survivingmyboyz

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

Archive for the tag “mothering”

Looking back, two year later

Two years ago tonight, I layed awake in a hospital bed, hooked up to a multitude of wires. The wires were not only to monitor me and my extremely high blood pressure, but also to monitor my baby and his constantly dipping heart rate. I laid there listening for those dips, praying that they would fix themselves, and that my baby would stay strong enough to make it to the morning, when I was to have a csection to bring my baby boy into the world nine weeks ahead of schedule. It was much too early for my baby to come, but the doctors hoped that they’d be able to better care for him on the outside than inside me. I laid in that bed terrified, knowing that we were in for a long journey that I just hoped my baby would be able to survive.

Our stay in the NICU lasted 77 days, but our journey did not end when we came home. My son left the hospital with a feeding tube and we struggled for two months with feeding schedules, reinserting tubes, doctors visits,  pumping, attempting to breast feed, wheezing, and problems with breathing before we found ourselves back in the hospital. We spent another two weeks in the hospital being told to prepare for multiple hospital stays and surgeries. This child’s life had not started the way we had hoped and it was looking like it wasn’t going to get better anytime soon, but as the saying goes, it is always darkest before dawn. We received miracle news the day of surgery that my son had an easily treatable cyst and that the bleak future we had been preparing for was not going to happen. Two days later, we were back home and my son was eating like a champ, no more feeding tube.

That chapter in our lives feels like it was forever ago. When I look at my son now, it is hard to believe that he is the same kid who went through all of this. Aside from how skinny and small he is, no one would ever look at my son and guess that this was the story of his first six months. My son is turning two tomorrow and he has already been practicing for the part of the troublesome two year old. He is into everything, moving furniture, climbing on chairs, figuring out how to open things he shouldn’t, and making messes faster than I can clean them. I’m pretty sure his thinks his job each day is to mess up as much stuff as he can before he gets put to bed each night. He is very good at his job. As much as he loves to be near his mommy, he is very fiercely independent and insists that he do many things on his own and to be treated like his older brothers. He insists on big boy cups and forks. He wants to sit on the potty when his brothers do. He likes to play whatever his brothers play. In his mind, he is already a big boy. When he doesn’t get his way though, watch out, because he has been practicing his terrible two tantrums, complete with laying on the floor, kicking and screaming, and pushing his body about on his back. Luckily for him he has the cutest smile, the sweetest little curls, the prettiest blue eyes, and a contagious laugh that all allow him to get away with acting like a brat or making a giant mess. One look at him and your heart just melts.

Watching my youngest son sleep, cuddled into my bed with his brothers for his last night as a baby, it seems impossible that just two years ago he was my smallest baby. Just two years ago, that 18 pound ball of trouble was my 2lb 12 oz miracle baby. Two years ago, he was struggle to survive this journey, now I’m struggle to keep up. Happy birthday baby boy.

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Patience is a virtue, but not the norm

Dear Woman waiting for my parking space at Target,

I’m sorry, I didn’t immediately see you there. I was busy loading my multiple bags and children into my car. You seemed to be annoyed that it was taking me so long to vacate my space for you. I get that I’d snagged myself a sweet spot which you wanted. Infact, only two other spots were sweeter than mine and both were currently occupied by cars that didn’t appear to be leaving anytime too soon.  Well, I hate to break it to you, but mine wasn’t either, or at least not as quickly as you’d have  liked me too.

