We’ve been having a few technical difficulties with the blog the last week or so. I think we’ve fixed everything so hopefully the email notifications are going out correctly, and only once now! Sorry if you’ve either missed email notifications or if you got a bunch of notifications for one post. Everything should be in working order now.
I updated the “A Benjamin Update!” post from today because the version that posted wasn’t the latest, so if you’d like another little update be sure to check it out here.
Our little Benjamin is doing fantastically well! We are so impressed with his resilience, but after our month in the hospital we are not surprised how strong he is.
Here’s a little update on Ben:
Ben is on day 5 of a 9 day feeding protocol.
He is being fed breast milk through his NG tube {through his nose} and a combo of electrolytes and fat through his PICC line {a very deep IV}.
Every day the amount of breast milk that he is fed increases based on his weight {there is a specific algorithm within the feeding protocol that dictates this}.
Since he started receiving breast milk he has been gaining weight steadily – most babies lose weight for about the first week after birth, but by day 3 of life, Ben was already gaining weight.
Ben’s birth weight was 1440 grams {3 pounds 3 ounces} and as of last night he was back up to his birth weight! This is a really quick rebound, as most babies, especially preemies, take a week to 10 days to get back to their birth weight.
On day 3 of life, Ben started being able to suck on his pacifier and since then he has continued to work on his “suck” {very important for when he transitions to being bottle/breastfed}. This is a really great sign!
He loves skin-to-skin care and whenever one of us gets him on our chest he is out like a light within about a minute. He is showing signs of being able to regulate his body temperature while out of his controlled environment during the skin-to-skin time, which is a really important step in him being able to come home.
Ben got moved from an open bed to an isolette {pronounced eye-so-let}, which is basically an incubator. It’s harder to interact with him in the isolette {and MUCH harder to change his diapers!} but it’s a better environment for him – it helps him control his body temperature better and it keeps out the noise much, much better, which promotes more sleeping and growing for him. It is VERY loud in the NICU with monitors constantly beeping, babies crying and people talking.
Ben has spent the day today and will spend tomorrow “under the lights” because his bilirubin {jaundice} levels haven’t dropped as much as the doctors wanted. They aren’t particularly high, but they’re not decreasing on their own, so they decided that Ben needs phototherapy, which is basically sitting under the UV lights for two days.
{This is Ben’s isolette – he is always so cozy and tucked in!}
Upcoming milestones:
Wednesday: Ben’s PICC line comes out!!! This is VERY exciting because it means that he’ll be on breastmilk only {they will add a little fortification to it, though}. Then he’ll only have his NG tube {feeding tube through his nose} and then the rest of the wires on him are only monitors.
Friday: Ben will finish the 9 day feeding protocol and be re-assessed for what’s next with his feeding. We spoke to the doctors about how they’ll start introducing the bottle to him and it seems like it’s possible that will happen within the next week or so.
Starting Friday or sooner Ben will begin a new four-phase feeding protocol where he’ll be learning to drink from a bottle. How quickly he progresses through this protocol will determine when he can come home. The hospital is very regimented with how they introduce feeding and we’ll have to be very patient through this process because Ben is in charge and it could take a while.
To help teach Ben how to suck on the bottle they’ve been introducing the pacifier and dipping it in a little breastmilk. Eventually they’ll be able to feed him breastmilk through the pacifier and then transition to the bottle and then breast.
Possibly Friday/sometime soon after his feeding protocol is over he will be moved down to the less intensive care floors.
We still don’t know when he’ll be able to come home, and we likely won’t until we’re within a few days of his discharge. Our fingers are crossed that he’ll grasp the whole eating concept fairly quickly and be able to come home by the end of the month.
The care we have been receiving at the hospital has been exceptional. I am so impressed with how the whole women and infants component of the hospital is run. There are so many support services for us, from the March of Dimes program {supports NICU families} to the lactation specialists, to the Lytle Center {a care center in the hospital designed to support pregnant and new moms} it’s truly incredible. I have learned so much and feel like if I have any questions or problems I will be able to get the help I need. That is making this whole process a lot easier!
