When Alex and I brought Ben home from the hospital we decided that our first week would be spent figuring out how to be Ben’s parents. We knew it {and every day hereinafter} would be a period of trial and error and simply getting to know Ben and his needs, and that’s exactly what it was. We’re {obviously} still learning, but we’ve learned a lot in the first ten days we’ve been home with Ben.
We’re still in our first week of being home with Ben and I’m pretty sure we couldn’t be happier. It is an incredible feeling to actually, finally be at home with our baby.
We have been enjoying seeing, holding, feeding and hanging out with our baby whenever we want to, without supervision from a nurse and without having to hear the monitors ding every 4.23 seconds. We can change his diaper without having to worry about the 4 wires plus his ID tag. We’re in our own space that is comfortable, familiar, safe and judgmental free. It’s pretty amazing!
Ben is thriving in his first days at home – he is up to 5 pounds 2 ounces as of today! He had his first pediatrician appointment on Tuesday, two days after he returned home, and she had only great things to say about him and was impressed with how well he’s doing. She wanted to see him again in two weeks {instead of the standard four} for a weight check to see if we might get to discontinue fortifying his milk at that time since he’s growing so steadily and well.
The major concern of the doctor’s in the days leading up to Ben’s discharge was his ability to safely drink from the bottle, and so far, since he’s been home, we have been completely comfortable and confident in our ability to feed him. I look forward to that time now, instead of dread it, and it’s such a nice time to bond with Ben. Ben’s maturity has dramatically improved since we’ve been home and we don’t have to micromanage him eating nearly as much as we did a few days ago.
We’ve really started getting to know Ben and his personality in the last few days. He’s super calm and content – sometimes we’ll pull up the monitor and he’ll be just laying in his crib hanging out, making cooing noises. He really only cries when he has a dirty diaper or if he’s super hungry. Otherwise, he’s really laid back. We’re crossing our fingers that stays the same!
We took the first couple days to see how much Ben wanted to eat and we got a baseline {we’ve got a really great app that tracks how much he eats from the bottle or by nursing, how much I pump and his diaper count} and now we’re slowly trying to build a little feeding routine. Last night we were able to feed him at 10:30 p.m., then again at 2:30 a.m. and then not again until 6:30 a.m., so he only woke up once in the middle of the night! We’d love to keep that up for the middle of the night feedings.
One of the best parts about being home so far is the freedom. We’re on our own schedule {ok, let’s be real, we’re on Ben’s schedule} and no one is telling us what to do. We don’t have visiting hours at the hospital – we can see our baby whenever we very well please, and better yet, we can take him out and go toot around town.
When we were going through our NICU time one of the things that kept me sane was dreaming of our summer together. I mostly dreamed of taking walks together as a family through our neighborhood and around the city. We are so fortunate to live in such a beautiful place and I envision our summer being filled with lots of time outside.
So far since being home, Ben has gotten to meet a few of our friends, including 3-day old baby Claire! We are slowly welcoming healthy, adult {and infant} visitors. Ben still needs to spend most of his days sleeping, so we’re being very mindful not to cram too much into one day, plus, preemies can get overstimulated very easily and we need to avoid that.
All in all, Ben is doing really well and so are his parents! We are so grateful to be home together as a family and are so looking forward to the summer.
Now that Ben is home with us it feels much more like we are a family. Life is so much calmer, we’re so much happier and everything feels normal and natural. We are so overwhelmingly happy to be home!
On Sunday morning we found out that Ben was getting discharged, and by some miracle, our nurse was able to expedite the process and we were out of there before 9 a.m.! As it turns out, our doctor basically wanted to make sure we were competent parents and would be able to feed Ben safely while he is still maturing. Thankfully we passed his test.
Walking out of the hospital with Ben in tow felt so incredibly liberating. We were free to start our new life together as an independent family!
Because we didn’t want to jinx anything or get our hopes up we really didn’t talk about what to do when we got home on Sunday. We spent a while getting settled and introducing Henry and Jackson to Ben, then we enjoyed a relaxing day at home, took Ben on a walk around the neighborhood to show him around, and celebrated with a bottle of bubbly rose on the porch. The weather is just turning into summer now and we were welcomed home by a gorgeous day with an absolutely picture perfect forecast to follow.
We’re still trying to figure things out with Ben, but so far everything is going really well! He is eating SO well and we have a newfound confidence, enjoyment and comfort in feeding Ben now that we’re at home.
