These first few days at home with Baby have been a sleepless trial by fire. There’s a learning curve and getting into a rhythm again. Baby didn’t sleep or eat well the first couple of days. The feeding tube we fill with bags of milk every 3-4 hrs is the biggest change. He threw everything up at first so we slowed down his feeds. There’s usually only 30-60 minutes until the next feeding, with medications to administer in between. I don’t think I can keep up the breast pumping on top of it all, so I’m giving up on that. Honestly I’m sad about it because breastfeeding with Baby is my favorite bonding experience.

Jer and I were on our 2nd sleep deprived night and wondered, “What have we done?” This kid has pulled his NG tube out needing to be re-taped at least once a day. I’m getting lots of practice using Tegaderm, flushing the tubes, mixing the milk without breaking it down, and changing diapers with one hand. I forgot how much mess comes with Baby, and need to make a load of his linens at least every other day.

Kids with Baby

L took Tuesday off from school to help me while Jer is back at work.

The kids have each put their own special touch to spending time with their new brother. They are all taking turns daily with holding him. Good thing, too, since he really does want to be held and cuddled 24/7. I can’t even put him down in his bed to sleep anymore, he wakes up upset instantly. Baby Henry has the best siblings to shower him with affection and attention, play with him, talk with him, sing him songs, and read him books. I hear them whisper to him how much they love him. F has even asked if he can learn how to change Baby’s diaper.

All the Gear

We’ve had a chance to open and try out all of the baby gear just from living life. Henry went on his first neighborhood walk in the new stroller. I love that stroller!! The ride is so smooth even over craggles and split sidewalks.

We got the Owlet pulse oximeter working when a nurse came on a home visit to walk us through the feeding pump equipment again. He used it for one night and learned how to angle his foot so that the monitor would not read properly and slip off.

I got the baby monitor working, although baby is never quite left alone anywhere. We tried it out while the kids held the baby and I went downstairs to eat.

On Wednesday, Baby had his first visit to the doctor. Now that Henry is home and I’m not commuting to the hospital daily, I’m driving the van again! It was my first time loading Baby in the van, and using the feeding tube travel bag. I installed his winter car seat cover right there.

Reinforcements

Thank you to my sister Adelyn who came to help me She really lifted my spirits with a big hug, chicken noodle soup and a fridge full of food, surprised me with caramel hot cocoa and butter cookies, walked the dog, played with the kids when they got home from school, and held Baby so I could shower. We set up the bouncer, and he napped well in it while we had lunch next to him.

Changes Around the House

Jer installed curtains I ordered for our room, and I love the touch of green that also lets in filtered light. We also put up the Big calendar which makes it easy to put in Baby’s many appointments coming up.

The family got festive and finally put lights and ornaments on the tree! That was tricky since the tree actually toppled over and water spilled on many of the wrapped gifts. No breakable ornaments this year, and presents are on the other side of the room.

It’s so exciting that many neighbors have been delivering gifts at our door. One night we got the doorbell and giant wrapped presents arrived “to Henry from Santa”!

We are super happy to have him here for Christmas

It’s Week 17! Baby is 44 weeks corrected gestational age.

Read about last week: Week 16!

Day 113: Discharge Day

Lily picked out Henry’s “going home outfit”, a footie pajama with snowmen on it and a white hat to match. I walked into the NICU with the biggest smile that I couldn’t put away.

It’s official! “All I want for Christmas is You” so we put Baby in a stocking and took him home!!! We’re feeding and caring for him around the clock with an NG tube. The kids are ecstatic! He’s going to see everyone from the cardiologist to urologist to pulmonologist to feeding clinics- so we’re far from done, but we are together!! We’re not able to have visitors for a while but I am thinking of all of you and our amazing blessings. Thank you for the prayers!  Our Christmas Miracle

Check out more weeks from our NICU journey here.

Fletcher has this icebreaker idea at the dinner table where we pretend we are old folks. In a silly almost Southern accent he says things like, “Back in my day, we didn’t have Star Destroyers!” and “Kids these days have no respect” There were so many funny ones and I can’t remember them! Some of my favorites:

• “Back in my day, we drank milk!” -W
• “Back in my day, I used to have hair!” -F
• “Back in my day, we ate cookies in the morning.” -W
• “Back in my day, we had to make those darned cookies.” -Jer
• “Back in my day, we had Malls.” -L
• “How old are you? 10? Then you get 10 spankings.” -F
• “Back in my day, we had to walk.” -L
• “Back in my day, we had VCRs and had to rewind it before watching a movie.” -Jer
• “Back in my day, we had good movies.” -F

Here are some updates on the kids.

The Poetic Pianist

F got Student of the Month in October. “F was an example of ‘Clarity and Self Control’ by staying composed in different situations and handling challenges with a positive attitude.” He played “Rudolph the Red Nosed Reindeer” on the grand piano at his Christmas recital.

F has been learning about Poetry at school, and it’s his favorite subject now. In addition to creating ditties on the piano, he now makes up lyrics for songs that include rapping. Then he performs them for us enthusiastically, and W joins in with dance moves, and for the rest of the day we can’t get his songs out of our heads. It’s pretty much the best! I’m not sure of the title of his latest creation, but it goes, “Skateboarding on a see saw, skateboarding on a rock, skateboarding on a see saw, skateboarding on a rock. I saw a cactus, a whole bunch of spines, I say to myself ‘I’m a porcupine!’” When Jer asked him if he could make it make more sense, F firmly told him that it’s a song and it doesn’t have to make sense. I agree! It’s way more fun that way!

