Getting on a schedule.
Learning new routines.
Keeping up with all of Samuel's cares.
Making sure prescriptions are filled.
Fighting hard to get all of the necessary medical supplies approved by insurance.
Maintaining/sanitizing all of Samuel's equipment.
Dealing with insurance and government offices.
Advocating for our son.
Making sure doctors are collaborating.
Finding new doctors and coordinating appointments.
Having OT, PT, and speech therapies.
Going to doctors appointments.
Loving on Samuel.
The list could go on...
It is pretty non-stop around here, and sometimes we feel like we're running a hospital, but (as you've also probably guessed) we wouldn't have it any other way!
We are beyond thankful. God has taught us so much in each season that we've walked through, and being home is just one more season of learning.
One of the hardest parts about this season? We are pretty much confined to our house. Our biggest priority is keeping Samuel healthy, and we came home right around the time of year that sickness begins to run rampant! So in order to protect Samuel from a "common" sickness that would likely put him back in the hospital 3 hours from home...he only gets out of the house for his doctors appointments, occasional strolls up and down our little street when the weather is nice, and twice now we have ventured next door to the grandparents' house (but only after thorough screenings to make sure there was no sickness!).
But we can't complain too much about not getting Samuel out of the house often, because it is no easy task! If you think getting an average baby packed up and out the door for an outing is time consuming, try doing it with all of Samuel's equipment! Although we are getting faster and more efficient, it is a process - making sure we have all of the necessary emergency items, medical equipment, and typical baby stuff. We are so thankful for our double stroller, because all of the necessary items would not fit in a regular stroller!
Church? For now, must be done from our living room. We are so thankful that our church does a live audio stream of their service so we are able to join in! But it is hard missing out on the fellowship. We are blessed to have a church family that has rallied around us even in our absence - bringing us meals, and making sure we have everything we need. We look forward to the day that we can once again attend!
Outings? Other than going to appointments with Samuel, I have been out of the house 5 times since getting home over 7 weeks ago. Twice going to the social security office, twice for groceries, and once to vote. But that's more outings than I had in most 7 week stretches over the past 9 months, so it's hard to complain! When we were in the hospital - especially the 5 months we spent in Delaware without a vehicle - we rarely left the hospital, other than walking to and from the Ronald McDonald House in the morning and at night. In the 7+ weeks that we were back at ACH, after transferring back from Delaware, I only walked out the hospital doors 3 times...All that to say, we are pretty used to it by now! I try to make it a point to get the mail out of the mailbox every day before Seth gets home, because otherwise I usually don't even get the chance to step outside of the house. But, of course, I can only walk out to the mailbox if someone else is in the house with Samuel to respond to his alarms.
Seth and I have not yet had the chance to get out of the house together, other than when we have taken Samuel to his appointments - which is not exactly a leisurely activity, and doesn't allow for any side trips. But Samuel could only be left with someone who has been thoroughly trained in all of the emergency situations for a baby with a trach, and even most nurses haven't dealt with trachs. Anything can happen at any time...
Is it hard? Yes. But we know that it is only for a season.
Sometimes seasons seem like they will last forever when you are in the midst of them. It can be hard to see the light at the end of the tunnel. But, looking back over the last long season of hospital stays, it already seems like so long ago! And we know that the same will be true for this season! By the time next spring rolls around, and we are able to come out of hibernation a bit more, we will look back and be amazed at how far in the past that hard season already seems.
"For everything there is a season, and a time for every matter under heaven" ~ Ecclesiastes 3:1
God is the one who ordains each of the seasons of life. Who are we to say when they should begin or end? What right do we have to question which seasons we should have to walk through? As the name of our blog clearly states, we know that God is the one authoring this story - it is His story. We are simply the ones journeying along the path He has laid out. And we are the ones who must decide how we will respond to each season. Will we respond with joy, despite difficult circumstances? Or will we whine and complain about how these hard seasons aren't fair? Only one of these choices will bring God the most glory.
Let me encourage you to find joy in ALL things.
Just like Samuel David!
Samuel reminds us every day that, you may not be able to change your circumstances, but you can choose to change your attitude!
We pray every day that God will continue to fill our our sweet boy with joy 💙
- Pray that Samuel will continue to remain healthy all through these winter months! The past 2 weeks Seth and I have been battling sickness ourselves, but fortunately not at the same time. If you wake up with even the slightest hint of sniffles, then its a mask day for you and no touching Samuel - which is unbelievably hard...This puts a large workload on the other person, with drawing up and giving meds, respiratory treatments, suctioning, maintenance of his equipment, washing his daily supplies, responding to alarms, prepping his feeds, diaper duty, and keeping him entertained.
- Pray that God will grant us the necessary strength and endurance to get through this critical time for Samuel. Right now he has to have eyes on him at all times, 24/7, which is exhausting. We are thankful to have some home nursing help, but there are a couple nights a week where we do not have a nurse and have to take shifts staying awake to sit by Samuel's bedside.
- Pray that we will have wisdom as we care for Samuel. We had one scary event since being home, where Samuel's sats dropped really low and he was turning blue. We had to go through our entire list of emergency procedures before Samuel finally responded, and we almost had to call an ambulance. He had to stay on oxygen for 24 hours, and his doctors assumed this was just the beginning of him getting sick. But 24 hours later we were finally successful in weaning him back off oxygen, and his viral panel was negative! He has been doing great ever since!
- Pray that we will have wisdom and discernment as we communicate with doctors and try to find the right ones for Samuel's care. The fact that we have 3 different locations spread out across the country where we are having to try to get doctors to collaborate just complicates things. There are days where I think it would be easier to move back to Delaware until Samuel is more stable...we're hoping that doesn't have to happen. But right now we are still searching for doctors that are willing to collaborate with the specialized team in Delaware, and it has been stressful.
- Samuel is having a lot of GI concerns. His electrolytes are still dropping lower, requiring increasing amounts of supplements, his stools are abnormal, he struggles with reflux, and he has a lot of gas that we have to vent out of his stomach multiple times a day. We don't know which of these things might be due to the fact that part of his intestines were removed, and we still have not been able to see a GI doctor since being home. Please pray that we will be able to get Samuel in to see GI soon, and that they will be able to figure out these issues. For now, I went off dairy not long after getting home to see if that would help. But so far it doesn't seem to have improved much.
- Samuel has remained healthy!
- We have been home for over 7 weeks without being readmitted!
- God has provided a few wonderful home health nurses that help to take away some of the craziness from our plate!
- Although Samuel is still very much dependent on the ventilator, we see some signs that his lungs are definitely improving!
- Samuel has been thriving since coming home! The last 2 months in the hospital his weight had pretty much stayed the same, but since coming home he has gained just over a pound in the last 7 weeks! Which may not sound like a lot, but for him that's huge! As of last night, Samuel is now 13 pounds, 12 ounces!
- Samuel is also thriving in development! He is so curious and loves when we walk him around the house. We are thankful we have a cart to hold all of his equipment so we can more easily move him! His head control and sitting have improved so much, and he is close to sitting unassisted! He has a tooth that just started poking through in the last couple of days. He is tolerating tummy time a little bit more...although that is still a struggle. And he has started figuring out some mouth noises! Which is so fun to hear him make some noises, even though we can't hear his voice.
This is His Story, and it is all for His glory!