A tale of two teeth and no sleep.

Finally! A quick moment to update everyone on Brynn and all of her amazing progress. We had a check-up with the pediatrician back in March, and a scheduled appointment at the cardiologist for an echo, EKG, and clinic visit.

Both of the appointments went very well. The pediatrician was very pleased with Brynn's ability to sit up all on her own. She was impressed with her growth curve, and was relieved to see her head size on the chart. Brynn's gross motor skills are coming along fine (rolling over like a champ, with lots of rocking back and forth like she is getting ready to crawl!). The doctor decided we didn't need a referral to a developmental specialist for any additional support in assisting Brynn achieve her milestones.

Our appointment with the cardiologist on April 13th went equally well, although the stress that it causes both Tony and I to return to the hospital with Brynn was very evident this visit. We were both clutching our chests, taking deep breaths, and trying to distract each other. Tony refuses to eat before Brynn is seen. He also doesn't stop talking. :) My way of coping is to focus entirely on Brynn and not engage in much conversation. His is to pull out his tablet and research dinner options for that night, read all the posted reviews, and then google map the directions (with back-up restaurants and routes of course) checking in with me frequently about my thoughts on Thai food vs. Italian. Somehow, we make it through together and are able to support one another during those looong mornings.

They start with height, weight, blood pressure, and O2 saturations. She was 16 lbs and 27 inches long. Her O2 saturations were between 85-90 (very good). They are never able to get her blood pressure with the cuff. The echo takes about an hour and Brynn was a little angle the whole time. She had a male technician which I think really helped (she is such a flirt) and even enjoyed trying to help move the wand over her chest and eat the sonogram gel. I was taken aback by the fact the technician knew us, and had apparently been present in the delivery room. At one point he looked down at Brynn and said "Remember the morning she was born? We were all so scared that she wouldn't make it. And here she is, doing so well and looking so beautiful." This pretty much confirmed my worst fears: that in fact all of pediatric cardiology and probably half the medical school has seen my vagina. I mean, just how many people were in that freaking delivery room??

Of course it was also a poignant moment and a reflection on the amazing journey we have been on with our little one. Our cardiologist reviewed the echo and said that everything looked great. All the medications and dosing will stay the same since she seems to be doing well on what she is taking and her growth isn't rapid enough for the medicines to lose their effectiveness.  We go back in August, sometime after Brynn's first birthday. Holy cow. Brynn is going to be ONE YEAR OLD!

It is amazing to watch her growth and development. She says "da da" constantly and indiscriminately and "mmmmama"when she is distressed. She has TWO teeth! And her hair is long enough for two adorable pig tails. She loves her jumper, loves to practice walking while you hold her two hands, loves music, bath time, story time, and loves to throw things over the side of her high chair and stroller (as long as you pick them right back up for her). Brynn loves being outside, loves to look at animals, and loves to make "migraine pie" as Tony calls it with mixing spoons and a large bowl. She is curious, silly, active, and interested in anything that lights up or makes noise (hide your laptops and remotes). She fits into her 9 month clothing and even some clothes that are sized a little larger. We can't wait to take her swimming this summer!

She is of course still sleeping in our bed. This continues to be a struggle. I love snuggling with her all night long. Tony hates being kicked in the ribs, pinched on the arms, and slapped in the face. Sometimes, she sleeps sideways between us with her head next to Tony's face and her feet in my stomach. Sometimes her wet diapers leak on our expensive sheets. Sometimes she thrashes around so violently you might think an earthquake was happening. But every night when I am putting her to bed and I crawl in next to her, I just soak up her peaceful breathing, milky baby smell, soft skin, and chubby little hands that stroke my arm as she is falling asleep. What can I say? I'm in love! And love makes you do foolish things. Sometimes laying down with her at night is the best part of my day. It's hard to give that all up, even when I'm being kicked in the face an hour later.

Currently, Brynn is having a rough time with her teeth. She is chewing on everything and often seems to be in pain. She constantly whines. She is clingy, frustrated, and furious at us if we walk out of the room (or even if we sit in the room but are not actively engaging her). This is a very recent change to our once independent baby who could happily entertain herself for up to an hour in her jumper, swing, or under her mobile. Apparently, she actually had a full on tantrum yesterday with the nanny and had a complete meltdown with me the other night because I brushed my teeth before getting into bed with her. She wanted Mommy NOW.