The thing is, I have several small children who need to be buckled in, bags to load, and a carriage to return, these things take time (as does everything with small children). I noticed though that you don’t have any children in your car, so you are able to hop in and out quickly (your shopping trip probably takes a fraction of the time mine does too).  Based upon the impatient looks you were giving me, I would guess that you were in a hurry, so it surprises me that you were choosing to wait for my spot. After all, the lots was half empty and you must have passed at least ten spots before getting to mine. You didn’t  appear to be old, nor did I see a handicapped sticker (otherwise you would have been parking in an even sweeter spot than mine), so I’m guess you probably don’t have a problem walking that would necessated that you wait for a spot up front. Since it was clearly taking me longer than you would have liked and there were so many other open spots just a little further away, I found it curious that  you would continue to wait angerly on my annoyingly large family. Oh sure, I get that the other spots would  require you to walk a few extra steps, but maybe you should ask yourself if avoiding a small exertion of energy is worth the annoyance of waiting for my spot. I guess that, after several minutes of waiting, you finally decided that it wasn’t, since you seemed to find yourself another spot not that much further from mine. Good for you for choosing a small amount of walking over the agony of waiting! From the dirty look you gave me as you walked by while I finally buckled myself in, I’m guessing you were still a little perturbed with me for forcing you to make that decision.

Oh the plight of the privileged and impatient! I’m sure the hungry, homeless, and destitute feel bad  for you and your huge burden of being forced to decide between getting a small amount of exercise or having to wait. I’d have said a small prayer for you that there was no line at Starbucks inside, but I didn’t want another person to have to make the tough choice you just had to make.

Sincerely, 

Someone who has no fucks to give about your first world problems

Hotel California revisited

I’ve done the math (which admittedly I’m not good at), but it appears that I have spent approximately 49% of the days this year so far in hospitals. If I were to add in days spent going for blood tests, doctors appointments, and clinical consults, I’m pretty sure it would be closer to 60%. I started crunching these numbers today as I lay in a pull out couch hospital bed trying to take a rare moment of rest while listening to my baby labor to breath in the crib next to me. That’s right, we are back in the hospital.

I’m going to give this disclaimer early on in holes it won’t deter people from reading. I am very tired, no exhausted. I’m not sure how I am finding the energy to write this right now, but I just felt like I need to. That being said, I will not be editing and spell checking what I am writing, not right now anyways, so hope this makes sense and isn’t too horribly written. If it is and you have complaints, I suggest you go several nights with only almost no sleep, then spent a few days dealing with a crying baby and attempting to process information multiple doctors are telling you, the. Go and try and write a beautifully edited blog that expresses how you are dealing with all of it. That was the nice suggestion, I could’ve suggested something a lot less nice. Okay, disclaimer claimed (or whatever you would call it).

If you’ve been following me, then you know that, a little more than a week ago, we were told that my son had scarring just below his larynx and this making it difficult for him to breathe. If you don’t know the story, go read it (shattered by surgery). When we left the ENT appointment that day, the doctor told us that if my son got any worse to take him to the ER at Children’s Hospital in the city. Toward the end of last week, my son seemed to be struggling more to breathe, but it wasn’t horrible, so we just kept an eye on him, knowing that we only had a few more days until the ENT hoped to do the procedure to fix his scar tissue. Then, four days ago, my son went from sucking down his bottles quickly and without problems, to struggling to eat them and pretty much refusing to take them at all. When we were able to get him to take anything from the bottle, it was very little and he seemed unable to breathe properly while trying to drink from them. That night we started tube feeding him early for fear that he wasn’t getting enough food. It was an awful night. He labored to breathe and was so unhappy with the tube. My husband and I barely slept and spent the night trading back and forth who would hold him so we knew if he was breathing or not. By morning we had made up our minds that we couldn’t do his for three more days while waiting for a procedure that technically wasn’t scheduled yet because they were still trying to secure an OR. I showered, packed my life into a bag, and headed to the ER with my littlest guy, knowing that I could possibly be at the hospital for an extended period of him.