The Medieval Critical Thinker

W got Student of the Month in November. “W was an example of ‘Critical Thinking’ by asking thoughtful questions in both literacy and math. He looks for clues in the text, and he explains his ideas clearly. In Math he shows strong problem solving skills by trying different strategies, checking his work, and explaining his answers. He is a wonderful role model to his peers. Thanks for working hard! Mrs. Tanner”

W is now obsessed with Medieval times. For Christmas he asked for a Lego castle, and this was after we’d already bought his Big Present Lego. Jer sadly crushed his dreams of a Lego medieval castle to build when he told him Lego doesn’t carry a set like that anymore. He wanted to watch the entire Hobbit and Lord of the Ring trilogies to see the castles and armor. Then he crafted helmets and armor in different styles using thicker paper, thinner cardboard, regular tape and scissors, and a hole puncher. He and F battle it out with their lightsaber swords, and get so into it that we sometimes have to confiscate the weapons before someone’s glasses break off their faces by accident.

The Celebrating Artist

In November, L practiced for hours every day on her viola and also extra percussion instruments for an orchestra concert. For the first time we got to see her perform at the front with all the rest of the violas! She is an amazing performer and we are so proud seeing her play so beautifully on stage. I wish I got better photos to share.

L is working hard on beautiful artwork to give to her loved ones for Christmas. The piece she showed me was for her brother W, depicting George Washington crossing the Delaware because W said his favorite period in American History is the Revolutionary War. She combined techniques from her watercolor unit in school and some things she learned from a watercolor art book we borrowed from the library once.

I’m so proud of how thoughtful and creative these kiddos are. How lucky I am that they share their hearts and minds with me.

Baby is 43 weeks corrected gestational age.

Read about last week: Week 15!

Day 106: Decided

I love my Baby. He fell asleep on me skin to skin after he took a full bottle from Nurse Katelin. His little restlessness subsided while I swayed with him and sang random songs- Hootie and the Blowfish, Fleetwood Mac, and a lullaby my Grandmother always sang to us. We breastfed in the afternoon and it was so hard to leave. Yesterday the medical staff said he’s not happy unless he’s being held and cuddled 24/7, and I honestly didn’t see what was wrong with that if I had him home. That’s when I felt inside that it’s time to be out of here.

I found myself at the hospital chapel, and in the quiet I saw a jar of prayers where you could leave your burdens or your joys for a Higher Power to receive. I wrote the gratitude I have in my heart on a piece of paper and left it there:

I got to hold my baby.

My baby calms at my touch and stills at my voice.

Someday my baby and I will rock in a chair at home.

Someday baby will be home.

Day 107

Baby is so strong! Nurse Katelin showed me how well he holds himself up on the boppy pillow doing tummy time. We breastfed in the morning, and I held him after he was bottle fed at lunch. He didn’t want me to put him down, but I wrapped him up nicely and gave him a few pats so that I could pump next to him.

I had several meetings at the bedside today. The lactation team, social worker, dietician, and provider all talked with me about moving forward with a plan for Baby going home on an NG (nasogastric) tube, as well as Early Intervention to have professional support in Henry’s development.

Made many phone calls, too. My breast pump rental expired after 90 days, so I got an extension. I confirmed the feeding pump order and watched videos on how to operate the machine and prepare the milk bags. I called our family doctor’s office to check if he’d be comfortable serving as Henry’s pediatrician with all the “after the NICU” needs for weaning the feeding tube and breathing meds, tracking his growth with adjusted developmental milestones, and working with the feeding clinic, neurologist, and cardiologist for his other follow ups. Doctor visits nearby with our doctor who already sees the rest of our family would be ideal!

At home I assembled the stroller, then tried it out with the car seat and adapter. It’s such a fancy stroller and pushes so smoothly! Can’t wait to bring baby home in it and take Baby on walks!

Tonight he weighed 3804g, about 8lbs 6oz. Went up on feeding volume to 66mL every time we feed him.

Day 108: NG Tube Training

I placed my first NG tube. In order for Baby to go home with feeding tubes, Caregivers need to pass off placing it twice. Nurse Vee got me set up with all the supplies, swaddled him tight, and helped me measure and get it inserted. I replaced the one he ripped out of his nose. Got it on my first try! Poor baby sad-cried and had boogers we removed, so I snuggled him after. He got 40+ ml from a bottle at lunch.

The hospital has switched to using Size 2 diapers for Henry even though he’s still smaller than the suggested weight range. I freaked out for a second because we have all Size 1 diapers at home and I thought I needed to return them.

We have 2 options for what to do at night with Henry for the tube feedings. There are pros and cons. With a continuous feed we would all be able to sleep, but he would not have as much practice with oral feedings so it might delay his weaning from the feeding tube. We could do longer stretches of fewer feedings at night and just get up once to feed him and gavage the rest. We decided on the 7 feedings instead of 8, but the total volume remains the same so he’d be gavaged more at night.

Day 109

Henry randomly smiled at me all morning. He smelled so nice and clean from his bath last night. I loved snuggling him. We breastfed, bottle fed (50mL and there was 70mL in the bottle!), and had many diaper changes as this boy is a pooing machine and does not tolerate a dirty bum.