Her eating has also changed drastically in the last week so. She was once happy to eat jar after jar of freshly prepared squash, apples, pears, carrots, sweet potatoes, and zucchini. She was at one point drinking up to 20 ounces of formula overnight (not fun for me but good for her) and taking another 20 or so during the day. Suddenly, she wants nothing to do with the pureed food and has very little interest in her bottle (her intake is back in the high teens). She wants bread. And bread only.

We are trying to make the transition to soft table foods and continue to make sure she gets enough calories and nutrition through the formula. We are trying to ease her tooth pain with frozen chew toys, pain relief, and distraction. We are trying not to worry that her change in appetite and disposition could mean something more.

I guess thats what it means to be the parent of a heart baby. You are reminded during cardiology appointments when you see all those sick children (the ones with feeding tubes and facial deformities, the ones so puffy from steroids they look like they are about to burst, and the ones so tiny and frail you can't imagine how they are walking around) that things could get so much worse. There could be a day (like there was in the past) when your baby is in here really sick. You worry that any changes mean something bad instead of normal growth and development. I'm not really sure how to cope with that. Except that we have to and we have to keep focusing on everything going well.

We are reminded constantly of the blessings we have and look forward to a beautiful summer where we will hopefully get to see Brynn walk for the first time, swim for the first time, and eat her first piece of birthday cake. And possibly, maybe, quite probably (if Tony has anything to do with it) we might get to see Brynn sleep in her own bed.

Balance shmalance

Well, it's been five weeks since my last post. Five weeks since I've had a moment to myself, a moment of coherent thought, and a moment where I haven't felt guilty for doing something when I SHOULD be doing something else. Well, thats kind of not true. Right now I'm technically on the clock at work but my kiddo is getting help with his math homework and for once I'm caught up on notes so I figured I could take a few minutes to update the blog (thank you for understanding Starlight supervisors who read my blog :)).

Being back at work has been both a blessing and an everyday lesson in guilt, exhaustion, and time management. My first day back I was so excited to get up and have someplace to go! It was exhilarating just to get in the shower without worrying if Brynn would be crying when I got out. I shaved my legs! I got to listen to NPR all the way to the office! I drove in the car with no crying baby in the backseat! It was pretty thrilling. And best of all Brynn was asleep when I left so it made saying goodbye uncomplicated (It's hard to make a big emotional scene when you have to be quiet and not wake the baby). I'm pretty sure my return to work was overshadowed by the 49's huge win the day before ("Great to have you back Erin. Did you see that football game??"). But overall I felt pretty confident that we had made the right decision about me going back full time.

Pretty quickly however I began to feel the stress that I've read about in every women's magazine and is the centerpiece to every daytime talk show since the third wave feminist movement: having it all! How do modern women balance family, home and work? The answer? We don't! We are always feeling overwhelmed, overworked, under-appreciated, and somewhat hopeless about our situations. Okay, I'm being a little overdramatic. There are definitely days I feel like superwoman but there are definitely days I feel like I've let my family and my clients down (who needs clean clothes AND dinner on the table EVERY night, anyway?). Not to mention in my particular line of work if I'm not on top of my stuff my kids face real consequences (just ask the homeless teen mom and her baby who had no place to go last week). I don't just want to show up and do my work or go home and go through the motions. I want to do everything WELL. I want everyone healthy, and happy, and at least in clean clothes (and with a roof over the heads in the case of my client).

I don't want to miss a minute when I'm home with Brynn. I want to be in the moment while I read her that story, give her a bath, change her diaper (well, maybe not too in the moment with that one). But I also miss having time to myself and downtime when I get home from work ("Brynn, can you keep it down over there? Mommy is trying to watch Dance Moms and The Real Housewives of OC!"). Depending on whose turn it is to work late, Tony and I get home, get dinner on the table, feed Brynn, read her stories, give her a bath, give her meds, try to get her to down for bed, do the dishes, sneak in a load of laundry, and possibly prepare a weeks worth of organic baby food. Oh yeah, and try to nurture our still new marriage. It's sort of a challenge. And also a huge gift. Normalcy is something I thought we might never have six months ago.

