World Prematurity Awareness Day

1 in 10 births world wide is a premature birth. I never thought my son would be one of those one in ten... but life is full of surprises. Even though it's been a tough road, I wouldn't have it any other way.

I will praise thee; for I am fearfully and wonderfully made - Psalm 139:14

It Takes a Village...

On the second day after surgery I was discharged from the hospital.

The car ride home was a special kind of hell. The 605 is a very bumpy freeway in certain areas, and even though my husband tried to avoid them or take them as slowly as possible, each one hurt like blue blazes. Also, the nausea that every nurse had asked me about while I was in the hospital kicked in the moment we exited the freeway.

Instead of choking down on normal food like I had planned (Orange Coast Memorial doesn't have the menu that Long Beach Memorial does) I spent the first day home praying I wouldn't be sick. Thankfully I wasn't.

Since I couldn't lift my son, my husband took the week of my surgery off. Having him at home to help out was a God send. He washed the bottles, made the formula, and fed Bug during those late night feelings when I couldn't keep my eyes open because of the Percocet. He took him to the doctors for his check ups, and he finally got to sit in on one of our son's occupational therapy appointments and meet his wonderful therapist.

Unfortunately, since my husband works for the city, he doesn't qualify for paid family leave, so he had to go back to work the following week.

Originally the plan had been that my mother in law would watch over me while my husband went to work - but that plan fell through before I even went under the knife. My mother in law had had a lumpectomy in mid September, but around the beginning of October the incision had become infected. She had to go through a second surgery to clean the wound, and was going to see a specialist every other day to have the wound treated. She's shown me it a couple of times and swears it doesn't hurt. I think she's lying.

My father in law usually went with her to her appointments, so relying on him was out of the question.

Thankfully my family only lives about 20 minutes away and they were more then willing to help. 

The first day my mom came over and fed the baby and changes his diapers while I sat in my recliner and dozed the morning and afternoon away on Percocet. Then the next day my aunt came over. Another day my oldest cousin stopped by.

When I wasn't sleeping off the pain killers, we chatted about stuff. My mom gave birth to me via c-section, and my aunt had three OBGYN surgeries within the space of a year, so they knew the pain I was going through. In addition to that my other aunt and my grandmother had had fibroids when I was young, and had surgeries to remove them.

Plus, it turned out that when I was a baby I suffered from severe constipation issues like what my baby boy is dealing with right now. So my mom and aunt were full of tips on how to handle that.

When the baby was sleeping, and we weren't chatting about stuff, I crocheted a lot. In quick succession I finished Bug's baby blanket (which is long enough to last him till he's six or seven), then I started and finished an owl hat, and, because Halloween was so close, I also made him a pumpkin hat.

Baby boy was less than impressed...

Eventually the pain from the surgery faded enough that I was able to stop taking Percocet, and I didn't even need to take prescription ibuprofen. However, I was still easily tired: I went out for lunch with friends the Sunday before Halloween, and I managed to make it through lunch, but I had to sit out on the wine tasting they went to afterwards (though, honestly, I am not a big fan of wine so I probably would've sat that out anyways). Then the following day I pushed myself way too much by walking down Seal Beach pier and around downtown. 

I was scolded by my doctor for that and since then I've been a lot more careful.

Two weeks after the surgery I was cleared to pick up my son again. As much as I enjoyed having my family come over to visit and help out, it was nice to be able to take care of my baby boy on my own once more.

A Little Help...

My husband and I have been debating about this for awhile. See our medical insurance is really great and has taken care of a lot of mine and our son's medical bills, but there's one bill left to take care of - our baby boy's NICU bill. In the grand scheme of things it's not as bad as it could have been, but with me on medical leave, it's just a bit more than we can afford right now. Especially since we're going to have to start paying my job back for my portion of our health insurance (Since I haven't worked since June, my company hasn't been able to deduct that from my paychecks like they normally would). Unfortunately we can't negotiate the medical bill down any further, we don't qualify for any sort of assistance, and if my son does qualify for CCS (a supplementary insurance available for children here in California), it's not retroactive.

So we need help.

I've gone ahead and started a gofundme fundraiser to help us pay for that bill and for our health insurance. Any donations or assistance (even if it's just boosting the signal by sharing this link) would help us out a lot and would be greatly appreciated.

http://www.gofundme.com/garrettmedical

Good Bye and Good Riddance

It's been a year and a half since I first found out I had fibroids, about a year since I first met my amazing doctor and she told me we could take them out, ten months since I found out I was pregnant, four months since the fibroids caused me to go into preterm labor, and about two months since I hemorrhaged because of the stupid things.

And as of last Tuesday they are finally gone from my body.

We left baby boy (who we have taken to calling Bug so much that we worry he'll start to think that's his real name) with my mom and drove down to Orange Coast Memorial before the sun was even up. I checked in with admitting, filled out the same paperwork I had filled out multiple times over the summer, for both mine and our son's various stays at Orange Coast's sister hospital Long Beach Memorial, and then we walked over to the main entrance where I checked in again - this time with the surgical receptionist. 

After a few minutes of waiting I was taken back into the pre-op area. I changed into a gown, hair net and booties, and the nurses connected me to a monitor to get my vitals. I may have set it off once or twice - prior to this the only time I had had surgery was a tonselectomy when I was five, so I was more than a bit nervous! After the nurses got my vitals and started an IV, my husband was allowed to come back and sit with me while I waited. Thank God for that - I was beginning to get even more nervous with just the fabric curtains for company.

The anesthesiologist stopped by and asked some questions. Then the operating room nurse checked in. Finally my doctor showed up and went over what the procedure would entail one last time. When she asked if I had any questions, I shook my head and said I just wanted to get it over with. 