We’ve had a solid month of adjusting to an assortment of “new normals” – from my hospital admissions, to waiting in limbo, to now being home but with a baby in the NICU. Each scenario has had its ups and downs, and this one is no different.
I got discharged from the hospital two days earlier than expected because my recovery was going so well. The day of my discharge was a really, really hard day. I was emotional that morning seeing my teeny tiny baby being poked and prodded and realizing that’s all he knows right now is a life in a hospital and that basically broke my heart. And then I had to leave the hospital and go home without him.
Leaving the hospital on Thursday was extremely bittersweet. I was so ready to be home, but I had to leave my baby behind. Going home without Ben was one of the hardest things I’ve ever done. It was overwhelming arriving home without Ben having been with us, knowing that he will remain in the hospital for several weeks. Our homecoming also seemed to coincide with my mama bear hormones changing, so that was fun.
We have been through a lot, but it seems {hopefully!} like the hardest parts are behind us and now all Ben has to do is continue growing and eating and then he can come home with us. Alex found a great way to look at things – we’re just lucky enough to have gotten to meet our baby so much earlier than expected but he’s still got some cooking time where we can come visit him and hold him. That perspective has been really helpful for me and each day has been easier than the last. Today when we were visiting Ben we overheard another NICU mom being told that her baby basically had no brain development and that made me realize just how darn lucky we are. We’re in a tough situation but my goodness it could be a whole lot worse.
In any case, now that we’re home and Ben is still in the hospital and I’m recovering from my c-section, we’ve got a very new normal to adjust to. While my recovery is going very well I still have a lot of limitations {like no driving for two weeks!} and I am taking it very easy, which puts a little added work on Alex to pick up my slack. I’m officially on maternity leave and will be until three months after Ben comes home. Tomorrow Alex will go back to work, which will set in motion another new normal. Alex will work up until around the point that Ben comes home, then he’ll take a portion of his paternity leave through Labor Day.
We’re trying to find a “schedule” that works for us – I’ll be going to spend the mornings with Benjamin while Alex is at work and then after dinner Alex and I will go see Ben again in the evenings. I am providing breastmilk for Ben, so that requires me to pump every 3 hours, round the clock, so don’t be thinking we’re sleeping through the night here without our baby being home!
{The animals have been coming to keep me company while I am pumping in the nursery – I think they’re excited to meet their little brother!}
All in all, we’re adjusting really well to this new normal. The first day home was extremely difficult but every day since then has been fine. We would much rather be in our present situation than have me still be in the hospital awaiting “d-day” {which would have been tomorrow!}. It has been nice to move on from that phase and we are cherishing the time we are able to spend with Ben. We can’t wait for him to come home and shake up our “normal” again!
Our little Benjamin is four days old now! Ben is doing fantastically well and we couldn’t have been happier to hear from the doctor that he is “boring” – that is basically the best news ever.
Ben is in the NICU {Neonatal Intensive Care Unit – pronounced “nick-you”} and will be there for several weeks, potentially until his due date {mid-July}. He is receiving round-the-clock care and supervision to make sure that his heart rate and breathing is normal, that his body temperature is being regulated and that he’s getting enough nutrients to grow and be able to come home.
In order for Ben to be able to come home he needs to:
Breathe on his own {can already check this one off the list!}
Regulate his own body temperature
Eat! {this one is a little more complex – he has to be able to eat from a bottle without his oxygen levels dropping while he’s eating.}
{Ben has a feeding tube through his nose and the picc line is in his right arm. The rest of the wires are monitoring his heart rate and body temperature, then he has an oxygen monitor on his foot. His bed is under a heat lamp so he is constantly warm and cozy.}
Right now Ben has a feeding tube through his nose where he is receiving breast milk, as well as a picc line, which is basically like a very deep IV that is providing him with supplemental nutrients. He’s on a nine-day feeding plan with breast milk, electrolytes and fat and after the nine days are up, the occupational therapist will teach him how to eat {basically how to suck and swallow}.