Jer and I were supposed to visit Baby together, but Jer felt like he was getting sick last night. We had plans to train on the NG tube stuff today. I need a backup to be able to work with the feeding tube instead of just me. If Jer is sick that doesn’t affect Baby’s discharge date; they said to just isolate Jer with a face mask at home . I think L can learn about placing the NG tube, but she can’t be one of the people to pass it off since she’s not an adult. The hospital is still trying to get back to me on that.

Looks like we are still working towards discharge on Monday. I haven’t been telling anyone because I don’t want to jinx it. I’ve become quite the superstitious realist through this long journey—don’t get attached to any ideal outcomes. I appreciate Charge Nurse Trudy for saying that when he’s home he will do so well and we won’t be on feeds for too long. She’s so encouraging and kind- it helped me to buckle up and accept what I have to do.

Even so, we are progressing on our discharge goals checklist. Nurse Coldir said to bring the car seat in the next couple of days so baby can do his Car Seat Test! Dr sent Henry’s prescriptions; only one of them was available at our pharmacy and the rest I will need to get over the counter elsewhere. His kidney test results seem OK; they might have us follow up with a renal clinic or urologist later. Henry also had a hearing test today. He failed one of the parts, but might have been from being fussy. The tester said we’d be referred to outpatient and need to do a follow up appointment, but I asked them to come back and redo it if possible; that could save me time if we don’t actually need to do another follow up visit somewhere.

I bought a monitor called an Owlet to track Baby’s heart rate and oxygen levels at home using pulse oximeter technology. While he’s on the feeding tube, we want peace of mind that Henry doesn’t aspirate in the night.

The 3-tiered rack came today! I’ll have a spot for all his medical supplies and be able to use the dresser top as a sanitized area for preparing his feeds that go into the tube. I have a plan for where to move around all the furniture in our room and living room. I hope this all works and we get it done before Baby gets here!

Day 110

The zinc tablets and rest worked for Jer and he feels so much better! No symptoms so we went to the hospital together. I breastfed Baby 2 cares in a row, and had a good amount of milk pumping. Heavenly Father is helping me stay fueled and a good supply without needing the lactation supplements.

Jer passed off his first NG tube placement with Nurse Lauren. She had him actually measure with a ruler instead of just using the numbers on the tube. He said no kidding it’s definitely a two-person job!

Discharge training was kind of a challenge in our crowded room. We have the Play mat stuff, swing bouncer, Snoo bed, test weight scale, breast pump, feeding tube pump and equipment that got delivered, trash cans for all the isolation supplies, car seat, and all the chairs for us and the guest taking up floor space. We had visits from Occupational Therapy about Baby’s bottle feeding, Lactation on breastfeeding, and the Dietician showed us a hands on demonstration on operating the feeding tube pump. It has a backpack to carry around when traveling, and an IV pole when at home. We need to mix the milk using a recipe, wash and prime the milk bags after each use, and grab a new milk bag every 24hrs. We have an outpatient appointment scheduled with the feeding clinic 2 weeks after discharge.

We rearranged the house so that our bedroom can hold the nursery. The desk went into the main living room. I really like how it turned out. Jeremy did a great job and Lily helped us out a lot. They even hung up the baby mobile for me! I’m trying to set it up so that Cares at home go smoothly. My very comfortable Glider chair is in the corner. The kids had a great time trying out my chair reading the new book called Wonky Donkey that Nurse Vee gifted Henry. I laughed so hard that I cried a stream of tears as read it to the tune of “I want a hippopotamus for Christmas”, and Fletcher was his hype man.

We are getting closer to having Baby home!! I feel a little more prepared. It feels like a home version of his hospital room, but with a big bed in the middle haha.

Day 111

While pumping at 3am I saw Baby from the livestream camera, chilling in his car seat taking the test. He passed! Also retook his hearing test and passed! We are still working towards discharge on Monday. I got stopped by the Respiratory Therapists who have been there with us since the beginning, and we got so emotional with how happy we are at how far Henry has come and that he is going home soon. Reggie even took a shift on Monday so he could see us off!

I set up the IV pole, milk bag, tubing, and feeding tube pump to gavage Henry from it for the first time. Since we are NOT doing continuous feeds and are just doing longer Bolus feedings, the Charge Nurse said we could do our “Rooming In” at the bedside in the daytime and split it up so that we don’t have to do an exhausting 12-hour stay overnight. I did 6 hours today with help from Jer, and we will complete the final 6 hours tomorrow.

During our “Rooming In” today we went through the process of feeding Baby, gavaging, pumping, and cleaning everything to do it again. Nurse Lauren was an amazing teacher and very patient and supportive of us. She showed us how to make the milk mix with the breast milk, formula, and benaprotein fortifier; it took over 10 minutes of twisting and waving the bottle (definitely not shaking) to get it mixed properly.

Baby fell asleep so well snuggling on at our night Care, his heart rate was 131. However, he woke up so hungry that while Jer bottled him he ate too quickly and threw up, but then he finished the entire bottle of 70mL! I think that’s the most he’s ever done.

We didn’t get to pass off our 2nd NG tube placements, so we will do one as soon as we get in tomorrow and then the last one on our way out. The home healthcare store is rumored to be stingy with the feeding tube supplies so the Nurses are being so kind sending us home with a little extra.

