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.

Christmas 2011

This was definitely the most fun Christmas we've had since becoming parents. This was the first year Jack and Charlie (but Jack especially) really understood and appreciated Christmas. Some highlights from this season:

We kicked off the season on the Sunday after Thanksgiving with a visit to the Festival of Lights at The Grotto , these beautiful gardens that they decorate in lights to tell the story of Christmas, complete with a spectacular nativity scene. Both kids really loved it and we learned here that Jack really adores carolers.

We decided to do one Christmasy activity a week this year. After the Grotto, we also visited Zoo Lights (more carolers!), a Christmas light festival at a raceway (a drive through thing), we did one evening of Christmas shopping at the mall, the Polar Express (more on that below), and a repeat visit to the Grotto.

We took a trip on the Polar Express this year. We have never successfully gotten Jack to sit on Santa's lap without a lot of fuss and crying. Well, the Polar Express was the perfect antidote to that. It was an old-fashioned passenger train, they served hot chocolate and, upon arrival at the North Pole, Santa boarded the train. He then sat with each family for a visit. It was a very personal, non-threatening atmosphere. Both Jack and Charlie sat on his lap. Jack asked for a train, a boat, and skis. Silly boy. I don't know where he gets this stuff!

Christmas music stole the show this year. We put on carols in the car every time we went anywhere. Jack and Charlie both have their favorite songs, which they would ask for at various times. Jingle Bells, Away in a Manger ("Jesus Born" as my boys call it), We Wish You a Merry Christmas, Deck the Halls, and Oh Christmas Tree top the list of favorites. I wish I could seal Charlie's little voice singing "Jingle Bells, jingle bells, hey!" in my head forever. When we visited the nativity scene at the Grotto, Jack approached it singing "Away in a Manger." I'm glad they both seem to understand what the meaning of the season is (Charlie regularly yells out "Jesus Birthday!").

When we got married, Jared and I invested in a Lionel electric train with plans to buy a new car or part to the train each year. We got the Polar Express version. Our goal was that by the time our children are grown, we will be able to give them the start to their own Christmas trains. We definitely reaped the benefits of this investment this year. The kids were captivated by the train. Jack became a very adept "conductor" and can operate the train quite well. It is a special thing and reminds me of my grandfather.

Buddy the Elf was a fun addition to this year. The kids had a lot of fun finding him every morning. On Christmas Eve, he wrapped up his stay with us by making snow angels in sugar. Then, that night, Jack gave him a hug and a kiss and tucked him under the tree so Santa could take him back to the North Pole.

When my parents came to visit, my mother made Christmas cookies. The boys had such fun decorating them with her.


Having my parents and aunt visit for Christmas was so special. I think this may have been the first year in many, many years that my family did not congregate at my parents' house (we've missed a few Christmases down there living 1,000 miles away but everyone else is usually there). With all of us flung far and wide now, we got the benefit of having them visit here. We had a wonderful visit.

Tube Feeds Tricks, Tips and Techniques

When we first got a g-tube, I scoured the internet for tube feeding resources. After 1.5 years of tube feeding and surviving granulation tissue, infections, feeding the bed, making countless bags of formula, and other tube-feeding mishaps, I feel like something of an expert in this field (except blenderized diets--this is a tube feeding area I know next to nothing about). I thought, for the benefit of other Googlers out there, I would publish some of the things we have found to work.

Caveat: every tube feeding family does it a little different and has different circumstances. My son is on continuous feeds, which is more the exception than the norm. So, some of these things won't make sense for bolus feeding.

