Adjustments at Home

We've now experienced 24 hours of home care with our precious Delaney which has been interesting to say the least. There were moments of shear anxiety, fear, and panic. Intermixed with amazing little gains, and small steps forward.

When anyone brings a newborn home, 1st child or otherwise there is this notable overwhelming feeling of responsibility. This feeling we know all to well and this transition to home care has compounded that feeling ten-fold. We have a whole new set of tasks, some are time dependent, while others are "on-call".

We feed Delaney through a syringe which runs through a naso-gastric tube. This has to be tested from time to time to ensure proper placement - a minor task but important. We have several steps that are required to prep her for feeding, it's relatively simple but so remotely different from what it was like before. We used to hear a distinctive cry and fussiness that alerted us to a feeding, now it's on a schedule. It's somewhat mechanical, but what isn't lost is that closeness. I can never get enough of my sweet baby. Feeding is very strange by comparison but she snuggles in and soaks up the love.

Her breathing is supporting with oxygen. We have a compressor which is kind of an amazing machine that takes all of the room air, filters it and maximizes the O2. She has tubing that runs into her nostrils, called a cannula. She breathes relatively well on her own and as I've indicated before her somewhat shuddered breathing has improved, but she still needs a boost of support.

What is really anxiety provoking is that she cannot cough or clear her own throat. So we have to monitor her breathing and when it sounds "junky", vaccuum out her muccous. It's a scary experience. You can tell she needs relief, but the process of suctioning her airway is very irritating to her. She turns bright red and holds her breath and every millisecond she isn't breathing feels like minutes. Of course we have to get through it, and even have to be a bit "mean" so she can avoid aspirating her fluids. It's such a big responsibility.

The other very important regimen is administering her medications. we have three liquid meds; two for siezures, and one for stomach acid. These are given in the morning and at night. When you are dealing with infants the measurements are small, precise, and very delicate. I am thankful that Lindsay and I are such a team in this because this morning I measured incorrectly because I didn't read the written instructions carefully enough. We thankfully caught the mistake...yet another stressful experience and something that just two short weeks ago we would never have dreamed we would be having to deal with.

We want you to know that while all of this is overwhelming and scary, there isn't anything we wouldn't do for our daughter. It's not what we want, but it's what we have. I am thankful that Delaney is with us, because we are capable, full of nothing but hope and love. We will be tested, tried, and challenged but if there's something that we can do to provide comfort and a chance for healing we will do it.

Despite all of these challenges, she looks so much better than she did even two days ago. She has good skin color, and from time to time seems to have more physical strength. I am so glad that we are able to feed her breast milk although this has been a challenge for Lindsay, feeding the breast pump is not the experience she had grown so accustomed to...I know she misses that special bond and motherly time. I miss it too. Who knows, maybe that will return with time, babies are amazing...Delaney has fought so hard to this point, I know she wants to be with us with all of her heart. She holds on to our fingers so tightly.

Today, we were visited by many people - official, family, and friends. It was so uplifting and warm in this house. Two colleagues who have become dear friends shared with us their tears and concerns. They were apologetic for they intended to be "strong", however it was in their sharing of our space and time that they demonstrated the most strength. The fear that we have as parents of such difficult circumstance is that people will flee; out of fear, or not-knowing (what to do). So many have demonstrated to us quite the opposite, we have been rallied around!

We are reminded daily of how much love there is in this world. Our connections with friends and family far and wide, strangers of all faiths coming together to pray, share positive thoughts, advice, and concern.

While many cannot be here with us physically, and many cannot help us day to day with the difficult tasks at hand, we know that you are all with us in spirit.

We don't know how much time we have with our beautiful little girl, maybe no one ever really knows how long we have with the connections that are important to us...but we do know that each day is a gift.

God bless.

Love,
B & L & d