Ben is going through a growth spurt and has been having cluster feedings the last two evenings, so that’s throwing us for a loop with trying to figure out a quasi-feeding schedule for him {and also keeping a stock of clean bottles on hand!}, but he has been sleeping really well in between feedings. It’s really hard to know how much to feed Ben and when, given the cluster feedings, but he is eating an enormous amount, so at least we know he’s getting enough to eat.
Our major focus right now is enjoying our time at home as a family. Alex and I are extremely fortunate to have the rest of the summer off of work to spend time together with Ben. We are so excited to go for walks around our neighborhood, take Ben to some of our favorite places in Washington and simply be together and create memories.
While the last seven weeks have been really, really tough, every cloud has a silver lining. Alex and I got to spend so much time together and this experience only brought us together. After what we’ve been through we have a really different perspective on parenting and will have a different outlook on difficult moments, I think, and I really feel like we’ll stop and enjoy the little things more than we would have if everything would have been sunshine and rainbows.
In any case, Benjamin is home and healthy and we feel strongly that he will continue to thrive. We are so extremely grateful for the summer ahead of us and that Ben is home safely.
Alex and I are also grateful for the encouragement, well wishes and support from our friends and family near and far. We are so thankful to have our little “Seattle family” support network – it really made the situation more bearable knowing how many people were rooting for Ben. We can’t wait to start {slowly!} introducing him to everyone!
Benjamin came home today! All is well and we couldn’t be happier. I’ll post more about his homecoming and discharge once we get settled.
Today marks day 26 in the NICU. We probably won’t know for sure when Ben is coming home until the day he is discharged, but we do know we’re in the homestretch. Ben is doing fantastic, amazing and superb and is SO close to being ready to go home.
This last week has been filled with some of the more frustrating days and experiences in the NICU and I haven’t had the energy to talk about them. Now that we’re so, so close to having Ben come home it’s gotten harder and harder and the hospital experience has become less tolerable. We’re worn down, stressed out, exhausted and ready for Ben to be home, but our heads are held high and we’re staying positive and encouraged by how well Ben is doing and how close we are to bringing him home.
One of the difficult components of this last week has been that while he finished his “feeding pathways” feeding plan super fast and super strong, the doctor changed the rules that the nurses were going off of and said that Ben actually isn’t ready to come home yet. There was a major communication breakdown from the information the nurses were giving us to the information we were hearing from the doctor. The reason Ben hasn’t come home yet is because while he’s being bottle fed sometimes his heart rate drops because either he swallows too much milk or he hasn’t coordinated breathing along with sucking and swallowing, which is something that mature, full-term babies do.
The doctor wants to make sure that we’re competent and comfortable feeding Ben because when we take him home we won’t have the support of the nurses and hospital staff in case he chokes. So, what he’s waiting for is either for Ben to mature a little bit more and develop the rhythm of suck, swallow, breathe, or for us to be completely effective at feeding him without him having any heart rate drops. Now that we have a little context to the feeding situation it has put a little more stress behind it, because while we originally were told that it’s not a big deal that he’s having heart rate drops while eating, it actually really could be a really big deal after all.
One thing putting our minds at ease is that today Ben tried nursing for the first time. I have several friends with preemies and small babies and nursing has been really difficult for many of them, so I anticipated it would take a lot of patience and several tries. The feeding plan that Ben was on was not friendly or conducive to breastfeeding, which was extremely disappointing, so I had put off trying to start until Ben got home. Now that he’s done with the feeding plan and we’re still in the hospital and have the support of the lactation nurses I decided to give it a try today.
I was floored how well Ben did – on his first try he had a full feed and his heart rate and oxygen saturation rate stayed completely constant and normal throughout the feeding and he did amazingly well. We won’t be able to exclusively nurse him for a while because he needs some fortification in the milk to provide extra calories so he gains weight at a slightly more rapid pace. It was so encouraging and rewarding to have this experience today.
We are currently “rooming in” at the hospital with Ben, which is basically the last stage before discharge. What that means is that Ben was moved to a private room {hurrah!!!} and we’re staying here with him {well, at least one of us is} likely for the duration of his stay in the hospital, and providing all of his feedings and care while only receiving light supervision and guidance from the nurse. Thankfully his primary nurse, Megan, is here all weekend. She has put our minds at ease and it’s been refreshing to see her. She is very confident in our abilities and it’s her intention to be our discharge nurse this weekend.
Finally, there is light at the end of the tunnel. We are so unbelievably excited to get Benjamin home and begin our life together. The last seven weeks have been quite trying and we have put our life on hold. We won’t ever have the same life we had before this all started, but we can’t wait to start a new one together, in our home, as a little family of three.
