Going home soon??

“Working towards getting you home tomorrow morning…” That’s what we are hearing as of this morning. Dare we get our hopes up? And when we do get home, what is home going to feel like? How long will it take until we establish new routines and get adjusted to life connected to oxygen 24/7?

In last two days since I wrote there have been many ups and downs, though most of those ups and downs have not been directly related to Nora’s condition at the time. She has been much more content since the heart catherization – most likely as a direct result of being left alone a greater percentage of her waking hours and being fed consistently! We are also starting to see some emerging patterns in her blood oxygenation levels that will be helpful for us to get to know as we work with her at home. She seems to have a time each evening as she is settling down for the night when she drops and needs a bit more oxygen to keep her saturation levels in the 90’s. But after that brief period she stays high for the remainder of the night and hasn’t been having much trouble during the day. She has done well with the medication and as of this morning is at the target dose that they hope to send her home on. She is doing amazingly well with feeds. Last night she got 30 cc’s (1 ounce) each hour for 10 hours by continuous feed. This is probably more food than Nora has ever consumed in one night. That being said, she still managed, the moment she saw me this morning, to make it seem as if she hadn’t been fed all night until I nursed her.

A quick summary of the “up” moments:

- Mom and Dad Benner’s visit with us: it was special for Kali to have concentrated time with them which I believe all thoroughly enjoyed. Last night Kali, out of the blue, said, “I wish Grandpa and Grampa were my parents.” I could only laugh!

- Yesterday while Jason was cleaning off Nora’s nasal canula she gave him a BIG smile! She has also really enjoyed reading books with us.

- Kali and I’s walk back to Ronald McDonald house together last evening. It felt good to walk hand in hand together chatting about our day, not to mention finally allowing her to talk just as loud as she wanted to!

- Mom and Dad Myers’ safe arrival late last evening – even if I did manage to get them thoroughly lost trying to direct them to the house. I won’t live that one down for quite some time.

- Karen and Sue’s visit last evening, which included the delivery of a yummy meal and wonderful play time and entertainment for Kali!

- Nora not spitting up for close to a week and tolerating her feeds beautifully – she also crested 3 kilos today (so about 6lb 10oz), which is as high as she has been and a good number of ounces higher than she was when she arrived. The GI doctor actually said we shouldn’t expect a lot of weight gain the first several weeks with the G-tube as her body adjusts to the increased feeds. So they seem pleased.

- Jason and I both getting more than 1-2 hours of sleep straight! When I called Jason this morning to check on his night he said he wasn’t sure what he was going to do with all this sleep… That hasn’t felt like a concern to me thus far...

- Nora being able to sit up comfortably again and once again seeing her straining her head to see everything in the room and check out who is coming to get a peek at her next. I’m resigned to the fact that we’ll likely have to wait until we are home to be gifted with her cute cooing again. I miss it!

- Kind nurses, competent doctors and good play areas right on 7^th floor to occupy and entertain Kali.

Some thoughts about the more difficult moments:

Yesterday Dad Benner and I left for Harrisonburg around 4:45am. I was very grateful for a chauffeur! It was the start of the second session of our Summer Peacebuilding Institute and felt like a hard thing to miss and to have someone else fill in for me. So Mom Benner and Kali spent the day together, Jason cared for Nora and got a practice round at bolus feeding for most of the day and I worked for 8 hours by myself with two hands for the first time in months. Sadly, it didn’t feel nearly as wonderful and freeing as I had hoped for. I felt like my two worlds were crashing together every time I looked down and saw my green hospital wrist band, reminding me that I was the mother of a baby in the hospital. I left a lunch meeting early to scurry back to my office and get ready to head to our home to meet our “oxygen suppliers.”

What an overwhelming hour! I got a quick training on the different equipment we will be using and had a few scares too. I’m so very grateful that we tend to love being at home and I think we’ll never be so grateful for the hours Jason has invested into making our home a warm and comfortable place for us to be. We will be spending a lot of time there! We’ll have a certain number of hours a month that we can use our allotment of portable tanks to take Nora out – for walks, to work in our yard/garden, to go to doctor appointments, to go to any social events or church or the homes of friends and family. Otherwise, Nora will be hooked up to tubing connected to an oxygen concentrator with a maximum of 50 feet that we can go in any direction from the machine.

My moment of panic came when the representative from the company mentioned (almost as a side comment) that we need to keep Nora, the connection points in her tubing and the concentrator at least 25 feet from any open flame. When I mentioned that we heat with wood, his replied “Well, it’s good it is summer.” He clearly had no idea that we are looking at this possibly being what Nora needs for life! When I responded that we haven’t been told to expect this to be short term, he suggested that we consider an alternative heat source. Alternative heat source?! This was our idea of an alternative heat source and we love it for so many reasons! It was not the first time I was about to burst into tears and have a tried and true tantrum in front of professionals that are trying to assist us in caring for Nora. Both Mom and Dad Benner did their best to reassure us that we can probably make it still work to heat with wood and that 5 ft might be a more reasonable and safe distance to use as a guide. Regardless, there are so many things we’ll need to think about that we have never had reason to consider. No more candles for gifts please!

Our meeting with the cardiologists yesterday, while sobering on some fronts, also had a bright spot in it. They do not feel like we need to have Nora on the pulse oximeter (monitor) all the time. PHEW! They seemed to agree that it would not be helpful in maintaining our sanity. So as we learn Nora’s patterns we will likely find the times that are most essential to be monitoring her more closely.

I better close for now! Unless you hear otherwise, assume we will be heading home tomorrow in the morning sometime. As an act of faith, we have released our room to others on the waiting list at the Ronald McDonald house. Mom and Dad plan to take Kali back to Harrisonburg tonight to let her get resettled at home. Jason and I will both spend the night here at the hospital so we can be ready to pack up and leave as soon as they will release us in the morning! Today should be fairly routine other than the surgeons coming to take Nora’s stitches out and Jason and I meeting with a different person to get additional oxygen supplies that we’ll need for taking her home.

Thanks to all of you for journeying with us and for thinking of us and praying for us over the last week in particular! We are grateful, Janelle