Day 112: Rooming In

Happy 44 weeks to my Baby Henry!

Today he was dressed in a yellow footie pajama that made him look like a big boy. We breastfed, finished passing off our last NG tube placements, and got more practice with gavaging using the home feeding tube pump. Baby was a champ today and drank 60 mL for Jeremy! All his caregivers and providers say he is ready.

Tomorrow we’ll make doctor and specialist appointments, and stock up on supplies. Nurse Coldir helped me start a schedule of care so I remember when to give Baby his medicines and food, and get into a routine.

We’ve been preparing the baby area in our shared Master Bedroom. The room felt like it needed a splash of color to ground it, and liked the idea of diffused light from the window so I ordered curtains. That seemed more doable than painting, expensive murals, or cluttering the walls. My only other addition would be acrylic floating shelves for books, and a plant. I can’t wait to share the space when it’s ready! We don’t plan on going to any public places for the next few months. Our doctor warned us that the measles is going around, and that these little ones are not able to be immunized against it. A nice comfortable room where some of that outside and nature would make a difference for us in the isolation.

We are SO excited to take Baby home tomorrow!!! I can hardly believe it!

Check out more weeks from our NICU journey here.

A tribute to the best toys of my kids’ childhood. One of the greatest joys of being a Mom is watching my kids play as they grow. Instead of talking about the “hottest toys of the season,” here are the toys my kids can’t stop playing with regardless of age. They are open ended, encourage creativity and imagination, and have withstood the test of time.

Magnet Tiles

My kids first played with Magnet Tiles at the Springville library back in 2017, and have been W’s go-to toy ever since. Magnet tiles were our #1 must-have toy when downsizing, and surviving the pandemic! Kids will have more fun with enough tiles to play with friends and be able to build bigger creations. Windows and rounded pieces have enriched play. W has even put a little night light inside to make the colors shine.

Doodle Pads / Art

These doodle pads were gifted last Easter, and allow for unlimited drawing. They are used regularly and were super affordable so I consider them a good value. The kids practice their art and like to write messages on them. They are great for church, road trips, waiting rooms, and any time you need low-tech entertainment for quiet time.

Kids are natural artists, so I’ve loved gifts that will help them express themselves or unleash their imagination in tangible ways. We’ve gifted washable paint, easels and art aprons, watercolor pencils that you add water to after drawing for a cool effect, and other art supplies.

Legos

Our kids have loved Legos since they were old enough to play safely. For younger kids, larger blocks like Mega Blocks work well. They can rebuild using specific instructions, or make anything they can imagine. As they grow older are interested in how things work, they can get into more of the engineering with special pieces like wheels, cranks, hinges, etc. We now have a shelf for the kids to display their creations. We use Legos as a way to bond with each other as we build together, and sometimes just supervise the more complex sets when the kids are still little.

Nugget Couch

I wrote about when we first bought our Nugget couch. The kids continue to use it frequently to build fortresses, tents, slides, towers, beds, reading nooks, a couch (of course), and many more. They even used the Nugget Couch to build their own pretend lending library in the loft! I’ve noticed how well it helps support their playing.

Wooden Blocks

We have had this set of blocks for many years since the kids were little. They’re hardy and good for learning shapes and colors, sorting, and combining with any of the other toys above. Today the boys showed me several armies they made for a battlefield using their blocks. W makes fleets of ships, F makes robots and buildings, and they can even get Dad to join.

Other Ideas

Water guns or nerf guns, stuffed animals, and board or card games. Our favorites are Uno (especially the No Mercy version), Taco Cat Goat Cheese Pizza, Oregon Trail, The Game of Life, Quixx, and Monopoly.

Simple toys that help kids play outside are the best! Child powered. No batteries required.

Love, Kat

Baby is 42 weeks corrected gestational age.

Read about last week: Week 14!

Day 99: Tough Season

He was too sleepy and tired to do well breastfeeding today, already upset from taking his medicine… Yesterday was the best case scenarios for breastfeeding, and today were the obstacles. That was frustrating because I worked hard to be prepared, get the kids ready, pump in time, and drive there to give him the best chance at our one and only feeding session I can be there for. It’s Early Out today when I pick up the boys, so I’m at the hospital only while they’re in school. It’s so much effort for a limited time and low success rate. I wish I didn’t try so hard, that I could change my mindset and just be here for whatever pace he’s setting, but I feel like I want him to go home, what can we do to get him home, how can we do more for him?

The doctor had a long talk with me. All the providers will consult about Henry in their Monday meeting. Prior to today, Henry did 64% of his feedings in the last 24hrs so he’s getting close but not there yet.

Doctors will discuss trying out “On Request feeding”, meaning he’s fed just what he takes orally (nothing gavaged unless he’s doing very poorly and they feel they need to intervene/re-evaluate) for 12-24hrs to see what he does when he goes rogue without a schedule or feeding minimums. Dr asked me to see if I can try to be here for 12hrs straight so that I can do multiple feeding sessions in a row and give Henry that continuity of care; they can let me use the Sleep Room at night. Ideally I’d do the 12hrs in tandem with the On Request so that I see for myself what he can do, and can have a better idea of whether we want to continue in hospital, or go home with a feeding tube. For the feeding tube there would be training, an overnight test, a plan from the feeding team, follow ups with a clinic and pediatrician to wean, and even a more permanent belly feeding tube option if he becomes more dependent long term. Not saying he needs that but just possibilities.