Every four hours Ben has what’s called a “care time” and that’s where his nurse performs an assessment and takes care of him. We are able to participate in his “cares” by taking his temperature, changing his diaper and feeding him {through his feeding tube}. It’s a really nice way to interact with him and feel involved in his care.
{this is me with Ben’s primary nurse, Megan}
During care time is when Ben is awake. All other times of the day the doctors want him to focus on sleeping and saving his calories. We limit our interactions with him to his care times to follow this protocol and allow Ben to save up his energy. Right now we’re playing around with a two-visit per day schedule that aligns with two of his care times – 8:30 a.m. and 8:30 p.m. Immediately after his care time is a perfect opportunity for us to do “skin-to-skin” or “Kangaroo Care” {This is where Ben is placed on either one of our bare chests and we have “skin-to-skin” bonding time – this helps him regulate his body temperature and when it’s my chest it helps my milk come in, plus it’s an incredible time to connect with him.}. The doctors want us to do at least one skin-to-skin per day for the duration of one of Ben’s sleep cycles, which is a couple hours.
Initially both Alex and I were skeptical of sitting there with Ben for a couple hours – we thought we’d get bored so quickly, but the time actually passes extremely fast and it’s an amazing opportunity to bond with our little guy. It turns out we could just sit there and stare at him all day and not get bored!
{one of the NICU or March of Dimes volunteers made this adorable sign for Ben right next to his bed. Those are his little footprints!}
We are adjusting to our newest normal and will keep the updates coming as they happen, though at this point we really hope we don’t have too many actual updates and more little pictures and documentations of the progress Ben is making in the NICU. We’re hoping for a “no news is good news” scenario for a while!
Alex and I got to meet our little boy, Benjamin Ames, earlier this week on May 31st. Ben was born at 33 weeks 2 days gestation and weighed 3 pounds 3 ounces and was 15 inches long. The story of his arrival, including the days and weeks leading up to it is quite a dramatic one, but thankfully since he’s been in the outside world, all of our lives have calmed down and are forever changed for the better.
After knowing for three and a half weeks that our babe had a “growth restriction” in utero and spending two and a half of those weeks in the hospital we had mentally prepared ourselves for pretty much anything. Throughout that time, the baby was being regularly monitored to keep track of his heart rate, the amniotic fluid levels and the flow restriction and rate from his umbilical cord. We knew at any time if any of those elements changed for the worse that we would get to meet our baby. The doctors were simply waiting for the moment when the tables turned and it became safer for our babe to be born than to stay inside.
{my hospital room – on my third and final admission I spent 14 nights here.}
The evening of May 30th was a rough one for me and the baby – I was hooked up to the monitors for several hours throughout the night and kept having contractions. The baby couldn’t handle the contractions very well, so the monitor was picking up an unusually high number of heart rate drops that night. It was really stressful and I was uncomfortable and nervous about the situation. The next morning I had an ultrasound and the results showed that the amniotic fluid levels were at the very low end of normal and that there was an absence of flow from the umbilical cord. The doctors made a quick decision based on the ultrasound and the baby’s heart rate from the night before that it was time to deliver the baby.
{my nurse, Kay, prepping me to go in for delivery.}
I had about two hours from the time they made the decision until the time I was in the operating room, so it didn’t feel terribly rushed. And yes I’m being serious that I didn’t feel rushed – my hope for the situation was that I had an hour and that it wasn’t an emergency, and I had both! Alex and I had a couple moments to ourselves to process what was going on and we got to let our parents and a couple close friends know that we were going to meet our baby that day.
The whole process of delivery was really surreal. The nurses had prepped me in advance to know what to expect for the c-section and that was really helpful for me. Because of the baby’s prematurity there was a whole crew of people in the OR waiting for him to arrive – the neonatologist, a few nurses for the baby, a respiratory therapist for the baby, plus the anesthesiologist and the surgeon and nurses and all of the residents and fellows who were assisting {I was at a teaching hospital} in the process. I think there were probably 12 doctors and nurses altogether.