She left to get scrubbed in, and a couple of minutes late the anesthesiologist and the operating room nurse came back. 

It was time.

The anesthesiologist injected something into my IV that burned, but the sensation quickly faded. My husband kissed me, and then the OR nurse rolled the gurney back to the operating room. She and the anesthesiologist asked questions about my son and I told them about how well he was doing now. I caught a glimpse of metal tools sitting on a table near the wall when they had me scootch from the gurney on to the operating table. 

I had thought I would lay down, they would place an oxygen mask over my face, I would count backwards from ten, and then pass out before I could reach eight. That's what had happened when I had my tonselectomy. Nope. There was no oxygen mask or counting. Instead the world began to tilt and spin as I laid down on the operating table. I remember asking what she had given me, and I remember wanting to make a joke about how it felt like I had had way too many ciders, but my lips wouldn't form the words. All I could do was close my eyes. 

I heard the anesthesiologist say something about how she set that up right...

And then the next time I opened my eyes, I was in recovery.

A new nurse was checking my vitals and asked how I was doing. I told her everything hurt. It felt like I had a big gaping hole in my middle. The nurse promised they would get me something for that, and then promptly disappeared. Or maybe she stayed put and I just drifted off again.

The next thing I remember is hearing my husband ask if he could see me. The nurse said he could since I was awake. Which I call shenanigans on. I had to force my eyes open, but it wasn't long before they were closing again. It was so hard to stay awake!

I remember none of this, but supposedly after he was allowed to see me my husband began to ask me questions like if I still loved him, etc - which made the nurses laugh. I guess I just stared at him blankly in response - which made the nurses laugh even more. 

Moments later (or at least it felt like moments... It could've been a heck of a lot longer since my sense of time was pretty much shot at this point) it was decided I was stable enough to be moved up to my room. I was hooked up to portable oxygen (which I didn't realize I was on until that point...) and the nurses and orderlies unlocked the bed and began to push me through the halls.

Mind you, I still hadn't had any painkillers at this point, so going over the door jambs between the different hospital sections and into the elevators was lovely.

We got into my room which I would be sharing with another lady. A nurse finally gave me some morphine, they began to check my vitals... And we found out I was being moved again. Apparently they needed the bed for a gentleman who had just gotten out of surgery. Since the only other bed was in postpartum, and only women could be on the postpartum floor, they decided to move me down there.

So we were off again, back down in the elevator, and through the halls until we ended up in a room that was just around the corner from the labor triage room I had been put into back in June.

My husband found this fitting. 

I couldn't care less. I just wanted the morphine to kick in - which it did right in the middle of me scooting from one bed into the other.

After we were settled into the new room, and I had called my mom and checked in on the baby (he was fine) and called my dad, my husband and I promptly passed out and slept for a good part of the afternoon. I woke up long enough to say hello to a friend who stopped by to visit, kiss my husband goodbye when he left to pick up our son from my mom, and eat some broth (which was the best broth ever) before passing out again.

The next morning, my Obgyn stopped by to explain what had happened during the surgery. Originally she had intended to make a small incision, pull my uterus out through the incision, and then remove the fibroid. It turned out that the fibroid was too big, and not located where my MRI from January had said it was. Instead of being outside of the uterus, it was on the inside. As a result, my incision was far longer than she had planned, and they had had to use retractors to hold my skin and muscles back. 

That explained why I was in so much pain.

Come to find out, the fibroid, which had started out at 10cms, and grown to 16cms during my pregnancy, was 18cms by 16cms when they removed it. It was also over 5 pounds. 

FIVE POUNDS!

I have a picture of it. It's all fleshy and icky looking and kinda kidney bean shaped. 

My Obgyn told me, yet again, between the fibroid and my low progesterone levels, she had no idea how I had gotten pregnant, nor how I hadn't miscarried. Granted the fibroid was a lot smaller at the beginning of the pregnancy, but, even so, she still didn't understand how we hadn't had more issues.

Since the fibroid was so big, she was worried that it might be cancerous, but so far everything has come back normal. The fibroid was dying though, so it wouldn't have been long before I started to get an infection because of it.

Thankfully my uterus is in really great shape, so she doesn't think we should have any problems conceiving when we try to have another baby. However, because there is a risk of more fibroids showing up (which, considering my family history, is very possible) she doesn't want us to wait too long. She suggested we give it a year and then start to try, and reminded me that when I do get pregnant again, I'll have to have the progesterone shots (they know the fibroid was the issue behind my preterm labor now, but they figure better safe than sorry) and that I'll have to have a c-section at 37 weeks.

I'll be honest, for a couple of days after the surgery I didn't think I could do a c-section. Everything just hurt so much. But a c-section is a smaller incision compared to the bikini cut I'm sporting right now, also baby boy will be older, and our future child will be smaller than what he currently weighs, so it'll be easier.

Also Percocet can be taken every four hours and it is ten times better than Vicodin. Prescription strength Motrin is nothing to sneeze at either.

Three Seperate Visits to Miller's Children's Hospital

Baby boy was home for only a week when he stopped breathing on us.

It was the day he turned a month old. A friend had come over to take pictures of him. After she left I looked over at our son in his swing, feeling happy that everything was going so well, when I noticed that something was wrong. He was arching his back and his eyes had rolled back in his head. He was also struggling to breathe and had begun to turn grey.

Without thinking I immediately pulled him out of the swing and put him on the ground. We tapped his foot and shook him, but he still couldn't breathe. So I immediately started CPR while my husband and my in-laws called 911.