That was three days ago. We spent most of the first day in the ER as they ran tests, took X-rays, and I retold littlest guys story over and over. It was dinner time by the time we got admitted to a room and my poor baby was beyond hungry because we weren’t allowed to feed him all afternoon incase they had to operate. It is horrible to watch your child, not only struggle to breathe, but cry from hunger and not be able to help him. He was given oxygen, an IV, breathing treatments, and steroids. The said he had a respiratory virus that was constricting his airway more than it already was from his scarring and this was causing the increased problems breathing. The first night was really rough. He woke up every 20-30 minutes. I could barely function, I was so tired. All the next day, doctor after doctor came in and examined him. We didn’t have a moment of rest. The whole day he was either asleep in my arms or crying. By dinner time, he seemed to take a turn for the worse. His breathing got louder and shallower. He was pale and in pain. He didn’t even have the energy to cry. He just laid there, looking at me with puffy, sad, scared eyes; tears in them, and wheezed at me. I felt so helpless and awful that I was unable to make him feel better. Tears streamed down my face as I tried to comfort him by singing some of the songs I sang to him while he was in the NICU. More doctors, more tests. They said part of it was caused by the fits the steroids were causing him to have. Late that night, he finally fell asleep for a longer amount of time and seemed more comfortable, and I was able to get an full hour of sleep. That night got better as he slowly crept up to almost a full two hours of sleep at one point in time. He was still pretty miserable in the morning, but his breathing was better than it had been in a few days. Despite his suspicion of anyone in a mask and gown, my littlest guy even let a few volunteers hold him today so I could go to the family center and clean his stuffed animal, grab a coffee, and attempt to figure out some of the medical bills from his last hospital stay. Getting out of the room and walking around the hospital, even just for a short amount of time seemed to reenergize me so I focus better on his care (either that, or the triple shot of espresso did the trick).

So tonight, where we stand is still in limbo. Today was better for both him and me. Based on the giant fit he threw around his normal bedtimes, I’d say he was feeling better, otherwise he wouldn’t have had the energy to fight sleep so fiercely. Despite this, the doctors are still back and forth on and concerned about doing the prosecute that they had originally planned for tomorrow. As of right now, they plan to put my littlest guy under general anesthesia and going in through his mouth to get a better look at the scarring. They do not want to do much else because they are worried that he is still inflamed from the virus. Unlike the original plan, the problem will not get fixed tomorrow. Instead, they are just trying to figure out a more definitive game plan. There is worry that he could have trouble recovering and end up intubated and in the ICU afterwards. The other position though is to try to wait out the illness before doing the procedure, but the risk there is that he could labor to breath so much that he exhausts himself and has to be intubated anyway.

It is so hard to decide which is the best course of action, especially when everyone seems to have a different opinion on it. I just want my littlest guy fixed, healed, home, and happy. I’m so scared that we are going to make the wrong decision and damage our little guy even more, or worse, lose him all together. Tomorrow is going to be a very trying day and I’m sure I won’t sleep tonight. I hope I am able to muster the strength my littlest guy needs from me tomorrow and that everything will work out okay. Of course, the procedure tomorrow is just the beginning of the end of all this for us, at least I hope.

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.

A few four year old gems

I’m long over due for some funny things my kids say, so here are a few nuggets from the past months.

My four year old:

“Can we go to the Space Noodle?” (We live outside of Seattle now)

Upon seeing me after I had my last baby, “Your belly got all small and your boobs got all big!”

Looking down my shirt at my massive “new mom” cleavage, “You have a butt on your chest.”

“I want the new baby to come home…so I can fart on him.”

He’s such a sweet boy.

Welcome to the Hotel California

This is the week my son probably would have been born. He wasn’t due for another week after this, but because he was going to be my fourth section, his delivery date would probably have been scheduled for the end of this week. That means, he would’ve been home by next weekend. Instead, next weekend, he will be moving into his eighth week in the NICU, stalled out with eating issues. My cousin told me that one of her friends once referred to the NICU as The Hotel California, “you can check out anytime you like, but you can never leave.” I tend to agree with that analogy, after all, I checked out seven weeks ago, but I haven’t been able to leave.