Everything happened rather quickly – once I was numb it was really less than 30 minutes until the baby was out. I was really just laying there and all of a sudden I heard “they know it’s a boy, right!?” and then the baby let out his first cry. A few moments later they carried the baby over to a baby bed to assess him and make sure he was okay, meanwhile he was crying the whole time, which was terrific to hear because I knew it meant that he was okay. It was an overwhelmingly emotional moment knowing that our baby had been born.
Benjamin Ames Allen was born at 11:21 that morning. His Apgar scores were 8 and 9. He weighed 3 pounds 3 ounces and was 15 inches long with a 29 cm head circumference. After they did the initial assessment of him they wrapped him up and brought him over to see me briefly before they took him up to the NICU.
Alex went up to the NICU with Ben while I stayed in the operating room getting put back together and then I spent a couple hours in a recovery room. It was a really weird experience for me because everybody just kind of left and I was just hanging out getting stitched back up.
Alex got to participate immediately in Ben’s care and learn first-hand what was going on with him. Because of Ben’s prematurity he will be staying in the NICU for a while – they’re not able to give us an accurate estimate yet because they’re still evaluating him, so for now they’re saying we should plan for him to stay until his due date.
So far, in Ben’s first 72 hours of life he is showing tremendous strength and is doing exceptionally well. We’re not surprised with this at all given how well he put up with the less than ideal circumstances while he was in utero. We had two names picked out for him {no we aren’t sharing the other one} and we opted for Ben over the other name because it’s a more easy-going, calm name and we felt like throughout this whole situation he was so resilient and strong and just kept right on going even though his environment was really awful. We think he’s going to be one tough little cookie who will keep rolling with the punches. As for his middle name, Ames, we chose that because Ames is the town that Alex and I met in Iowa.
We are so proud and overjoyed to be Ben’s parents and to have gotten to meet him already. While the circumstances surrounding his birth have been stressful and extremely difficult we are treating the situation like we’re getting a little sneak peak into meeting our kiddo early while he’s still “cooking” in the NICU for the rest/most of the rest of the third trimester.
The newest member of the Allen family has arrived! Our little peanut, Benjamin Ames, made his way into the world at 11:21 a.m. on May 31st, more than six weeks before his due date. Alex and I are over the moon and can’t wait to introduce him to our family and friends!
Ben was born at 33 weeks 2 days gestation and weighed 3 pounds 3 ounces and was 15 inches long. His apgar scores were 8 and 9. He may be a tiny peanut but he sure is mighty.
Being a preemie, Ben is requiring some special care, though no immediate interventions were needed right after his birth. About an hour after delivery the doctors put him on a very low dose of oxygen, and we were informed that has been removed already as of today because he is doing so well.
He is currently in the NICU at the same hospital I’m recovering at. We don’t know how long he’ll be there for – at the longest, until his due-date {mid-July} but it really could just be for a few weeks. At this point he’s hanging out in the NICU staying warm and plumping up – growing and feeding, they say! Alex has been able to go back and forth to visit Ben quite a bit and I’ve made two trips up to the NICU. Today will be the first day we’ll get to do skin-to-skin and hold him!
My recovery is going really well so far too. Ben was born by cesarean section, which makes for a little bit longer of a recovery and hospitalization. We’re taking things one step at a time right now and cherishing the little moments with our Benjamin.
Stay tuned for Ben’s birth story and more updates 🙂
There have been numerous occasions over the last three weeks where I didn’t ever expect we’d make it to 33 weeks, but here we are!
I’m still in the hospital and will remain here until we meet this little fella. Our latest plan includes the scheduled c-section on Monday June 6th. Unless he needs to be delivered sooner, June 6th will be the very end of the pregnancy for sure. Our most recent doctor said that will definitely be the end of the road and given the situation she doesn’t think that he would have any benefits inside past 34 weeks.
