Baby is 37 weeks corrected gestational age.

Read about last week: Week 9!

Day 64: Rockabye Baby

It was a very busy day at home; I didn’t eat or drink properly between all the dropping off, school meetings, dog walks and feeds and vomit cleaning, laundry, etc. I wasn’t going to see Baby Henry today, but… Sometimes I walk around making kissy noises at my phone like an idiot. It’s the baby monitor and his little chubby face. Once I saw him on the hospital camera, nothing could stop me from going to him.

I visited Baby at the hospital in the evening with Jer, who got to help weigh Baby as part of Cares. 5lbs 14oz tonight! “He is acting like a real baby!” Jer said after seeing him so awake and active. 37 weeks is full term.

I got to snuggle skin-to-skin, and Jer held him swaddled while I pumped. I had soaked my hospital gown with milk while holding him. It was the first time I got to rock him now that he’s over 37 weeks old gestational. Before then the movement for them feels like nails on a chalkboard, but now he’s developed enough to enjoy a gentle rocking. He had some periods of de-sat this morning so they decided to wait to wean his Hi-flow.

We think he looks like Fletcher now, but with Walker’s powers of observation and Lily’s hairline.

Day 65: VIP

I noticed sunlight in his live stream this morning and wondered if they had moved him from our dark little corner to somewhere with windows. Henry now has a private room in Nursery C with a view of the duck pond, and it’s so spacious it feels like a VIP room! One of the ladies up front who helps arrange where the babies go gave Henry a nice area and said he’s become a big boy and needs a nice spot. I appreciated that thoughtfulness so much!!

I really struggled with being so very tired today, so I did a night visit again- this time with L. She was over the moon grinning when she held him after I did skin-to-skin with him. He is so beautiful with his giant eyes that search all over the place and studied Sister’s face. She said she could look at him forever, and held him as long as it was allowed. Many of the nurses who have taken care of Henry, especially his Primary nurse, asked about him and wanted to peek in at him. We didn’t get home until after 10pm on a school night, but we had a lot of fun together loving on Henry.

Day 66

Baby’s care times have changed and moved up 1 hour. Arriving earlier will be challenging and mornings are no longer possible while the kids are in school. The new private room has been amazing; I enjoyed the expansive view of Y mountain from the wall of windows.

Baby is 5lbs 15oz now. They weaned him down to level 3 in his Hi-flow respiratory support. I’m very exciting for when he gets down to level 2 and we can try breastfeeding. His head wound is still healing; the metahoney has done wonders. Nurse Kristi said that Baby doesn’t like staying in his crib, and just wants to look at everything and be held. He was fussy being put back after I snuggled him until next Cares time, so she held him in her arms while charting on the computer.

Day 67

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Day 70

Check out more weeks from our NICU journey here.

We wanted to match together for a family Halloween costume this year. They’re lucky we’re doing new costumes at all! Mostly I wanted to make an effort for my sister who’s so excited about her First Halloween here and wanted to dress up with us, so we brainstormed together for ideas. There were enough Pokemon options to choose from that the kids and adults might enjoy, and that they might be able to wear for more than just the day of Halloween. With Baby at the hospital I didn’t have time or energy to make the costumes myself, so we ended up ordering most of the hats online.

I set aside a day to shop and look for stuff for costumes, and it felt so disappointing, and a drain of time and my limited energy. How hard is it to find a pink dress, a blue hoodie, or orange fabric? I had these grand plans of crafting a MagiKarp costume for Jer that would take up his entire torso, but where do I even go for sewing fabric or materials now that Joann’s is out of business? This year’s motto is now, “Make it work with what we have.”

Yes, it would have been so cool to do all the bells and whistles and make things the way we envision them, but I’m learning that “Done is better than Perfect” when in survival mode.

I bought a plain hoodie and beanie, stitched Squirtle’s face on the hat, and he wore his turtle shell from his Ninja Turtle costume. In true Kat fashion, I was stitching F’s Squirtle hat together with only minutes left until the Trunk or Treat party.

My Pokeball costume cost nothing, and I put it together in 15mins. I’m not sure why my greatest creative moments are during times of high stress and time constraints. The pokeball is actually the tag from W’s bulbasaur hat I was about to throw away as I was clearing the sewing table to cut out one by hand!

We definitely had fun together at the Halloween festivities!

Love, Kat

Baby is 36 weeks corrected gestational age.

Read about last week: Week 8!

Day 57: A Big Boy

Jer visited Baby Henry early this morning for skin-to-skin snuggles. He’s breathing well on his 2nd day off of CPAP. Baby likes to sleep with his arms underneath him. He wanted to be held upright. Last night he had some spitting up and throwing up, so maybe being upright helps. Baby smiles regularly now, and it always warms my heart!

I visited late afternoon, and when I walked in Henry was getting a foot massage and loving life with his Nurse Ashley being his “personal binky holder 24/7”! His therapist Sydney recommended hydrotherapy for him once his head wound heals, or some time before he leaves here— I agree he would love it combining 2 of his favorite things- baths and massages!

Baby was wide awake for over an hour, looking around and doing push ups. He is so strong! Nurse Ashley asked him, “Do you even know you’re a baby?? You’re acting like you’re a toddler, such a Big Boy! You’re supposed to be sleeping.” That’s him though, always ahead of his time and trying to grow up so fast.

