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!) 😀 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. 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 🙂
  • 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,

Frannie 

Songs for the Christian Mom in the NICU

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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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Baby Update: 37 Days Old and Growing!

 

Hello, sweet people!

Uriah is now 37 days old! What a beautiful thing it has been to have him in our lives! There have been several exciting blessings over the last few weeks and I’ll share them below!

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Here I am holding Uriah for the first time when he was 3 weeks old. What a special, delightful moment. So special!

Here we are at 28 days old when Uriah got his breathing tube out! This was a glorious day! Just the day before I had asked the doctor for a best case scenario of when the tube would come out and she had replied a week. The next morning we walked in to him being extubated! 😀 Since then I have heard him make lots of grunts and squeaks and one cry (he couldn’t make sounds while intubated). (Isn’t this picture adorable! He makes the cutest face when he looks at us! His forehead wrinkles are to die for!)

Uriah celebrated his first Christmas wearing clothes for the very first time! How stylish! 😉

Eyes wide open! We love it when our little boy is wake; he’s so fun! He is starting to wake up before meal times and occasionally sucks on his hand and thumb! He is eating 68 mils every three hours! Woohoo!!

Some other exciting news:

  • Uriah is no longer intubated or on CPAP; his breathing support is simply a flowing, humidified oxygen which is being weaned as he is able to tolerate it
  • He is holding his own temperature and may be moved to a real crib soon!
  • A speech therapist has begun meeting Uriah as we begin “swallow therapy.” Right now he gets all of his meals through an NG tube but we dip a paci into milk and let him practice sucking (which he seems to really like!). We hope to get a swallow study done this week which will tell us how well he is able to suck, swallow, and breath.
  • Uriah is more active than ever! This is day 5 or 6 of being totally morphine free (required for his surgeries) and we really think he enjoys not being sedated. And we sure love watching him move, stretch, and interact more often!
  • Last week, Uriah had a pretty serious blood acid issue which mystified the doctors. He wasn’t responding to a large dose of medicine they had given him to correct the high levels which led the doctors to believe he had a metabolic disorder; ultrasounds were taken of his kidneys and liver while genetics were requested. Yet, none of the specialists could find a reason for him to be referred to them; his kidneys and liver did not seem to be involved and the geneticist felt he didn’t have the right symptoms for a gene issue. The high dose of ineffective medicine upset his tummy and led to him being dehydrated so a new medicine was chosen. We thank the Lord that he began to show improvement and now his levels have remained normal for the last 3 days! We still do not know what caused the issue but we are blessed it has disappeared!
  • Uriah has the sweetest personality! He is so content, patient, interested, and sweet. He rarely cries even during hard things like heel pricks for blood draws. He works really hard at focusing on our faces and lifts his eyebrows when he is interested in something.
  • Our little 5 weeker (who should technically still be in my tummy at 38 weeks!) is now 6 pounds and a few ounces.
  • Uriah’s shunt seems to be working really well. The incision site has healed nicely and his head has stabilized, not loosing fluid too fast or too slow.

Thank you for all of the love, prayers, and sweet words you have sent to us! We are blessed and loved. God is so good!

I want to start blogging again but, to be honest, I have no idea what to write. I feel like I’m still in survival mode and all I can think about is Uriah, snuggling with Dalton, being with my family, going home, and coffee. Oh, and sweets. I’ve got a huge addiction to sweets I’m trying to master. And also Netflix. I’m sort of addicted to Call the Midwives and Lost again. I keep feeling like I have to figure out who I am … I’m a mom now but I’m not able to do all the mommy stuff one would normally do. I’m not busy changing diapers and breastfeeding; I have to wait to do all of that. I’m too tired to think spiritual thoughts other than mere whispers to the Lord. I haven’t made a homemade dinner in ages and haven’t been home since my water broke in September. Maybe I’m going through my mid-life crisis as I am turning 27 in a few weeks and am realizing that I am closer to 30 than 20. The beautiful thing is that it’s okay that I am changing; I just need to be able to go with the flow. 😉

Anyway, I love and appreciate each of you. Thank you for following our journey and blessing us along the way. God is a good, good Father and we have seen Him work so much good in our lives through this difficult time.

Love, blessings, and coffee,

Frannie

Resting after Surgery // Our NICU Journey

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It’s a quiet, early morning at our Ronald McDonald House. I’ve found my way into the large kitchen and brewed a pot of hot coffee. This is my quiet time to reflect on all that life has involved. I’m sitting by the lumpy, lit Christmas tree reading Psalms 9 by the twinkling lights.

