Tummy Owies

We had an extremely busy weekend: 3 birthday parties, a playdate with the cousins, Super Hero class and a trip to Annapolis. In retrospect, I think Marino had an illness brewing throughout the weekend, but couldn't quite explain it to me. By Sunday night, he was having bloody diarrhea (2-4 times an hour), a fever and extreme abdominal cramping. He would fall to the ground and start screaming in pain, curling up into a ball and saying "my tummy really really hurts!" We stayed home from school on Monday, but it just seemed to get worse. His fever got up to 102, the diarrhea was happening more frequently, the pain was worse and he started refusing to drink.

After talking to his pediatrician, I took him to the ER around 6PM on Monday. The ER doctors acted like I was suffering from Munchausen syndrome by proxy and wanting to subject my child to unnecessary pain and suffering for no good reason (this is also how I was treated when he had bacterial meningitis, so I just let them think I'm crazy and keep pushing for the care I think he needs). They seriously handed me a Gatorade and told me that should sufficient, before even running any diagnostic tests to see if he was dehydrated. At this point, he was having watery, bloody diarrhea 3-4 times an hour and a fever of 102. Somehow, I was fairly certain a few sips of Gatorade was not enough to keep him hydrated under the circumstances. "He looks good to me" said the ER doctor, without bothering to take any blood to check his potassium or electrolyte levels. I insisted on tests and an IV. The doctors rolled their eyes and explained to me that it would be painful. I explained that, given the situation, I felt like his recovery without an IV was going to be much slower, and his body would be weaker for days. "Well, you're going to have to stay here longer" they said. "That's fine" I replied. After perhaps the 6th time he had diarrhea once the IV started, the doctors finally decided he was actually sick and offered to admit him.

Here he is after getting his IV. He was not happy.

Once we got to the Pediatrics Unit, our hospital visit greatly improved. We stayed until Wednesday afternoon and he had an IV the whole time. The doctors told me to just keep offering liquids and anything he lost using the potty he would get back through the IV so not to worry. By Tuesday overnight he was up to pee every hour (not so easy with an IV pole/machine). Clearly he was rehydrated, so they took out his IV Wednesday morning and he was tolerating liquids and food. Everyone in the Peds Unit was wonderful and we had a doctor this visit that we had when Marino had bacterial meningitis as an infant. He was really interested in hearing our perspective on that looking at it from the other side, with a healthy child. I thought it was really insightful that he even thought to ask about our thoughts on that experience. He was amazed Marino is perfectly healthy and has no long term effects of his illness (it really is an amazing blessing).

Here he is on Tuesday, starting to eat again.

They covered his IV with a diaper but he was fascinated by it and kept saying "I want to check this out for a minute" and unwrapping the diaper to look at it. He actually asked the nurses not to remove the IV because he wanted to show his friends at school.

I was very proud of him; he was very pleasant and nice to all the doctors and nurses. Tuesday morning, the nurse brought in some movies and a popsicle for him and he said "Mommy, this is going to be great!" Later they offered him a popsicle and he said "Yeah, can I just take it home and eat it?"

Wednesday we got home and kept him hydrated with whatever he was willing to eat/drink, like watermelon...

Thursday and Friday he was still having abdominal pain and some diarrhea, but 1-2 times a day, nothing like earlier in the week. We had a follow up appointment with our pediatrician and she said we'll probably never know what caused the illness (all the tests came back negative). The diagnosis was "acute infective gastroenteritis NOS" (in other words, "we have no clue"). Our plan for the long weekend is to rest and get our boy back to his old self again.

Prematurity Awareness Day: Our Story

Today is Prematurity Awareness Day. If you're reading this blog, then you are probably already aware of the issue of prematurity and what it means for both preemies and their families. The March of Dimes is asking bloggers to blog about how prematurity has affected our lives, so below are some of my rambling thoughts on how it has impacted Marino's health. I hope it makes sense...I am sick (caught Marino's stomach virus) and very emotional about this issue today.

I was lucky enough to have a healthy pregnancy until the day Marino was born. I loved being pregnant - I felt better pregnant than I normally do. I loved it! I wasn't lactose intolerant for the first time in a decade...oh, the milkshakes I drank! The cheese I ate! I was having the time of my life...blissfully ignorant of what was in store for us.

I knew nothing about prematurity before Marino came into the world...the thought of having a premature baby never occurred to me. I swore he was going to be born late. I didn't know of anyone who had given birth to a baby before 34 weeks (34 weeks is the point at which antibodies are passed from mother to baby, so 34 weekers generally have stronger immune systems than younger preemies). I imagine I thought, as many people do, that having the issues of prematurity end once the baby leaves the NICU.

