Nathaniel's Later NICU Days

After Nathaniel weathered his first infection, it was somewhat smooth sailing to release, as long as you overlook one huge bump in the road.

He was moved to the Feed and Grow part of the NICU nursery. There, he got increased feeds, learned to not brady as much (bradycardia, which is forgeting to breathe), and slept a lot. We also kangaroo'd every day, for longer and longer stretches, until my rear end could handle 3 hours long. It was wonderful.

At some point, the nurses and I talked about me returning to my hometown. See, I was an hour and a half north of my home, staying in the Ronald McDonald House, eating in restaurants. While I was off for the summer, I needed to return to work at the university by mid-August. And it was nearing time. At one point, I moved home, just so I could mow my own lawn (saving $35 a week), read my mail, and feed the cats (a cat sitter had been doing it for $15 a day). The drive up and back was a killer, especially when I had to time it to be between my every-3-hours breastpumping sessions.

You see, babies can't suck until 34 weeks, so I had to pump every 3 hours (or less) for over 6 weeks, just like having to breastfeed a newborn. He was getting breast milk via a tube from his mouth into his stomach.

So, there we were, talking about Nathaniel being moved from the Level III NICU to the local Level II NICU, which would necessitate an ambulance ride and room in the new NICU. Well, the new NICU was full. All of a sudden one day, I got the notice that he was being transferred. In 30 minutes. A baby down in my hometown needed to come up to the NICU (he was critically ill and needed the additional services offered there), so Nathaniel had to hightail it down there to give the kid room up here for him to come.

In 30 minutes. Well, my son enjoyed his ambulance ride and suddenly, he was esconsed in his new NICU, which was markedly more informal and relaxed than the other NICU. I must say I grieved for the expertise of the first NICU unit, especially how the nurses had so many skills. The nurses in the new NICU were probably more experienced than I first anticipated; however, they did not use the same technical language I was accustomed to, so they just SEEMED to be less professional. I also did not like being referred to as Mom. I have a name ... and if I can remember a nurse's name, she can darned well remember mine.

Well, after I adjusted to the NICU, I realized my son had adjusted just fine. He was smiling, winning people over with his huge blue eyes and nosy personality. I insisted on Kangarooing, as usual, and belatedly saw I was the only one practicing it. Cultural differences, perhaps.

Things went well, Nathaniel cut back on his nasal cannula needs. He upped his feeds wel, tolerating the higher amounts. And I stopped breastfeeding. I'd seen lactation consultants galore. I tried different pumps (had 5 at my disposal), ate and drank what they told me to, got sleep, tried to smell Nathaniel's clothes, thought warm and fuzzy thoughts, and never got more than an ounce total each pumping session. And by this time, my son was taking two ounces a meal, so half his feeds were already coming from formula. Finally, out of desperation, I tried Reglan. Not the thing to give a woman already experiencing depressive issues (I was later diagnosed with PTSD). I crashed. It made my brain fuzzy, not something I wanted or needed. And it didn't work. So I quit.

And could not have been happier with the decision.

It wasn't until I met with the obstetrician that I fully understood why my body did not produce milk as well as it should have. First, I had an ultra preemie. He wasn't able to suckle. Then there was the major surgery, the C-section. Next, due to all the transfusions I'd had, my body was essentially in shock. Next, having a NICU baby was considerable stress (duh) and doing it solo, it was all on me, with a limited support system. Another factor was my gallbladder surgery, another major surgery. Last, I had PTSD from the experiences leading up to the delivery. So in all, my body was revolting, saying that this milk train was NOT leaving the station.

So Nathaniel was fed all formula from then on. While "breast is best" and all that, I was a formula baby myself and look how I turned out. Pfft! (BFing Nazis and I don't like each other.) It did soothe my heart to know that the only immunities I gave my son were in the colostrum, that regular breast milk does not provide any additional ones.

The major hiccup in all this was when Nathaniel developed reflux and no one paid any attention to the pain and discomfort he was in. I could not get the doctor to really see my child and figure out what was wrong. Nathaniel is my first, so I had no prior knowledge to work with. All I knew was that he was not a happy camper and something was wrong. The doctor said his trouble feeding was developmental and he was a boy, and boys take longer to develop. It was a load of crud. Yes, PART of my son's problem turned out to be developmental (an immature suck, for one), but the other part was all reflux. And no one was looking at him to figure it out.

