survivingmyboyz

tales from a stay-at-home mom of four boys

Archive for the month “May, 2014”

Running on empty

Last night I got almost four and a half hours of sleep. That would’ve been a good night, if those hours of sleep had been consecutive. Instead they were broken up into segments ranging from 10 minutes to one 90 minute segment. That just doesn’t work for me. The problem is, it has to work for me because right now, my sleep isn’t going to get much better.

Now that my littlest guy is home from the NICU on his feed tube, the main focus of my life is feeding him. I have to feed him every three hours. Feeding him takes about an hour and a half. We have a little routine, diaper change, outfit change (if necessary), take temperature, heat bottle, attempt bottle feeding for 30 minutes, hook up machine, tube feed for another 30 minutes, rinse machine’s tubing, keep him still for about 15-20 minutes so he doesn’t throw it all up due to reflux. That leaves me about a hour and half before I have to start all this again. In that hour and a half, I have many things that need to get done. I have to pump fresh milk, clean bottles, make fresh bottles, feed my other children, feed myself, get kids to and from school, go to the bathroom, you know, some of the millions of things necessary to keep life going. This doesn’t even leave time for household chores or showers. It is a non-stop job and all of it is done on very little sleep.

I definitely love having my littlest guy home and wouldn’t trade it for any amount of sleep, but I sure would appreciate him learning to eat so we can stop dealing with this whole tube thing. In the meantime, I’m just drinking as much coffee as I can and continuing to keep going, as brain-dead as I am, and I pray things will get easier soon. After all, it has only been a week and I’m totally running on empty already.

Learning to swim in a new pond of chaos

It has been just under 72 hours since my littlest guy finally came home from the NICU. He left there on his 77th day of life, all having been lived in the NICU. He weighed 2lbs 12oz when he was born at 31 weeks and left there at 11 weeks (2 weeks adjusted) weighing 7lbs 2.7oz. We are so excited and happy to have him home, but it has also been a big adjustment that has been marred with difficulties. The past 72 hours have been stressful, exhausting, chaotic, and filled with joy.

My littlest guy still isn’t able to eat like he should, so he came home with an NG feeding tube still in and a pump to gavage feed him meals he is unable to finish or eat. My husband and I had to be trained on how to set up and run the pump and how to replace his feeding tube incase he pulled or spit it out. As unfun as all this is (and a little scary), we were willing to do whatever we had to to get him home. We knew that, despite how many fingers we crossed, eventually we would have to reinsert his tube for one reason or another. We also knew that it would take time to become pros at all this, after all, we didn’t become NICU-pro parents over night either. We didn’t, however, expect to be tested by everything all once once.

Here is a little break down of our first few days home:
Thursday late afternoon, we got home with our littlest guy. We had about 20 minutes until his next feed, so we brought all the stuff from the hospital into the house and began setting it up just after being greeted by our older boys, my parents, and a few neighbors. I got a bottle ready for him and began to go through all the things the hospital taught us to do before feeding him; change diaper, check his temperature, and check the placement of his tube by checking his residuals. By the time I began to bottle feed him, we were about 15 minutes late on his feed, which wasn’t too bad, it happened at times in the hospital too. I began to bottle feed him, but it had been such a big day with his homecoming that he tired easily and needed to be tube fed the rest. This is when we hit our first major snag. As soon as the machine was set up, the milk was in it, and we were ready to start, we received an error message. I figured we had done something wrong trying to set it up and get it ready, so I called technical support. They had someone call me back 10 minutes later to let me know that the code meant that, despite it being a brand new machine and this being the first time it was ever being used, that code meant it was broken and couldn’t be fixed. Awesome! So they were going to send someone out with a new pump but it was now rush hour and they were coming from about 30 – 40 minutes away, so to would be at least an hour. Oh great, we were already an hour past when my baby was suppose to eat and he hadn’t eaten much by bottle. Since there was nothing I could do about it, I just did my best to try to get my son to take some more bottle. An hour came and went and then so did the time for my son’s next feeding. By the time the guy got to us with the machine, it had been about three and a half hours since the first call and my son had missed two feedings. Not a good way to start his in-home experience.