I’ve shared a lot about how Ben has been doing and in turn it gives a little bit of background to our NICU experience, but I really haven’t talked much about what it’s like to have a baby in the NICU. Ben has spent 20 days in the NICU so far, and some of them have been easier than others, but until you have a baby in the NICU you really can only imagine what life is like.
We were lucky in that we knew that Ben would be born prematurely and that he would have some time in the NICU. Not all babies come out healthy, and we met some parents who had really big, full-term babies with normal deliveries, but who didn’t come out healthy and had to have an unexpected stay in the NICU, and then another whose baby arrived out of the blue at 26 weeks gestation. At least we had time to take a tour of the NICU, speak with a neonatologist and try to mentally prepare ourselves for what the journey would entail.
But in reality, it turns out there’s really no way to prepare yourself for life in the NICU. And there’s no way to prepare yourself to leave your baby behind when you get discharged after delivering him. And then again every single time you go visit him. Some days were easier to say “see you later” than others, and a lot of that depended on the nurse and how much confidence we had in her ability to take care of our little boy. One evening we had a nurse who we thought was unfriendly and incompetent and I spent our visit with Ben sobbing and dreading leaving him overnight with this particular nurse. I figured she really wasn’t incompetent, but she didn’t leave me feeling confident in her nursing skills.
On the flip-side, we got to know several nurses who are extremely talented and compassionate. One of the nurses we regularly had so obviously cared for both the babies, but also the parents. She was very hands-on and when the parents weren’t there she would talk and sing to the babies and make sure they were getting some love. She is an excellent nurse.
My favorite part of the day is snuggling with Ben. While I wish it was at our house and on our terms and with our blankets and without all of the wires attached to him, I am grateful for the time I get to spend with Ben. Alex loves being involved in his care and feeding him, as well, though he doesn’t get to spend as much time with Ben during the weekdays. It’s really hard having such limited time together and the visiting schedule is tough and leaves us exhausted.
We have to plan our visits around his care and feeding schedule, as well as my pumping schedule, which means I have to be there by 8:15 a.m. {and get on the bus at 7:40 — I’ve been taking the bus because the cost of hospital parking is really expensive and for the first two weeks I couldn’t drive}, and then for our evening visits, we arrive at 8:30 and stay until around 10 p.m. – it makes for some very long days in the hospital. We’ve gotten into a good routine now, but as his feeding plan evolves this week I am positive it will change.
There is constant change in the NICU – we’ve got our primary nurse, who is fantastic, but when she isn’t working we never know which nurse we’ll get, and almost every shift besides when we have our primary nurse, Ben has a brand new nurse who we have never met. It makes it tough to get in a groove, plus each nurse does things differently, has a different schedule and a different interpretation of “the rules” for the feeding plan.
One of the more challenging NICU experiences for me has been Ben’s current feeding plan. I absolutely hate it. It’s a four phase plan, where he has to meet a particular feeding goal each shift for four consecutive shifts, and if he doesn’t “pass” then he has to start that phase over again. We’ve found that some of the nurses are a little more lenient on this than others, but what I hate is that Alex and I are learning how to feed Ben and it’s very, very particular how to feed such a tiny preemie.
I don’t want my inexperience to be what sets him back and makes him have to start the phase over again. I also really want Ben to start learning how to breastfeed, but he’s not going to be able to pass right away, therefore he would have to start the phase again, which delays his discharge, so it makes me not want to try to start breastfeeding him until he comes home. It’s extremely frustrating, makes me crazy and stresses me out.
That said, though, the nurses and the occupational therapist have taught us how to feed Ben and it is so rewarding to be able to hold a bottle for him and watch him learn how to take a bottle. He is making progress every day and each time we visit him we notice something new.
There is so much noise and commotion in the NICU. Each baby is hooked up to a number of monitors that measure their heart rate, oxygen levels and breathing rates. Every time one of the numbers is high or low or has a bad signal the monitor goes off and beeps. Instinctively we’ll jerk our heads to look at the monitor and look to see if it’s Ben having a “brady” {heart rate drop} or a “desat” {desaturation in his oxygen} and thankfully it’s rare that it’s Ben. Basically it’s constant beeping in the NICU and after we’re done in the NICU if I hear those beeping sounds I’m sure it’ll trigger my hospital memories.
