It’s an interesting thing being a first time mom. Even more interesting is learning how to care for your first child in the confines of NICU walls. Between the breathing tubes, alarms, flashing lights, and wires there is a beautiful, tiny, precious soul yearning for your love, care, and touch.
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!
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,
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) 😉 ,
Good morning, sweet people. Thank you for all of the comments, emails, prayers, and encouragement you have poured on our family. Today, Uriah is 11 days old!! What an amazing thing it is to have a son!
Currently, he is still recovering from his TE Fistula surgery. It was harder on him than the doctors predicted and his blood work is showing a drop in platelets; he had a blood transfusion this morning. They’re also treating him for pneumonia and infection although it is still unclear if his little body actually has an infection or is just recovering from the stress of surgery or a combination of both. He is still dependent on the ventilator and we’re unsure if that is due to the possible infection, swelling from surgery, or the effects of the sedation and medication they have him on as he heals. (Although he is breathing on his own! It’s just that his breathing isn’t as effective as it needs to be … but we’re getting there!)
When I think of all the pokes, prods, and discomfort my sweet boy endures every day I want to weep! He is such a brave soul and contented baby; technically, he should still be growing in my tummy at 34 weeks but here he is! And even though we couldn’t hear him if he did cry (the ventilator blocks his vocal cords) he only grimaces when he is uncomfortable … not even one cry yet! (Dalton says he must have inherited my sunny disposition). 🙂
Some specific prayer requests are:
- That Uriah heals fully from his TE Fistula surgery (esophagus/trachea)
- That swelling would go down (which would help him come off the ventilator)
- That any infection would be defeated
- That his shunt surgery (next week?) would go well
Our lives are starting to find a new normal. We were so blessed and excited to be able to move into one of the Ronald McDonald Houses; we have a comfy room with three twin beds (ha!). We’ve pushed two of the beds together and are using the third for a table. I’ve got to say, after 65 days in a hospital bed and couch we are loving sleeping side by side in the softest mattress ever.
Our days typically involve me getting up at 5 in the morning to pump, Dalton delivers the milk to our mini fridge in the (big, beautiful!) kitchen, and then I head to the dining room, make coffee, and spend some quiet time reading, praying, and catching up on bills and paperwork. I’ll normally make breakfast (it’s fun to be able to do things again after bed rest!) and then we head to the hospital around 7:30 or so to make the doctor’s rounds. (I love hearing their plans, catching up with their ideas, and having a moment to ask questions).
Then we begin the cycle of visiting with Uriah — stroking his head, holding his feet, talking to him, watching him sleep, visiting with his nurse, wiping his little mouth, and reading to him. The day typically moves on to pumping time, visiting time, lunch time, pumping time, visiting time, pumping time, and occasionally we’ll squeeze an afternoon walk in there to refresh and relax. Then it’s visiting time and eventually we head home. Leaving is the hardest so I make sure I hover over Uriah and speak words of peace and promise over him.
We’ve been here just over a week and have decided that it would be fun and relaxing to add a date night back into our lives and also one morning a week where one of us goes to the hospital first while the other sleeps in and then we switch. That way we both can get some good quiet time and one-on-one time with Uriah.
Overall, I’ve got to say that we are really blessed. This journey is hard but it also full of joy.
There is joy in seeing Uriah’ beautiful, pink skin every morning. Joy in his opening his eyes and wiggling his eyebrows as he tries to focus on the things around him. Happiness in kissing his hand. And so much love in watching him simply be … he simply is the cutest baby around! 😉
There is joy in watching Dalton place his big hands around his child and speak softly to him. Joy in watching Uriah wake up to the sound of Daddy’s voice.
There is joy in being with Dalton during this hard time. It is fun bonding with my husband post pregnancy, post bed rest, post c-section recovery. I’m no longer wheel chair dependent and I can walk without much pain at all. 🙂
There is joy in the Lord. Over the last several months He has shown me how good, attentive, and caring He really is. I’ve learned that God really does answer prayer. I’ve seen countless good things come to us: we didn’t have a miscarriage, I didn’t go into labor when my water broke, I didn’t get an infection, Uriah grew for 64 days in low fluid levels, my placenta did not tear entirely, I got the c-section I wanted (due to the Hydrocephalus) but I also labored for several hours (days?) which was a good experience (haha! painful but good!), Uriah did finally breath after 8 minutes (and he had oxygen the entire time), we transferred to a better hospital, his diagnoses has been changed, Uriah’s TE Fistula surgery went better than expected, and soon he will be getting a shunt.
We are blessed and God deserves all the glory for the work He has done in our lives.
This is a super long post but I there is so much to say! Overall, there is joy in all of the crazy, exhausting details because this is the child we prayed for and he is utterly, entirely, delightfully perfect and wonderful. We are so blessed.
With much love, blessings, and coffee,
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,