My last bit of news is that I did have the second course of the steroid shot, which helps mature the baby’s lungs and preps him for delivery, so at any time now, the steroid is at full-strength and ready to work. This is an extremely important outcome predictor and will greatly reduce his time in the NICU.
Our doctor yesterday mentioned that if we do, indeed, make it to 34 weeks for my scheduled c-section that the baby would likely only need to be in the intermediate nursery {lower level of care needed for baby than the level 4 NICU} for a few weeks – maybe even only one or two, and that I might be able to hold him right after he’s born!
We are still really optimistic that we can make it another week and a day before meeting this little boy. Here’s to him cooking for another 8 days!
I’ve officially been living in my hospital room for a week now {plus the 5 days I spent on my two previous admissions…….} and it’s looking like I’ve got about 2 more weeks to go. So yeah, it’s been a fun month of May so far!
Alex and I are extremely fortunate to be in such a great place and have the ability to rely on modern medicine and have a really good outlook for our situation. Still, though, it’s not been an easy last three weeks for our little family, but we’re making the best out of the hand we’ve been dealt.
Now that we’ve been here for so long we’ve been able to get into a rhythm at the hospital most days. That will soon change a bit with Alex planning to go back to work next week for a few hours a day, assuming the baby remains stable. We have plenty of things to keep us occupied and my time on the monitors also helps fill the day.
Alex’s parents were kind enough to come out to help us at home while we are being pulled away. Both of his parents are officially retired and they also have a golden retriever, so naturally, they were the right folks for the job. It has been really helpful having someone stay at the house to keep Jackson and Henry company and well-cared for, not to mention they both are unable to sit still so they’ve been cranking out projects left and right! {I’m hoping they’ll take some time for themselves to relax though! Hint, hint..} We are so appreciative of them coming out to help with the pets and our house.
We have SO loved the visitors who have stopped by the hospital – it’s nice to see familiar faces who aren’t coming in to poke me with another needle {or wiggle the IV needle profusely in my vein and then decide that another vein would be better}, ask if I’m constipated yet, or wake me up at 4 a.m. to take my blood pressure. Sorry, I love {most of} you nurses, just let me sleep for the love of god.
One of these days I’ll get to go back home again. While I’m learning there is a lot I took for granted, my home is not one of those things. I’m fairly certain that every morning when Alex and I are sitting down for breakfast we marvel in how proud we are of our home and how much we love it. Not being able to go home has been by far the hardest part of this journey. While I love adventures, traveling, and exploring, I’m definitely a homebody. It’s almost harder that our house is so close to the hospital – maybe they won’t notice if I sneak out?!
The constant ups and downs and changes of plans haven’t been easy, either, but we’re certainly adjusting to the ebbs and flows of this predicament. We’re opting to remain upbeat and ready for anything – we wouldn’t get through this situation any other way. We realize that we are in the backseat – make that the trunk – and have no control of the road we’re on. We can visualize the destination, but we don’t know how or when we’ll get there. All I can say is thank you, again, for all of the support and encouragement in this unexpected situation. We are SO fortunate to have so many terrific friends and family members.
Today we got a new doctor {our “doctor” is whichever doctor happens to be on the floor at a given point in time – usually they rotate every few days, so we’ll have the same doctor for a few days and then a new doctor the next few days} and a new plan!
This new doctor seems less “optimistic” from the standpoint of us getting to 36 weeks and he said between 34-35 weeks is going to be the end of the line. That’s totally fine with us and is in line with what we’ve been expecting and hearing for the last week or so. This doctor actually went as far as suggesting we schedule a c-section date because, somehow, they are quite tricky to schedule. And it turns out he was right! I had 3 options to choose from the week of June 5th.
So, at this point, my scheduled c-section is Monday June 6th. And yes, it’s 6.6.16 and no, we don’t care. It’ll be easy to remember and I actually like the flow 🙂 I looked up the number 6 and its numerology story and it is actually a pretty cool number – my favorite is the Chinese “lucky number six” that means smooth and well-off, plus, mathematically speaking, 6 is a perfect number. Pretty nifty! And it is not only our potential “d-day” {delivery day} but it is actually d-day from the WWII sense.