Thankfully, after one round of CPR baby boy started breathing again. By the time the local fire department made it to our house, his color had improved, but he was still very listless. After he was checked out and we explained what had happened, the paramedics packed us up into an ambulance and drove us down to Miller's Children's Hospital in Long Beach.

The doctors in the ER ran a bunch of tests - all of which came back normal. I actually think they were on the verge of sending us home when I started to feed our son and something strange happened...

His oxygen levels dropped.

That set off a number of alarms, so suddenly we had several nurses and a couple of the ER doctors in the room asking what had happened. I explained that I had just been giving our son a bottle because it was way past his feeding time and the nurses had said it was okay for us to do that. They had me start to feed him again while they watched, and his oxygen levels dropped a second time. The ER doc told me to stop and explained that our son was aspirating on his formula. They were shocked that the NICU had sent him home like that, and so were we, but by the time he had started bottle feeding in the NICU, he had been off the oxygen monitor for a week.

Come to find out, he was supposed to be on an oxygen monitor when they started bottle feeding him to make sure he wasn't having these issues. And now that we knew this was happening, it explained so much! Our poor baby boy had always looked like he was struggling when he was feeding. He was either gasping for air, or gulping, or coughing, and it took forever for him to finish a bottle. I had pointed these things out to his nurses in the NICU multiple times, but they had always assured me that that was normal and he would get better over time.

The ER doctors quickly decided to admit our son to the PICU, because they couldn't send him home if he was aspirating on his bottles. It was upsetting to see him hooked up to all these machines again, but we didn't want him to come home until the reason behind his problems was discovered and resolved.

It took a couple of days to get some answers.

Occupational Therapy did a swallow study, which showed that normal formula made it halfway down our son's throat before he remembered to swallow. He did much better with thicker liquids, so they had us start adding rice cereal to his formula until it was the consistency of nectar (with the brand of formula he was on, this was two teaspoons of rice cereal per ounce of formula).

Our family was shocked that it was so thick, and my mother in law insisted that he was having problems swallowing it too, but my husband and I noticed an immediate improvement - his oxygen levels were no longer dropping when he ate, he was no longer choking or gulping, and he was finishing his bottles in under 20 minutes.

During our stay in the PICU we also learned that baby boy had severe reflux. In fact, when they did the PH study, they found out that whenever he had reflux, his oxygen levels would drop, because he would stop breathing from the pain. This was probably what I had seen that day in the swing - he had had a severe episode of reflux that led to an apnea episode. They put him on prilosec and a low dose antibiotic to help his stomach empty faster.

We went home two days later and started to adjust to the new normal of giving medicines at routine times, making sure he was always slightly inclined, and carrying around an awkward apnea monitor that had way too many wires and a battery that didn't last nearly as long as it was supposed to.

Then, four days after going home, we were sent back to Miller's Children's Hospital by our pediatrician. During a routine check up, she noticed that our son was breathing faster than normal. An infant is only supposed to breathe between 20 and 60 breaths a minute - baby boy was breathing at least 80 breaths a minute.

He was admitted once more and xrays revealed that his lungs were enlarged, but there was no idea why - he didn't have a virus, and there was no liquid that they could see. Pulmonary specialists told us that it was because he was premature, said that he would grow out of it by his due date, and sent us home with instructions to give him breathing treatments twice a day and prescribed a diuretic for him.

My husband and I were now beyond frustrated. We had known that there was a possibility that our son would end up back in the hospital some day - after all preemies are more susceptible to illnesses - but twice in as many weeks? And it hadn't even been a month since the NICU had sent him home!

The following week we went in for another check up with our pediatrician, and right as I was getting ready to put our son in his car seat, he stopped breathing for a second time. Our doctor began doing rescue breaths, and as soon as he began breathing again, put him on oxygen. The fire department and paramedics showed up, and once more we were packed up into an ambulance and driven down to Miller's Children's Hospital.

The ER doctors gave us the choice of going home or having our son admitted. We chose to have him admitted because obviously there was something going on and we were sick of being told that everything was fine and it was okay to take him home only to be back at the hospital a few days later.

That night we found out that during our second stay at the hospital our son had been diagnosed with Chronic Lung Disease, though no one had ever told us that - not even his pediatrician.

More tests were done, including an EEG to see if maybe he was having seizures, but everything came back normal. Pulmonary continued to insist that his breathing issues were something that he would grow out of, and blame the apnea issues on his reflux. GI decided to up his meds, but pointed out that since his reflux was under control, there was no reason for him to have apnea episodes any more. The regular pediatricians just shrugged and said they had no idea.

It got so bad at one point that Occupational Therapy recommended us for palliative care - not because our son was severely ill, but because it was clear that there were too many cooks in the kitchen, and no one was communicating very well.

Unfortunately, the palliative care nurse didn't think we qualified for palliative care, so we had to muddle through the mess on our own.

And then a few days later our son was discharged, even though we still had no idea what was causing his tachypnea or his apnea episodes. All the doctors would tell us was that 'he was fine here'.

We were beyond frustrated. It felt like they were insinuating that we were doing something to our son to cause his problems - in fact Pulmonary repeatedly brought up my husbands smoking, even though he didn't smoke anywhere near the house, washed his hands and face when he came in the house from smoking, and changed clothes. It also seemed like any time we suggested something that we thought might help - like an air purifier or a humidifier - we were told that it was useless and not to bother, which didn't make sense to us. If there was something in our house that might be causing his issues, like dust, wouldn't a purifier help that?

Thankfully there haven't been any more issues since our son came home from the hospital this last time. We continue to work with GI to treat his reflux, and we go to occupational therapy appointments every week to work on his swallowing issues. Our baby boy is thriving, and has pretty much caught up weight wise with the rest of the babies his age (in fact, he caught up so much so quickly that his GI doctor calls him a chubby monkey).