Time in the NICU is a crazy thing. The time inside the NICU moves so slowly, you feel stuck in place, but outside the NICU, everything is speeding by. I feel like it has just been during the last few days that I have woken up from this NICU haze and realized that it has been more than seven weeks already (more than nine since I first entered the hospital and it all began). It was only after my new neighbor had posted that her son was now 9 months that I began to wake up. I thought, how can that be? I just met them the other day and she said he was six months old. That’s when I realized that time was passing on the outside even if it didn’t feel like it was on the inside here. I’ve been so immersed in this crazy slow down of time inside the hospital that I hadn’t stopped to notice how much time had passed and how much things had changed outside of the hospital.

When I was first admitted to the hospital with high blood pressure and preeclampsia it was the end of February, the last day of my boys’ mid-winter break from school. Here I am now, spring in full swing, staring down the barrel of May. My kids have had their spring breaks, celebrated St. Patrick’s Day and Easter, and are now looking ahead to the end of the school year. Nine weeks ago, this all seemed so far away, I could hardly grasp the amount of time we were looking at or how I would survive these weeks. Somehow though we’ve made it through and are almost to what would have been D-day, but we don’t seem any closer to going home. A few weeks ago the doctors were very optimistic that my baby would be home for Easter. Now Mother’s Day is only two weeks away and I’m just praying I will have all my boys home with me for it. I’m beginning to feel like it doesn’t matter how much time passes because we aren’t getting any closer to the day I get to take my baby home.

People say that things get easier with time, but I don’t believe that to be true; I think we just become accustom to how things are. This doesn’t make things easier, it just makes things the norm. Sure, I’m used to come to the NICU each day and spending a few precious hours with my baby. That doesn’t mean that coming here and leaving my three other boys is any easier or that when it is time to leave the NICU each day I feel any less guilt as I leave one child, who is now more alert and aware, to go back home to my other three. In fact, it now feels harder and I feel trapped inside a constant cycle of guilt. Last night I stopped to talk to another NICU mom whose son came in a few weeks after mine, but at the same gestational age mine was when he was born. This is her first child so she stays here at night. She says she’s been getting out more now, but is still here for ever feeding (which is every three hours for 30-45 minutes). It made me sad. Sad that this was the experience she was having with her first child, sad that she was living here, and sad that I couldn’t do the same because I have three others at home. I left to go home and put my boys to bed only to miss bedtime by a few minutes and feel guilty again. Why hasn’t someone perfected teleporting yet so I can just pop between home and the hospital in a matter of seconds instead of traveling 30 minutes each way?

I know that, despite what it feels like, my son won’t grow up in the NICU. He will eventually come home, grow up, and probably be way bigger than me and even his brothers, but that “eventually” isn’t here yet and still feels so far away. Time is moving at a snails pace to the day that he gets to come home while the world around me, outside of the NICU, is speeding by. I feel like I real am stuck in the Hotel California, I’ve already checked out and I’d really like to take my baby and leave now.

Too many moms

My son has been in the NICU now for seven weeks. He has some of the most wonderful nurses there. We totally appreciate them and all they do and often express our gratitude through chocolate. These nurses are there around the clock, most of the time when we can’t be there and they take care of my little guy as if he were their own. I often wonder though, with so many secondary moms taking care of him, does my son know who I am?

These wonderful NICU nurses diaper, clothe, feed, and comfort my baby when I am not there (on top of all the medical treatments they constantly provide). They are amazing at their jobs and I feel good knowing that my son is in such good hands when I can’t be there. I have three other sons at home to care for, so I can’t be at the hospital 24/7. We are so fortunate to often have the same nurses taking care of my son over long periods of time. It is nice to have consistency. The thing is, some of these nurses have spent more time with my son over the past 7 weeks than I have and it makes me sad that in the first weeks of life my son is being attended to more by other people than his own mother.