After that, we had to feed him late and then try to get him back on schedule. He is suppose to eat every three hours, so we had to shorten the time between his nighttime feeds to 2-2 1/2 hours to get him back on schedule by morning. So on his first night home, we had to get up even more often than the norm. That coupled with it being our first night doing all this and the learning curve, causing things to take a little longer, we got very little sleep. It also didn’t help that my second youngest son woke up several times around 1:30 and had a hard time going back to sleep and then my two middle children were up 40 minutes before we needed to do the morning feed. I’m pretty sure I only got three hours of non-consecutive sleep that night.

The next morning, my poor husband had to go to work and I had to take the baby to a doctor’s appointment. The doctor’s appointment was at 10am, which was when one of the baby’s scheduled feeds was for, so I had to pack the pump up and try it out on the road. I wasn’t exactly excited about this since things with the pump hadn’t gone so well the day before. To add to things, despite keeping my littlest guy’s hands mittened in his sleeves so he wouldn’t pull his tube out, he managed to spit it out, along with a lot of spit up, after his 7am feed. So we pulled the tube out and I figured I could just have the doctor help me put it back in. Things ran long at the doctors, the tube went in easily for me, but I was an hour late trying to feed him. On top of this, I couldn’t get the pump to work portably. I was frustrated, tired, stressed, and worried for my baby. I rushed home and tried to hook the pump back up at home, but still couldn’t get it to work. After another call to technical support, I was able to get the pump working, but by then, it was only a half hour before his next feed, so he had missed yet another feed. The rest of that day was spent with my other kids making demands of me as I tried to feed the baby, the baby crying whenever I put him down to pump, and trying to figure out what I needed to give the baby when. For the most part, I tried to focus on the baby and let my mom deal with the other kids, but that didn’t always work.

From there we managed to get the baby back on his eating schedule and not miss any more feeds or have anymore pump problems. My littlest guy did, however, manage to spit his tube out several more times, including once at 4:00 this morning (that was fun). We’ve also had to figure out timing, dealing with three other kids, getting everyone else fed, and remembering things like meds for the baby, meds for me, changing two sets of diapers (my 2 1/2 year old is still in them), check the babies temperature, and make sure to remember to feed the dog, all while functioning on very little sleep. It has been an adjustment and a juggling act for sure. I am happy to report though that I felt less stressed yesterday, we managed to get a little more sleep the last two nights (of course it is the weekend, so that helps), and we are starting to figure out ways to streamline things and set things up as much as possible to make things easier in the middle of the night. Of course, all this is with two extra adults in the house to help us out and make sure laundry gets done. I have no idea how we are going to manage it all when they leave in a week.

I do know one thing for sure and that is that we are all so happy to have my littlest guy home. My older sons are happier than I’ve seen them in three month. They look like a huge weight has been lifted off their shoulders, especially my oldest. I love being able to hold my littlest guy pretty much all day and he seems to have adjusted well. Within 24 hours, he seemed to get used to the idea of constantly being held and is sure to let us know that he doesn’t appreciate being put down. We have had some wonderful bonding time too. We spend lots of time just staring into each other’s eyes, falling in love.

It might have been a rocky start to my baby’s homecoming, and it is far from smooth sailing from here, but I know it will also get better. We will all tread water until we can figure out how to settle in and swim in our new little pond of chaos. It will eventually all become second-nature and we will become pros, at least until we are thrown that next curve ball, like a family outing. Until then, we will just enjoy the little pockets of quiet we can get.

