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

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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Scriptures for the High-Risk Pregnancy

5 Scriptures that Give Peace During a High-Risk Pregnancy @ AuthenticVirtue.com

5 Scriptures that Give Peace During a High-Risk Pregnancy @ AuthenticVirtue.com

Across my medieval hospital desk I have index cards with various Scriptures written across them. I intended these to be read to me while I labored and birthed Uriah in our cozy home, with Dalton next to me, and a trusty midwife helping us along.

Now, the verses bring comfort in another way. My water has been ruptured for 19 days now and this is our 18th in the hospital (with 8 weeks to go, Lord willing!). There have been days when these verses were constantly being browsed over; during the first week especially I needed reminders of God’s goodness, control, and love.

Below are 5 verses which seem to always be finding their way from the plastic, gray drawer and across the fake wooden top of the desk. These are the top 5 verses I have found comfort in during our high-risk pregnancy.

“Because of his strength will I wait upon thee: for God is my defense.” Psalm 59:9

I love this verse; the whole chapter is of David spilling out his woes, fears, and impressions of his enemies, yet, in the end he determines that he will wait on God because He is his defense. Realistically, I don’t have enemies; I’m not being hunted by villains or persecuted by crooked family. But I do have enemies of the heart: fear, doubt, and faithlessness constantly harassing me. Simple, ordinary fears pummel high-risk pregnancy (fear of labor, fear of the unknown medical questions, fear of the worst case scenario). Because the strength of my enemies I will wait on You, LORD God, because You are my defense and so much stronger than the strongest foe I face. 

“For God hath not given us the spirit of fear; but of power, love, and a sound mind.” 2 Timothy 1:7

I know that 10 weeks of bed rest is the perfect time to bond with my little, rest, and prepare for the upcoming labor and life to follow. But it is so easy to let the days be consumed with the spirit of fear! I love that God has not only not given us fear but He has given us power, love, and a sound, controlled mind. As Christians, we can literally say to our mental minds, “Is this thought powered by fear? Because, if so, it is not of God and it no longer needs my attention.” We can confidently enjoy God’s gifts of power, love, and a sound mind; we don’t need to be a doormat to fear-filled thoughts.

“And Adam knew Eve his wife; and she conceived, and bare Cain, and said, I have gotten a man [with help] from the LORD.” Genesis 4:1 

I love this verse because it is simply so simple. The very first birth of the entire world was followed by words spoken by a woman who had never before experienced labor, never talked with a doctor, and never even heard the term “breech position.”

And at the end of her experience she said simply, “I have gotten a man from the Lord.” By His kindness, by His great creativeness, by His power, and by His help, she received a man-child.

And guess what, sweet, preggo person? So have you. It’s the very same Lord Who walked with Adam and Eve, Who gave them a child, and Who helped her through labor that is giving you your child.

During my high-risk bed rest, labor and pain, and all the unknown days ahead I want to remember, “I have gotten a man [with help] from the LORD.”

“I will hope continually, and will yet praise thee more and more. My mouth will show forth Thy righteousness and Thy salvation all the day; for I know not the numbers thereof. I will go in the strength of the LORD God: I will make mention of Thy righteousness, even of Thine only. ” Psalm 71:14, 16

This has been one of my go-to verses from the moment we discovered Uriah may have health issues. And once I was admitted to the hospital for an early membrane rupture I again turned to this verse (I was actually repeating it to myself as we drove to the hospital).

Why? Because it gives me purpose. I will hope continually (as in I will keep on hoping when hope seems ridiculous). I will praise You more and more (because You Lord are worthy of praise even in what looks like our tragedy). I will speak of Your righteousness and salvation all day (because these are the only things worth speaking of and there are people in this hospital Who need to know you and the numbers of them are unknowable!). I will go (to bed when I feel restless, to the ultrasound when I don’t want to hear bad news, to get another heparin shot …) in the strength of the LORD. I will make mention of Your righteousness only (because it is this righteousness which makes our lives worth living).