I think he got too hot on me even uncovered because when I moved him to my arms he was able to fall asleep. He smelled sweet and made me sticky, I found out it was from the Wound Care team changing his treatment to a special honey, which has antibacterial properties and is gentle for sensitive skin.

Nurse Ashley who has had him for the last recent days says she has enjoyed getting to know him- he is so cute and fun, so vocal and likes to share his opinions which is good, likes to be on his tummy and to sleep as high up as he can. I thought he looked like a little king on his throne.

After having a rough day, I am SO happy after seeing my baby

Day 58: Goober

Look at this little goober and the many faces he makes! My favorite picture of baby from today is of his smiling eyes and smiling face. I got a look at his head wound when they changed his bandages and it’s looking so much better. He’ll probably have a bald spot there for a while.

Day 59: Donald

Baby weaned to level 5 on his Hi-flow breathing machine! He’s 5lbs 8oz now, and sounds like Donald Duck when he complains

Day 60: Feeding Tube Frenzy

By the time I arrived, Henry had ripped his feeding tube AND the tape that keeps it on his face 6 times. I picked him up unsupervised for the first time ever, and he calmed immediately. By the end of my visit his tube had to be put back in his mouth for the 9th time. He just pushes it out by bearing down and moving it with his tongue.

His nurse (new to both of us) seemed stretched to her limit; a lot of little things were left undone or chaotically thrown together. She was trying, but I could feel her exasperation with my baby always needing her attention, and it felt like she’d rather not work with us.

You would have never known he had a bath last night, his bed was covered in spit up. The venting tube that holds his regurgitated stomach fluid spilled several times on me from being hurried, where other nurses have been so careful. There were so many messes that the Respiratory Therapist commented on how gross our bedside smelled like tomato soup! I had to talk with the Technicians to request that his bed get wiped down or changed before the normal day because it was so dirty.

During Cares when I was pumping and couldn’t help her, the Nurse used the same gloved hands that changed his dirty diaper to push his feeding tube back in his mouth again without changing gloves! The gloves moved from bum to face without thinking. She absentmindedly put a very dirty burp cloth that had been wiping the floor into his crib with him! The sanitary concerns bothered me so much because the Nurses in this unit are usually very careful especially since Baby has just gotten over an infection. She probably didn’t even realize she did these things. I think both of us were relieved when Henry’s neighbors moved to another part of the NICU and our nurse went with them, turning his care over to someone else.

I talked to the Charge Nurse about my sanitary concerns and that I’d rather not leave him in today’s Nurse’s care again. The CN reassured me that my #1 priority is my baby’s health and safety rather than hurting someone’s feelings, and that regardless the Nurses should never be doing what she was doing with my baby. This is the first time I had to advocate for Baby’s care, and it took a lot out of me because I overthink having these difficult discussions.

Day 61: At Ease

He seems SO much happier today. Nurse Ella who has been with us a lot in Nursery B came back, and both Baby and I were so comfortable with her. I felt at ease and like I could ask for help, including needing to go to the bathroom again while holding Baby.

He didn’t pull his tube at all. Nurse Ella said the Nurse from yesterday actually came over to check how many times Baby had pulled his tube out today expecting it to be high, and was surprised he’s calm and happy. Maybe he was all tuckered out from fighting all day yesterday.

Baby’s wound is getting smaller and looking way better! There’s hope yet that his hair may grow back in that spot haha. Nurse Ella said Baby always sleeps really well after I come do skin to skin with him And that he likes to be “Boss”, doesn’t like being restrained or forced into anything. Sounds like my boy!

Day 62: Lullaby

Baby has been out of the womb for 2 months today! He rips his OG tube out at least once a shift still. Last night he was weaned to level 4 on his Hi-flow breathing machine—progress! He’s gone up in feeding volume so it’s nice that the nurses are accepting my fresh milk again so I don’t have to store and freeze as much of it now, and it can go directly to Baby’s milkshakes.

I have been missing him so much. It’s been so fun to see the many faces he makes, and find the best holding positions for him while we rest together. I sang some of my favorite lullabies and folk songs to him today: Birds and Boats by Gregory and the Hawk, Landslide by Fleetwood Mac, To Make You Feel My Love (Mick McAuley version), Wings of Time by Tame Impala. Also read to him from my book because I heard it was good for him. My favorite thing is kissing his head and holding his hand. I fight the urge to squeeze him so tight.

Day 63

Happy 37 weeks (gestational corrected) today! He is now 5lbs 10oz, growing so much! Here is our baby on elbows with hands by ears looking ready for a newborn photo shoot. I wish I had a pic from my perspective but he looked so peaceful and sweet!

Weaning him from off the diuretics and extra nutrients like folic acid and potassium since his swelling has improved. If he does well they can wean his Hi-flow down to level 3 as soon as tomorrow.

Read about next week: Week 10!

Check out more weeks from our NICU journey here.

Baby is 35 weeks corrected gestational age.

Read about last week: Week 7!