Marino was born very suddenly. My HELLP Syndrome progressed quickly. I got to the hospital maybe 2 hours after my first symptom, Marino was born about an hour later by emergency c-section. I wish I could tell you about everything Marino went through his first few weeks of life, but the truth is, I didn't now know most of what was going on. While I can recite all the explicit details of Marino's medical history over the past 15 months, that first month I was in a morphine and illness induced haze. But I do know that he could not breathe on his own at birth and was placed on a ventilator. He had jaundice and a low white blood cell count (this was because of my condition). He could not maintain his body temperature. He could not consume formula orally. He could not defecate on his own without the help of suppositories (initially at least). He was small, even for his gestational age. His skin wrinkled on his body because he had almost no body fat. He was covered in lanugo (fine hair all of his body). In short, he was not ready to be born.

Marino: July 3, 2008

In the NICU...he looks like he's saying a prayer here.

There is a sense of loss that parents of premature babies go through that is difficult for other people to understand. Yes, we are blessed to have babies that are alive. But we grieve for the loss of the expected pregnancy/birth process. I missed our baby showers. I missed getting to the point in pregnancy where you feel hiccups, or can see hands and feet moving across your belly. I never got "that pregnant." I never got so far along in my pregnancy that I didn't want to be pregnant anymore. And most of all, I grieve for the loss of a healthy birth...one that involves being handed a crying baby to hold and kiss. I feel physical pain thinking about what it would be like to have held Marino in the first minutes after his birth, to have said "Welcome to the world, Marino." What would it have been like to have been handed a 7lb Marino at birth instead of seeing a 3lb Marino in an incubator 3 days after his birth?

Even after Marino came home, the effects of his prematurity had a dramatic impact on his health. 10 days after his release from the NICU he started grunting. No fever, no other symptoms, just a weird grunting with each breath. I mentioned it to my mom and she held him for a while...then said maybe we should call our pediatrician. We called and she listened over the phone. "Um, I think you should take him to the ER...just to be safe she said." (God bless her). We arrived at the ER...by this time, he was basically non-responsive. His penis was blue (low oxygen). He didn't want to eat. But still, no temperature, no coughing, no obvious signs of illness. "Is this your first baby?" the condensending ER doctor asked me, "they just do things like this." Any mom knows when something is WRONG! WRONG! WRONG! with their baby. And something was wrong with mine. Our pediatrician called the ER to follow up. They said they were discharging us. She asked me if I was ok with it and I said no way. She asked for a second opinion from a NICU doctor (again, God bless her). The NICU doctor took one look at him an admitted us. They did a spinal tap. He didn't move. He was essentially unconscious for the next few days.

Marino in the Pediatric Unit
August, 2008

It took a while to diagnosis the problem. They initally thought it was NEC (since he was "guarding" his belly when they tried to touch it). They started prepping for surgery, called in the surgeon, and then discovered his bowel was fine. They moved us from the Pediatric Unit to the Pediatric ICU. They found a bacteria. It ended up being Group B Strep, which is usually passed from mother to baby, but wasn't in our case, since a) I did not have him vaginally and b) I was on antibiotics before I even saw him for the first time and was at the time (and would be for another 5 months). They told us he got it "from the community." It developed into sepsis, which manifested in his belly. Within 48 hours, the lab came back that he had bacterial meningitis. We were terrified. We were told he needed 14 days of IV antibiotics and we moved into the Pediatric Unit.

Marino's weakened immunity to these illnesses is a direct result of his prematurity. They also told us at the time that he had a Level 1 IVH (bleed on the brain), another common issue caused by prematurity. That coupled with the meningitis could have been a serious issue. It is only by the grace of God that he had no lasting effects to his brain, sight, hearing, etc.

When we left the hospital the second time, we were told to keep him away from other people as much as possible. We didn't take him out of the house (except for walks outside) until he was 4.5 months old, and then only sparingly until RSV season ended in April. We didn't have friends and family over often. Sometimes it felt a bit like house arrest. Some people thought we were overreacting. Our primary focus was keeping Marino healthy. It felt, at times, like it was us against the world, a battle for Marino's health. And even with the events of the past few weeks, learning he has asthma (which he may have had were he born term, but it is likely this was caused, in part, by having respiratory distress at birth), it still feels like a battle. Just seeing the words "respiratory distress" on our discharge paperwork on October 31st really brought things full circle. We are still battling the issues of prematurity 16 months later. It affects Evan and I as parents more than you can imagine.

Even after all that, I can say that we have been so blessed when it comes to Marino's health. So many preemies have much more difficult battles, even after the NICU. The list of problems that can be caused be prematurity is too large to list. Every organ, every muscle, every part of a baby's growth and development can be adversely affected by being born too soon.