He still has bouts of tachypnea now and then though, so yesterday they finally agreed to do a CT scan of his chest. Hopefully we will have some answers soon.

Adventures in the NICU #4

Our baby was moved into an open crib that night - but this time the nurses were smart and moved his crib away from the air vent. Once they did that, he did much much better and maintained his temperature easily.

Unfortunately I wasn't doing so well.

Over the weekend, my post partum bleeding had gotten heavier and heavier. So much so that I often felt I was spending more time in the bathroom tending to it than spending time with my son. I had called one of the doctors at the hospital regarding it, but she had insisted that having such a heavy flow, and passing large clots was fairly normal considering the fact I had such a large fibroid.

I trusted she knew what she was talking about, but another part of me was worried. The blood clots were now the size of the palm of my hand, and I was going through a pad an hour. Everything online said that that was not normal even though she swore it was. Finally a family friend pointed out that I needed to go to the hospital because it sounded like I had a retained placenta - which, considering I had had placenta abrupta when I had delivered my son, was entirely possible.

My husband and I drove down to the ER, where I was brought into one of the triage rooms. My pulse was higher than normal so I was escorted into the back. There they took my blood, hooked me up to an IV, and escorted me to an ER bed.

Over the next five hours, the ER doctors ran several tests. Finally they explained that while I did not have a retained placenta, the fibroid wasn't allowing my uterus to shrink normally (In fact it still felt like I was four months pregnant when they did their examination) and the uterine lining was unstable as a result. This was why I was bleeding so heavily.

In fact, I had lost so much blood over the past few days that they needed to admit me and do a transfusion. Normal hemoglobin levels for an adult woman is 12 to 16 - mine was 8.

The doctors wanted to put me in the post partum ward, where I would be close to them in case anything went wrong, and where the nurses knew how to handle situations like mine. Unfortunately the only bed they had open was all the way over in Oncology though - which was on the other side of the hospital.

The next 24 hours were absolute hell. The blood was supposed to be ready as soon as we reached the room but it wasn't. Apparently the nurses thought the blood bank was supposed to call them, not that they needed to call the blood bank. It took my doctor showing up on rounds and yelling at them to get them to do their job. In addition to that, the ER had put my IV in a horrible spot - the crook of my elbow - so any time I moved, or, heck, even looked at the IV the wrong way, it would stop and an alarm would sound. Even though I was right next to the nurses desk, and they could hear the alarm, whenever I clicked the call button and told them what was going on, it would take them sometimes an hour to check on it. Finally I had asked to be brought a breast pump so I could pump milk for my son, but they never brought one.

To add insult to injury, once the blood transfusion was complete around 6pm the nurses wouldn't let me go see my son in the NICU until they did a blood test to make sure my levels had gone up. They said they called the tech right then and there, but when she showed up at 8pm, she told us that she hadn't been called to come over until 750. Unfortunately that blood test came back showing my levels were lower than they had been when I entered the hospital. Rather than realizing that that had to be wrong and doing another blood test themselves, the nurses called up my doctor - who then proceeded to yell at them again and tell them to do another test. That took another hour and a half, because, again, the nurses didn't call the tech to come and do the blood test like they were supposed to until my husband yelled at them. Then once that blood test was done the nurses still didn't want to let me go to the NICU until they'd had another chance to talk to my doctor.

I had a melt down. It was ten o'clock. I hadn't slept in 36 hours, I hadn't seen my son in over 24 hours, and a simple transfusion that was supposed to take 6 hours had taken 12 because these nurses were incompetent and would rather spend their time at work gossiping rather than doing their jobs. My husband started yelling again, and my mother in law also got involved and gave them the what for.

Finally I was allowed to go and see my son.

Of course by the time I made it to the NICU it was past his feeding time and the night nurses there didn't want me to bother him. Thankfully, once they heard my story, they broke down and let me hold him even though it wasn't his 'touch time'.

I was pleased to see that he had been moved back into a crib. In addition to that they had also moved the crib out from under the air vent, so he was maintaining his temperature better than he had the first go around. In addition to that he had also been finishing his bottles since 5pm that night. If he kept up the good work, the nurse told me, they would be able to remove his NG tube.

By the time my mother in law and I made it back to my room from the NICU, I had finally been discharged from the hospital. Also, the manager of the nurses for the area had come over and apologized for what had happened and had offered us a free parking pass - as if that could make up for the hell we had been through.

We finally made it home and I promptly collapsed in bed.

The next day, after I'd had a chance to shower and eat, my mother in law drove me back down to the hospital so I could see my son. Thankfully he was still doing well; he was maintaining his temp, and he had finished all his bottles through out the night, so they had removed his NG tube just like the night nurse had told me they would. The day nurse told me that if he continued to finish his feeds for the 24 hours, then he would be discharged on Friday.

I stared at her in shock.

FRIDAY? My son would be coming home FRIDAY? We had originally been told not to expect him home until his original due date! We were not prepared!

The next 24 hours were spent rushing around to get everything ready. My aunt and my cousin had bought a travel set for us that included a stroller and a car seat. They dropped that, and plenty of diapers, off the next day and my husband and I spent a good hour trying to figure out how to install the car seat base in my car. Then we had to clean our room, move some of the furniture around, and set up his bassinet.

Just as the nurse had told us, after being circumcised and receiving his first vaccination, Garrett was discharged the next day.

We carried him out of the NICU very carefully, and drove home oh so cautiously. Then we sat him in the living room in his carrier and looked at each other as it slowly began to sink in.

Our baby boy was home!

