survivingmyboyz

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

Archive for the month “August, 2014”

The parting of the storm clouds

This past Sunday, my husband and I had the rare opportunity to get out of the house, sans kids, for a date. With family coming in and out of town over the past few months to help us out, we’ve actually managed to escape kid-free a few times, but, as enjoyable as some one-on-one time with my spouse was, those dates weren’t really relaxing, until this past Sunday. Before this past Sunday’s date, our past few dates were marred by heavy hearts over the struggles of our youngest son during his young five months of life. This past Sunday’s date was different though because the clouds that have darkened our lives since a few weeks before his birth have finally lifted.

On the sixth of this month, my littlest guy celebrated his five month birthday by leaving the hospital with no plans of returning. After struggling to live, breath, and eat from the time before he was even born and through his entire little life, my son is finally able to invest his energy in more age appropriate activities, like discovering his hands and feet. Only a little more than two weeks ago we were sitting in the hospital again with my littlest guy, facing a calendar full of surgeries and hospitalizations through at least the end of the year and even the possibility of a permanent trachea tube. Today, we are home, enjoying all of life’s small moments of happiness and feeling blessed.

Our littlest guy struggled through a respiratory virus, with the assistance of steroids and some extra oxygen, and was healthy enough to go under general anesthesia for a more comprehensive scope of his airway last Monday. My husband met me at the hospital the morning of the procedure and we sat together with our littlest guy, comforting him as they prepped him for the procedure, trying to prepare ourselves for what we were about to find out and what the future held for our son. The doctor promised that the procedure would only take minutes to get in and evaluate his airway, then we would be told how they would proceed to attempt to fix the problem. We were prepping for a long tough road. We waited nervously in the waiting room ,for what seemed like hours instead of minutes ,for the call. When the OR nurse called, I spoke with her on the phone as my husband and I held hands. Soon tears streamed from my eyes as I felt the oppressive storm clouds that had been hanging around me for so many months finally part and I could breath again. There was a minute chance that when the doctors got in to get a better look at my son’s airway, instead of scar tissue, it would be a cyst. The chances were so small that they didn’t even mention the possibility the first time we saw the ENT doctor. If this was the case, they would be able to pop the cyst and clean out the airway with minimal work being done and little recovery needed, it was the absolute best case scenario, though highly unlikely. We had so many people pulling for us and praying that it must have worked because the nurse said those words we were not prepared for, “it is just a cyst”! We were overjoyed! I couldn’t stop crying from relief, excitement, disbelief, and happiness. My little guy was not going to need the multiple procedures and surgeries we were mentally preparing ourselves for; he wasn’t going to spend his entire first year in and out of the hospital! We couldn’t have asked for a better outcome. When we talked to the ENT doctor, he expressed how excited and surprised he was to find just a cyst; it was so unlikely. He was so excited that he told the nurse to call us immediately with the good news. All the nurses and doctors on my son’s medical team were so happy and even better, they were in shock by how great my son was doing as soon as he woke up in the ICU. When I first entered his ICU room, my son was sleeping. He was so quiet, unlike his normal, loud, labored breathing, I had to check for myself to make sure he was still breathing, despite all the machines he was hooked up to telling me he was fine. When my son woke up, it was like he was a totally different kid. He went from eating 40-65mls of milk over the course of a half hour to downing 70-100mls of milk in 10 minutes! His breathing was quiet, not labored. This gave him extra energy to discover his tongue, talk more, exercise his arms and legs, and just be more, overall happy and alert. He seemed ready to go home within hours of the surgery and the ICU staff said they would’ve discharged him from there if they could’ve, but ENT made us spend a night in ICU. Once we moved to a room on a regular floor, my son kept setting off all the machines by being so active that his sensors kept coming off, so nurses relieved him of wire after wire relatively quickly. We were able to convince the doctors to only keep us one more night after leaving the ICU.

So, to celebrate his five month birthday, my son left the hospital (again) able to breath and without a feeding tube! He is home and happy and doing the things a five month old (3 month adjusted) should be doing. At his last doctor’s appointment he had gained 1pound, 1oz since she had seen him a month earlier, not bad considering he had lost some weight when he first went into the hospital. At last check he was a hefty 9lbs 8oz.

In the coming weeks my littlest guy will still need to do some follow up visits. He is done with OT, but still needs to see the nutritionist. We are hoping that she will allow us to send back all his feeding tube equipment by the end of the month and that he will come off the fortified breast milk and be able to eat just regular breast milk within the next two months. He goes back to see the ENT doctors in a few weeks and in the middle of next month, he with go under general anesthesia again for another look, to make sure the cyst has not returned. If there is no sign of regrowth, he is home free! Despite those follow ups, I feel like this is finally, truly over.

I now find myself enjoying an ease that I have not felt for a very long time. I have been able to stop holding my breath and don’t have that constant worry at the back of my mind. I find myself fully enjoying the moments in life, big and small. My favorite moments right now, are the ones in which I am able to watch my three older boys playing while holding my wiggling, giggling littlest guy. The storm clouds have finally parted and I am enjoying the sunshine in the form of a toothless, drooling smile.

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The before and after picture of my son’s airway. He was basically breathing through a straw sized hole that went even further back than the picture shows.

