Movin' on Up

We've been busy these past couple of weeks. First, very, very busy at work. Because we like to keep things spicy around here, Jared also took a position at a new company after being unexpectedly recruited. It was definitely the right decision for us, though. Funny how those things work. Some other news:

36 weeks! I hit 36 weeks this past Saturday, a point we never expected to see in this pregnancy! Praise God--it is a blessing to have made it to this point with no further pregnancy drama (well other than a host of new-to-me pregnancy symptoms such as sciatica, swelling, heartburn...). I'm pretty certain we will go right up until my scheduled c-section date after all the premature birth fears. As much as I am not enjoying the aforementioned by-products of pregnancy, I am not eager to have this pregnancy end. Probably in part because of how much stuff we have going on but mostly because I am aware this may be my last pregnancy and I know how much I will probably miss this just me and baby time. My absolute terror over the idea of this c-section (my first) probably also keeps me from getting to anxious about expelling this baby.


Kids: The kids are beyond excited to have a new brother to join them. Jack, even at 19 months when Charlie was born, was such a sweet, loving big brother. My guess is that Charlie will be a little scrappier than Jack insofar as his baby brother is concerned but Jack still has that same sweetness. He kisses my belly every morning and evening. I have no doubt he will be as gentle and loving as he was at 19 months. Probably even more so.

Charlie has been doing well on the TPN--he is gaining weight, which is an incredible thing to see. He has a lot more energy and, well, feisty-ness. We are adjusting to the TPN and hit our first hiccup today. Unfortunately, due to an error by our infusion company, we have to have his line replaced tomorrow. As much as the situation distresses me, we are lucky that nothing terrible happened (infection, etc.) as a result.

As brothers, these boys have been a hot mess lately. They are the closest of friends (with some squabbles mixed in) and have recently been getting into what seems to be a Sunday tradition of mischief. First it was a big mess in their bathroom, then it was a big mess in Charlie's hair (as a good friend reminded me, at least it didn't involve scissors). Here is a picture of some of their mischief (note the little boy hiding behind the toilet, knowing he is in trouble...):


New house! We still own our house in Eugene and so we rent up here. Our lease is up at the end of May and we knew there was a possibility of the owner finding a job in the area and moving back. He did (which is great for he and his wife!) and so we have to move in May--just a month after having the baby. This has been stressing me out, especially because we didn't think we could really start looking for a place until April. Well, Jared had his eye on this one listing and 3 weeks ago, called on it even though we assumed no one would want to hold a rental for us until mid-May. The house was awesome, is in the neighborhood we would want to buy in and could possibly become a house we own in the future. The stars aligned and the owner was willing to hold it for us. So...we are excited for this new house (and long lease--no more moving for a while!). Less excited about moving. But...it will work out.

May...well, May is going to be a very, very busy month. The baby is coming on or before April 9. We then have less than a month until I have to travel with Charlie and a newborn back to Cincinnati (while recovering from my first c-section) for a fun-filled week of invasive procedures. I am so hoping we get some answers and/or direction for Charlie out of this trip. We get back and 4 days later move to the new house. Woo-wee, it will be a crazy month. I'm just trying not to think too much about it.

That's about it going on around here (not that I really need anything more). As crazy and full as our lives are right now, it is not lost on me that we have had A LOT of prayers answered over the past couple of months. I read this quote recently and it really spoke to me:

"Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself "How did I get through all of that?"

TPN

Two weeks ago, we checked Charlie into the hospital to embark on our newest feeding adventure: TPN (total parenteral nutrition). This was the most difficult decision we have come to for him and one that is still causing me great anxiety. I did not anticipate the level of anxiety I would continue to have even after we learned the ins and outs and came home.