When my other three boys were born, they hardly left my arms. I didn’t send them to the nursery so I could rest while in the hospital, they didn’t sleep in cribs, and they didn’t have a nanny. I held my babies unless I was going to the bathroom or showering. The voice they heard the most and the scent they were enveloped by over the first few months was mine. Sure, dad and some family members got to hold them and maybe even feed them on occasion, but 98% of the time they were with me. With a baby in the NICU though, all this is impossible. Even if this was my only child and I lived in the NICU 24/7, I still wouldn’t be able to hold my baby as much as I did the other boys. I didn’t even get to touch my baby for almost 24 hours after he was born and it was a little over a week before I was able to hold him. Even once I was able to hold him, it was only for a limited amount of time each day because he wasn’t able to maintain this body temperature and had to be in the isolet for most of the day. Once I was able to hold him for less limited amounts of times, we still ran into problems like a horrible bum rash that required him to lay on his belly with his bum undiapered and sunning under a lamp for most of the day. Then of course is the reality that he isn’t my only child, so I am only able to be with him for 4-6 hours a day. This leaves him spending the majority of his time with those fantastic nurses and leaves me wondering if he ever gets confused about who mom really is.

Most babies can at least make a connection with being fed and mom (or sometimes dad), but as I attempted to feed my little guy the other day, I realized that this wasn’t true for him. He still gets most of his nourishment through the tube in his nose, which is the main reason he is still in the NICU, but bottle feeding is attempted at most feedings. These days, I can only be there for one feeding which means 7 out of 8 feedings a day are being given to him by someone other than mom. It is a strange thought to think that your baby is being feed your milk by someone else more often than he’s being fed it by you. Which means, he isn’t associating the taste of my milk with me. As far as he is concerned, I’m just another lady who comes into his room and fusses with him for a few hours and then leaves until my next shift. That makes me so sad.

As much as I love the nurses and the care my son gets from them, it breaks my heart to think that I’m just another person in a whole line of caregivers and I’m not mom, that special lady who cared him for months and makes that milk he drinks. I know that eventually he will make that distinction and he will be as attached to me as my other sons, but it is just so hard to not feel that connection when he is so little and especially since I was suppose to still have him all to myself inside me right now. I suppose this is just one more reason why I am desperate to get him home. If only we could get past all the road blocks and get him home so I could be his one and only mom. Of course, once he is home, there is a chance that I won’t put him down until he needs to leave for college. Then again, there are online colleges now, so maybe I won’t even have to put him down for that.

One month later

A month ago, at this very moment, I was hunched over a table in the OR as the anesthesiologist pricked my back several painful times, looking for the right spot to give me my epidural. I was about to go under the knife for the fourth time, for my fourth son. This c-section though was going to be very different from the other three, it would be the most painful and emotionally draining of them all. I would not come out of this c-section to have my baby placed in my arms and my joy over take my pain, instead it would only be one of many scary and painful steps in my youngest son’s journey into this world, a journey that started two months sooner than it should have.

That was all a month ago now and many things have changed in that month. Things certainly aren’t as scary or painful as they were a month ago. Last night my little guy was moved from the long term NICU to the short term NICU in preparation of going home soon. This is just one of many exciting and hopeful signs we have been given in the last few days. At one month old (35 weeks 3 days adjusted) my little guy is now almost 4 and a half pounds, up from 2lbs 12oz at birth. He has been off oxygen and at room air for a couple of weeks. He was moved out of the isolet and into a crib a week ago. He began to be introduced to the breast and then the bottle within the past week. As of this morning, he has doubled the amount of milk he was able to take from a bottle during one feeding from 12 to 24ml. He is doing so well that the only thing left for him to do is to be able to take his entire feeding, every time, by bottle (or breast, but that will likely happen after he comes home). Things are looking good for my little guy.

It is hard to believe that my little guy was born a month ago. In many ways it feels like we have been traveling back and forth to the NICU forever, yet it also feels like he was just born yesterday. The past month has been so strange and filled with so many emotions. Now we are getting ready for new emotions and experiences, the feeling of elation and apprehension at the idea of finally bringing our preemie home in the next week or two. Soon all the pain and fear of the past month (and even longer) will no longer matter because I will be home with my littlest guy in my arms and that is all that will matter; and for that I am thankful.
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