Adventures in the NICU #3

The next day we had the same nurse again. She was still grumpy and condescending. In addition to that she still moved things out of our son's incubator - but at least this time she explained why. Apparently the doctors wanted to try to move him into a crib by the end of the week since he was large enough now that he should be able to maintain his own temperature on his own. Once he made the move to the crib, he wouldn't be allowed to have any stuffed toys or blankets in there with him, just like he wouldn't be allowed to sleep with toys or blankets if he were at home.

They turned off the temperature for his incubator, raised the lid, and bundled him up in a preemie hospital shirt (which was way too big), a hat I had made him (which was also too big), and then they swaddled him in a blanket.

Throughout the day they checked his temp every couple of hours. He was maintaining it well, but once night time came, his temp dropped, so they closed the lid on the incubator and turned the heater back on. I was sad to see that when I came in the next morning, but, at the same time, I reminded myself that he was still young. He would get there eventually.

Eventually turned out to be two days later.

I walked in to the NICU to find that one of our son's neighbors had been moved into an open crib. I commented on it to his nurse for the day and she smiled back at me telling me that he wasn't the only one who had graduated. I blinked at her a couple of times in surprise, and then walked over to my son's cubicle to find that, yep, he had been moved to a crib as well!

I promptly told my in laws, who rushed down so they could hold him and see him without all the wires.

The next day we had to deal with yet another nurse who harassed me about my milk production. I was finally beginning to produce 40 to 50 mls, but in her opinion that wasn't enough. In addition to that none of the clothes we had brought for our son to wear were good enough. Apparently she required that all onesies, pajamas, and sleep and play suits should have buttons. The sleep and play suit we brought had a zipper which was just not acceptable. Also she had started bottle feeding our son without calling us to notify us so we could be there. Last but not least, I was having some problems that evening - my post partum bleeding had suddenly increased drastically and now included large blood clots, so I had to keep running to the restroom to attend to them. Every time I passed her she quizzed me about how I had done on my latest pumping, and when we would be getting our son something better to wear, and if everything was okay.

I spent most of my time visiting my son crying because of her behavior and finally her harassment got so bad that my husband and I had to leave - which made me feel even worse.

To top the horrible day off, we got a call later that night from our son's night nurse telling us that he could not maintain his temp and was moved back into an incubator after being in a crib for a day and a half. My husband and I were disappointed, but not surprised - when we had changed him out of the NICU preemie shirt and into the sleep suit, we had noticed that he was bundled up pretty heavily. Even though the doctors had thought he was ready, it was obvious that he was not.

I went in early the next morning, wanting to reassure myself that my son was okay, and protect him from that nurse just in case he had been assigned her again. Thankfully he had someone new, a girl who was on rotation from the PICU, and who was just as shocked as we were by the other nurse's behavior. On the downside we discovered that several of his things were missing; his hat, his stuffed zero, and the lovey that had been in his incubator from day one. Everything else had been moved over, but apparently these items had been overlooked.

The hospital had always said that they were not responsible for personal items, but it was upsetting that when they had switched him back to his incubator they hadn't taken five seconds to open a drawer and make sure everything had been cleared out.

We told his nurse, and she promised that she would call the nurse he had the night before. However she never did. It was the night nurse who finally found them and she was only able to do so because the crib he had been in had not been cleaned out yet.

The following day the doctors were determined to get our son into an open crib. The nurses began preparing him for the transfer once more by turning off the heat on the incubator, raising the lid, and bundling him up. For awhile, he maintained his temperature fairly well, and then it slowly began to drop. The nurses were exasperated.

Suddenly an idea occurred to me. Our boy was staying in the isolation room for the NICU because it was the only space they had had open when they had transferred him over from his old NICU nursery. It was a nice little room, but it was enclosed with heavy glass doors and windows, where as all the other rooms were cubicles and were open on one side to the rest of the NICU. Also, there was an air vent directly over his incubator. The other cubicles had air vents as well, but they were located closer to the corridor running down the middle of the NICU, and not directly overhead.

I pointed this out to his nurse who agreed that the room was colder than the rest of the NICU, and that this was probably why he was having problems with his temp. She called up the maintenance department to see if they could raise the temperature in the little isolation room, but they claimed that they could not and that it was warmer than the rest of the NICU.

Both the nurse and I called shenanigans on that.

As there was two babies going home that day, she suggested that we try moving him out of the room and into one of their cubicles. She told us that she would keep us updated, and we headed home for the night.

Little did we now that we wouldn't be away from the hospital for very long...

Adventures in the NICU #2

On Thursday, my husband and I had our first conference with our son's doctor and his social worker*. We had met both before, but this was our first meeting together, away from baby boy's bedside.

We discussed what milestones he needed to meet before he could be discharged. I already knew most of them thanks to a friend who's daughter was also in the NICU, but it was good to hear them again. The doctor was hesitant to give us an exact ETA on when he would be discharged, saying that she had seen babies leave earlier than their due date, and babies who had left later than their due date - it was all up to baby boy. 

Considering how well he was doing so far, I totally expected that he would be out of their sooner rather than later. 

His nurse that day was not someone who normally worked in the NICU, and, as they had given her three babies to watch over, I suspect she was a bit overwhelmed. She let me hold our son during feedings longer than normal, which was nice, but I worried that his jaundice levels would go up as a result.

Thursday was also the day my husband brought up baby boy's hearing. He had noticed that when alarms went off, or other baby's started crying in the unit, our son didn't react. As the day went on I noticed the same thing, but the nurse quickly pointed out that since he had been in the NICU since he had been born, he was used to the noises which was why they didn't faze him - but if something unexpected happened, like the fire alarm going off, he did react. 

