Many things have happened since the last post two months ago (wow – sorry!). The most important of which: Terran turned ONE YEAR OLD!! It’s not an accurate time measurement. The first year is a time bend. He’s been here one month and he’s been here all my life at the same time.The other things…

We loaded Terran in the car Monday morning to head for his scheduled clinic visit. He seemed a little extra tired, but he had just been napping so that wasn’t anything alarming. By the time we were in the clinic room, we knew something was up. We asked the nurse to recheck his temperature a…

There have been some hiccups over the past few weeks, but overall we’re in a good place. With Terran laughing and smiling as much as he does these days, it’s hard to be anything but optimistic! We just have to remember it’s a long road we’re on. Last time I wrote we were gearing up…

Apologies for such a long time since the last post – but ultimately no news is good news around here! There have been ups & downs, but mostly we are heading in a positive direction. Terran is showing his third tooth, starting to eat solids, drinks water from a cup (with mama’s help), is riding…

Terran got to keep his central line!! The doc was on the fence about waiting another day for a negative blood culture because it had taken so long to get him to a “therapeutic” antibiotic level (the point at which the dosage is high enough to kill the bacteria). Since it wouldn’t harm him to…

Terran got his first fever Wed night. Our thermometers (forehead and rectal) were bouncing all over the place giving us readings from 98 to 101, with no consistency. We settled on 100.8 as his most accurate reading. After calling the hospital twice, we were assured that the threshold was 101 to bring him in and…

Quick update on Terran’s recent central line surgery: Everything went well and we’re all home now. The surgeon was unable to use the same path (subclavian vein) but successfully inserted a line through the jugular vein. That was the path the original surgeon tried to use, so really his current line is in a more…

I planned to write a post about how much we enjoyed time with family over Christmas. Terran’s first Christmas included Nana dressing up as Santa, snowfall on Christmas Eve that stayed through the New Year, and a week in Bellingham with Grammy and Grampy. So many friends and family members doted on Terran (and Mama…

Thanksgiving was going so well! We completed a solid dressing change early in the day, we were able to cook both our dinner contributions in time, and Walker’s outdoor waterproofing at Nana’s was so good we stayed outside all dinner long. Family members got to meet Terran for the first time and he was calm…

We accidentally crossed the line into dehydration.. just barely, but his electrolyte levels did drop slightly and so we immediately changed our strategy with the g tube. It was always going to be a trial and error thing.. and we may have gotten over excited with the whole breastfeeding thing.. but we have it under…

So this is what it’s like to have a happy baby!! Walker and I nearly cried the first time Terran looked up after a true breastfeeding – smiling from ear to ear! We’re in an entirely new chapter now. But I’m getting ahead of myself! Rewind to last week… Oct 27 – Terran gets an…

Some very exciting news – Terran’s G-tube surgery date was moved up from Dec 2 to Oct 28!! It’s a Halloween miracle! 🎃 👻 We’ll stay at the hospital one night, learn how to care for and operate the G-tube, wait a couple days for healing, and then start using it. Then we’ll be free…

Terran’s massive vomits continue and his bowel movements are unpredictable… we got to a point where he was pooping once a day for a week, but now he hasn’t had anything material for a couple days. Even still, his bottom has never been as “active” as it should – kids like Terran are typically on…

We had our first outpatient visit at Seattle Children’s this past week. We discussed his daily projectile vomiting, weekly “real” poops surrounded by daily “smears”, childcare and immunization schedule advice, and growth. Turns out Terran is the youngest current member of the LIFT group and one of the youngest ever as most babies are 8-9…

We were released from the hospital around 7pm Tuesday, after our first TPN change on Terran to his home machines. We had been running through the steps in our heads all day, which made us extra prepared when the big moment finally came. The home care nurses watched us + came to watch the first…

I hope I’m not jinxing our discharge by writing this… I’m just so excited! We get to go home TOMORROW! Terran will have been in the hospital for 6 WEEKS. He’s never known fresh air, Moxie dog, our home… really anything outside of a hospital setting. I brought in sunflowers the other day and was…