Day 50: Wound Care

I’m so tired, mostly from pumping every 2-3 hours and commuting to Provo every day to visit Baby. We need each other, and I’m trying to see him while I can before someone in our family gets sick. Still holding onto the idea of breast-feeding if I just hang on a bit longer. He’s over 5lbs now, but still on a breathing machine and recovering from an infection and a head wound. Today was the 50th day in the NICU, and I’m realizing he probably won’t be home by his due date.

I arrived just as Wound Care came to check Baby’s head wound discovered yesterday. It looks like a pressure ulcer, which will take 2-6 weeks to heal depending on the cause (still unknown). They’re using a special ointment and bandage to keep it clean.

Baby Henry showed off how strong he is lifting his head, neck, and shoulders while lying on his tummy. One of these days he’s going to crawl out of here. Dr is making small changes to his meds to keep up with Baby’s weight gain: upping his diuretic and electrolytes, and reducing the extra calories from 28 to 26.

Our first skin-to-skin session since his infection was amazing.

Day 51: Quick Visit

Baby is in a different crib today with shorter sides, so it’s easier for me to get in to change his diaper and such. He looked like a little Baby Monk in his cute little blanket. I loved holding him in my arms, and he loved being held. Nurse Monique hasn’t seen him in a few weeks and said he’s now a “chunk!” I love having familiar nurses who make a difference in how comfortable and smooth our visits go. She made sure I had time to pump, kept me in the loop when she needed to step out for lunch, and checked on me just the right amount. I needed good support from our nurse today since I couldn’t stay long if I wanted to see the boys perform at their school’s Fall Dance Festival.

The nurse practitioner wanted to wean him to level 6 CPAP but I had her double check because I thought they only want to wean twice a week?

My sisters asked me how it feels to have 4 kids now, and I told them I don’t feel like I have 4 kids—I feel like I’m living a double life where my one child is in the hospital, and in the other life I have 3 kids at home. The two lives haven’t converged yet.

Day 52: Snuggles

Nurse Monique says that Baby loves snuggling with the weighted hand beanie, and it helps keep his fingers away from the tubes that he likes to pull on.

He is weaning down to a CPAP level of 6 today. They are increasing the protein in his formula to help his head wound heal because it looks the same as yesterday. Wound Care team will look at it on Friday. The antibiotic is actually for 7 days so a couple of more days left. He was very picky about position when we were doing skin to skin, laid himself across my belly and burrowed down near my arm pit.

He’s now 5lbs 6oz! Today’s goals are to sleep, snuggle, grow, abx (antibiotics), be happy, and have stable oxygen.

Day 53: Relaxing

It’s Fall Break, and what a good day we had together! I came to the NICU feeling relaxed. Today Jer gave me a massage, fed me a nice breakfast, took the dog on a walk with me, and I feel like he breathed life back into me. Last night we watched The Brothers Grimm with L, and even though it was scary it was nice to just have a good meal (thanks Nan!), and be entertained by fairy tales. L was scared to be alone in her room, so she slept in our bed cuddling me the whole night; she hasn’t done that since she was little. I didn’t mind!

Baby Henry and I shared some amazing snuggles skin-to-skin. I gave him a baby massage on his neck and arm, and his heart rate went down to 140, which was super relaxed for him. He snoozed peacefully on me and even smiled in his sleep. His goals today are to sleep and grow, and we definitely did that! As Dr Jenn says, “Hurry up and wait!”

Day 54: First Kisses

Jer and I visited Henry today, and were both able to hold him one after the other for the first time. Baby had a lot of stories to tell his Dad, and while he was with me he was wide awake looking around at everything with his gorgeous eyes. We were able to get the cutest pictures of his face so far!

They were changing his head wound bandage when we walked in, and said it looked so much better; I haven’t heard from the Wound Care Team yet.

I’m jealous that Jeremy got to kiss our baby on the head before me. I’ve been holding off so that I don’t accidentally get him sick. Nurse Trudy said that Baby has the same antibodies that I do through my breastmilk, so it would be OK for me to love on him. They recommend the toes and back of the head for kisses.

It seems like Henry is ready to be done with the CPAP; he popped it right off today while Nurse Trudy was doing his Cares. Dr. Jenn weaned him down to level 5 on the CPAP, and if he does well on that for a couple of days he can move off CPAP and on to hi-flow. I’m super excited about that! We’ll be able to see more of his face and he won’t have the cumbersome tubes all over his head.

Day 55: Kidney Check

Since Baby had a UTI they want to make sure his kidneys are developing properly. The kidney ultrasound shows good size and NO hydronephrosis (swelling), but some brightness not indicative of anything right now; will re-check it with another kidney ultrasound before he leaves here.

His feedings are going up to 42mL to match his growth. IV is out now that the antibiotics are done (yay!!), and he can be given Tylenol as needed for pain or to keep him comfortable with that head wound. Wound Care team is coming Monday to check. Swelling in his groin area still and watching his diaper rash. They cleaned his neck rolls a bit since it was getting cheesy; his bath isn’t until tonight. If he’s ready, he can wean on Monday off CPAP to level 6 Hi-flow. Also another eye exam next week.

I was curious and asked Dr about Baby’s chance of going home by his due date. She said there’s a lot to do, but it’s still possible. It will take 3-4 days for him to wean on each of 4 levels of Hi-flow (6 to 2), then when he reaches lo-flow he can try oral feeding (breastfeeding) consistently gaining weight. For many babies the longest hurdle is the respiratory support, and we really can’t say at this point how long it will take for this cutie to be ready to come home.