The emotionality of a looming homecoming

When I entered the hospital on Monday morning, there was an extra spring in my step and wider smile than usual upon my face. I’m always excited to get to the hospital and see my baby, especially if I gave up being with him the day before so that his father could be with him, but on Monday, the thought that this might be the start of our final week at the hospital made me even more excited. That’s right, after 11 weeks in the NICU, my baby might finally becoming home in the next day or two! The emotions, however, that this possibility is invoking in me are different than I imagined.

Of course I’m happy, I’m elated, but there are lots of other feeling mixed in there that prevent this from being a time of pure joy. The biggest emotions that prevents me from experiencing full blown elation are hesitation and fear. I feel like I can’t really embrace that this is a reality until he is home. We’ve been given a possible date for release before, granted it wasn’t nearly as sure as this one, but we had to deal with the fall out of disappointment just the same. So I feel like I can’t totally get my hope up just incase something happens. After all, I watched his neighbor do the car seat test and be ready to go home and then have an episode only hours before discharge, landing him in the NICU an extra two weeks, so I know things can always happen.

The next thing I feel is nervous. I’m not worried about him stopping breathing or getting sick or anything (not anymore than is normal at least), but he is coming home with an NG feeding tube, so there are certain things that go along with that. We got trained on how to use the pump and I learned how to put his tube back in if he pulls it out, but it is still a lot to remember and do. The fact that we will be operating on even less sleep than we have been and will now have a fourth child at home to deal with definitely ups the difficulty factor on everything. There is also that added pressure of possibly drowning my child if I don’t put the tube back in he correct way and it ends up in his lungs instead of his stomach. That possibility doesn’t exactly make me feel confident, despite any training I received.

Then there is the “oh my god, what have we done?” moment of realizing we are about to have four children in this house to care for. We will no longer have nurses to help tend to our most demanding child (at least most medically demanding), we will be on our own. The logistics of bedtime, trips to the store, and even everyday living with four kids 6 and under is enough to make my head explode. Having a preemie with special eating needs doesn’t make things any easier.

There is also a slight feeling of sadness at the idea of leaving the NICU. Despite the stress and sadness that having a baby in the NICU brings, you kind of get used to it, it becomes a part of your daily routine, and the nurses become like extended family. After 13 weeks of hospital living, 11 weeks in the NICU, it is going to be very strange to not be going into the hospital anymore. There will definitely be a transition period in which we have to adjust to a new routine, a more normal routine, the routine of being home. Though there is so much about the NICU that we won’t miss, we will miss the security of care it gave us and all the wonderful medical staff we came to know and love.

Of course there is also the “I can’t believe this is finally happening!” feeling, which is the best of all the emotions I’m feeling right now. I’m giddy and excited. He is finally coming home. We don’t have to share him with doctors and nurses or work around school schedules, traffic, or other events to see him. Instead, he is all ours, every moment of the day, the way it should be.

I know one day, probably one day soon, having him home will feel so normal. These past 11 weeks will feel like distant memories as we move on with our lives. The painful memories of the NICU will pass and the emotionality of finally having our baby home will slip into the mundaneness of everyday life. Over the next 24 hours, though, I will reveille in the joy and anticipation of what is finally ending and our new beginnings. I will ride the roller coaster of emotions and savor every moment of those first few days of his home coming. It has been a long journey, but he is finally coming home.

Boys’ Day, a new tradition

The other day a box was delivered to our house and the boys wanted to know what was inside. I was excited because it was a table for the porch that I had wanted. I explained to the boys that it was something for everyone to use, but that it was a late Mother’s Day present for me. My four year old then ask me “when’s it going to be boys’ day?” I asked him what he meant since his speech isn’t always understandable. He then elaborated, “If Sunday was Mother’s Day and you got gifts, when does it get to be Boys’ Day for boys like me to get gifts? I want Skylanders Swap Force for Boys’ Day.” Oh child, I’m pretty sure,in this house, everyday is boys’ day!