Bear in mind that just because the 6th is our scheduled d-day doesn’t actually mean that’s when the baby will be born! It is simply a possibility. If he happens to hold out until that week we’ll possibly re-evaluate once we approach 34 weeks {which is on June 5} and it could potentially be postponed if he’s doing really well still. Any of my monitoring – the ultrasounds or heart rate monitoring – can trigger a delivery, too, so, while we have a scheduled date, it’s not a firm line in the sand.
This new doctor today wanted me to get the steroid shot again {this preps the baby’s lungs for delivery and helps them develop} right away since I’m able to have it again, so I did my second round of that today.
The doctors agree that the babe is still stable and showing signs that life in utero is still okay, so, for now, we wait. We’re still keeping busy at the hospital – I’ve had a different visitor every day and we’ve been working on a puzzle and both of us have been working remotely. We’ve found a few things on Netflix to watch during my monitoring sessions to help pass the time, as well. So, we’re hanging in there okay!
We hit our next milestone today: the growth ultrasound! We received some very unexpected but fantastic results from the doctor: the baby grew and he grew at the rate he should have grown at!
Here’s the scoop:
Baby is still below the 1st percentile and always will be unless he grows at a rate that is faster than the “expected” growth rate.
The ultrasound measured that the baby made adequate interval growth, meaning he grew 2 weeks of growth in 2 weeks time, which is what the doctors would expect a baby to make.
While the levels of cord flow resistance are still elevated, today they’re not seeing an absence or reversal of the cord flow, which is extremely good news, as well.
The ultrasound estimates that the baby weighs 2 pounds 13 ounces today.
There is a 10-20% margin of error in ultrasounds…
What all this means:
Baby can keep cooking away for a while longer!
The doctor was extremely encouraged by the ultrasound today, in particular, his growth and the fact that the cord flow is stable and not worsening.
The regular heart rate monitoring that I do several times a day will continue to be the primary source of monitoring and ensuring that the baby is doing okay inside. I have been having more regular contractions and baby does not like them, so he’s been having more drops in his heart rate, but the recoveries after the drops and the time in between drops are still looking good enough to keep him in there for now. The heart rate monitor could only send me to delivery if he had a major drop and wasn’t recovering, or if the monitoring strip is trending in a negative direction, but that would be less of an emergent situation.
Our doctor said that at her practice she is one of the most conservative doctors and takes the least amount of risks and it is her intention to keep this baby inside for as long as possible. She’s even thinking at this point we could make it past 34 weeks if things continue to look so good.
Because the doctor thinks the baby might stay inside longer she is going to hold off on administering the second round of the steroid {which preps the baby’s lungs for delivery} until either we make the call for delivery or until the end of the window in which the steroid can be administered {has to be before 35 weeks}. This is really good news because it means she doesn’t expect he will be arriving soon.
We are extremely happy with the results of the ultrasound. If we could make it to 34 weeks or beyond that would be absolutely incredible for the baby! And at 34 or 35 weeks, we could avoid the NICU potentially, and the baby could simply spend some time in the intermediate nursery until he gains a little weight and masters eating.
With all of the great news, we also talked to the doctor about Alex being able to spend less time at the hospital. Alex has been unbelievably supportive in this situation and has slept here in my room every night and stayed for most of the day every day to be with me. The doctor was really confident in the baby’s monitorings and overall stability and said that Alex can definitely have a longer leash away from the hospital. He’s going to try to figure out a balance of home, hospital and work now, and will start going into work between my morning and afternoon monitoring and be able to have a little more sanity. I’ll take one for the team and hang out at the hospital until the kiddo arrives, though 😉
Next milestones:
Sunday {May 29th}: 33 weeks
Monday {May 30th}: next biophysical profile ultrasound {measures cord flow}
Sunday {June 5th}: 34 weeks — could we have a June baby after all!?!