Day 56: Happy 36 Weeks

Baby turned 36 weeks corrected gestational age today. When I walked in and we unwrapped him for Cares, he had clothes on! Bless the Night Nurse who made my day and let me see my Baby this way. I couldn’t stop myself from kissing his foot.

Doctor asked if we could take him off of CPAP today (1 day early) and put him on a high flow! She thinks not having the CPAP on there will help his head wound heal, and that the level 6 Hi-flow will be similar to the level 5 CPAP as far as respiratory support. We hope he does well.

Read about next week: Week 9!

Check out more weeks from our NICU journey here.

Sometimes I need to “fill my cup” when life gets heavy, and I’ve been able to do that in a few ways. I met up with friends for a hike in the woods around sunset, and that was so healing for my soul. We had General Conference where I felt so much love and inspiration, and a deeper connection with God. Our family has been reading the scriptures and praying together, and I think it helps us and the kids feel closer and more at peace. They have each come to me and told me how thankful they are to read scriptures together. We’ve resolved to find ways to pray always since in our family scripture study Christ has told us to pray always even in our hearts and also aloud and when we’re alone.

I needed this boost of spirituality. Heavy things have weighed on my heart lately. First is the chaos happening close to home. The UVU shooting was only about 10 minutes up the road from the hospital. That day I heard chatter from the nurses about it, and wondered if that was why all levels of the parking lot were full and it took me 20 minutes of driving around to find a spot. There was also a fatal open firing in a church of our faith in Michigan, just hours after the prophet President Nelson died. My family attends a meeting exactly like that one, that could have been our building that had this tragedy and got set on fire. This is the kind of stuff that happens far away from here, not in my world and neighborhood…

My sister was on UVU campus at the time of that shooting, but not at the rally. She’s still mentally recovering from another active shooter incident that happened while she was at work. I want her to love living here, but how can I when it’s no longer safe? I can’t imagine how scary Utah seems now that she has already been through two of these shootings since she moved here at the beginning of the year.

It’s caused some uproar and political upset locally. Billboards went up celebrating this polarizing man who some wanted to rename streets and the university to honor. In a twist of fate, this guy who championed for gun rights and said that a few people’s lives might be sacrificed for the right to bear arms was himself martyred by a gun. I knew nothing of this person before this event, but many of his statements and debates were shocking and disturbing to me. I didn’t think I had enough information to feel one way or another about him, but I felt disappointed seeing the contention, argument, and anger from both sides within my own friends and neighbors.

A dear friend of mine Myrna Graff passed away recently, and I miss her so much. She was our Bishop’s wife in the singles ward that Jer and I both attended in CA. Their home was so inviting for dinner and spiritual firesides. They set a good example of a strong loving marriage. The last time we saw them together was for a wedding after they retired here, and we all celebrated reuniting with so many friends from “back home”. When Bishop Graff passed away we paid our respects at the funeral, and though Myrna was positive and gracious nothing was ever the same.

Myrna developed dementia and I would visit her at the senior care center nearby with flowers or a treat. She loved to show me her pictures and tell me stories of him, but she would tell me how much she missed her eternal companion and the home they built. They had to sell it because she couldn’t live independently anymore, and that upset her greatly to not be in her home. I could see her getting frustrated when she had a thought to express but it wouldn’t pass her lips. Some visits we wouldn’t say anything, and I’d just hold her hand and tell her I love her. I didn’t go to her funeral, I just cried and felt my heart ache. I can’t be too sad- she’s joyful and whole with her sweetheart now.

This in addition to the burnout I’m experiencing in Survival mode. I eat, shower, get dressed- but only because it’s required to see my baby or make food for him. If he didn’t need me to be clean for him or have “three good meals” to make milk, I wouldn’t have the energy to do it. I pray night and day to have strength and get through my ups and downs. I have so much help and support, I’m just trying so hard and it feels like it’s so little but it’s my all.

This is what is getting me through and bringing me hope each day…

Come unto me, all ye that labour and are heavy laden, and I will give you rest⁠.

Take my yoke upon you, and learn of me; for I am meek and lowly in heart⁠: and ye shall find rest unto your souls.

For my yoke is easy⁠, and my burden is light.

Matthew 11:28-30

Love, Kat

Instead of a Trunk or Treat, our ward at church put on a Halloween Party with a potluck, costumes, and games. Since they held it pretty early in the month we didn’t have our official Halloween costumes together yet, so we all chose something else.

The boys wanted to wear the capes from last year and went as Hobbits. L wore her red cape as Red Riding Hood, which she last wore as a tiny little girl. Jer wore his favorite costume I’ve ever made him (a T-Rex hoodie with little arms protruding from the chest that he enjoys animating) which he’s proud to point out that I made in one night. I put on lipstick and wore my blue trench coat, yellow skirt, red headband, white pouffy blouse, and Swedish heels with argyle socks for an outfit resembling Snow White.

I arrived 45 minutes late to find that they had run out of food early on and pizza was on the way. The boys were running around in the field playing with friends. They had saved a dessert plate to come back to later, and apparently were some of the lucky ones to have chili.

