Parenting is Hard and Holy Work

We’ve officially been home from the NICU for 74 days. Having Uriah safe and in our own little nest has been more exciting and more fun than ever expected. I love having him to kiss and hold and read to at any moment of the day. I love watching his developing milestones take place on my own living room floor. And I adore the moments I catch him smiling because he’s happy in his home.

But motherhood is a lot more than I ever thought it would be. About once a week I find myself having a mini-anxiety session where I ponder the question all mothers do … am I doing enough? On top of that, I fancy having a child who requires special cares multiplies our fear that we are failing our little people.

Eventually, that worry snowballs into a once a month cry-fest where I turn to my husband’s strong chest and sob tears that have to come out. Stuttering cries fill our small bedroom because what if Uriah doesn’t develop properly because of me? Because, as all special need parents know, playtime isn’t just playtime any more; it’s physical and occupational therapy. Eating isn’t about getting your baby to latch or getting them to like all their food groups; it’s about watching for silent aspiration and pneumonia. And every time you run out of the house for thirty seconds to drop the garbage into the bin you run back in because what if your baby’s ventilator disconnected from the trach. It’s rereading the Resuscitation Instructions once a week so you’re as prepared as possible for something to go wrong with your medically complex child. It’s greedily counting the medical supplies shipped to your home once a month and then going to the store to buy all the regular things your ordinary yet not so ordinary baby needs.

It’s so much and sometimes I feel like I don’t measure up.

Mom, if you ever feel this way, I know. I feel all the feels with you. Parenting is responsibility. And special cares or not, it is hard.

The beautiful thing is that this hard thing we’re doing? It’s a God thing. Children are gifts from God; they’re not add-ons to your already full life. They’re not the next step in life. And they are never mistakes. God’s Word makes it clear that our babies are fearfully and wonderfully made and rewards. And if God is in it it is holy. And all that hardness? It’s meant to make you more holy.

So, that baby who is fussing, or that toddler who is out of control, or that teenager who lives a busy and sometimes wildly confusing life, they’re all God things. (He’s also there for all the one’s taking care of an ailing spouse or family member.) It’s holy, hard work but that means God will be in it.

I cannot tell you the times I have seen God come in an lift my weary heart. He did it from the very beginning, during my misdiagnosed miscarriage, through the very scary first trimester, when my water broke at 24 weeks, during my 63 days on hospitalized bed rest, and during the 7 months Uriah lived in the NICU. God showed up and personally walked us through the hardest season we have endured.

And He’s here. God is still walking me through the nights when I feel like I simply didn’t measure up. He’s here, ready to bear my burden and give me grace, on the days when I’m afraid I didn’t do enough.

He’s here and He is more than enough.ย 

Sweet friend, I know. I know that this blog post isn’t going to fix the anxiety-filled nights or worried-filled days. I know that you can enter the morning feeling like Wonder Woman and go to bed feeling like a stinking pile of failure.

Despite how you feel, I want to encourage you to embrace the truth — that this hard work you’re doing? God will walk you through it if you let Him. And He will let the hard work be holy work if we let Him work in us.

I’d love to hear about your experiences of parenthood? Tell me your stories! I love hearing from you?ย 

Love, blessings, and coffee,

Frannie

Welcome Home // The End of Our 218 Days in the NICU

Hello, sweet, sweet peoples!

It has been far too long. There’s been a lot going on (not to mention a laptop needing a repair shop). Most wonderfully, we are home! After 63 days of hospitalized bedrest and 218 days in the NICU (281 all together!) the Duncan #partyof3 finally made it home.

We were discharged from St. Louis Children’s Hospital June 26th; we’ve been home a grand total of 42 days. It is absolutely glorious! Forty-two days to begin adjusting to having a baby at home. Forty-two mornings waking up to being in the same house, in our own beds, and forty-two nights of baths, snuggling, and enjoying every moment together at last.