Sure enough, when my husband came to visit that night, he opened one of the windows on the incubator to reach in and touch our son. The window swung open really fast, and my husband didn't catch it in time, so it banged against the side of the incubator, and baby boy flinched. 

Yup, his ears were working all right.

Despite my concerns about hims being out from under the lights for longer than normal the day before, Baby Boy's jaundice levels had gone down enough on Friday that the doctors stopped the phototherapy. It was lovely to be able to see his beautiful face again outside of feeding time, and he certainly enjoyed looking around. He was especially active when my Aunt brought my Uncle to meet him!

In addition to stopping the phototherapy, they also removed his oxygen pulse sensor, and his temperature sensors - so that was two less wires to worry about when we held him.

Little did I know that we would soon have a whole new problem to worry about - breast milk.

As soon as our son had been born I had started pumping every three hours. I woke up in the middle of the night to pump. I pumped while at friends and family members houses. I pumped at the hospital. I had even rented a hospital grade pump from Baby's R Us to use at home, since the one that WIC had loaned me was total crap. However, the most I could get was 20 to 30 mls at a time - which was just barely enough for the nurses to use.

Since I was having issues producing the milk needed, we had signed a release allowing the hospital to give our son donor milk. However, the hospital was running out of donor milk and would soon be switching our son to formula. While there is nothing wrong with formula - heck, I and my cousins were raised on it - my husband and I had both read that breastmilk really was best for preemies like our baby.

I began to feel like I was failing my son - and we hadn't even brought him home yet!

His nurse that day questioned me about my breastmilk production. I explained what I was doing, and braced myself for a lecture. Instead, she offered a couple of suggestions that she believed would help improve things: first she pointed out that I needed to stop wearing an underwire bra, because apparently that could cut off blood flow which would affect my supply. She explained that I should be wearing nursing bras, or going, as she put it, 'free bird'.

Since our son had been born so early, neither I nor my husband had been able to take any classes, and I had no idea that wearing the proper support (or not wearing any support at all) could affect things.

Then she suggested indulging in a beer every night. 

Surprised, I gave her a look, and she quickly explained that she wasn't promoting alcoholism, but that some of the ingredients in beer helped with milk production. A couple of friends agreed with her when I mentioned it to them. 

It still sounded strange to me, but I figured it was worth a shot. 

Friends had also suggested trying Mothers Milk tea and Fenugreek. I couldn't find any Fenugreek at Target, but they were having a sale on Mothers Milk tea, so I stocked up on that. It seemed to help a little.

The next day we took our son's godmother to go and meet him. Afterwards we went to dinner and I shared a beer with my husband.

The next day things improved dramatically. Just like the nurse and my friends said, the beer had really helped! Unfortunately, they had also upped the amount that they were giving baby boy at every feeding, so now I was playing catch up.

On Monday a nutritionist for the NICU stopped by to remind me that they were running out of donor milk, so they would be switching our son to formula soon. Unlike the nurse I had encountered on Friday, she was more condescending and critical, and I began to feel, yet again, that I was failing my son.

However, despite her miserable attitude, she did do something good - she sent in the lactation consultant to speak with me. The lactation consultant and I went over everything that I was doing and she reassured me that I was doing everything right. Unfortunately, it's just harder for some preemie moms to produce milk because we're pumping and we can't actually breast feed our babies from day one like normal moms. Since breast feeding releases hormones that help with milk production that pumping can't, she suggested we start doing non nutritional breastfeeding.

Since our son was being fed through an NG tube that went from his nose down into his stomach, that would be his primary source of nutrition, but doing non nutritional breastfeeding would help teach both him and I how to breastfeed so when it came time for him to start nursing, we would be ready to go. Plus, having him latch on would help release those much needed hormones, and would help bump up my milk supply.

At the next feeding we pulled the curtains closed, and the lactation consultant showed me how to hold my son and how to get him to latch on. It was a lot more involved than I thought it would be, and he was very resistant to latching on at first, but eventually we figured things out and it wasn't long before he was sucking away.

The next day was a bit crazy. I had my first postpartum follow up in the morning, which meant I wasn't there for baby boy's 11 o'clock feeding like I normally was. When I finally showed up, he was fussier than normal and was actually crying a bit. I quickly soothed him and apologized for not being there.

And then I met the first NICU nurse from hell.

Any time my son began to fuss or cry, she would show up and glare at me and give me this attitude as if I done something to cause him distress. In addition to that when I asked if I could hold my son during his feedings, which is what I and my husband always did, she acted as if it was too big of a hassle to do that. And even though the lactation nurse had put in our son's file that we were allowed to do non nutritional breastfeeding, she refused to let me do that. Last, but not least, she kept removing things from our son's incubator. We had brought him a little stuffed zero from home and kept it inside the incubator, but well out of our son's reach so he wouldn't smother himself on it. Any time I left to do go to the restroom or get something to eat, I would come back to find it, and my son's lovey missing.

I had won an opportunity to see the fist episode of Outlander that evening, so my mother and law and I went off to see it while my husband stayed behind. Apparently the nurse did not give him any problems - but then he's a big intimidating guy. However even he admitted that it was a relief when the shift change happened and the night nurse came on.

*Regardless of how they came into this world or what their familial situation is, every baby in the NICU has a social worker. Ours was a lovely woman who got me a letter from lactation so I could get my breast pump from WIC, offered to set me up in a parent room or over at Ronald McDonald house if I needed it, and told me a tip that helped with parking 

Small but Mighty...