When soon keeps getting further and further away

It is a beautiful, sunny day here and my two middle children are at a beach park with their dad while I am at the hospital with our youngest. Despite missing out on their fun excursion, I was in good spirits when I arrived at the hospital today. My little guy seemed to be making progress again on his feedings and I’d been feeling optimistic that he’d be home with us real soon, maybe even by this weekend. Then the doctors came by for rounds and I asked them that question I’d been avoiding ever since he missed his original release date a few weeks ago; when do they think he’ll be ready to come home? I knew I probably shouldn’t ask it, but I was feeling optimistic. Unfortunately, the answer I got wasn’t what I expected. “Based on his current trajectory” the doctors don’t expect him to be ready to go home for “at least two more weeks.” I think everyone present could hear my heart break as I gulped back tears.

“At least two more weeks” was not what I had expected to hear, not even close. Two more weeks puts us at the end of May, after Memorial Day, 12 weeks from his birth! The “at least” part signifies that it could be even longer than that and that there isn’t any chance it will be shorter than that. This means it could be June, it could be a full three months of him being in the hospital before he comes home! So many thoughts and emotions are going through me right now and none of them are good.

First is the thought of how unfair and wrong it is that my little baby has to spend the first three months of his life in the hospital instead of at home with his family. No baby should have to do that, yet I know there are some who spend far longer. I think of all the time we are losing together that I normally spend cuddling with my babies. I will never get that time back and it just feels like one more thing I have to mourn about how this pregnancy has turned out.

My second thought is about the logistics of dealing with two plus more weeks in the NICU. My husband goes back to work at the end of this week. He took his paternity leave when we thought the baby would originally be home and my mom left (after spending 8 weeks with us). We figured, even if he wasn’t home that week, surely he would be home at some point during the month my husband had off (thank you Microsoft for that) especially since his due date would come and go during that time. I’d arranged for my mom to come back for one more week next week, figuring the baby would be home by the end of this week, and thinking she would just help us adjust to having the baby home and my husband back at work. Now it seems she will be watching my middle children again while I continue to go into the hospital. When she leaves we still won’t have hit that two more week mark, forget about if it is more than that. So then what do I do? How do I deal with visiting the NICU and caring for my three kids at home? How do I get kids to and from school and care for my two year old who is home full time, plus get laundry done and meals made for my kids? I’ve already given up on trying to clean the house with all that is going on.

Then there is the impact on my three kids at home and how they will deal with another two weeks, possibly more, of living like this. Their lives have been in upheaval since the end of February, 12 weeks ago, when I was first admitted to the hospital. They’ve had Dad caring for them, then Nana, then back to Dad, then it will be back to Nana, and from there I don’t know. Meanwhile, my six year old, who has been having behavioral issues at home, has begun to have some of those behavioral issues at school in the past few weeks; he’s falling further behind in reading, something I used to work with him on a lot, but don’t have as much time or energy to now; and he doesn’t seem to be eating much. My four year old has begun to act out and it seems to be getting worse over the past few weeks, plus he’s begun to have “accidents” despite being potty trained for almost two years. God only knows how this is effecting my two year old since he can barely talk and probably can’t even remember what life was like before all this started.

I’m trying to not even think about the financial impact of all this. Yes we have good insurance (thank you again Microsoft), and we will probably just have to pay our deductible for all the medical expenses, but it is all the non medical things that add up and cost us. The hospital is a half hour away and gas is expensive. Driving to and from the hospital once a day (sometimes twice) gets costly. While I’m there, sometimes I eat lunch and that cost money since I don’t have the time or energy to pack myself a lunch each day. Then there are the evenings we are too tired to make dinner or life is too chaotic and nothing gets made, so we have to order pizza or some sort of take out. Of course, then there is the additional cost of the guilt induced outings with the boys, whether it is the individual “dates” like last week or an outing with all three of them to get a little gift to keep them busy, it all adds up quickly. I can’t even count how many times our bank account has hit zero or very close to it as we wait for the next pay day and pray we don’t need anything before then.