Here are some pictures of our days together! (Click on them for a larger view) ๐Ÿ™‚

We are so thankful to be home. Uriah’s life has been a full adventure and God has been exceedingly good to us! Sometimes, as I rock Uriah to sleep, I ponder the events of the last 10 months. From the moment my water broke at 24 weeks (and even beyond that!) all the way to Uriah being born and having multiple surgeries, close calls, and the difficulties living 2 hours way from home God has been present, loving us and preparing us every step of the way.

There is still a lot of growth and development we are working on but Uriah is making amazing progress! He just weaned off his oxygen (woohoo!) and we will begin discussing ventilator weans at his next appointment. His g-button has healed nicely and we do weekly tastings of thickened milk; sadly, it’s still not safe for him to eat by mouth (due to silent aspiration) but, Lord willing, we will get there. These things just take time, patience, and hard work. ๐Ÿ™‚ His VP shunt seems to be working perfectly! We had his 6 month shunt anniversary in May; it’s often said that if a shunt lasts 6 months it is a good possibility it will work for quite a time. Below is a comparison of his first MRI (on the far right) taken at birth, to an MRI done after the shunt was placed (middle), and the most current MRI (far left). See the amazing difference in those white areas of the brain? That is the brain’s ventricles shrinking as the brain expands and the excess cerebral fluid drains away. What a blessing!

As far as personality and development Uriah is absolutely wonderful! He has the sweetest, funnest personality ever. He loves to chew on everything, stick his tongue on Mom and Dad when we kiss him, talk around his trach, roll on the floor, play with his toys, and listen to music and Mommy read. He loves snuggling with his bear-bear (a grey, silky bear and blanket) before bed and then he sleeps a full 8 hours (usually). He’s always happy to wake up and start the day — a true beam of sunshine in our lives!

 

Some things we are looking forward to? Starting weekly physical therapy visits! ๐Ÿ™‚ Uriah loves to roll around but before he can start crawling he needs more muscle development in his neck, core, and arms and tummy time plus therapy will really help! We’re also excited for his highchair which should be arriving this week! I can’t wait for him to have a special place to sit with a tray! And, one day, we’ll feel more comfortable taking Uriah on trips so we can go visit our family. That will be exciting!

There’s so much more to share but I’ll hold off till a later day; I can’t wait to begin writing again. Being home is, for me, such a special time and I adore the mundane, daily tasks I get to accomplish. Cooking, baking, decorating, cleaning … it all has a new meaning after being away since last September. ๐Ÿ™‚ I’m sure one day I’ll grow tired of the never-ending tasks but for now I savor them and squeeze them in between the moments of play, snuggling, and work with Uriah.

In the mean time, thank you all for your love, prayers, and friendship. I so appreciate your being patient with my lack of commenting. Our laptop is currently out of commission but once repaired I hope to be back in this community again. Until then!

Love, blessings, and coffee,

Frannie

Catching Up with You // Day 179 in the NICU

Keeping in touch @ AuthenticVirtue.com

Hello, sweet people. Ages have past since the last real update on Uriah; in fact, the last time I shared about our little guy’s progress he was only 3 1/2 months old. Now, he is two days away from 6 months. Let me share with you some of the amazing, hard, wonderful things we’ve been through over the last 5 months!

We have been in the NICU a total of 179 days. We’ve seen our little guy go through SO much and have been amazed by the goodness of God in his life.

Uriah has finally gotten used to his trach. The tracheotomy felt like a last resort but it has ended up being one of the best decisions we could have made. Now that he is no longer on the ventilator and breathing tube Uriah has so much freedom! I’m able to pick him up, play with him, do tummy time and roll around on the floor.

Speaking of tummy time, Uriah loves it! He loves to hold his head up on his own and is beginning to roll over! (Which is a lot for someone with a head in the 99th percentile!) ๐Ÿ˜€ He loves to stroke his hair, suck on his hands, and especially likes to bang his toys as hard as he can.