While it’s tough to go through this, I have a feeling we’ll come out on the other side and remember it as a little blip on the radar. We’re also really, really lucky in so many ways about our situation — Ben was never sick and there was never anything wrong with him, he just needs to grow and learn how to eat. We consider ourselves fortunate for how easy we have the NICU situation compared to others.
Overall, it has been a pretty surreal experience. There’s this adorable little boy who I gave birth to and who we’re crazy about and think about and talk about constantly, but it feels like we only have visitation rights to go see him every day and be sort of involved with his care and day-to-day life, but then we go home without him and come back later to visit again. It’s really, really strange.
Ultimately, Ben is receiving really terrific care and has a team of experts working to make sure he grows and learns how to eat and is really ready for life at home before they release him to us. We are extremely grateful for the medical team and most of them have made the NICU time easier. We’re starting to see the light at the end of the tunnel and think he’ll be home before we know it.
Time is flying by {thankfully!} and our little boy is two weeks old! We have had so much fun getting to know Ben and seeing his personality start to show – he’s such a character already. We can’t wait to continue watching him grow up. One of my favorite things about Ben is how expressive he is – he’s always making some ridiculously cute/funny face – it’s hilarious sitting there watching him. He is an extremely content baby – he seldom cries and seems really chill – hopefully that keeps up!
Here’s what’s going on with Ben:
I’ve been meaning to write this post for nearly two weeks now, which is a perfect segue into saying that holy cow there is not enough time in a day right now! For Alex, he’s juggling managing Jackson, going to work full-time and coming home, eating dinner and then going to the hospital to see Ben. I really thought I had more time but when it comes down to it, I really don’t at all! I spend four hours of my day pumping, about six hours visiting Ben, an hour napping, at least an hour, if not two, cooking/eating and then the day is basically accounted for.
My point in writing this is because so many of you have been so kind and thoughtful about checking in to see how Ben is doing and it is taking me forever to respond to texts and emails and especially phone calls. So, thank you for making sure we’re hanging in there {we are!!}, and I apologize if my response time is ridiculously long. I can’t imagine it will get any better once Ben comes home – maybe? But probably not!
Anyway, bear with us! We’ll get the hang of our schedule eventually…
Ben’s nursery is all ready for him to come home to! We just love how well everything came together in his room. The theme we were after for his nursery was a modern mountain theme, which sort of comes across, but mostly it’s a calming mix of grays, blues and whites with a few mountain accents here and there. Eventually we’ll add some more mountainy things to the space.
When we embarked on creating this nursery we were thinking that the room would be a great size, but it turns out, babies come with a lot of stuff and we quickly realized that a room twice this size would have been ideal. We’ve been really creative with storage and have employed some cute storage baskets and are using the space under the crib and in the closet for extra storage. The trouble is that we don’t have a coat closet in our house and Ben’s room will remain our coat and ski storage closet, in addition to his clothes closet, so it’s a multipurpose solution.
I’ve been spending a lot of time in this comfy chair lately! Even though Ben isn’t home, I’m still providing breast milk for him by way of pumping, which I have to do every 3 hours round the clock. I have my little set up here and love spending time in the nursery.
One of my favorite parts of the room is these prints above the dresser. We hope that Ben loves the outdoors as much as we do! The dresser is stocked full of diapers, wipes, PJs and all of the necessities we could think of for Ben. Next to the dresser we’ve got a cute little basket filled with blankets and swaddles ready to grab at a moment’s notice.
I am so excited to start reading these wonderful stories to Ben when he comes home! We received a ton of books as gifts for Ben {so many that we have an overflowing storage basket filled with books too!} and I really can’t wait for story time together. I love children’s books and as soon as he gets home we’ll start plowing through these great books.
We’re not sure yet when Ben will be able to come home, but when we get the green light, his room will be ready for him! Our fingers are crossed that he’ll be home sometime in June…
…Ok so he’s a week and two days old now – I can’t keep up with the posts!
Ben is doing amazingly well and has had a really, really good week of growing, eating and sleeping – his three primary goals in life right now.
Here’s the latest on Ben now that he’s in his second week of life:
Upcoming milestones:
Overall, Ben is doing really well! Again, his life goals are eating, sleeping and growing and that’s exactly what he’s doing. I’m spending several hours with him during the day, primarily doing skin-to-skin, and then we go back for a visit with Alex after he gets home from work. While we’d rather he was home, it’s clear he still needs to learn how to eat before it’s safe for him to be here with us. We’re crossing our fingers that he’ll be home by the end of June, but that’s up to him to decide.