I asked for a second opinion. Nada. I called my folks and ranted about this, tried to get OT and PT and Speech in to figure it out (no luck - they just parroted what the doctor said), and scoured the internet for help. I figured it out a good 6 days before the doctor, the scumbag. (Can you tell I'm just a BIT bitter about this???) Well, I strategized with my counselor (I was seeing her for the PTSD) and decided on a course of action. I walked in that Friday, down because I knew nothing could transpire that evening and so discouraged because no one was listening to me ... to find my son was FINALLY being treated for ... tadah! ... REFLUX!!! Come on, I am not the doctor, boneheads, you are! Why could you not see this before I did, it's a Neonatal INTENSIVE CARE UNIT?!!

OK, so they put him on Zantac (best thing since sliced bread) and riced his formula. We had issues from the start, clogging issues. The rice cereal blocked the nipple. I changed to Dr. Brown's. Still clogged. I went to cross-cut nipples. Still clogged. I felt like it was all equipment issues and since part of the problem was the immature suck, the poor kid could suck adn suck and suck away but he couldn't get it unclogged. A month passed as the poor kid get so sacked from his feeds, unable to drink all that the doctors required him to drink. And then 2 things happened.

One, a doctor advised GRINDING his rice before addition to the formula. This removed the clogging factor.

Next, the nutritionist recalculated his calorie count of the feeds, finally adding in the calorie count for the rice, and suddenly,my son was meeting and exceeding his required feeds on a daily basis.

Once this recalculation occured, it was obvious the kid was doing great. Along the way, though, he would have arching issues, a sign of discomfort from the reflux. The problem was not solved while in the NICU.

Also along the way, Nathaniel caught MRSA. He was colonized with it in his nostrils, which meant he had to be isolated from the general population and basically treated poorly, IMHO. Here he was, a term baby finally, and he lost all stimulation by being placed in isolation. It broke my heart and still, to this day, makes me furious that he was so treated. I realize hospitals have to contain the infection spread, but really, when you even agree it was hospital-acquired and not from Mommy, you should do everything you can to ensure the child does not suffer. And that means leaving him in the general population and not isolating him.

(We know he didn't catch it from me, since I have developed 2 MRSA infections since his release, once a boil in the nose and recently a boil on the back of my leg.) Let's hope this is over soon.

Well, one day I was told he was going home the next day. And I called my folks to have them come on up. It was a wonderful day when he was released. While I was a frantic worrywart (about infection control, mainly), I treasured finally having my son with me. And I shall leave it at that for tonight - I shall soon write about meeting the pediatric gastoenterologist, a life-changing event. :)

Nathaniel's Early NICU Days

Nathaniel was a tiny little guy when he was born - 2 pounds, 8 ounces. He lived in the Acute care section of the NICU for about 8 days, during which he got his initial 2 transfusions (I'd lost a lot of blood, some of which was his), artifical surfactant, and several evaluations. He had Respiratory Distress Syndrome, a normal enough thing for 28 weekers with immature lung development (despite the steroid shots I got prior). Due to the RDS, Nathaniel was struggling to breathe, so the doctors ordered him hooked up to a ventilator. He was transferred from the regular vent to the oscillating vent within hours, to better enable him to breathe. The oscillator shakes the baby, keeping the alveoli inflated, a necessary step towards independent breathing. After the oscillator, he went back to the normal ventilator. At some point, he was extubated (the days are a bit hazy) and placed on vapotherm, which is a nasal cannula with moisturized oxygen/air. Nathaniel varied between 40% and 23% oxygen content. Room air is 23%.

A clergywoman blessed him on his first day of life, to my everlasting gratitude.

Nathaniel showed himself to be a fighter from the first day. He lifted his head and turned it to face the nurse before he was intubated, a show of strength and will. I'm hoping he glared at her, since she was the one who told me I had the "sickest baby in the NICU", not something ANY mother ever wants to have. And the shock was not necessary. I was ALREADY in shock, for goodness sakes.