I’m burning out and getting discouraged at this start of Christmas season. I can’t believe it’s now December and we’ve been here since August through literally 3 seasons. Now I’m fighting the increased traffic from shoppers, icy roads and inclement weather, cold and RSV season, a decline in my already dwindling energy and hope, and strain in our time and resources… the challenges are just growing, and while I know this is just a phase—wow, it’s not fun. It’s hard. I try to be brave every day, but then it comes out in unguarded moments crying for no reason while clutching my baby as I’m putting him back or in front of strangers at the elevator. I wish I could feel okay with giving up and just go home and not think about my hospital life, but I’m dreaming I’m holding him at the hospital when I’m at home- and I’m dreaming I’m doing laundry or washing pumping parts in my bathroom sink when I fall asleep at the hospital. It’s jarring waking up unsure of where I am and realizing I still need to do that laundry or go to the hospital to visit because that didn’t actually happen. I think I’m going crazy and some sleep will fix this.

The bright spot in my day was holding Henry wrapped in a blanket emerged in a tub of warm water as he received a gentle massage in hydrotherapy. He had a peaceful restful look on his beautiful face and his arms were so loose and free, even his therapist commented on how much his range in motion is increasing and the tension in his little body is leaving. He looked so calm and happy.

Day 100: Swallow Evaluation

Henry has now spent more time in the hospital than our 3 other preemies combined. Now over 8lbs, he grows cuter by the day! I call him “my little Raptor” from all his noises. His job is to eat/grow well, and today he took his first full feeding by bottle- great job! In his spare time he likes to rip out his feeding tube, be out of bed holding his head up to see what’s up, and getting squished by snuggles. He enjoys my kisses on his head even with my mask this RSV season. If I just held him for 12hrs I think he’d call that a good day. “I’ll be home for Christmas” means so much right now. Please keep the prayers coming, they are powerful.

It’s been an emotional rollercoaster today. I slept through all my alarms and rushed to the hospital 15mins late with a protein bar and probably looked like a crazed zombie. I’m thankful that starting today our kindhearted friends and neighbors are helping me with the boys’ school drop off and pick up so I can be at the hospital for longer and less hurried. “Can I take that off your plate?” It was an answer to my prayers and a relief to this tired Mama. I’m still learning how to ask for and accept help, and realizing when I’ve reached my limit before I burn out.

The only thing keeping us in the hospital is Baby does not eat enough orally, so they have to feed him through his tube in order for him to continue to grow. At 3 PM the therapy team did a swallow evaluation by feeding Baby thickened milk. They are looking to see if he is having certain feeding problems like he’s afraid it’s choking him or maybe the milk is coming out too fast.

He did so much better on the bottle today than breastfeeding where I could feel him work but nothing came out. Before I left the hospital I was considering giving up on my pursuit of breastfeeding, while preparing to stay at the hospital with him for 12hrs for On Request scheduled tomorrow. The swallow eval results changed everything. He drank the whole thickened bottle and was happy. He’s never finished a bottle before, so that was BIG. Usually he has problems with coughing up, throwing up, gas, etc that leave him super tired and still hungry. On Request is cancelled. They will feed him that thickened milk 2x/shift until Friday when they will do a Swallow Study.

For the Swallow Study, they bring him downstairs and use x-rays to see how the milk is actually going down his throat. There are babies who aspirate (accidentally inhale into lungs) but show no signs like the noises or choking, so that test will help rule out those feeding issues.

If he can take all his feeds orally through a bottle or breast for at least 2 days he might be getting ready to go home. I’m trying not to get my hopes up in case we have challenges.

A couple of red spots showed up on his legs and chest, so Nurse Vee is watching them.

Day 101: Viruses

The therapy team worked with me on how to feed him the thickened milk in a bottle. Until the Swallow Study results on Friday we are holding off on breastfeeding. He charmed a Cuddler who held him either yesterday or last night and she basically couldn’t get enough of how cute he was. We also did Play Therapy today with toys and high contrast pictures. OT says he can only see about 8-10 inches ahead so we’ve got to work on tracking the moving objects.

A couple of red spots showed up on his leg and body yesterday. We hoped it was just baby acne but were watching it, and Nurse Vee said it’s exponentially worse today and definitely a rash. There are lesions on his hands, arms, legs, and feet. We suspect in his throat as well from his discomfort at swallowing.

After a viral panel we found out Henry is fighting 2 viruses (rhinovirus and enterovirus), and Hand-Foot-and-Mouth. We are in isolation at the NICU. I held him for hours today so he could get better sleep and try to keep some food down. No wonder he’s had such a hard time eating and violently throwing up the last few days. I’m all over the place emotionally. Just yesterday we were making plans on how to go home next week. We have been so careful and so has the NICU. It could have come from anything. Sometimes we are just lucky I guess. I pray that Angels watch over Henry and that this sickness goes quickly. 

I ate my feelings and thought and cried on my walk in the garden. Tomato soup with grilled cheese was just the warm comfort I needed. I feel like a child wanting to have a tantrum about how it’s not fair and it’s too hard. I have been pouring my heart out to God and pondering at how even in the thick of it I feel Him holding me up. We have to survive this setback. This is one of my favorite scriptures about my Savior.

