Courtney. My mama helped me pick out all of the fabrics and linens used in Ayden's room. (She is the only one patient enough to handle me during that process; she also knows me well enough to know exactly what I will like!) The mural above his crib was painted by one of my BA coworkers, Jim. (Can you identify the book image? The engine is significant in the context of Ayden's life!)

Note: We love Ayden in his Hammer--M.C., that is--pants.

Home (again)

Ayden was discharged today.  He had a pretty smooth night last night.  I think the attending cardiologist on the floor made a breakthrough regarding the reason behind Ayden's agitation at night.  His thought was Ayden was going through withdrawal from his morning sedative (which is a different med than the one he gets in the evening).  So, last night, he got a dose of the morning one in the evening also and slept much more soundly for quite a while longer.  When he did have his little fitful moments, they were fewer and farther between.

If that continues to do the trick, the extra night's stay in the hospital will have been worth it.  For now, at least, we are back home.

At least until his clinic visit next Monday, when they might try to keep him again.

"One Day More"

At the end of this morning's rounds, the decision was made to hang on to Ayden for one more day.  Well, for one more night, really.  It's at night that he is most agitated and fitful, so they want to "observe" him one more time.  A change has been made to his sedation schedule to see if that helps.

The original reason they kept him after his clinic visit yesterday - visible blood in some vomit - looks like nothing to be concerned about.  He hasn't puked again, so we don't know if there is still blood in his stomach, but the x-ray done yesterday of his stomach came back normal.

So, we'll hang out here at the hospital for one more day (and night) and hopefully go home tomorrow.

Fun While it Lasted

Today was Ayden's first visit to the cardiology clinic (he comes back once a week while he is home, until his second surgery).  Today was also his first readmission to the hospital.  Yes, our vacation to home lasted all 4.5 days.

Ayden has a handful of minor things going on (sedation withdrawal and trouble sleeping to name two), but what is keeping him here for "observation" overnight is the presence of blood in some vomit from this morning.  The cause is probably something innocuous - e.g., aspirin or the feeding tube irritating his stomach lining - but they want to keep an eye of him for a while so they can rule out more sinister causes.  In other words, they are playing it safe.  While we do not enjoy being back in the hospital in the least, caution is certainly the better course of action.

Hopefully, everything will turn out fine and we'll be going home again either tomorrow or the day after.  If not, I suppose we'll deal with whatever comes up.  It's hard, but I'm trying to view the last few days as a needed reminder of why we are doing everything that we are, as a preview of what we trying to accomplish in the long term - having him home, all the time, without restriction.  Hopefully, this return to the hospital will be nothing more than a short step in the long march towards that goal.

Getting that taste of what we are striving for makes this easier, but it makes it harder, too.

***

Jude Update:  The doctors have determined Jude's shunt (the tube put in during the surgery to allow blood to flow into the lungs to get oxygen) has clotted off.  He is scheduled to go in for surgery tonight to have this problem rectified.  Please keep him and his family in your prayers.

Parenthood (at Home)

We love having our baby boy at home.

Home. That word carries so much more meaning after having spent almost twelve weeks at Vanderbilt Children's Hospital. Being at home allows us to be a family that celebrates life together.

I am so blessed to have Bryan with me to help with the learning curve of having a baby at home. Yesterday we put Ayden in his first outfit that didn't have buttons all the way up the front. You should have seen Bryan and me trying to figure out how to clothe Ayden with the least amount of stress placed on our son (and us)! He looked quite cute in his overalls, as you saw from pictures posted from his pediatrician visit, and the pocket in the front was handy for keeping his feeding tube secure. (When I asked Bryan this morning to get an outfit for Ayden for today, he came back with another full button outfit! Oh, well! Ayden is still super adorable!)

Last night we gave Ayden his first bath. I wish that I had thought to have a camera handy, but once we started the process, I couldn't be so cruel as to make him wait for it to be over just because I wanted pictures of him hating the experience. Yes, just like in the hospital, he cried through the whole ordeal. He also peed in the water. Oh, joy!

Bryan and I haven't slept all that much the past two nights. Bryan mentioned that life is very different without the comfort of the hospital monitors, but more than that, we are trying to figure out how warm to keep him and when to change his diaper and/or add formula to his feeding pump. Ayden is also trying to make adjustments, and he is in the middle of a sedative taper, so that can make for some fitful sleep. (Of course, he sleeps like an angel during the day!) Last night I remembered from my pediatrician notes that babies usually like to be swaddled up to four months of age. We decided to give it a try, even though he hasn't wanted to be swaddled in a very long time (not since the first time we were in 6C). I'm glad we gave it a shot because swaddling appears to be doing the trick!

Ayden really is such a sweet baby. He smiles a great deal, and he is wonderfully observant. He still is so enamored with Bryan. His eyes will follow his daddy throughout the room, even if it means tilting his head pretty far back to see Bryan behind him. (Below he is looking at Bryan.)

Ayden has his first cardiac clinic appointment on Monday. We have been listening for his heart rate with the stethoscope and monitoring his oxygen saturation with the pulseox machine. He has excellent numbers. Please pray that they find things to be going as well as we think they are.

Update on Jude: They will begin slowly weaning Jude from ECMO tomorrow. Matt and Diana have been told that Jude will stay in the hospital until after the Glenn procedure, the second surgery for hypoplasts.

Special Thanks: This afternoon we received a basket on our doorstep. I was (am) so overwhelmed by what the present contained. Two of my seventh graders from this past school year, Allyson and Elizabeth, recently had their 13th birthday party. Part of their festivities was spent thinking of our little family. They organized donations from their friends, also students from BA, and they created a package filled with gift cards, quarters for the hospital, and a journal. Each of the girls at the party signed a card, and they included pictures from the party. I feel encouraged and blessed by their tenderness and thoughtfulness. God shines so brightly through these young ladies and their families. We are humbly grateful! Happy 13th Birthday, Allyson & Elizabeth! THANK YOU!