He’s begun teething and drools without end. The sad thing about having a trach is that it can keep you from using your voice; the doctors had told me not to expect to hear when Uriah cries, coos, or laughs. And while I cannot hear him in those traditional ways I was surprised and thrilled when he began making sounds around his trach. It’s a lot of gurgling breathing sounds but I’m positive he makes most of the noises on purpose — after all, he wants to talk and knows this is the only way he can! This morning I mimicked his gurgles and he got the funniest look on his face … I guess I was speaking his language!

Right now, we are hoping to go home in 6 to 8 weeks. Uriah has still not gotten to eat by mouth because it was discovered that his TE Fistula had reconnected and there was a small leak from his esophagus into his trachea and lungs. He has had two small procedures where they cauterize and place glue over the connection hoping that this will seal up the leak.

Hopefully, he will have a Swallow Study done next week and, if there is no leak, we can begin the process of eating! For a baby who is 6 months old and has never been able to eat by mouth this will be a ginormous task. But, we believe God is incredibly good and kind and that His ultimate will is best. Instead of being anxious over this step we’re finding ways to be thankful that we have even gotten this far!

This is a fun stage to be entering. As we think about going home in the next two months I’ve begun talking with private nursing agencies and had an inspector come to our home to ensure it would meet Uriah’s equipment needs. Sometimes, I am overwhelmed when I think about how different life will be — nighttime nurses in our home, carrying an “army’s worth” of supplies when we leave the home (or even move to a different room), and calling the electric company to put us on the “priority list” in case of a power outage are just a few things to consider.

But then I watch my baby boy play. This is a living, thriving, happy baby who was given so little hope in the beginning. This is the baby who watches me walk around his bed even though we were told he was blind. This is the baby who loves to listen to music even though we were told he was likely deaf. And this is the miracle who is thriving even though we were told there was too much damage to even try the necessary procedure.ย Being Uriah’s mom is a role I absolutely love and it is sweet.

Please keep lifting our family up in prayers as we near the finish of our NICU season. Some specific requests are:

  • For Uriah’s Swallow Study to be successful and the TE Fistula repaired so that we can begin eating by mouth
  • For Uriah to have the drive and want to to eat by mouth
  • For his current case of tracheitis (bacteria in his trach) to be controlled and subdued
  • For his little, upcoming teeth ๐Ÿ™‚
  • For Dalton and I to have renewed joy and strength … I’ll tell ya, being separated most of the week for several months is not fun, not easy, and not enjoyable! But, I have to brag on Dalton! Every week, he finds ways to bless and encourage me. He is always finding ways to bring me refreshment even though he is the one working and alone all week. Thank You, Lord God, for giving me such a man!
  • For God’s will concerning private nursing. We are required to have someone awake with Uriah at all times because of his trach so we are applying for night nursing to help as we can’t be awake all the time and live normal, healthy, thriving lives.

And most importantly, thank you for all the love and prayers you have given us. There are days when I still can’t believe I’m not at home … it feels almost surreal to be away from home this long. But you have made this time not only bearable but time to enjoy, grow, and be blessed in. We thank God for you!

With love, blessings, and coffee,

Frannieย 

Songs for the Christian Mom in the NICU

AuthenticVirtue.com

 

It’s laundry day at the Ronald McDonald House and, while I wait for my load to finish drying, I thought I’d share some of the songs that have inspired, encouraged, and helped me over the last several months when my waters broke at 24 weeks, the 6 weeks of bed rest in hospital, and now on our NICU journey.

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Dealing with Anxiety: Coffee Series

Dealing with Anxiety @ AuthenticVirtue.com

“Why art thou cast down, O my soul? and why are thou disquieted in me? hope thou in God: for I shall yet praise Him for the help of His countenance. O my God, my soul is cast down within me; therefore I will remember Thee from the land of Jordan … the LORD will command His lovingkindness in the daytime, and in the night His song shall be with me, and my prayer unto the God of my life.” Psalm 42:5,6,8

Every once in a while I catch the blues; you know, the Eeyore-like tendency to see the world colored in grey, fearful, and unhappy? And don’t worry, I sometimes felt this way before my time in the hospital.

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