But behold, the Lord hath redeemed my soul[…]; I have beheld his glory, and I am encircled about eternally in the arms of his love.

2 Nephi 1:15

Day 102: Festive Recovery

Henry is doing so much better- all those prayers are helping. His rash is lightening and slowly he’s able to take more food. He was more comfortable today after taking Tylenol, able to keep his food down, and snuggled every chance he could. He likes my singing and patting him, and just falling asleep on me. He now gets fussy while I pump so that I will hold his hand or show up at his bedside.

Nurse Vee said that he’s getting several new bottles (I’m guessing it has to do with no cross-contamination while we’re in isolation), so I will probably return the bottles I just bought.

I brought a swaddle and hat for him from home and Nurse Vee and I had so much fun dressing him up Festive! He is so expressive and I couldn’t help taking a bunch of pictures

My sister met me for lunch and we had a good time splitting food and catching up, and now we have plans to watch some classic RomComs together.

Our friends and neighbors have showered us with love delivering meals, saying prayers in our behalf, and reaching out with messages. It fills my heart and strengthens me.

Nurse Kayleigh said he took 37mL at his night feeding. Tomorrow he has a Swallow Study scheduled where they will watch his ability to take milk and identify any swallowing problems. I plan to be there for that.

Day 103: Cue Based Feeding

Swallow study today for Henry is canceled. These plans might change but they want to trial giving him thin milk in the bottles because he might have done less before while he was getting sick. It’s a lot of work for him to drink the thick milk and also a lot of work for families to go home on thickener so they want to see if he can build his stamina on the thin, and see how he does today.

We had a team of 2 nurses today, a very experienced nurse and a brand new inexperienced nurse. Normally that’s not an issue, but the inexperienced nurse was our main one and I did not like it. At this stage in the game, I can’t let my child have setbacks for the sake of someone’s training. His nurse directly impacts Henry’s progress. He may be older, but he’s sick and very particular in his care so it’s not like you can just relegate us to having trainees in charge. An experienced nurse knows the stress signs in Baby and will provide positive feeding experiences with him so that he eats well. An experienced nurse will make the breastfeeding process smoother with the stressful parts like test weights and getting organized. An experienced nurse is reliable, trusts the mother’s intuition, and communicates well. An experienced nurse supports you and gives you confidence.

Now that we’re on thin milk I can try breastfeeding again. It was a rough time clashing with the new nurse, trying to get positioned with 3 other people poking and rearranging and trying to sneak in milk droplets. There was too much going on it was stressing Baby and I, and I had to just call a time out and try our own ways. Lactation and our nurses recommended we release the pressure and stress of doing test weights while Henry is recovering, that we just breastfeed for comfort and closeness. We had our first skin to skin time in a while

We switched to Cue Based feeding. It usually requires experienced nurses and Primaries who he trusts and who know him. He has Nurse Annie tonight one of our favorites, and he already ate all his bottle except 10mL! She said she wouldn’t even know he was sick from how he looks and how he’s acting. No one can find his rash anymore. The providers said that’s a good sign! He’s breathing well on room air, no congestion. These are like the best possible outcomes for what he’s sick with. It feels like all of those prayers for Henry are being answered.

Day 104: You Snoo, You Snooze

It’s Saturday and I got up too late to do light therapy, it rained for a majority of the day, and I didn’t have enough energy to drive even though I wanted to see Baby. I was so tired I basically slept all day except to eat/drink, shower, pump, go to the bathroom, and read in bed. Henry’s doctor said my body must be trying to help me not get sick, so I should rest.

Thankfully Nurse Vee was with him today. She called me with updates. Baby had Tylenol this morning as needed. There’s a new thing in his room, a Snoo (??) bed that responds by rocking him when he’s fussy. At first he wasn’t sure about it, but he’s grown accustomed to it. She held him for 1.5 hours “and loved every minute of it!” He has some new favorite books: Big Bear Little Bear, and Giraffes Can’t Dance. I’m so glad our nurse treats him so well! While the doctor was assessing him, Baby kept his eyes on Nurse Vee the whole time even though she didn’t say anything or draw his attention. They’ve become good friends. He’s taken about 36% of his feeds in the last 24hrs.

His night nurse Annie said he was a sleepy boy for her, but has been taking up to half of his feeds. His hair was extra fluffy at bath time, and he’s been loving life a little more than usual—probably from that Snoo bed that puts him right back to sleep. If Annie wraps him in the bigger tougher blanket like a little burrito he is out like a light haha. I can’t wait to see and hold him tomorrow!

Day 105

Jer and I visited Baby after church. This was Jer’s first time seeing and holding him since Henry got sick and was put in isolation. Doctor got our thoughts on gabapentin again and possibility of going home with an NG tube. I’m getting less resistant to the idea of doing all the home care procedures and extra work in preparing feeds, going to clinics and appointments, etc if it means progressing towards full oral feeds at home. I don’t know how trying to do it myself at home is going to affect my chances at breastfeeding. I’ll still be needing to pump, too. It feels a little overwhelming thinking of all that needs to be done, so I’m glad we don’t have to make a decision today and the providers will all discuss Henry tomorrow.

Read about next week: Week 16!

Check out more weeks from our NICU journey here.