TPN is IV nutrition. Charlie is still receiving feeds through his jejunostomy tube but he is getting fed through an IV at night for supplementation. He wasn't getting enough calories through his j-tube and he when he was sick, it set him so far back that we were never able to make any progress and his nutritional status was suffering because of it (not to mention skin breakdown and pure misery for weeks surrounding any illness). TPN involves a central line. This can be placed in the chest or the arm but both go to the heart, versus a regular IV which is just in a vein. Charlie got a PICC line (in his arm) until we figure out whether this is going to be a long term solution or just a bridge. The primary risks with TPN are liver damage and, more importantly, sepsis and infection. Hence, my intense anxiety and paranoia surrounding this decision. Because the line is a direct connection to his heart, it must stay completely clean and dry. He has a dressing covering the site at all times, which is changed by a nurse once a week. We have to take a lot of precautions (forget living the "natural" life, we are now a household of alcohol swabs, Clorox wipes, and hand sanitizer) to ensure that we prepare his TPN bag in a sterile environment and fashion and minimize contamination when we hook up the IV at night. I've never been so paranoid about sterilization and hand sanitizing as I am now (I was never a mother who cleaned pacifiers after every fall on the floor). He gets labs taken every week and they monitor the formulation of the TPN carefully. This has certainly turned us upside down. One of us has to be here every night to prepare the TPN and hook him up, he can't be left with anyone other than us or a nurse (when TPN is running), fevers take on a whole new dimension, and we have to do all of this at a pretty specific time of night. So...basically, we are going to have to get creative with date nights at home. We are adjusting to our new normal and trying to take his cues instead of falling prey to our own insecurities and fears (one thing I've learned from parenting complex children is that we parents project a lot of our own issues on our kids...kids are a lot more resilient than adults)--Charlie seems completely unbothered by this turn of events.

The good news? In 2 weeks, he has gained nearly 3 pounds! This is a major accomplishment for a guy who hadn't gained anything in 8 months.

Before I was a Parent...

Here is a short list of things I was never going let my kids do. No comment on how many (or all) of these happen in our house now that we actually have kids:

1. Watch TV, except maybe Sesame Street

2. Eat snacks before dinner

3. Co-sleep

4. Eat sugar cereal

5. Stay up past 8 pm

6. Have a DVD player in the car

7. Eat snacks in the car

8. Drink juice

9. Wear character-themed clothing

I used to be a super great parent. Then I had kids.

Feeding Tube Awareness Week and Other Stuff

This past week was Feeding Tube Awareness Week. Being a mother to two children with feedings tubes (and one of those children with two different feeding tubes at that!), feeding tube awareness is important to me. While a blessing that has allowed my children to thrive when their bodies couldn't otherwise, tube feeding has its hard days. It is hard to have holes, sometimes multiple holes, in your babies' bodies. It is hard to watch them be uncomfortable and suffer through infections and other complications that come with these tubes. It's hard to have your child want so badly to eat but not be able to. It's hard to not know what is around the corner or how long the tube will continue to work for your child. And, it is hard to have people stare. I've been abundantly lucky in this regard...mostly, people have been so good about asking us questions instead of staring (for the record, I never mind someone asking us about it...I am happy to educate. I do mind, however, when someone asks what is "wrong" with my kids). We've only had a few "ew grosses" from other kids. But there are those times when people say stupid (probably misguided and unintentional) things that sting. Like the time a woman said, well within earshot, what kind of mother makes her just-learning-to-walk baby wear a backpack. Those things are easy to let go when you have so many wonderful people, both real life friends and family and those I've become close with through internet groups and the like, support you so unfailingly. And show that support publicly through blog and Facebook posts. One of the biggest blessings that my childrens' disabilities is this entire world of friends that have opened up to me as a result of having kids with special needs. I've met some very dear friends in hospital playrooms and conferences and internet support groups. This week, I was especially humbled by the blog posts my sister and an internet friend wrote in support of Tube Feeding Awareness Week.