We’ve made it. Uriah is 19 days old today and it feels like we’ve made it. His shunt, meant to drain the build up of cerebral fluid, was successfully placed yesterday afternoon and already his head has decreased in size by .9 . I’ve been told that children who are old enough to speak often say their heads feel better the day of surgery. I imagine Uriah may be feeling some of the benefits of the decreased pressure. (This makes my mommy-heart want to weep with joy!)

We’ve made it. We’ve walked through premature rupture of membranes, bed rest, infection, a placental tear, and a labor/c-section that wasn’t typical. We’ve made it through 19 days of intubation, iv lines, a TE Fistula surgery, a newly placed NG feeding tube, and now, finally, the shunt placement.

And all I want to do in my quiet, coffee-filled, Christmas tree lit spare moment is cry and laugh and sing and cry some more.

God has been amazingly, wonderfully here and good. “I will praise thee, O LORD, with my whole heart; I will show forth all thy marvelous works. I will be glad and rejoice in thee; I will sing praise unto thy name, O thou most High. When my enemies are turned back, they shall fall and perish at they presence. For thou hast maintained my right and my cause …” Psalms 9 

We still have a journey ahead of us. Shunts fail and get infected; they need to be replaced and sometimes frequently. Uriah’s still recovering from pneumonia-like illness and his little right lung is still healing from being mucous-filled and occasionally collapses. We have no idea what amount of damage was caused by the pressure build-up and we have no idea how much his brain will “fluff”.” (Although we have very high hopes and have been given a good prognosis). And along with the recovery from the CF build-up our little one may face difficulties reaching milestones since he was born early.

But all of that can wait. All of those unknowns can be faced one step at a time. Because today our little boy has less pressure in his head than ever before. Today, our little one has conquered his last foreseen surgery (although realistically there may be more). But for today, we’ve made it. Today we get to focus purely on recovery and growth and feedings and milestones and being weaned from the ventilator. Today, the sun is shining brighter than it has all week and my heart feels lighter than it has in a long while.

Thank You, Father, for caring for us. Thank You for giving us such a brave, strong, sweet little boy. Thank You for his Hydrocephalus and for his pneumonia and for his TE Fistula. They are things I wish I could take away and never make him face but they are things You have been Victor and Healer in and You are wise in all that You send to us. Thank You for caring for us through other people; thank You for the financial gifts, encouraging cards, and sweet messages and visits you’ve sent us through friends and family and strangers. We have never been without and we have never seen You fail and I trust You in this journey.  

What journey are you facing today? Are you at the beginning, middle, or end? Have you seen God carry you through or are you in a waiting phase? Comment below — I’d love to be able to pray for you.

Love, blessings, and coffee (and a chocolate cupcake) 😉 ,

Frannie

8 Days Old and So Adorable

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We’re pretty crazy about this Uriah Boy. He’s such a special addition to our family and I am in awe at the gift God has given! (Aren’t these pictures so fun!? Someone sweet took them and left them by Uriah’s bed; they’re so much better than my phone pictures!)

Uriah’s TE Fistula surgery went well yesterday. It was a tense day for Mommy as the surgery was considered high risk due to his breathing patterns and young age. But God carried us through! The surgeon was very pleased with the results and we’re hoping that after a few tests are down (to make sure there are no leaks) that Uriah will be finally able to eat real food! (He’s been on a nutritional IV formula so far).

I’m excited because his recovery means we are taking steps to getting rid of the ventilator. I’m thankful for the extra help but the plastic tubes naturally make mucus which can cause breathing problems!

We are extra thankful because Uriah’s blood tests are have been improving. His CO2 levels after the surgery were dangerously high and have taken several hours to lower. But today they appeared much better! He’s also being treated for pneumonia (although it is only a suspicion that he has it) because some of his tummy acid was found in his trachea during the surgery. (This happened because of the TE Fistula). Hopefully, he will avoid a full blown infection!

Today I am thankful because I got to kiss my sweet little boy for the first time! My c-section incision has been healing wonderfully but I haven’t been able to bend. Today I was able to bend forward without pain and it was so sweet being able to kiss my son for the first time. Also, we got into the Ronald McDonald House today! It’s so nice to have a permanent place to call home till Uriah is discharged (we’re hoping around his original due date in January).

Tomorrow I plan to spend the day reading books to Uriah. He’s still pretty sleepy from his surgery but that doesn’t matter! It will still be special to read and let him hear my voice.

Thank you all for your prayers. We SO appreciate them!! God is carrying all of us through — Thank You, LORD, for being such a good Savior and Maker!!

Love, blessings, and coffee,

Frannie