Lastly, there is the impact of all this that I tend to think the least about and that is the impact of all this on my husband and my mental state. We are exhausted, overwhelmed, and pushed to the brink of breaking, but we keeping going. We have little to no time of reprieve from all this. We are constantly going, from 5:45am when our first child at home wakes, it is nonstop go. Dressing and feeding kids, getting kids to and from school, cleaning and cooking, those are all just normal everyday events with kids, but then you add trips to the hospital, late night and middle of the night pumping sessions, and dealing with all the emotional and behavioral issues our older three are having. This leaves little time for our own emotional needs. I’m not even sure how we are going to function when my husband goes back to work and my mom is gone. Plus, being in the NICU for the past 10 weeks we have gone from being the new family on the NICU floor to the veteran family here. We have watched all my son’s neighbors around him go home while he still remains. The babies who were here when we got here are all long gone, while new babies have come in gone in their place. It is bittersweet to watch the babies around him go home. I am happy that they get to go home, but am sad that it still isn’t my baby’s turn.

At this point we are stuck in limbo. There is nothing we can do change the situation or make it better, all we can do is wait and hope he figures things out. That might be the hardest thing to accept about this situation, the inability to change or fix things. There is nothing we or the doctors can do to move things along, it is completely up to him. I know this too shall pass, but in the moment, it doesn’t help. People keep telling me that he will be home soon, but soon just seems to get further and further away. I long for this to be over and for him to be home where he belongs. So now I will attempt to reset my expectations and not get my hopes up. Of course, that is easier said than done. I just hope I’m not in this same situation in two more weeks because I’m not sure how many more times I can suck up the disappointment and reset myself.

Mother’s Day in the NICU

For Mother’s Day today I got handmade art projects and kisses from my older boys. We are spending the afternoon outside, I’m watching them play chalk as I rock on the porch, just like I’d envisioned. It is a beautiful, sunny day. The only problem is there is one important piece of my perfect Mother’s Day vision missing; my youngest son.

It is more than two months after his birth 9 weeks early and my youngest son is still in the NICU. This is not what I had in mind for my Mother’s Day. I know I’m not alone, mother’s around the country right now are celebrating their Mother’s Day with a little one in the NICU. Many of my son’s NICU neighbors were lucky enough to go home in the last few days, like a Mother’s Day clearance special. Those moms are now home, cuddling their little one on what probably feels like an extra special day to them. For those left behind, their moms are coming to terms with this Mother’s Day in a different way, one with a little less joy. Don’t get me wrong, all of us NICU moms are thankful for our new little bundles of joy. For many of us, this day could’ve been completely devoid of joy if things had been different, but we are lucky because our little babies are alive for us to celebrate, despite any health problems they might be suffering. That, however, doesn’t change the fact that this is not how many of us expected to be celebrating Mother’s Day this year. For some NICU moms this is their first Mother’s Day, which makes it bitter sweet as they cuddle their tiny baby or observe him or her from outside of the isolet in the quiet, sterile environment of the NICU. For other moms, like myself, this isn’t our first Mother’s Day, which means splitting our time between our kids at home and our baby in the NICU. This becomes a day of guilt, for not being with all our kids at once; a day of stress, for having a child in the NICU; and a day of reflection on both what could have and should have been and what the future might hold.

While this Mother’s Day isn’t the day I’d hoped for and it carries a lot of sadness with it, I know that next year’s Mother’s Day will be different. Next year I will likely have four boys presenting me with homemade gifts and running around outside for me to watch. However, for today, I count the blessing I have, pray for my baby (all all NICU babies) to come home soon, and look forward to next year. Happy Mother’s Day!

Due date

My son’s due date was the other day. The due date was just a day they gave us to estimate when he should have been born, he was never going to be born on the actual due date (only 5% of babies are born on their actual due date). This is my fourth child and the three before him all ended up going c-section, so he was going to be a scheduled c-section. More than likely, my son would’ve been born the week before his due date. I’m not sure when though because we never made it far enough into the pregnancy to set a date. Instead, my son celebrated his two month birthday two days before his due date, he was 9 weeks early. He celebrated his second month in the NICU, where he has been for the last 9 weeks.