L helped with the face painting station, which the little kids all lined up for eagerly. Jer managed the Musical Chairs activity with the help of the young men, and W won the very last round! All participants earned a candy.

I was glad to see many friends and neighbors, and chat for a bit. Everyone asked me about Baby Henry and I did my best to answer questions. The kids danced and played until after dark and didn’t want to leave from having so much fun. Since Jer and I didn’t get to eat, we went out for a dinner date after bringing the kids home. Splitting a sweet pork burrito from Costa Vida hit the spot.

Baby is 34 weeks adjusted gestational age.

Read about last week: Week 6!

Day 43: Roasty Toasty

Dr is upping Baby’s potassium, sodium chloride, and chloride to counteract the loss of electrolytes from his maintenance diuretic.

Nurse Hailey said Henry was “roasty and toasty” so she swaddled him loosely to let him vent a bit. He had been fussy all morning going from peaceful rest to a 212 heart rate in 20 seconds. When I got there, he was so tired which was unlike him, but I guess that happens when all morning you’re awake and using all your energy. I got a taste of it towards the end of our 2 hour skin-to-skin session when I’m sure he was sweaty and too warm to be comfortable. Weighs 2050g.

Day 44: Open Crib

He is in a Big Boy Bed (open crib)! And apparently he ripped his feeding tube out and had to be retaped twice on Nurse Brenda’s shift, and once right before she came on. It’s the same nurse who gave me predictions the other day Today says he has a “determined air”, and she wants me to come back in 2 years to update her on how he grows up.

Baby is back to CPAP for breathing; they weaned him off the NIPPV.

The therapy team taught me how to give him a baby back massage with oil while doing skin-to-skin. He LOVED it so much he slept deeply on me.

Nurse Eliza says that tonight he gained 26g and weighs 4lbs 9oz.

Day 45: Eye Exam

He ripped his feeding tube out all the way again before I arrived. A nurse put it back down his throat, 10 mins later his nurse had to re-tape his face. He was super warm so we let him air out while doing cares. I was in the middle of getting a baby massage lesson when they found out the eye doctor is coming and Henry needed his eyes dilated with those eye drops that sting. His eyes are really swollen while the CPAP mask is on, so they took off all the stuff from his face first. We did 2 sets of those eye drops 5 minutes apart.

I wasn’t going to hold him since we will have to put him back as soon as the eye doctor comes. I didn’t realize how unfun the eye exam is, involving metal clamps that keep Baby’s eye open and metal things they put in his eye… Dr. Jen told me it’s kind of distressing for parents to watch. But she encouraged me to hold him because we don’t really know if the eye doctor is going to be here in 5 mins or 2 1/2 hours, and I might as well hold him because Henry is gonna be upset for the exam anyway. We held for 3 mins.

They said baby is doing fantastic! He is still in zone 2, almost zone 3 for his eyes. His next eye exam is in a couple of weeks instead of next week so that’s good!

Day 46: Rollercoaster

On the way to the hospital I got pulled over for speeding 46mph on a 35mph road. I didn’t even realize it! He gave me a Warning and told me to be careful in the “suicide lane” where many accidents occur when other lanes try to cross. It shook me up a bit. I’m glad there was no accident, I didn’t receive a ticket, the therapist I was trying to meet on time moved our appt later, and I found a rare parking spot at the front!

Baby Henry got moved to the B side of the NICU! The grow and feed side. With his high temperatures, they changed to lighter cotton sheets and swaddles so it’s not too hot. Physical Therapist Larissa(?) taught me how to massage his arms and legs. As I massaged Baby, his heart rate was the calmest I’ve ever seen (150s)- he gave smiles and even fell asleep during.

After skin-to-skin his temperature was still fever high. Dr talked with me about ruling out infection by blood samples through an IV, collecting a sterile urine sample via a catheter, doing a nasal swab for a respiratory test, and performing a lumbar puncture (spinal tap I needed to sign a consent form for) to test for meningitis. He’ll be put on antibiotics to cover any major infections while waiting for test results.

As Dr talked with me, she already had everything ordered, and the nurses were getting things ready. It was urgent because he’s already had a fever for 2 consecutive days, and the antibiotics need time to work and counteract an infection. If we wait and it does turn out to be an infection, it would be able to do damage and wreak havoc on his body first. He has very little to no immunity.

Best case scenario he gets tested, everything comes back clear, they wean him from the antibiotics, and he just runs hot so they put more fans on him. They need to make sure because “‘tis the season”.

Dr tried to make me feel better by saying that every baby in the NICU has these infection tests before graduating, and it is just our turn. So far Baby has been able to avoid any major/serious issues here, but things can change quickly. We are praying, I’m just an emotional mess.

Jer wanted to see Henry as soon as I updated him. I came home during the heaviest traffic just to pump and join him back to the hospital. Nurse Ashli said his temperature was more normal for her. He has a scalp IV to administer meds. Baby looked comfy and was sleeping after a failed Lumbar Puncture. They will let him rest before trying again. He was just so exhausted!

Day 47: Infection Test Results

He sleeps just like Daddy- with a fan right on him Nurse Ashli got him all set up last night.