While Nathaniel was in Acute Care, we kangaroo'd. Kangaroo care is a technique whereby the parent sits sans shirt, etc. skin-to-skin with the preemie. Preemies meanwhile will regulate their breathing to Mommy, maintain a steady temperature, and sink into a deep healing sleep. Kangaroo'd babies also gain weight faster. I became an avid Kangarooing Mommy. Helen, his nurse on the 5th day, said it was time to hold him. (I hadn't held him yet.) She placed him on my chest. I bawled. Copious, meaningful tears. Then he fell asleep. I was so worried I'd break him. I could not imagine holding him as casually as Helen did ... but it worked. We were together that first day for about 30 minutes. Helen took his measurements and he had stayed warm, his heart rate was fine, etc., and did I want to do it tomorrow?

Heck yes.

I have pictures of us on that 5th day, him so dark and red (from the transfusions), me so spindly pale (from the shock and fatigue). But he was so peaceful looking and I was so happy. I finally had my little boy.

On his 13th day of life, Nathaniel fell ill from a staph infection. The nurse caught it early, just from him not acting like himself (I guess he'd made no escape attempts that day) and put him back on the vent as well as on antibiotics. He never even got a fever from it, because preemies don't have an immune system to kick on with a fever. They are essentially sitting ducks. As I was getting updated on his status and felt a pain beginning in my lower abdomen. Thinking it was a panic attack, I told the nurse I was going to trust her, that I didn't feel so good, and that I was going to go lay down.

And laying down did not help, so I walked to the ER, a short elevator ride and hall hop away.

That night I got my gallbladder removed in emergency surgery. The poor physician's assistant who had to go get me a breast pump from the NICU could not imagine the single-minded devotion I had to taking care of my son. So Nathaniel was on the 9th floor recovering and I was on the 5th floor recovering.

The next morning, I bounded up to see him, as healthy as I could be with 4 holes in my abdominal region, and he had weathered the night very well. See what a fighter I have?

The Story

On a Monday morning in July, I awoke to minimal bleeding when I used the toilet. I panicked. I wiped again, more bleeding. I knew it wasn't good.

For the next 20 minutes, I went from speaking with the on-call OB to wiping again, each time with more blood and clots and back to the phone. I awoke my parents (they were visiting for the night) and said I thought I was having a miscarriage, that I had to get to the hospital ASAP. I was 26 weeks.

At the hospital, they found that I was having premature labor contractions, that my water had broken, and that I was 1 cm dilated. Since the NICU at the hospital was unable to handle the needs of a 26 week gestational age baby, they had to transfer me to another hospital with a Level III NICU. I was pumped full of magnesium sulfate to stop the contractions and sent by ambulance an hour and a half away.

The mag sulfate stopped the contractions, the bleeding stopped, and the new doctor, a perinatologist (since I was now High Risk -- huh, fancy that), looked at the ultrasound results and decided my marginal previa must be acting like a complete previa. Still, he was hopeful it was a one-time only bleed. And since I had lost minimal amniotic fluid, it must have been a small tear in the sac. So I was placed on hospital bedrest for a week. If no new bleeds during that time and no resumption of labor, I could go home and do modified bedrest at home for the remainder of the pregnancy. Thank goodness I was on summer break from school!

Well, that week trial only lasted until Thursday. A small bleed, but it reset the clock. They did tests again, nothing. Still, they thought the previa looked marginal but was acting like a complete. As one doctor said, it was quacking like a duck, so it must be a duck.

It wasn't a duck.

I had a major bleed that Sunday, so major that I scared a tried-and-true labor and delivery nurse by the amount of blood and size of the clot I passed. (I thought it was the baby when it was coming out of me.) I got transfusions and my bleeding stopped. Crisis averted.

Another bleed occured Tuesday. Again, I scared people. (I got so good at that, too.) I had a serious blood pressure dip where the nurse was calling my name and I was unable to respond, just floating there thinking "yeah, what?" But no new blood was needed.

And then Thursday arrived, 11 days after I had first entered the hospital. For the first time, I bled during the daylight hours, at about 7:30 pm. (Always before, it was dark outside, although the bleeds were in the early morning.) And this time, I started bleeding while watching TV laying down. I was doing nothing and just felt the trickling oozing out of me. I stepped to the bedside toilet and had a massive gush. And rang the nurse call bell. When the nurse came in (it was the same one I had terrified prior), I told her I'd been "peeing" for about 2 minutes and I was scared, that surely it wasn't urine. It wasn't. She helped me get horizontal again and the ooze continued. Doctors rushed in, evaluations were made, and I heard the fatal words "no food or drink".