Reality vs reality TV

I don’t remember signing up to be an extra on MTV’s reality show Teen Moms,but I’m pretty sure I ended up as one last night while staying overnight in the ICU with my baby.
First off, my baby is good, really good. We got excellent news and I will post on that update later. However, my son did have to spend a night in ICU last night after a procedure at Children’s Hospital. I had been told that most of the beds in ICU were private and would be nice and quiet for my baby to recover. I got very little sleep the night before the procedure because I was nervous. I’d gotten up at 5:30 am and had a very long, emotionally trying day. I was kind of hoping that my son would sleep soundly, thanks to some good drugs, so I could get a little sleep, especially now that more than a week of living in the hospital was really starting to take a toll on me. It seemed like this might be a possibility as I came into ICU and found my baby resting peacefully in a large, but otherwise unoccupied room. There appeared to be many unoccupied rooms in ICU, so I was very hopeful about a quiet night.
Unfortunately, just as I began eyeing the small pull out couch, contemplating a quick nap while my son slept, a nurse came in and wrote another patient’s name on the board. Looks like my son was getting a roommate, oh well. Then they wheeled in a little boy who looked similar in age to my son and I overheard them say that he was a former NICU baby. I thought to myself that this might actually be nice, on the other side of the curtain will be a mom who has been going through a similar experience as me. I pictured us pulling back the dividing curtain and bonding over NICU and post NICU war stories while rocking and comforting our babies. I thought how nice it would be to not be so lonely that night. Then in came three very worried looking people with “caretaker” badges on. One was an older woman who seemed a little old to have such a young baby (hey, who was I to judge though), accompanied by a young girl who appeared to be her daughter, and then an equally young boy. It quickly became clear to me that the teenage boy and girl were the child’s parents.
I’m an open minded person, so this didn’t bother me. Ok, so I had to revise my picture of how things would be that night. Sure, the mom was a lot younger than me, so we wouldn’t have too much in common, but we still had one big thing in common, something that I find to be a great common ground with other women, we were both mothers and on top of that, we were both worried about our sons. Once things settled down and seemed okay, I asked the mom how old her son was as she passed by me on her way back from dinner. She stopped to chat as we exchanged birth weights, current weights, gestational age at birth, current chronological age, and what procedures our sons had had. She seemed nice and mature enough. I began to think maybe I’d misjudged her age and that maybe she was in her 20s but just looked really young. I didn’t want to insult her by asking her age, after all, I wouldn’t exactly want her asking me how old I was and then making judgement on me for being almost 40, which I sure seems super old to her (I thought it was super old too, until I realized that Brad Pitt is 50 and my own sister in now 40).
The baby’s father stayed with her, which changed my plan for the night, but it was sweet, and I thought I might still get to chat with her a few times as she passed in and out. I’d play the role of the veteran parent, telling a funny story or two about my first year parenting and assure them that they too will get through it. It quickly became clear though, that this bonding I had invented in my head, was not going to happen. Despite their son trying to sleep (as well as mine) and my attempts to be as quiet and courteous as possible in our shared space, they turned on their tv and cranked the volume to the MTV reality tv show they were watching as loud as they could. I figured that they just didn’t realize how loud it was and that they’d turn it off before. Besides, it didn’t seem to disturb my son, who was resting in my arms, so I just plugged my headphones into my IPad and watched Orange is the New Black until my son’ late night feed was done. I decided that midnight was as late as I could sit holding him and that I needed to put him in his crib. When I took off my headphones, their tv was still blaring. It was starting to become clear that these young parents had not been taught the same lessons about curtesy that my parents had taught me. I decided not to complain about it, as long as I was able to get my son to sleep in his crib despite the noise. I was so tired, and there were so many hospital noises anyway, I figured that I could deal with the tv noise. At that point, one of the nurses came in to check vitals on both babies and was merciful enough to turn their tv down to a more bearable level. I was finally able to fall off to sleep for a bit, but was awaken at 2:30am to Teen Mom drama. The young parents were taking turns sleeping on the couch (which I’m wondering if they knew pulled out) and sitting in the chair. Teen Mom was in the chair and decided that she didn’t want to be anymore and it was her turn to to have the couch even though she apparently had the couch from 8pm until 12am. Teen Dad was unwilling to give up his time on the couch early so a fight ensued, a very loud fight. There was lots of swearing and yelling. She must have been slapping him on the back pretty hard at one point and then there were the threats of a break up. This continued for 15 minutes before one of the nurses heard the commotion and came in to check on them and remind them that there was a patient next door trying to sleep. After that they fought quieter until, I’m guessing, Teen Dad gave up and let Teen Mom have the couch. In the morning, the teen parents returned to fighting over their sleeping accommodations as they blasted more MTV reality tv at 8am. Teen Dad wasn’t too happy that Teen Mom never gave the couch back up to him the rest of the night.
Despite the ridiculous fight, with the childish threats in the middle of the night that made me feel like I was stuck in one of their awful MTV reality shows, I have to hand it to these young parents for dealing with a situation that was difficult for even an older, more experienced parent to deal with. I’m guessing that these teens didn’t plan to get pregnant and have a baby at whatever young age they were. I know they weren’t planning to have the baby five weeks early or for the baby to have a medical condition that would require surgery and a hospital stay at such a young age (no one plans for those things), but here these teens were, together, by their son’s hospital bed. Sure they fought, so have my husband and I during these times of high stress. Yes the said stupid things in a sleep deprived state, My husband and I are guilty of that too. They also did something else that reminded me of my husband and I. They supported each other, comforted each other, and as they fell off to sleep earlier in the evening, they whispered “I love you” to each other. I guess that Teen Mom and I had more in common than I thought.
So maybe I wasn’t an extra in an episode of the reality show Teen Mom; maybe I was an extra in the reality of what it is like to be a parent of a child in the ICU. Sometimes you just need to change the lense in which you observe the world through to see how alike we all really are.

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