The last time I posted was a little over a month ago, and, as you can see, a LOT has happened since then. At that time I had been in the hospital for 18 days, and, to my surprise, I was actually discharged to continue my bed rest at home the very next day since both I and the baby were stable enough! Unfortunately, I was only at home for a grand total of 3 days before going back to the hospital for preterm labor again. They kept me for two more days, then released me yet again because the contractions had stopped and I and baby boy were stable. And then twelve hours later I was back at the hospital again for preterm labor (So much for being 'stable' right?)

However, this time things were progressing far too quickly. So quickly, that the doctors told us they wouldn't be able to stop it. 

At 4:53 pm on July 16th, my son was born

You know, how a few months ago I said being pregnant was the greatest WIP ever? I was wrong. Taking care of this this little guy is the greatest WIP ever!

Despite the fact that he was only 31 weeks and 4 days along when he was born, he is a strong and determined baby. We had been told by the NICU doctors that we wouldn't be taking him home until his due date - well, he actually came home after 3 weeks and 2 days!

Even though he's doing well, I'm still having some issues. During labor I hemorrhaged and then last week I began to hemorrhage again! Another hospital stay and a blood transfusion later and I'm doing much much better - however it looks like I'll be going in for surgery next month (pending insurance approval). The doctors (both the ones I met during my various stays in the hospital, and the one I was seeing prior to everything going down) believe that the cause of the preterm labor and my issues since then is a large fibroid hanging out in my uterus, and it needs to be removed pronto.

Anywho, as a result of all these things going on I haven't had much time to write (now that things have calmed down, hopefully that'll change). But I have been thinking a lot about an old nano project of mine. Since today's date is the 13th, here are 13 sentences from the first chapter of that project.

The vagrant had chosen to fall asleep across the wrong doorstep this time; instead of being rudely awoken by a kick to the side and being told to move by a grumpy shop keep, he was pulled to his feet and shoved in the back of a wagon. It was crowded with other poor souls who stunk just as badly as he did, and one or two moaned in pain as he collided with them. Blinking away the last of his drunken haze, he was able to make out a man dressed in the uniform of the city guard shutting the door and locking it. He had heard rumors that the King had wanted to clean up the streets of Anglon’s capital, but this was a bit extreme.
“Another happy colonist!” The man cried out. “And another groat for us!”
“Only if they’re still breathing when we get them to the docks. They won’t pay for dead ‘uns.” Another guard poked the vagrant  with the butt of his staff to make sure the man was still alive - as if his groan of pain hadn’t been a good enough sign.
A colonist? Docks? The vagrant hadn’t signed up for any sort of expedition... at least he didn’t think he had.

To read more WIPpet Wednesday posts, please go here.

To read more about my time in the hospital, go here, and to read more about my son's stay in the NICU, start here.

Adventures in the NICU #1

After the nurses cleared me to visit my son, I hopped (actually I sat down very very gingerly) in a wheelchair and a volunteer pushed me over to the NICU while my husband followed.

Long Beach Memorial is quite a maze. There's the birthing center, the main hospital, and the children's hospital. My husband and I were already familiar with the birthing center, and the hospital lobby, but the children's hospital was a mystery to me. The volunteer explained that to reach the NICU we could go through the nursery (only if we had a nurse with us though), or we could go down to the elevators, make a right down this one hallway, then a left, then another right, and there it was.

Once at the NICU we had to sign in. Then we had to wash up at these old school sinks. You pressed a red button to turn on the water, and scrubbed up while the light was green, when the light turned yellow, you rinsed off, then dried off, and then you could enter the NICU nursery.

I gingerly stepped out of the wheelchair, dragged my IV over to the sinks, scrubbed up, and then followed my husband into the nursery.

Thankfully my little one was in the first incubator on the right, so I didn't have to walk far.

Unfortunately, by the time we got there, they were getting ready to give our baby an umbilical IV. It's a sterile procedure, so only those in hats and gowns were allowed to be near the incubator. My husband and I explained that I had only been able to see our son for a second after he was born, so the nurses made an exception and allowed us to take a peak at him before they got started.

At 3 pounds, 15 ounces, our baby boy was tiny. However he was long, clocking in at 16.5 inches. Despite the loud cries he had made at birth, they had him on oxygen, and it was heartbreaking to see his little face covered up by the mask. I had thought the steroids had helped, but apparently not.

After a couple of minutes the nurses ushered us out of the room and we headed back to the Post Partum ward. They had told me that I could come back in an hour or so, but my husband insisted I relax and get some sleep since I had been through so much. Plus, in the morning my nurse would be removing my IV, so it would be easier to get around since I wouldn't be dragging an IV pole around.

As much as I wanted to spend as much time in the NICU as possible, I listened to my husband's advice and crawled back in to bed. I was able to nap a little before the night nurse came in and showed me how to pump and advised me that from here on out I would be pumping every three hours to establish a milk supply for my boy. He was too young to nurse right now (babies don't develop the coordination to suck, swallow and breathe at the same time until around 34 weeks) but once he was stable they would be feeding him through a tube that went through his nose into his stomach, and they would need the milk then.

The night nurse was fairly impressed by what I was able to get whenever I pumped that night, but by morning my supply had dwindled. She told me not to worry, and explained that it could take up to a week for my milk to come in - I just had to keep at it.

After breakfast, and after the nurse had removed my IV, I headed back down to the NICU. At some point during the night, they had removed my son's oxygen mask, and he was breathing room air without any issues. He was having some issues with his blood pressure, but he was responding well to his medication. Also, while they were giving him nutrients through his umblical IV, the doctors wanted to do something called a PICC line (which is a more permanent form of an IV) instead - but they wouldn't do it until that afternoon when the PICC nurse was there.

The nurse watching over him said it was safe for me to open up the incubator and reach in and touch him - however I couldn't do so for very long because they didn't want him to get cold. I quickly opened the door and reached in and touched his head - which was covered in a full head of hair - and marveled over how soft his skin was.