OK, time for an emergency C-section. I was all alone in the hospital and only had 25 minutes notice to let folks know. My labor coach was back home, too far away to help in the time allotted. Besides, I wasn't about to labor: they were pulling my son to save both of our lives. I couldn't reach my folks. In a panic, I called both brothers, told them the news and that I couldn't reach my parents. They took care of matters and right before I was wheeled in for surgery, got the call from my mom saying, "I love you. It will be all right."

And it was. The surgery was performed without a hitch and at 10:29 pm I heard a mewling, like a tiny kitten. It was my 2 lb, 8 oz. son crying. I got a brief glimpse of him before he was rushed to the NICU. Once I was stitched up, I went to the recovery room and was laced with morphine. Good stuff, that. Took the pain away.

Hours later, my brother arrived from a madcap dash from CT to upstate, central NY. He sat with me in the recovery room while we waited for the first trip to see my son. Finally, finally, they were ready for me. Up we went to see him. There he was on the warming table, tiny and dark, with these massive heels upright on the table. While the neonatologist was telling me his status, I marveled at his heels. Just the previous evening, we had played "Catch That Foot" as he kicked me black and blue. And here were the offenders, in person. Well, the little guy was healthy and a fighter, in good shape. Time would tell.

They led me down to the postpartum unit and I slept off the morphine and anesthesia. When I awoke, it was to a visitor (my labor coach and good friend) and a neonatologist ... my son needed breathing help so he was going to be intubated. Was that all right? I said, "Whatever you have to do." I totally did not understand what was going on.

A couple hours later, my brother escorted me up to see my son. And I realized the impact of everything, that this little tiny baby was fighting for his life. But. To foreshadow another day's posting, I have to say that he fought well and God held him in his hands for 115 days. He's now a rather robust (albeit thin) little wonder who won't stop pulling my hair or ears.

Puppy Dog Tails

Update: In July, I experienced some bleeding and was ordered to go to Labor and Delivery at my local hospital. I was 26 weeks along. While there, they discovered the bleeding was pretty serious, my waters had ruptured, and I was in early labor. Fun! I was given magnesium sulfate by IV and transferred to a hospital which could handle the care of a 26 week old baby.

At the new hospital (an hour and a half from my home), they decided that the amniotic fluid was merely leaking, a small hole, and that it might heal on its own. This is, apparently, a common occurence. The mag stopped the contractions (they felt like Braxton Hicks contractions to me!) and the bleeding ceased. For then.

I was on hospital bedrest for a week and if there was no new bleeding, I could go home. Well, I held out 4 days. The docs were convinced it was my marginal previa acting like a complete - walking like a duck, quacking like a duck. Multiple ultrasounds later, it still looked marginal, but golly, this woman is bleeding!

Well, 3 hemorrhages later (and oodles and oodles of blood transfusions), they took my son from me at 28 weeks, 0 days (by ultrasound measurement). And discovered a rather nasty grade 3 abruption, albeit minus any of the pain you're supposed to have with the abruption.

And my son's journey began. I shall be updating the blog as time allows, but suffice it to be my son was in the NICU for 15 weeks. (3 weeks past his due date and wouldn't you like to see the final bill?) He has developmental delay, and no one is sure yet if the delay is simply prematurity or if there is something else like cerebral palsy involved. (We should know that in a year and a half conclusively.) And I have gone from a Choice Mom with a normal pregnancy to a Choice Mom with a preemie, an issue which kind of takes the cake and thought away from being an SMC. In other words, how he came about does not matter at all; instead, how can we address his issues and help him grow as much as possible? I think my lack of marital status matters naught. Yay! So, stay tuned. Will update when I get a chance (ha ha ha - like that is often).

No Infection

Good news! I don't have ANY infection. Apparently yellow foul-smelling discharge is going to be my normal. Yay! (Although, not having made a practice of previously smelling my discharge, how do I know what "foul" really smells like?)

Looking 6 months pregnant, but only 5. Interesting.