The nurses gowned up every time with Baby until test results are in, to decrease chance of spreading anything to other babies they work with. I also gowned up while doing Cares with him. He had explosive poop in 3 new diapers before I could finish putting the diaper cream on! I was so glad to be able to hold him after I pumped at the bedside.

And! Now 5lbs 3oz, but a different scale was used so not sure if it’s accurate.

Negative blood tests; they stopped the antiviral medication. The urine sample has a marker for infection (just a marker and not 100% clear), so working with pharmacist for suitable antibiotics. Not enough spinal fluid to test all they usually like to test, but results seem ok? If there are more questions with the fever they can consider getting more spinal fluid. Moving forward with treating a UTI with antibiotics for at least 5 days through the scalp IV.

Day 48

This little fella has stolen my heart.

Baby’s all new nurses said he slept peacefully for hours after a massage. He’s just under 5 pounds according to his doctor (the scale from the other day was probably inaccurate). He loves his little fan, but it ran out of battery and he was hot when I arrived. I’m still trying to use less than 4 diapers each time I change him. While I grabbed the diaper cream he peed on the bed—a rookie mistake not to cover him up every moment! He was very happy after I held him loosely swaddled for a couple of hours, and holding his hand all the while. There was an unusual smell near his face, so I’m glad he will have a bath tonight.

Day 49: Special Visitors

I think maybe the smell was a head wound they found and Dr called me about this morning. The Wound Care team will look at it tomorrow to make sure it’s properly treated. They’re not sure of the cause, but it looks like it’s from pressure or friction unrelated to the scalp IV. Nurses put bacitracin antibiotic on it and it’s healing, shouldn’t be painful, Doctor isn’t sure if/how it will affect hair growth but it’s possible that in the white spots the hair might not grow back. Dr also says this is Baby’s second UTI since birth, so he wants to do an ultrasound to make sure the kidneys developed properly and aren’t the cause of the multiple infections.

Baby weaned on CPAP from 8 to 7. They moved the IV to his arm, and it took me hours of holding to get used to it. Jer’s sister Alyssa and her family were in town all the way from Oklahoma! She and Nic got to visit Henry along with Grandma Monica. Everyone was too nervous to touch him, but eventually touched his hand or his foot. Tonight he measured 5lbs 3oz, and 41cm (about 16 inches) long!

Read about next week: Week 8!

Check out more weeks from our NICU journey here.

I wanted to remember some moments we’ve had outside of the hospital this month.

I’ve been finding comfort and upliftment in reading middle grade children’s books. Wonder. The one and only Ivan. Fish in a tree. Prince Caspian. And even similar adult books like Lessons in Chemistry. I love the lessons about kindness, doing really hard things, being brave, and never giving up. All things that I need more of in my life. It’s encouragement while I try to be patient and steadfast for Baby Henry to come home from the hospital.

As a family we are doing the library’s Fall reading program. It’s Lord of the Rings themed which has been super fun!

Here are some other memorable times this month:

• Grandma Enid and Grandpa Harold saw the boys sing and do short speaking parts in the Primary Program at church.
• Visiting our Canyon to see the Fall Leaves.
• Bonding over soccer. The boys taught me some soccer skills for one of our date nights.
• Father-Son bike rides

Love, Kat

Updates as we progress in the hospital.

Read about last week: Week 5!

Day 36: Lab Report + Pumping

It was lab day for Baby when he gets all his tests done. His chest x-rays are good, head looks good. Sodium was down, so they are putting him back on it. Sometimes decreasing the fluid helps to lessen overall swelling, so they will try increasing his added calories from 26 to 28 and then lowering the volume to make a more calorie-dense formula for him.

As a preventative measure for BPD (chronic lung disease), they will give inhaled medication to him starting at 34 weeks (possibly even a day or 2 prior). The inhaled medication is steroids and maybe albuterol to help continue to open lungs. Doctor said the chronic lung disease sounds scary, but it’s not; it just means he’s needed lung support since birth—normal and very common for babies born at 28 weeks.

The lactation consultant says my milk production is only half of where it’s supposed to be. I put so much effort into pumping (it’s like the majority of my day), but so far only enough to maintain, and that realization was discouraging. I’m already so tired, I don’t feel I have any more to give. My supply is still increasing in an upward trend, so we’re going to give it another week or 2 of trying to eat well, pumping at the bedside right after doing skin-to-skin with baby, and getting at least 4 sessions in during the day.

After 2.5 hours of skin-to-skin, I added an hour to my visit with all the pumping and getting something to eat. Breast milk is so powerful in keeping baby healthy and growing that it’s worth it.

Day 37: Open Isolette

Henry graduated to an isolette with an open top (I think it’s called a Radiant Warmer?).

His provider Miriam said he’s in the 3rd percentile for head and length, but 44th percentile for body—“short and squatty”, with a smile. I’m not worried since we’re a whole family of shorties. Then she said she hates the charts that don’t account for different people, including the BMI. “I’m strong, and the BMI doesn’t know that!”

Baby’s face keeps swelling, but we will continue watching him for changes. I pumped at his bedside before/after holding skin-to-skin. During his feed while on my chest, he spit up and the feeding tube popped out. Nurse Tori had to clean us up, pop the tube back in his mouth while he made gagging noises, remove the old tape from his face using this strong-smelling stuff, and then re-tape the other side of his sweet face. My chest has little scratches from where his sharp growing baby nails have been while practicing opening and closing his fists.