I stayed for two hours, before finally returning to my room in the Post Partum ward. I didn't want to go, I would've stayed there all day if I could have, but I needed to go to the restroom and it was almost lunch. Plus my Dad and Stepmom had brought breakfast for me since the hospital breakfast had been so disappointing.

Others stopped by throughout the day, bringing flowers, gifts of soda and reeses peanut butter cups, and company. Finally, after my husband got off work, he brought the biggest present of all - himself and In and Out.

Once we were done we went back over to see our baby boy. The doctor stopped by and explained that they were worried about how red and bruised he was. They decided to start phototherapy to help prevent jaundice.

My husband was able to touch his son for the first time, and he agreed that his skin and hair were soft. Then baby boy grabbed his finger in his tiny hand and my husband and I absolutely melted.

By the next day more photo therapy lights had been added to baby boy's bed. Apparently his jaundice levels had gone up over night. It was sad to see, but we weren't very worried since most babies nowadays seem to develop jaundice and, as a preemie, baby boy was just more susceptible to it.

Since they had added the PICC line, he no longer needed the umbilical IV, so they removed that - which was good to see. In addition to that his blood pressure had finally stabilized, so they had stopped those medications.

Because he was doing so well, there was talk of moving him to one of the other NICU nurseries - but that wouldn't happen until later that evening or very early in the morning.

Finally, since I was being discharged that day, the nurses allowed my husband and I an opportunity to hold our son.

He was a bit fussy at first, which we suspect was because they had the oxygen sensor wrapped around his arm. The connector is heavy for a newborn (heck its annoying for an adult to deal with!) so the nurse moved it to his leg instead and he calmed down quickly. We cuddled with him as long as they would allow, and then, with heavy hearts, we headed home.

The next day we were up early and headed back down to the hospital. Just like the doctor had warned us, over night our baby boy had been moved to a new NICU nursery. Thankfully, this one was closer to the entrance of the Children's hospital, so it was easier to get to. It was also much much newer and larger than the old NICU.

The phototherapy seemed to be working. Our son was still very red, but it had faded a lot from the day before. Also the bruising on his forehead (a battle wound from being born) had faded, as had the red mark on his nose. He had also lost a little weight (which happens with newborns). Thankfully it seemed to be mostly water weight as his swelling had gone down significantly.

They set him up with his feeding tube, and to ours and the nurse's surprise, he didn't fuss or complain while they were putting it in. He did sneeze a few times, but that was understandable since there was something going through his nose - poor guy.

We were allowed to change his diaper, and afterwards we read him a story one of my Aunts had mailed me. I had wanted to read him Harry Potter, but I was too emotional for that just yet.

Sunday we went to church for the first time in a month. It felt soooo good to be out and doing something normal. Sadly, we couldn't stay to chat with people afterwards because I had to run home and pump. But I'm sure they understood.

When we finally got to the hospital the nurse explained that as soon as his feedings reached the maximum the doctor had inputted into the system they would be removing our son's PICC line. Which was good, because it was in an awkward spot on his arm. Whenever he bent it, the alarm would go off, and he hated having to keep his arm straight. He would cooperate for awhile, but it wasn't long before he had wiggled around so much that the splint had fallen off. The nurse finally started placing a bean bag on his arm, but he was such a determined baby that he eventually figured out how to free himself from that.

Since his jaundice levels were a little better, we were allowed to hold him while he was fed. I jumped at the chance for skin to skin time, and our son enjoyed being out of the incubator. He looked around, staring at his dad, then me, then back again. I hated having to put him back, but hopefully the phototherapy would be over soon.

Monday was a bad day. I had posted something online talking about how my stay in the hospital had made it easier to get up every couple of hours to pump and not be tired. A friend commented that I should get used to it as I would never sleep again. A lot of people had actually said something similar to this ever since baby boy had been born - but this was the one comment that broke the camels back. Didn't our friends understand that our son was in the hospital? That we hadn't been able to take him home like a normal baby because he had been so early? That we would give anything to have him at home with us? Every time someone made a comment like that it was like rubbing salt in the wound.

I spent most of the morning bawling. I did better once we were at the hospital and I was able to hold our son, but then I had to leave early to go to a WIC appointment, and I was bawling once again - this time because I felt like I had been rushed and hadn't been able to spend enough time with him. I went back after the appointment though, and finally calmed down when the nurse reminded us that we could visit whenever we wanted.

The next day was a much better day. I was able to spend all day at the hospital, and my Mom and my Aunt finally got to meet our son. We went out to lunch afterwards, which was really nice.

On Wednesday, more visitors stopped by - this time my cousin and two of her daughters.

Also, baby boy was finally up to his maximum feedings, so they finally removed his PICC line. My son was free to wriggle around as much as he wanted to, and boy did he ever! He kicked off his cover and stretched out his legs, enjoying his freedom.

In addition to that, when it was time for his feedings, the nurse had me hold him, gave him his pacifer. She then took a tiny syringe full of a little extra of my breast milk, and would stick it into his mouth next to his pacifer and give him a few drops at a time. Baby boy loved it and happily sucked away.

This was a pretty big deal since one of the big steps he had to conquer before going home was learning how to breast or bottle feed. Normally baby's don't pick up the coordination to suck, swallow and breath until they're around 34 weeks. Baby boy was only 32 weeks adjusted (one week old officially) and they weren't supposed to start working with him on breast or bottle feeding for another couple of weeks - but he was so smart he had figured it out on his own.

Afterwards he wanted nothing to do with his pacifier unless a nurse pulled the same trick again!