**Calmoseptine Ointment: available over the counter in pharmacies (but usually kept behind the counter), Calmoseptine has been the most effective preventive solution to granulation tissue. We put a thick layer on the stoma and then cover it with gauze or button buddies (see below).
**Dressings: Some people don't use dressing for their stomas. Our boys have too much discharge and we find they stay healthier when we keep them covered. We use a combination of split gauze (aka IV sponges) and Button Buddies or a derivative thereof. There are lots of tube feeding mamas who make little g-tube pads to be used in place of gauze. They can be washed and re-used and are often made in cute patterns. Search Etsy as there are many different options.
**Extension Tubing: This is the tubing that attaches to the button (g-tube) and then is further attached to the feeding bag. What kind you can use depends in part on what kind of g-tube you have. We have always had MIC-Key or MIC-Key equivalent g-tube buttons (AMT Mini One). I prefer the AMT Mini-One MIC-Key Compatible extension tubing versus the actual MIC-Key brand tubing. It has a wider diameter, is more flexible and holds the "christmas tree" tip of the feeding bag in place more securely. We use two kinds: the right-angle single port (purple tip) tubes and the y-port (it has a med port for administering meds) right-angle (clear tips) tubes. In all, I prefer using the single port because my son had a habit of opening the med port on the y-port tubes and then getting yucky formula on everything. However, the single port was a challenge to administer medications through. We recently found that using Luer-Lok syringes makes it easy to administer meds through the single port. The Luer-Lok syringe tip fits perfectly and securely into the extension tubing.
**Syringes: see my discussion of Luer-Lok syringes above. We generally order 10 ml syringes but you can get any size as long as they are Luer-Lok. Additionally, we always have 60 ml bolus syringes we use for venting (only necessary if your child has a Nissen Fundoplication) and water flushes.
**G-Tubes: As I mentioned, we use MIC-Key or MIC-Key equivalent g-tubes. I actually prefer AMT Mini-One g-tubes.
**Pumps: We have only ever used the Zevex Enteralite Infinity Pump. I love this pump. We have used the Kangaroo pump in the hospital and it is much heavier and bulkier. I had a small child who started using the pump at 7 mos old. He learned to sit up, crawl and walk wearing his pump. Because it hasn't impacted his mobility, I am a big fan of the Zevex. We would not have had such success with his mobility if he had used the Kangaroo.
**Backpacks: until recently, we used the Zevex Super Mini backpack for our son to carry his pump in. It is very small and makes it easy to carry, even as a baby, but it does have a bit of a tendency to "turtle" him, which can make him less stable when walking. We recently started using backpacks from Feeding Essentials, which we really like. The Feeding Essentials backpack is slimmer (slightly longer) and much lower profile. It also has a better front strap that we have determined reduces chafing on his neck from the straps. Loading the Feeding Essentials is a bit of a pain but way easier on him to carry.
**Formula Pitcher: I am all about efficiency. For this reason, I make my bags once a day and mix all of the day's formula at once. I use the Dr. Brown's formula pitcher. This is a great pitcher as it has an emulsifying mixer attachment for thoroughly combining formula and has exact measurements on the pitcher in both mls and ounces. This is critical when you have a child who is on a very controlled diet and you are counting every ounce they get. I make my bags in the evening. I take what is left of the bag he was feeding from throughout the day (kept cool with freezer packs in the backpack) and add the amount of formula I need for his overnight feed. I then take the remaining formula I have mixed and make a bag for the next day. I refrigerate that bag and then, in the morning, I just load his backpack up. It saves a lot of time.
**Bella Bands: My son goes to preschool/daycare. They were slightly concerned about other kids pulling on any excess tubing that may be visible between his clothes and the backpack. We solved this problem by buying a Bella Band (available at Target and online--it is a pregnancy band) in size XS. We then just put the Band completely over his clothes and backpack. This hides and makes any tubing completely inaccessible and has the added benefit of stabilizing him a little so that the backpack load isn't quite as back-heavy. It works great. By the way, we've never actually found an issue with kids pulling on his tubes even when they are exposed but this gives a method for peace of mind.
**Tape: We use a couple kinds of tape. We use cloth tape and satin tape (both medical tapes). The cloth tape we use to create a little tag about midway down his extension tubing. We then use the tag to diaper-pin the extension tubing to his clothes. This makes it so that if the tubing gets pulled, it will pull on his clothes and not on his actual g-tube, reducing the risk of the g-tube getting pulled out accidentally and discomfort to him. We use the satin tape to affix gauze over the stoma. We don't tape directly to the skin, we just use a little to secure the open ends of the gauze together. I don't like the irritation that taping to the skin causes.
**Nighttime feeds: Many tube families will find themselves having to do overnight feeds at one time or another. When we first got our tube, we were never given an IV pole, so we didn't even know that was an option for hanging the bag at night. However, our son doesn't frequently stay the entire night in his bed anyway (sigh) and so we found that just extending the tubing and putting the backpack in a corner of his crib worked just fine and was way more portable than the IV pole.

Hope someone comes across this and finds it helpful! These are little things that have made our days run much smoother.

Practicing Forgiveness

Charlie recently graduated from the infant room to the toddler room at his school. He has adapted wonderfully--I think he was more than ready for the challenge. He most enjoys gardening. The toddlers (18 mos-2.5 years) maintain a garden, growing sweet peas, cucumbers and carrots among other treats. Evidently, Charlie is quite the avid gardener, evidenced by the wonderful cucumber he brought home from school last week. I'm just sad he can't taste the fruits of his work.

Today, the school's director told me a story that positively warmed my heart and says everything about my sweet little boy. Another friend from school tried to bite Charlie today. After counseling and a discussion of the merits of not biting your friends, the offending little boy was put in a quiet time to reflect on his behavior. Charlie stood and watched his friend in trouble and then suddenly said to Melissa (the director), "No Lissa, hug!" and went to his friend, pulled him by the hands to standing and embraced him. Then, Charlie removed his pacifier and gave him a kiss.

I love seeing my little boy learning to extend forgiveness so effortlessly. I hope he holds onto this virtue.

As I write this, I just scolded Jack for screeching and asked him to sit quietly next to me for a few moments. Charlie immediately came over to sit next to his brother. :-)

Back to Blogging

I took a couple week break from my blog challenge while traveling for work for two consecutive weeks. I haven't given up and plan to try to resume on Monday but for now we are preparing for a return to the hospital...Charlie is having surgery on Monday. Despite having done this many times before, I confess I am grappling with a lot of anxiety about this particular surgery. I'm praying for an easy recovery, no complications and not too much of a setback as far as his growth is concerned. Since we got his g-j tube about two months ago, he has been gaining weight really well, better than he ever has. He has been happier, he is sleeping through the night (!) and his personality (complete with a little almost-two-year-old sass) is shining through. We've really been enjoying the little boy we've been seeing. I'm just hoping this doesn't set us back too much.

On the Jack front, we have spent most of this week trying to readjust to being back home after a prolonged stay. Charlie and I were in Southern California for the past two weeks while Jared and Jack stayed here. Jack always has a bit of an adjustment period when we come back--clingy, emotional and in need of reassurance.