Day 38: Swollen

Henry’s eyes and groin area are “slightly” swollen; I was changing his diaper and it felt like rocks Nurse Annie agreed, so Dr Jenn checked and decided to give him a one-time dose of Lasix (a diuretic) to help remove the excess fluid. It’s normal for them to use it, but it strips a little of the calcium in his bones amongst other nutrients so they don’t give it all the time. They will probably give him other medicine to counteract the loss of electrolytes. This is very mild swelling compared to what they’ve seen for others, but gosh he looked so uncomfortable and in pain unable to open his eyes and flinching at any touch in the swollen areas.

We were behind schedule by 1.5 hours with everyone busy from many births today. I held Baby for less than an hour, and he was so upset having the prongs in his nose that we had a hard time getting him to settle. We finally found a position he liked, so I did my best not to move and just gazed at his face and held his hand.

Tonight Nurse Eliza said he’s looking a lot more comfortable after the Lasix. The livestream camera is still down (for the 3rd or so time), so I’ll just have to see him in person. She gave him a lovely swaddle bath, which he loves and gets so relaxed afterwards. He gained 70g—total now is 4lbs 7oz, she called him “massive!!”

Day 39: Feisty

His eyes look so much better! Not completely free of swelling, but a big improvement. This little goober has been a spicy feisty fella today Here he is looking like he’s trying to escape even though he’s all swaddled and with a weighted log on him…

He had a new nurse, respiratory therapist, and nurse practitioner today who all laughed and said he might be having a bit of a tough day, I believe because he’s been angry since they started. We went through like 4 different positions and 6 outbursts during skin to skin, but got to snuggle for most of it.

Baby is OBSESSED with sucking on his pacifier, and will often fuss or work himself into a rage with high heart rate if it falls out. He hasn’t yet learned how to keep it in and it makes that popping noise as it falls out. When his nurses need to do something other than serve as his paci-holder, they get creative! Some tried teaching him how to use his hand to secure it, swaddled him tightly with his hand up to hold it in, or laid him on his tummy with his head in the exact angle to reach his binky.

Today Nurse Krissa (??) used one of the weighted bean bags to keep his pacifier in his mouth. I just thought it was so funny because great minds think alike!

Day 40: In For It

They are weaning Baby from the NIPPV machine from 15 down to 10 today. Tomorrow the plan is to go down to 5, and then eventually “back to Bubble CPAP”.

Last night they gave him a different diuretic (to help with swelling) that pees out less potassium so he doesn’t lose too many electrolytes.

Baby’s Doctor today has a French accent, and pronounces his name “awn-ree” like the word “ornery” which fits him sometimes. The charge nurse Steff told me, “Henry was probably just over it yesterday.” His new nurse Brenda was making predictions. “He’s feisty!! But I like that because we want a fighter, don’t we? Oh you’re really in for it… but I think you know that. He’s going to be a handful especially when he starts walking and getting into his Terrible Twos, but he will be so much fun!” She said it so wistfully and longingly, as it turns out to be one of her favorite ages. Her parting words to me: “You better get lots of sleep before his toddler years.”

To do skin-to-skin, it took Respiratory therapist Camry and Nurse Brenda a bit to get Baby comfortable on me, but we did it! He settled in a position with his arms underneath him, but the nurse was worried his arms would go numb and shifted him shortly after. Of course RT Camry had to get a photo before that because we all thought he was just too cute.

Both said he’s such a tense little guy, so they put him on the waitlist for a Therapist to give him a “baby massage”. I didn’t know that massaging the babies was one of the NICU treatments, but of course the babies love it!

Day 41: Family Visit + Baby Bath

It’s been a few weeks since the kids visited Baby, so we all piled in the car at 6am. We got moved to a new private room! They all held Baby’s hands or feet while his face and bum got cleaned. I didn’t get any pics because I waited for them in the parent room (only 4 people allowed at the bedside).

Jer reveled in quality skin-to-skin time with Henry. He only gets to see Baby on the weekends. I’m starting to suspect that Baby likes Daddy better than me! He showed off how strong he is with lifting his whole body basically.

I loved seeing his beautiful open eyes Such intense eye contact and staring, a serious expression and furrowed brows, visually exploring his surroundings. I think he got overstimulated as Jer repositioned him, though. Baby had hiccups, hand splaying, and finally tuckered out before having an explosion in his diaper.

Later That Night

Jer gave Baby a bath for the first time! I got to catch Baby in warm towels after, and it felt so good to hold my sweet baby who had nothing on him, not even a diaper.

Day 42: Sister Time

Happy 34 Weeks, Henry!

Last night Nurse BritLee said my freezer space for breast milk is overflowing, and they will call me if my hospital supply gets low. Pumping at 3am I used my first milk storage bag to freeze some at home. I’m working hard to pump consistently and get my milk supply up.

Lily visited Baby with me after General Conference. She did his Cares, and while I pumped she held his hand or his foot and made sure he was happy with his binky. She is such a loving and caring big sister!