Our Day-After-Thanksgiving tradition of looking for our Christmas tree continues! Peterson Trees in Salem is our favorite to experience the holiday season with the kids.

We splurged on Dutch hot cocoa with all the toppings—whipped cream, marshmallows, caramel, and peppermint. I loved all the spots for taking pictures! They built a series of ramps for kids to be among the trees.

The young man helping us showed me the White Fir whose needles smell like citrus, and the piñon pine which had an amazing fragrance. Evergreens are one of my favorite scents, especially at Christmas! We each took a vote, and came home with a balsam tree strong enough to hold lights and ornaments. I can’t wait for Baby Henry to have his First Christmas at home and watch his eyes widen with delight at all the beautiful lights.

Love, Kat

During Thanksgiving weekend we spent time with two of Jer’s brothers Grant and Travis and their families. They watched a football game on tv and we played games and caught up on the last few years together. The twins loved that Power Hungry Pets game. I was so happy to hear my SIL’s stories from spending a year as a sub and aide in her kids’ school. We learned how my other SIL loves baking and was originally was going to do culinary school and that’s why her food is so good! We also think she could have become a doctor with how interested she is in the body and its systems, and being so in tune with her body.

We had a beautiful feast. Jeremy cooked a 20 pound turkey. Grant’s mother-in-law made creamed corn. Audrey made an assortment of delightful sides, including an herbed hummus with thin-sliced vegetables, perfectly diced pineapple, cranberry sauce, miso and regular Brussel sprouts, creamy mashed potatoes, fresh rolls, and a gluten-free raspberry pie. There was more pie than we could eat! Jeremy‘s Mom made apple pie and brought pumpkin pie and berry pie, and also made stuffing. We are so blessed to have such wonderful cooks in the family.

Happy Thanksgiving!

Baby is 41 weeks corrected gestational age.

Read about last week: Week 13!

Day 92: Sweet Boy

I’m so glad to hold my baby again! He made smiley faces, grumpy faces, and tired eyes at me which I couldn’t get enough of. I wore a mask just in case. I’m so proud of his hard work breastfeeding AND bottle feeding in one session. He’s eaten orally every feed so far, and building stamina. He was so grumpy while my sister and I went to lunch that he pulled his feeding tube out and had to get a new one placed.

My sister visited and held him while I pumped. She watched while I helped him get hydrotherapy and a bath. OT Larissa was so impressed with what a big boy he is! She made us laugh with her saying what Henry was probably thinking: “No Mom, I was so comfortable and don’t want to exercise” haha. Nurse Vee says she can’t imagine him being here much longer with all of his progress. Things are seeming hopeful!

Day 93: Swing Swing

Did I tell you that this kid moved up to Size 1 Diapers while I was out sick at home? Yeah, he’s huge! Still wants his diaper changed immediately, probably from all he went through with bum rashes and sores. His nurse told me he has a favorite book that she reads to him, “I Love You Like No Otter” and a Dr Seuss book about a polka dotted creature “Put Me in the Zoo”. He still loves this Mamaroo swing. I might have to look for one if he doesn’t take to the bouncer his grandparents got for him.

Nurse Vee said he has been getting really good rest today saving his strength. He slept through his noon Cares. He’s been losing weight the last couple of nights, so hopefully the rest will help him grow. We had a good breastfeeding session where he drank 12mL, then next Cares he bottle fed 26mL. I had the best time holding him and I think he missed me just as I missed him with how comfortable we were together.

Nurse Practitioner Anita and I discussed Henry’s bottles. Right now he’s on an “ultra preemie” flow in his bottle which is 3 steps below the level that everybody else starts out with. She says that we will give him until after the weekend to see if he progresses in feeding, and then we can talk about discharge. I wonder how I can better prepare for Baby Henry to be home.

Day 94: Rockstar

Our little boy ROCKED it and breastfed 35mL after hydrotherapy and a bath!! That’s amazing since he is usually wiped out. He breastfed 13mL earlier this morning, too.

Big Sis was my helper through it all. She comforted Baby with a binky through his diaper change, read Fairy Tales to him as he ate, held him while I pumped, kept him secure in the tub doing exercises in a 3-person assist with Occupational Therapy, soaped his hair for his bath, and gave him so much love. Nurse Coldir told me to get this girl a scrub already because she was a pro!

Trudy the Charge Nurse asked if one of the nurses who is also a professional photographer could take a photo of Henry sometime this week or next, and had me sign a release form. They are updating the portraits that line the walls of the NICU, and wanted to see if Henry could be part of it. I think he’s pretty cute and would love to see his picture when I visit! Lily said he’s going to be a model even earlier than she was.

Dr says we are just waiting for Baby Henry to “Feed & Grow”, and the amount of time needed depends on each baby so he just needs some more. Tonight they weighed him, and he gained 57g. He took 38mL from his bottle at his 6pm Cares, and then 33mL for his 9pm Cares so he has been doing very well with eating!

My glider / rocking chair arrived today! It’s currently in a box in the garage while we clean and prepare the house for Thanksgiving guests. Perhaps tomorrow we will be able to get it up the stairs and put together. For now I’m enjoying the mighty help from my sweet husband and kids, who scrubbed the walls / cabinets / stove / floors, and are chipping away at getting our home to some kind of order while we’ve been in “Survival Mode” for the last 3 months.