As challenging as it is, I love almost everything about my life. I love being Tony's wife. I love being Brynn's mom. Most of the time I love being a social worker. Of course I wish there was more time for sleep, friends, family, reading, bubble baths, wine tasting, (I could keep going) but I think most working mom's feel that way (I know, I know: Every mother is a working mother!).

Right now Brynn's health is very good. Her last cardiology check-up and echo showed that her heart function looks good. We successfully transitioned off Monogen and back to regular formula. Brynn has even started solid foods! We introduce a new one every week and so far are up to rice cereal, sweet potatoes, applesauce and tonight we are trying peas! So far she has liked everything and is eating well (up to two ounces in a sitting) and gaining weight. She was up to 13 lbs 2 oz on 2/3 and has to be at least a full pound heavier by now.

I made the decision to make all of Brynn's food myself. My wonderful brother-in-law helped make this possible by giving us the Baby Bullet for Christmas! I know it is a lot of work and that the stuff in the jars is probably just as good but this is a commitment I really want to make to Brynn. I feel really guilty that I wasn't able to pump for longer than six weeks and that Brynn has had to have subpar nutrition for weeks at a time (thank you Monogen). I now have the ability and means to provide her with nutritious and healthful meals that will hopefully help her gain weight and get stronger. Despite the fact that sometimes the universe works against you (like when the power goes out the same night you have refrigerated a weeks worth of homemade baby food) this has worked pretty well.

Brynn continues to work on sitting up by herself, increasing her tummy time (we are up to five minutes at a time before complete meltdown), teething, and eye hand coordination. She responds to her name, can pass objects from one hand to another, grasp small objects, cry if you take a toy away, babble, laugh, coo, drool, and flirt shamelessly with my husband. Some of her milestones will obviously be a little delayed (rolling over, crawling) but right now she is pretty on track. She continues to take Iron, Lasix, Asprin, Enalipril (blood pressure medication) and Zantac twice a day. It is adorable to watch her take her meds. She loves to chew on the syringe and slurps up the medicine. She is also skilled and spitting it back out raspberry style if she doesn't feel like swallowing.

Now if only we could get her back to sleeping for longer than 90 minutes at a time. I haven't been this exhausted since we brought her home from the hospital. Only now I get to get up for work in the morning after being up with her all night! Her volume and intake of formula has gone way up at night. A few weeks ago she woke up maybe once or twice and took a maximum of 2 ounces at each feeding. Now she is waking up almost every hour and demanding close to 4 ounces at some feedings. Tony and I are facing the first of many co-parenting challenges when it comes to making choices about your kids sleep, potty training, homework, where to send them to college, etc. He want's me to start putting Brynn in the crib. Yes, you read that right. Brynn has never spent a night in her crib. Up until I went back to work five weeks ago she slept most of the night in her bassinet next to our bed. Now she sleeps in our bed. Every night. All night.

Well, technically she tosses, turns, cries, slaps, kicks, and scratches all night. None of us is getting very much sleep. I know, I know. I never thought I would be a "co-sleeper" but I miss her so much during the day! And when she isn't kicking me in the stomach or scratching me with her razor sharp nails she is pretty snugly. :) I do want my bed back. And I would like more than an hour of sleep at a time. But I'm not willing to let her cry it out. And her crib all the way in the OTHER ROOM might as well be an ocean it feels so far away. Right now I am hopeful that we will find a solution that will make us all happy.

I may not achieve balance in my life but I am confident we can achieve a balance that makes us all happy when it comes to sleep. At least until she learns how to get out of her own bed. :)

The next chapter

Well, we made it through the holiday season (just barely). :) It was a pretty rough week or so while Brynn was back in the hospital. She continued to drain fluid from her chest for several days. We were pretty sure we were going to end up there over Christmas since they really didn't want to pull the chest tube until they were 100% certain she had stopped accumulating fluid but fate decided to clog the tube, forcing them to pull it and avoid infection. Luckily, an infection did not occur and the premature chest tube removal allowed us to go home earlier than we were expecting!