Dr weaned his PEEP on the NIPPV breathing machine from 10 down to 9, and glycerin enemas again as needed since his tummy seemed really full and needing help with moving nutrients. He’s lost weight for the past 2 nights, and that’s concerning to me.

For the first time I held Baby in my arms like a big boy briefly while Nurse Lauren changed his linens. I wanted to cry from being so happy looking into his face. I knew he was happy, too, because he was screaming until the moment he came into my arms. We belong together.

Read about next week: Week 7!

Check out more weeks from our NICU journey here.

It’s been a month for me to recover, mourn the end of pregnancy, and process the events of our surprise birth. I feel grateful that both Baby Henry and I are well. Here’s the story.

When baby was still 27 weeks on Friday last week, my water broke (premature rupture of membrane). At the hospital, the doctor said our goal was to stay pregnant for 36 hours.

On Sunday (2 days hospitalized) we celebrated that we made it to 28 weeks pregnant! A NICU doctor came and talked with us about how that milestone is a leap in development and positive outcomes for our baby. We move from “extremely preterm” at 27 weeks to “very preterm” at 28 weeks—lower risks for death, less chance of long-term respiratory problems, and reduced chances for severe disabilities. We set our sights on trying to reach 30 weeks if we could, even if our chances were “50% of women whose water break go on to deliver within a week.”

Our Miracle

Jer and I had a special spiritual experience taking the Sacrament when our friends the Fergusons visited. I felt the spirit so strongly of my Savior’s love for me, and it brought this to my remembrance…

At the beginning of our pregnancy, I did what the prophet encouraged us to do and “expect miracles”. I asked Him for the unthinkable: a full term pregnancy. I was prompted to study more from that talk:

“Seek and expect miracles. […] the Lord will bless you with miracles if you believe in Him, “doubting nothing.” Do the spiritual work to seek miracles. Prayerfully ask God to help you exercise that kind of faith.”

Russell M. Nelson, The Power of Spiritual Momentum, April 2022

Doubting nothing? But I have so much doubt and such strong desire when it comes to this particular ask. I know that God is able to do this miracle in my life, “but if not…” I know my faith in Him will not be shaken. God’s ways are higher than ours, and I wondered if I needed to realign myself to His will. Was I asking for His miracle?

I stopped asking for a full-term miracle because it felt a lot more like my will instead of God’s will. My experience with God has been, “let’s do it the hard way”. I embraced a new thought: This Baby is our Miracle regardless of when or how he comes. I know I can “doubt nothing” in that, and be filled with thankfulness even though the answers and details are not revealed to me until afterwards. I felt God’s confidence again and knew that this Miracle was ours.

Labor

You never know how strong you are, until being strong is your only choice.

Bob Marley

We were put to the test when the very next night my sister Adelyn and I had a sleepover in my hospital room. At 1AM contractions started. By 2AM they were 10 minutes apart. I couldn’t get a hold of Jeremy on the phone. The nurse woke my sister up and asked her to go get my husband at home.

At 5mins apart, the nurse checked that I was 3cm dilated with cervix 90% effaced (thin). I thought, This can’t be happening. No, stay pregnant. It hasn’t been 36 hours. Going into labor and delivery, I was scared and fighting the experience because I wanted to keep baby in longer.

They put me on magnesium sulfate and prepared me for an epidural, which I dreaded because both didn’t go well last time. I needed my husband. I shook violently from the adrenaline, and tried not sob in front of my nurse Dakota, who looked and sounded JUST like my friend Tori (same voice, hair, face, everything). She was my angel that night.

As I started panicking, this angel nurse let me hold her hand and looked into my eyes. “You are having this baby tonight. He is going to be in the NICU and they are going to take such good care of him. This is happening, but it will be okay and you just need to hold tight.” It was so comforting and helped me get in the right frame of mind. I was alone, but I felt my Heavenly Father (and Tori/Dakota’s face) telling me “I got you”. Time to be brave.

The epidural went smoothly. My labor slowed, so Jer made it in time and the doctor told me not to sneeze until I reached a 5 haha. For the first time I felt awake and fully present instead of stunned and scared out of my mind at the delivery table. My sweet Jer was all gowned up holding my hand and ready to help cut the cord.

Ready to push, my doctor asked if I was planning on having another one after this. Um, what?? Maybe we could talk about it after this one? …And if so, I should plan for just having them early. No kidding! He was so little that it didn’t take long before we heard a beautiful powerful cry and I caught a glimpse of his form before they rushed him away and worked on my afterbirth stuff. The doctor was so impressed at how strong he was even for such an early baby!

Joy

Having things go so opposite of what you are prepared for is a mental challenge—I could either let negativity reign or find my joy when the Lord is asking me to trust Him through our earliest birth yet.

“…[T]he joy we feel has little to do with the circumstances of our lives and everything to do with the focus of our lives.

When the focus of our lives is on God’s plan of salvation, […] and Jesus Christ and His gospel, we can feel joy regardless of what is happening—or not happening—in our lives. Joy comes from and because of Him. He is the source of all joy.”

Russel M. Nelson, “Joy and Spiritual Survival”

It is truly a miracle that our special blessing came true; both Baby and I were healthy through this. God is shaping us in ways I can’t even imagine, in ways that are so clearly through His power and love, and I just have to hang in there to see how.

Love, Kat