Day 95: Happy Thanksgiving

It’s like God knew that we were going to be late and cleared all the roads so that it felt like Sunday. Also, I got a front seat parking spot! L commented that I seemed to be in a very good mood haha.

L was thrilled to visit Baby Henry again with me. She shook so much from laughing while holding him that he’d pop an eye open and give her a “what’s going on?” look. We had mashed potatoes and gravy with stuffing from the cafeteria for my pumping and breastfeeding to tide me over until Thanksgiving dinner.

Baby breastfed 18mL in the morning and 20mL during lunch, he’s doing so much hard work! I think he prefers the left side because he didn’t want to eat from the right. He even was a tease and pursed his lips together tightly if I offered him a drink, then smiled.

It took a while to capture this photo, but he made smiles of all sizes at us all morning. I had to show Nurse Monique afterwards with how cute he is! When I was concerned if he actually gets rest while we hold him, she said that he sleeps better while snuggling than being in his bed especially when he’s a newborn age and getting older.

Day 96: Meeting Grant & Ashley

Baby was too tired to try eating at all when I arrived for his 9am feeding. He wouldn’t wake up even a little to eat from me, so we gavaged him while I finish pumping. Nurse Monique said he was uncharacteristically sleepy while she did his Cares right before, too. He bottled around 20mL every feeding last night, so maybe he just needed a break.

Our family visited from Oklahoma for the Thanksgiving break. He met Uncle Grant and Aunt Ashley, who hadn’t held a baby in a long time and were so sweet saying he smelled like New Baby. Jer did a great job bottle feeding him the most he’s done so far: 39mL! Soon after, Grandma Monica came and held Baby Henry who also met her husband Mark.

It’s Friday today, and the NICU announced that starting on Monday the visitor policy would change for RSV season. Instead of 4 people at the bedside there would only be 2. No visitors under the age of 5, including in the waiting rooms. All caregivers (Nurses and staff) would mask when getting in with the babies. They recommended we mask as well, but wouldn’t require it. The number of infections in the community must be high enough that they need to get stricter. Our kids won’t be able to see Baby Henry all at once in the hospital again.

Charge Nurse Trudy says that Henry should be home before Christmas if he keeps it up!

Day 97: Night Visit

We spent time with family in town for Thanksgiving, and had family time Christmas tree shopping during the day, so I visited Baby Henry in the evening.

This sweet beautiful boy only practiced breastfeeding today because he extracted zero during test weights. I pumped for 5mins before we started so not sure if that affected it, but he was sucking and getting frustrated so I suspected he didn’t get anything.

Poor baby had so much gas. I was helping him with bicycles, rubbing his back, rubbing his belly, doing frog legs, and patting him gently. We did Cares and nurse Annie had to weigh him naked, but I left before his feeding. I hope he takes a bottle well.

Day 98: Snow + Siblings

He breastfed 33mL!!! Jenn from lactation (my favorite Baby Whisperer) helped me with emotional support and encouraging Baby. Baby listens to her! She is confident about what he’s telling her. How did she know he was getting milk? Instead of looking for a swallow by the throat, she watched his face and saw his eyebrows go up like he was excited about getting milk. She’s amazing.

He did 46mL bottled at his 3am feeding!!? He does so well when Nurse Annie feeds him- all his 40+ bottles were her. They are going back to glycerin enemas as needed and putting him on prune juice to help with the gas and passing his stools since he’s so grunty making noises working hard on it to the point where it disturbs his feeding and sleeping.

Today was the first time it snowed! I could see the wet large flakes from his hospital room’s giant windows. I had church for the first time at the hospital in the chapel with other visitors and staff, and stayed for a talk and a musical number before lunch. The calzone wasn’t as good as their pizza.

The kids and Jer braved the weather to visit Baby Henry before we had dinner with family in town. Walker held him for the first time and was thrilled. Each sibling held him for 10 minutes. This is the last time they can all be in the same room together at the hospital for visits now that it’s RSV season.

Read about next week: Week 15!

Check out more weeks from our NICU journey here.

Fletcher reminded me each day about how excited he was for our Game Store outing as the time drew nearer. Even though he was getting sick and all of my plans and routine were thrown off not being able to visit Baby Henry at the hospital, there was no way I was going to disappoint this sweet boy. This is the outing he chose if there was only one he could pick from.

We tried a new game called Haven from the demo shelf. Fletcher liked the artwork and after reading the back said it sounded like his style. It took a while for us to set it up and figure out the game play. There were several types of tokens, and confusion as to how we were supposed to determine how to claim areas. I was so impressed that he was so good at remembering the details and figuring out how it worked. We ended up looking up a 20 minute video for clarification, but ran out of time to actually play enough. Normally we would finish out the game, but I was on a time limit having to pump.

The game store didn’t have a copy of the game we could buy and take home to continue, as the employees said that one was donated. He was so brave asking them about it. I told Fletcher we had a $20 budget, and he wasted no time finding a different game he could take home and play. His choice “Power Hungry Pets” seemed like a good pick being 15 minutes long, able to have several players, and a high rating from what I could find online. When we got home and Fletcher showed his new game to the family, he exercised all of his patience not to open it and play because Jer told him to wait until tomorrow. He kept telling me how hard it was not to think about opening his new game, and how much fun he had on our date. I’m so glad he’s such a happy boy who still loves to play!