See how deep, how real, and how applicable these words are? They’re life-giving and doable and beautiful.

“All the paths of the LORD are mercy and truth unto such as keep His covenant and His testimonies.” Psalm 25:10

Finally, a last reminder of God’s amazing purpose and kindness in our perfectly imperfect pregnancy. From a human standpoint our pregnancy has looked riddled with “mistakes.” A misdiagnosed miscarriage, a 20 week diagnosis of Hydrocephalus, an early rupture at 24 weeks with a following discovery of Lobar Holoprosensephaly, topped with 10 weeks of hospitalized bed rest and countless unknowns until our little miracle makes his appearance.

From a human viewpoint, it looks bad.

But, sweet people, it is anything but. All the paths of the LORD are mercy and truth. All of them. From the moment Uriah Lee was conceived, fashioned in the image of God, and formed with the Creator’s own hands, his path has been covered with God’s mercy and truth.

This isn’t a mistake. This isn’t an oversight. This isn’t a punishment. This isn’t bad. This isn’t the end of the world. This isn’t something to change or even wish away.

This is a path God has given us and it is filled with mercy and truth. Every day is filled with His grace. Every moment I spend in the hospital is overflowing with His goodness. Every hour Uriah remains in my womb is a gift. And every day following his birth, whether hard or easy, healed or disabled, is full of mercy and truth and graciously given by God.

And it’s the same for you, preggo Momma. I don’t know what sort of pregnancy you’re experiencing. I’m not sure if you’ve been labeled high-risk or are experiencing some trauma.

But, God’s Word is true. And every path He lets His people walk … you can guarantee it’s covered with mercy and truth.

What Scriptures brought you comfort during a hard season of your life? Share with us below in the comments — I love hearing from you! 

Love, blessings, and coffee,

Frannie

Hospital Adventure: Week 25 and a New Diagnosis

Join us for our hospital adventure with baby Uriah @ AuthenticVirtue.com Hello, sweet readers! I realized that I shared our latest hospital update with my Facebook friends but forgot you lovely souls. We met with the doctor on Monday and got a little more info on what they think is going on.

Uriah does still have Hydrocephalus (fluid on the brain) pretty significantly but they think it has been caused by him having Lobar Holoprosencephaly (where his upper front brain didn’t divide as it should).

Now, the good thing is that the “Lobar” version is the most mild version of Holoprocsencephaly.

We will not know what the outcome will be because there are so many factors with both Hydrocephalus and the Lobar Holoprosencephaly. Many kids can develop normally, some have medium learning disabilities, and some can be far worse.

But the good news is that it they think it is the “Lobar” level (the mildest version) and his other organs look good.

So, some very possible things we will have to deal with are: intellectual and mental delays or disabilities, seizures, disabilities with his motor functions (muscle control and such), possible optic problems (his sight), and he will still need a shunt placed to drain the fluid.

But, even though those may sound bad, this was good for us to hear! It will be hard but we can work with Uriah on these issues. He may never be a “level 10” intellectually (or he totally could be!) but that doesn’t mean he has to be a “level 0.” We are both dedicated to helping him grow through these things even if they take much longer for him than for other kids. We can help him by being hands-on, getting him therapy, and working with his muscles.

At least we know that he has a good chance for survival and has the mildest form of the “Lobar” level.

Plus, its been 10 days since my water broke and no contractions or labor so I’m cleared for wheel chair rides, eating lunch in the cafeteria, and going outside. 🙂 The doctor feels I have a good chance of carrying Uriah to the 34 week mark (although things can always change especially if I were to get an infection). Dalton’s already wheeled me outside into the sun and around the cafeteria (he’s still the best).

That’s our latest news. To some people this could sound bad but we actually feel hopeful again. Thank you all for your love, prayers, and support. We SO appreciate you!

Love, blessings, and coffee,

Frannie