When you have a preemie, the rule of thumb they give you for when your baby will go home is plus or minus two weeks from their due date. We hoped and thought (doctors included) that he would be home on the minus two weeks side, but that didn’t happen. As that time frame approached, it became clear that he wasn’t going to be coming home two weeks before his due date as planned. It was Easter weekend and we thought he’d be home to celebrate his first holiday. We ordered all the things we needed in preparation of him coming home. My mom, who’d been staying with us and helping us for 8 weeks at that point, went home, and my husband began his month long paternity leave. It was heart breaking when that weekend came and went and he was no closer to coming home. I became depressed and had a hard time making myself go into the hospital the days following, and once I got in there, I struggled to pull myself away and leave to go home to my three other kids. Eventually I just gave up any thought of when he might come home and focused on him and the time I spent with him.

Now his due date has come and gone and there is still no sign of him being ready to go home. He has definitely changed in the two months since he’s been here. Sure, he has gained weight and come off of all medical assistance except for the feeding tube, but it is more than that. It is almost like, in the few days leading up to his due date, he went through a metamorphosis from frail little, barely conscious, blob, into a real baby. He is more alert and awake, we seem to connect more, he cries a real baby cry (loud and full of purpose), and he even attempts to mimic my facial expressions when I make faces at him. He has finally come to life, just in time for when he was suppose to come into this world. This makes the time I spend with him much more meaningful, but it also makes it harder to be apart from him. We are now like a normal mother-child duo, except he still hasn’t figured out how to eat and is living in the NICU.

We continue to move forward knowing that another milestone isn’t far away. Soon we will hit the two weeks post due date mark, the later side of the approximation of when he should be home, and there is still a chance he won’t be home. Earlier this week, my son showed signs that he would be home by late next week. He had dramatically increased the amount of milk he was able to bottle feed in a sitting, he was close to reaching the minimum amount he had to be able to eat. I felt my spirits and optimism rise at the thought that his release date might come soon. I informed my husband that we should take some time this weekend to prep stuff for his homecoming. Then he had a back slide when he was given the wrong nipple during feedings and the faster flow caused his reflux to get worse and for him to begin to show signs of a feeding aversion again. Now he is only eating half the amount he was eating only three days ago and I am feeling much less optimistic. Next week is my husbands last week of paternity leave and my son still might not be home before he goes back to work. We had arranged for my mom to come back out for one more week to help us adjust to life with a fourth child at home while my husband returned to work. Now there is a good chance that she will be coming out yet again to watch my other three boys while I shuttle back and forth between them and my baby in the NICU. After my mother’s week here, I’m not sure what we do if he is still in the hospital. I question whether it ever just gets to a point where they yank his tube and send him home, sink or swim.

The fact that my son is perfectly healthy, with the exception of some reflux and the inability to eat a full feed through a bottle, is both a blessing and a curse. He is healthy and that is great, but that means that there is nothing the doctors can do to move the process along, it is completely up to my son. This is frustrating because it leaves us with no idea as to a definite end date. We used to have goals that we were working towards. First it was the two weeks pre due date, then it was the due date, but now, with the last goal they gave us, two weeks post due date, is approaching and not looking anymore likely than any of the other dates, I question where we go from here. If we miss the next milestone, what do we aim for as a release date after that, where do I set my sights? Obviously my answer would be every day until he finally comes home, but I can’t live my life that way, constantly holding my breath.

So I struggle to stay positive and keep going. We are 11 weeks in from when this all first started (when I was admitted to the hospital) and I’m exhausted, but I keep going because I have no other choice. I wake each day hoping that something has changed and that I will arrive at the hospital to hear of great improvements and the news of my son’s pending release, but that day has yet to come despite his due date passing. So what’s mom to do but sit and wait a little more.

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