Unfortunately, things are never exactly without complications in the hospital. We are now pretty sure that Brynn had some nasty stomach bug that didn't seem to be bothering her too badly, but proceeded to infect everyone who came in contact with her. It started with Tony a few days after Brynn had been hospitalized. I rushed over to relieve him when he called and found him barely able to stand he was so sick. Forty-eight hours later I came down with it. Tony wasn't completely better yet so our families stepped in to help care for Brynn. At that point she was still in 3 West and could not really be left alone since the nursing care in that unit is not the best (the ratio is 3 or 4 patients to 1 nurse). My mom took a day off of work (and would have done more if she hadn't slipped and gotten a concussion a day later). My cousin Hillary came all the way down to Santa Rosa to help. Tony's mom did more of her fair share of early morning shifts and overnights. Tony's dad took time off work to stay with Brynn. Tony's brother and his girlfriend even gave up their Friday night to do an overnight with Brynn. I don't know what we would have done without them. There was nothing worse than feeling so helpless and not being able to do anything to help care for my daughter. We would have been truly lost without the support of our families and are forever grateful for their continued generosity.

And how were all these amazing people and their acts of kindness and selflessness repaid? By getting the stomach flu on Christmas of course! Like a horrible game of dominos every person who came in contact with Brynn during those three days came down with the bug one by one. Tony finally felt better by Christmas Eve and was able to get Brynn when she was discharged that afternoon. But we spent our first Christmas at home watching old movies and eating Chinese food while our families recovered from the gift that just kept on giving!

Despite all the ups and downs, we felt very lucky to have Brynn home with us and to be together. We know what a gift it was to not be spending Christmas in the hospital, and to finally have a healthy happy baby at home.

It is amazing to see how fast Brynn is growing now that we are home and her surgeries are behind her. She likes to spend most of her awake time sitting up (with help of course) and playing with any toy that lights up or makes noise. She loves books and even likes to practice turning the pages. She is babbling non-stop, blowing bubbles, drooling like crazy, and letting you know at the top of her lungs if she is bored, hungry, tired, or needs a diaper change. Her favorite food is her fist (pacifier, what pacifier?) and her favorite past time is whining (adorable and incredibly annoying all at the same time). No solid foods yet since she is still on the Monogen, but we are hoping for the okay for rice cereal after February 6th when she can go back to regular formula.

Our only setback since we've been home was a yucky cold that Brynn got and of course shared with us. We were both really scared that it would put us right back in the hospital since we have heard so much about heart kids getting pneumonia or developing respiratory problems even from a simple cold virus. And let me tell you, it was a nasty cold virus! Brynn recovered remarkably quickly from the bug but 10 days later I was still taking cold medicine and blowing my nose every five minutes.

With the holidays and the sickies out of the way, the big task before me was to find Brynn a nanny. I go back to work on Monday. It has been five months since I stepped foot in the office. When I left I was eight months pregnant, it was 90 degrees out, and I had never changed a newborn's diaper. Crazy to think about! I was feeling pretty anxious about trying to find someone I could trust, someone who would take good care of Brynn inside our home, and someone who would be willing to do it for a pretty nominal fee. Thankfully, I think we have found that person.

She has been over a couple of times to get to know Brynn and learn her routine (okay, I don't really have a strict routine down but there are general guidelines) and to see if the job was something she really wanted. There are days I find it incredibly isolating, lonely, and sometimes even boring to be at home all day with an infant and she's MY kid so I really wanted to find someone who could cope with the long hours of minimal adult interaction and a fussy baby who wants ALL of your attention RIGHT NOW! I really hope we have found a good fit and that our nanny will be with us for a long time.

It's hard for me even now at home with the nanny here (I can hear Brynn fussing in the other room) and I really want to jump up and make it all better but I know that they need time to figure each other out. I think it might actually be easier when I go back on Monday and don't have to hear her crying or upset. I know getting back to work will be a transition but I am hoping that it is going to be a positive experience. At least I know the extra income will be!

Our hope for this next year is to spend lots of time focusing on Brynn and keeping her healthy. I'm hoping to finally get my LCSW exam completed and passed. I'm hoping we have lots of time to just be together as a family and not have to worry quite so much about hospitals, doctors, and surgeries.

Thank you to everyone for your messages of support and hope during the three weeks Brynn was in the hospital last month. It really meant a lot to us to have so many people praying for Brynn and for us during that difficult time. Here's to a new year and a happy and healthy baby!