Anyway, in other news, things with the baby have been going well. Fetal monitoring has continued to show the baby is doing well. I hit 31 weeks today! Every Saturday that passes and he is still in is a success. However, today, we received some not-so-great news. It seems these days, it is just one thing after another. We own (and rent out) our house in Eugene and rent a home up here. The market is just too tough to sell our old house in and so we are just holding tight for now. Our lease here is up on June 1. We knew our landlord was looking for a job back in this area (they live several hours away) and that, upon lease expiration, would rent to us on a month-to-month basis. Well, he called today and told us that he found a job here and would be moving back into this house at our lease expiration. So...that means, this baby will be born sometime between now and the second week in April. I will, in all probability, be having a c-section due to the baby's position (which is highly unlikely to change). Then, since we had to put off our trip to Cincinnati for Charlie until May, we HAVE to go in May (putting off until then already was pushing it for Charlie). So...that means, c-section, baby born, trip to Cincinnnati for a week of invasive surgical procedures with a toddler and newborn in tow and then moving on top of all that. We can't begin to look for a house until about April...so, it is going to be a VERY busy spring. I'm trying to not get overwhelmed and focus on the fact that I have 4 months to pack and organize in anticipation of this move. But...sheesh! Can we add anything more to our plates?

Pregnancy

They say every pregnancy is different and you can't compare one to the next. Here are the differences in mine...

Jack: With Jack, I had a dramatic start to the pregnancy and a dramatic end. The middle was pretty uneventful. At 6 weeks, at my first ultrasound, I found out I had a septate uterus and all the risks that came with that. A day later, I thought I was having a miscarriage following a hemorrhage. The bleeding went on until about 14 weeks. Jack hung in there. Then, everything was uneventful. I had terrible hip pain that made it hard to walk but nothing serious. Then, on Valentine's day, 7 1/2 weeks before my due date, my water broke. I spent a week in the hospital and Jack was born. A teeny little thing. 4 weeks after that, we brought him home. I had an easy time getting him out, a less easy time recovering.

Charlie: No drama. Some bleeding in first trimester. In second trimester, I starting having ocular migraines and would lose my vision occasionally. A nuisance but nothing that actually did any damage. At one day shy of 40 weeks, I was induced, sailed through delivery and brought home my baby two days later. Easy peasy.

Baby William: Completely, totally sick and exhausted for the first 14 weeks of pregnancy. I have had food aversions with all three but nothing like this. I was so sick. Otherwise, totally uneventful first and second trimester. Then, one day into the third trimester, this baby decides he should shake things up. 9 days in the hospital, narrowly averting a very premature birth, and now we are home like nothing happened. Frequent fetal monitoring that shows good trends. Obviously, the rest of the story is yet to be seen...but I am enjoying this uneventful period for now.

Answered Prayers

After 9 days in the hospital, with about 4 of them being somewhat harrowing, I got released yesterday!!! I get to be back home but with daily monitoring at the hospital to make sure this baby continues to do okay. We have, for the time being, averted disaster. I feel like this is truly a miracle...a week and a half ago, we were prepared to deliver a very premature baby and now I am inching closer to 30 weeks.

I am enormously grateful to all of my family and friends...who called, prayed, visited, and helped keep things moving at home. I came home yesterday to a clean house with laundry done and folded, the refrigerator clean and stocked with enough to keep us fed for a couple days, and well-cared for children. My in-laws made that possible and I am so grateful to them for that. My parents both came up and stayed with me in the hospital (I now know that my father can be awoken out of any sleep by a change in a baby's heartrate on a monitor), foresaking their own comfort to sleep in pull-out hospital chairs and ensuring I got a daily (decaf!) Starbucks coffee. Jared was, as always, a rock, trekking between home and work and the hospital and bringing me any number of things and remembering to bring things I needed but wouldn't have thought of on my own.

It was a wonderful feeling to arrive at the kids' preschool yesterday and surprise them at pickup. They weren't expecting me. Last night, Charlie sat with me in the rocker for the longest time, giving me an enormous hug. This is where my heart is, for sure.

I will say, every time we meet one of these crises, God honestly doesn't let us down. Despite my best efforts, I do have moments of wondering what in the world He is trying to show me...and then somehow, we make it through and I realize...it's not always up to me to control. Cincinnati will wait until May for Charlie and I have faith that we will make it through the rest of this winter and early spring in one piece.