I got some books from Amazon and off of paperbackswap.com (a great deal, that one, just pay for postage to swap paperbacks). I am boning up on my baby information. Not having babysat a true infant in 30 years (yep, you read that right), I am woefully ignorant of infant's needs. Here are some things I learned:

• Babies don't need to be bathed every day. Every 2 or 3 days is fine and is recommended by doctors to keep their skin from drying out.
• Babies need manicures on a frequent basis because their fingernails grow so quickly. OTOH, their toenails grow much slower.
• Breastfed babies typically experience bowel movements after every feeding, so be prepared for constant diaper changes, above and beyond formula diaper changes.
• Use of cloth diapers really does decrease the incidence of diaper rash. (I thought it was cloth diaper propaganda, but the doctors said so.) Expect diaper rash between 3-6 months of age.
• Smiling occurs after 3 months of age.
• Separation anxiety is normal at 12 months. This worries me since my son will be 10 months when he starts F/T daycare again after a summer at home with me.

Anyways, just some of the fun stuff I learned. I am reading a book about the colic period too, and this doctor has a set method for handling it ... among the suggestions is using a vacuum cleaner in his presence. I'm still reading but it seems to be just 1 guy's opinion, not shared by the other books. We'll see ... 15 minutes of fame and all that.

So, until next time. Have a happy! :)

My Latest Appointment

Well, today was my anatomical ultrasound. All was going very well ... five fingers on one hand (the other scrunched by his face), five toes (never saw the other foot), cute as a button nose, legs and arms, good upper lip (no cleft palate), great spine, excellent heart and heartrate, empty bladder and stomach, just an overall good wiggly baby. Apparently, since I have a rear-facing placenta and am so darned skinny, I should be feeling him kicking. Nothing. And he is so wiggly. (He really detests the ultrasound wand pressing, too.) The placenta looks good except ... drumroll please ... it was low-lying, until she got a better look. Then, it was near the edge, until she got a different angle. Now, it is on the edge. She said it was partial placenta previa, but everything on the internet has said it is a marginal previa. Whichever, I could use some prayers that it resolves itself. My research found that 90% DO resolve themselves, so here is hoping. Of course, it is this time that I must remind myself that if there is a minimal chance of having something, I always win that lottery ... if only it was minimal chances of GREAT things occuring!

Next, I told her about some yellow discharge ... pee in the cup routine. I had an internal exam where 2 cultures were made and they are being sent off to the lab ... so we will see in a couple days. The doctor thinks it is Group B Strep since it wasn't any of the STDs they test for there in their lab. Simple round of antibiotics ... ho hum.

Oooh, dizzy spell just now. Still going on, too. Fascinating. OK, gone.

So, then the doc said I had blood in my urine ... what else can happen? I checked with my mother and yes, I remembered correctly. She has had blood in her urine for over 20 years and I've had it for about 7. So perhaps it is nothing. Mom has a miniscule amount and so too did I today. So here is hoping ....

We also discussed my constipation issues. Basically, I don't go for a week, which is when I clean out (per my OB's directions) with laxative and enema. But this is for the birds ... so she said to take magnesium with my prenatal and then also to take stook softeners every night. I am also being referred to a nutitionist to perhaps address my fiber intake issues. Basically, last time I met recommended daily fiber requirements, I lost 15 pounds. And one can't do that until AFTER Little One has arrived. So ... we'll see what this one says!

So, no good news ... well, unless you count the fact that that Little One looks wonderful, is 9 ounces already, and wiggly as all can be. Another appointment in 4 weeks, so ... have a happy one!

18 weeks along

Well, things are going really well with Little One. I am 18w2d today, showing quite obviously, and no issues, other than traditional constipation and daily headaches. The constipation is so bad I have resorted to abnormal methods to take care of the problem (as advised by my OB), just so that I have the room in my abdomen for eating. Here's the rub ... I have gained NOTHING since my appointment 2 weeks ago. So, not good. Gotta figure out a way to get the food in and the processed food out. :)

I have a lot of suppies for my son already. I bought a lot of things used off of Craigslist ... crib for $30, changing table for $20, bathtub for $5, Chicco travel system for $170, all sorts of goodies for major discounts. Now all I need to do is load up on medicinals and clth diapers and I will be on my way. I'm saving some things for showers ... oh yeah, and the breast pump. I doubt anyone would give me one, so I just have to figure out how to get on cheaply.

Other than all that, not much is new.

Have a great day!