The silver lining of this cloud has been the wonderful friends we've made, in the hospital, online and in real life. I don't know what I would have done without their support sometimes. When Marino was in the hospital last month, I could say to my preemie friends "Marino's desat machine is making me want to rip all my hair out...its giving me flashbacks" and no one had to ask what I meant by that. They all get it. And my IRL friends: Audra (who is the kindest person I know and only had 1 month of preemie mom life experience on me but was like a mentor to me), Laura, Katie, Megan, Karen, Martha and Carol (who just sent Marino an adorable holiday outfit, thank you) - I have a special place in my heart for you guys, as I do for the other preemie moms in my life I haven't met in person yet: Kelly, Tricia, Shana and Ivory and all my other kind hearted friends. I'm not sure what I would have done without you all sometimes.

I took a class a couple years ago called "New Issues in Community" where we discussed what makes a community. One of the most important elements was a shared history...and my preemie moms and I definately have a unique shared history. Ours is a history of highs, lows and not taking anything for granted. Today, I'm thankful for my new friends and the miracle that is my premature baby, Marino.

For information how you can help, please visit the March of Dimes at: http://www.marchofdimes.com/howtohelp/howtohelp.asp

or call your local NICU to see what you can donate or provide to families struggling to care for their premature infant.

Back Home and Halloween Pics

As expected, we were released from the hospital today. We still have to do the breathing treatments every 4 hours (even over night) and he's taking oral steroids and antibiotics. We're also not supposed to go anywhere until we see our regular doctor on Monday...our discharge instructions were "just chill." We were very relieved to be going home! Here's a few pictures I took in the hospital.

As you can see, hospital cribs are sort of like baby jail.

This is what happens when your bored toddler gets a hold of a box of Cheerios...there are even some in his hair. He looks happy, though, that is key!

Watching "Sponge Bob" and drinking a bottle in his crib/prison.
As instructed, we're just "chilling" at home until we get the all clear from our doctor. Marino seems to be doing well. He definately still has an awful cough and runny nose. Its also clear he is still struggling to breathe...watching him eat or drink a bottle is sort of painful to watch. The nights are the most difficult for him, so we need to keep a good eye on him the next couple nights. Since we couldn't go trick or treating, I put him in his costume and took him outside with the festive looking leaves (note: it was 65 degrees outside and humid). He was pretty happy to be outside! The rest of the day we just played, watched the Halloween episodes of the Wonder Pets and Yo Gabba Gabba (don't judge on the tv watching, please, you try keeping a toddler in the house for at least 4 days...whatever it takes to keep him happy!). My sister-in-laws Richelle and Rianne came over to keep us company and help with trick or treaters (he liked seeing most of them, with the exception of one scary vampire).

Here's a video of Marino doing his lion impression...for some reason he whispers the "roar"...not so intimidating...

Processing

It's definately weird to be back in the hospital with Marino. I find it sort of ironic that we spent so many months of his short life quarantining him and then his first sniffle of his second flu season and he is back in the hospital ::sigh:: Even stranger is that I had a dream on Sunday night that he caught H1N1 and we were in the Pediatrics Unit here. Of course, then the dream shifted to me discovering a candy buffet in the Pediatrics Unit and being mad I didn't know about it last year, but it is still bizarre I dreamed of this very thing and within a week, something similar occurred.

While it definately sucks to be here, we're getting great care. I'm very thankful the ER doctors took our situation very seriously, even with a packed ER of flu patients. Within minutes we had a team of very nice, patient people helping us. It's also comforting that we know a great many of the doctors and nurses in the Pediatrics Unit from our last stay here. One of the respiratory therapists last night even remembered Marino from the NICU. So, while it sucks to be here, it's nice to have good care.

We should be discharged in the morning, as long as all goes well tonight and he isn't wheezing terribly in the morning. We're down to 4 hour intervals in between breathing treatments, and his desats are staying in the 90s. He's also playful and talkative. We had some scary moments last night where he would try to talk and nothing but a choking sound would come out.

You know what sucks about hospitals? They're not child proof. Presumably, they expect if a child is sick enough to be here, they are sick enough to stay in bed all day. This may work with a baby or small child, but try telling your toddler to stay in a crib all day, sick or not! So, we had lots of play time today, and he just took more naps than usual. But, there are way too many things in this room Marino can't touch or climb on! We had plenty of sad faces today.

I'm really happy with how well he's doing. Last night was pretty terrifying. I know he's much stronger now than he was last year at this time, but pneumonia is nothing to be taken lightly with preemie lungs. I definately feel comfortable taking him home now that his oxygen is staying up (breathing treatments I can handle, but I don't have oxygen at home).

I am counting my blessings, but still bummed Marino will miss Halloween this year:( I was really looking forward to taking him trick or treating at a few houses, since he loves to socialize. I'll still put him in his costume and take lots of pictures to share, of course.