Terran is still at 1 ml feeds but that’s ok. He’s taking them well when kept upright and burped/held for at least 45 minutes afterwards. I’ll hold that boy all day if it means he gets breastmilk. An occupational therapist came to see us and made Terran a “wedge” to sleep on. It’s a way…

Terran’s Broviac central line surgery was a success (hooray!). The only hiccup was it’s now accessed via the subclavian vein instead of the jugular. Achieves the same result. The surgeon was having trouble threading the catheter through the jugular but an ultrasound afterwards confirmed his veins are all a-ok so no worries about using it…

Terran moved to Seattle Children’s Hospital (in style!) on Thursday. We hung out at Swedish all day until his AMR arrived in the evening. Boy was he hooked up! The transport team was amazing (driver, parametric, and respiratory). Terran’s nurse and I made sure he was comfortable and happy before they loaded him into an…

Turning a corner… at full speed. That’s what it felt like when I got the news this morning that Terran would be transferring to Seattle Children’s Hospital tomorrow. Yesterday we were still waiting on a date and everyone thought it would be at least a week, maybe two. Terran just got his replogle taken out…

Today is Terran’s due date! He’s full term! Seems like an appropriate day for some good news. The doctor that did Terran’s surgery got back from vacation today (they practice as a trio- all are great, but I particularly like her). She told me that Terran has technically passed her surgical recovery markers: 1) the contrast…

Sooooo there will be setbacks. I should expect that. Terran’s replogle went back in today. I felt my first mama-infuriation this morning when I saw it because we weren’t warned this was a possibility. It’s so irritating to Terran and we were so excited to be past it that it was a serious shock to see it…

We didn’t start the feeding program today, but there were some wins. First- why we’re waiting to start the feeding program: the surgeon was happy to see the contrast move all the way through. However, he was less excited to see contrast remain in the stomach for so long. What that shows is a) the plumbing…

Amazing item #1:  Seeing Terran without a replogle was even better than I expected. The care team removed it before I got in and said he was visibly relieved and went right to sleep. It was important for a while- he would get irritated when the bile would build up and needed a nurse to…

The doctors originally set expectations of a month+ until Terran is ready to start the feeding program, but he’s making moves faster than anyone predicted!  Over the past couple days his replogle (the tube that’s been sucking up his stomach contents- primarily backed up bile) has cleared from a dark green to a light yellow…

Terran slept a straight 7 hours overnight! Made possible by TPN (Total Parenteral Nutrition). Terran doesn’t need to be woken up every 2-4 hours to feed like an average newborn because he’s getting his nutrition through IV 24/7.  +1 for the silver linings list.  We cuddled swaddle style and skin to skin. In between, we…

Terran was smirking when I got in this morning. He was just laying there, sleeping, and smirking. This was the first time I’ve legitimately seen him smile. We just snuggled and sang and smiled at each other all day long. His personality is shines a little brighter every day. I’m sorry for those of you…

I brought in cookies for the nurses to celebrate. It’s hard to describe how amazing they are. Each one has a slightly different way of doing things, and we learn something new from each one. Of course it’d be better to not have to be in the NICU at all, but while we’re here, might…

This is a big deal! Terran can’t start his feeding program with Mama’s breastmilk until he checks a few boxes – one of which is a poop. Unfortunately, this poop was meconium and therefore probably came from the lower part of the intestines so it doesn’t “count”. Well I’m still excited about it. Terran’s checklist…

It was so nice staying in our own house last night, not to mention seeing Moxie dog finally! (Thank you, Nana for taking care of her.) She’s happy to be home but sad Terran isn’t with us. Moxie’s roll as Big Sister will have to wait a little longer… After a year and a half…

It was so hard watching him on that.. The doctors wanted to control his breathing after surgery because he was still riding the anesthesia which can encourage poor (or no) breathing. Since they couldn’t force air into him without risking blowing the surgical stitching, they kept him on the ventilator for longer – cautious that…

6:10am:  Terran Mercury Stambaugh Smith is born! He comes out crying and Mom, Dad, and Grammy are ecstatic!! The care team is quick to relieve his swollen belly by helping him to the care bed where he immediately expels a good amount of bile before the nurses suction another cup out of him. Terran is…