Balancing Act

There are days when things are running by so smoothly and then bam, it seems it comes from all sides. After a smooth Christmas season, 2012 hit us like a ton of bricks and hasn't really stopped.

So, one of the challenges with Charlie is that whenever he has a virus or illness, his GI system just shuts down. We can't feed him through his j-tube because it just leaks right back out, including bile, which in turn irritates and blisters his skin. He is already really small and we don't have weight that we can lose. So, during sick season, we are often in a get sick, lose weight, get better, catch up phase. We don't make much progress. It can be very frustrating as when he is well, things seem to be okay...and they can turn on a dime and it disrupts everything. The balancing act is trying to keep him hydrated during the time he isn't eating, avoid a hospital stay and get his GI tract moving again. It is a frustrating process with a lot of ups and downs, steps forward, steps back. He got a mild virus on New Years and we struggled with him for the next 2-3 weeks. During that time, we were advised that it might be time to go to a hospital where they have more specialty in this area and that Charlie overall seems to be getting worse, not better, with his GI motility. Unfortunately, that place is more than halfway across the country. We are working on getting him in there and hoping that they have some treatment options that can help improve things for him, especially when he is sick.

This pregnancy has been going so well. No problems whatsoever. In fact, most often, it is the furthest thing from my mind as my hands are full with my two very active little boys! Well, on Sunday, all of that changed. Jared had just returned from San Diego and I was packing to leave to San Diego in the morning. This is a very busy time at work for me. I hadn't felt the baby move since early that morning. I tried to get kick counts that evening and I couldn't get him to move at all. We watched a show, I tried a few different positions and still nothing. I have a home Doppler, so I then got it out for reassurance that he was just sleepy. Usually, that thing has to only come near my belly and I can hear him loud and clear. Not this time. I tried and tried and could not find a heartbeat. Finally, in a panic, I called my dad and he advised me to head to Labor and Delivery to check things out. I've never been so scared as I was driving over there. Unfortunately, Jared had to stay with Charlie and couldn't come with me. I was praying and willing the baby to move the entire drive to the hospital. When I got there, they also had trouble finding him on the monitors. Fortunately, we were able to get a nice, reassuring shot of a beating heart on the ultrasound. I was so relieved. They decided to put him on monitoring for 20 minutes because I had reported the decreased fetal movement. During that monitoring, it showed our little guy is having a little bit of a hard time tolerating his environment. So, I got admitted and preparations began for the possible need to deliver our baby at 28 weeks. Now, we have had a preterm infant before and we have no desire to repeat that experience. That was at 34 weeks, which is a very different landscape than 28 weeks. We also have two children at home now, which we didn't when Jack was born.

We are lucky to be in a hospital with great care and great doctors who are trying to get us to the best outcome possible. We started steroids for the baby's lungs early on Monday morning and magnesium sulphate to help protect the baby's brain against damage if he were to be born early. My parents flew up to be with me and Jared's parents drove up to help care for Jack and Charlie. We are currently in a waiting pattern, monitoring the baby and seeing what he does. I'm stuck here in the hospital for the foreseeable future and Jared and I are trying to figure out this huge, seemingly insurmountable balancing act...two jobs, kids, therapy appointments, doctor appointments, and anything else that can happen in between, such as, say, Charlie getting a virus. Not to mention that, clearly, we aren't headed anywhere across the country for Charlie. To say that I am completely overwhelmed by this new balancing act would be putting it mildly. I feel terrible that we are having to make choices like postponing when we get Charlie care, how to get Jack to and from therapy appointments, whether it will even be feasible for Jared to attend the birth of this baby, etc. Not to mention that I could be here for weeks and weeks and not see my kids much.

So, that is where we are at. I never saw this coming. I have faith and hope we will figure this out. We are blessed with wonderful family, friends and employers. But I am completely overwhelmed by the logistics.