Newborn Cloth Diapering--What Didn't Work

My cloth diapering journey (read: addiction) started when we were desperate to find an overnight solution for Charlie when he was on TPN and tube feeds. That led me to "resort" to cloth diapering and, very quickly thereafter, using cloth on Teddy too. He was probably 6 mos or so at the time I started him in cloth. So, it was a no brainer to cloth diaper our newest addition (an opportunity to try out new fluff!), though newborn diapering was new to me.

As I am prone to do, I did a lot of research and confidently bought the following: Kissaluv size 0 fitteds and Sweet Pea and Rumparooz newborn covers and the following all-in-ones (AIOs): Bitty Bee Changed, Sweet Pea, Diaper Rite, Tots Bots, and Blueberry Simplex. I later added Tidy Tots Newborn AI2, Ragababe NB AIO, Lil Helper one size AI2, and Softbums one size AI2 to my stash. I'm going to share what DIDN'T work for me in this post.

A little background: my test subject for this was a petite, skinny legged 18 in, 6.5 lbs newborn when we brought him home from the hospital. At 2 mos, he was still petite at 10 lbs, still skinny legged.

FITTEDS
Kissaluv Fitteds Size 0 v4: I used Kissaluv fitteds for overnight diapering with Charlie and they were great and I had read great reviews about their size 0 newborn fitteds and I honestly thought these would be my go-to newborn diaper. I only wound up using my two dozen of these one or two times--mostly because they were so dang fluffy on. There was nothing trim about this diaper, especially once you add a cover over them, which is a necessity with fitteds. If you don't mind the really, really fluffy bum look, these perform well. They are very absorbent and might fit better on a taller baby. I personally prefer a trimmer fit.
Pros: Very soft, fleecy material. Umbilical cord snap-down and adjustable rise. Fits a pretty wide range of weights and probably not quickly outgrown, especially given the superior absorbency. Would be good for a heavy wetter. No performance (leaking) issues.
Cons: Very, very fluffy and bulky. I wasn't easily able to fit any clothes over these and they just looked pretty silly because they were so bulky and the baby couldn't easily move his legs in them. Company, sadly, is no longer in business, so these are no longer easy to find new. Requires a cover, which further adds bulk. Although they are advertised to fit a wide weight range, and will technically fit from 5-15 lbs, the bulkiness results in a very, very fluffy, bubble bum. Available only in snaps--no hook and loop.

COVERS
Rumparooz NB Covers: I read so many great reviews of these but ultimately, I really didn't like these. I used these in combination with the Kissaluv fitteds and a couple times alone with an insert laid inside.
Pros: Nice, sticky hook and loop closures, makes it easy to adjust the waist fit. They did not come loose in the wash. Dries quickly and can be wiped clean between changes, which means they don't require washing between each change. Double gussets are great for containing messes. No performance issues. Adjustable rise, generous weight range.
Cons: These have a very boxy shape and thus, had a lot of bulk between the legs. This added significant bulk to an otherwise already-bulky fitted diaper but was bulky even by itself. I think they would have fit more trimly if they had some hourglass shaping to them. No performance issues, but didn't like the fit on my petite baby. I found other covers provided a much nicer fit.

AIOs
Bitty Bee Changed: I really, really wanted to love these diapers. They are itty-bitty, make your ovaries ache cute. Sadly, despite trying them again and again, these had performance (leak) issues every time.
Pros: Adorable. They are cute and tiny and come in super cute prints. They have an umbilical snap-down. These are a true newborn diaper and would fit a teeny baby. Trim fit, available in both a stay dry and a bamboo. The stay dry dried relatively quickly in the dryer. For every diaper purchased, the company gives a diaper to an orphan--I like the social consciousness of the company. Packaging had great presentation, as well, without being wasteful.
Cons: They leak. These were the first diapers I felt fit my fairly small baby but within an hour or two, they would leak. This was true of both the stay dry and the bamboo. Only available in snaps, which I find difficult on a newborn. The bamboo takes FOREVER to dry and is very nubby and rough feeling to the touch. Very small weight range for fitting. They claim these go to 12 lbs but I doubt I could fit my currently 11 lb 3 mo old in them. And certainly not without leaking. I think these are a first two week of life diaper. On the high price side for a diaper with such a limited fit.

Here is a picture of my test subject at 2 weeks old in a Bitty Bee:

Bitty Bees can be purchased here: https://www.thelittlebeeco.com/product-category/bitty-bee-diapers/

Diaper Rite:
Pros: Very affordable. These are an exclusive of Diaper Junction and are a very affordable option for newborn AIOs. They ethically made in China. They have a generous weight range. Performed okay, with some leaks. They have a good range of colors and prints. Snap down rise for adjustable fit.
Cons: These weren't bullet proof--we did have some leaks. I found the snaps difficult to get a good fit with and wonder if I would have had better performance with a hook and loop closure. These had a boxy shape to them, which made them not fit well between the legs and added quite a bit of bulk in that regard. These also would have benefited from some hourglass shaping. I could tell the difference in quality (PUL and microfiber) as compared some of the pricier diapers I bought.
Diaper Rite can be purchased here: http://www.diaperjunction.com/diaper-rite-newborn-all-in-one-diaper.html

Next up...what did work!

Spring Re-Cap

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be." -CS Lewis


I came across this quote recently and I think it pretty much sums up how I feel about our life sometimes and certainly about our Spring. I am trying to remember, though, that our dark clouds always have some beautiful rainbows interspersed.

Anyway...in January, our tenants in the house we own in Eugene reported some leaks around two windows. We had roofers out on a couple of occasions but the leaking continued whenever there was rain. Finally, the suggested that we probably needed a contractor out to evaluate as they felt the issue was with flashing missing around some windows. So, about two weeks after Teddy was born, we had a contractor out to the house. He concurred with the roofer's opinion and gave us a $2k estimate to fix the flashing and the caveat that he couldn't completely tell what was going on until he took the siding around the windows down. He agreed to start the next day. The next day, mid-day, I got a call from the contractor. I've since learned that calls from the contractor generally do not bring good news. When he took down the siding, he discovered that the house was built out of code (it was built in 2003, we are the second owners) and had no rain barrier (e.g., Tyvek) installed between the siding and the framing of the house. Consequently, the entire back door needed replacing and he had to install the rain barrier. And there was mold and rot. He couldn't tell us how bad that was until more siding came down. To make a very long story short, over the next two months, all of the siding for the entire house was removed, windows taken out, approximately 60% of the framing cut out and replaced, the back door had to be replaced entirely, the downstairs flooring and subflooring had to be replaced due to rot, the house completely repainted, and the window around the front door had to be replaced, as well as mold remediation efforts. It was a nightmare. And that $2k initial estimate? Well, that's pretty laughable now. So, now we are just in the beginning stages of trying to recover the costs from the builder, which, of course, involves legal fees. We also had to reduce rent for our tenants and put them in a hotel for 11 days during part of the construction. When we were living in that house Jared and I had always wanted to replace the flooring and repaint the house but didn't have the money. This is definitely NOT how I envisioned having to do it.

In the middle of all of this, my mother and I took Teddy and Charlie and headed to Cincinnati Children's Hospital to have some diagnostic testing done in hopes of getting some answers. We were there for a week, during which time Charlie had a surgical procedure and a 24-hr test and a surprise blood transfusion due to anemia. Cincinnati is ranked #1 in GI services. The primary test they did was a test to determine if he had an actual motility problem through his GI system. We knew going into it that if there was an actual underlying motility issue, there wasn't a whole lot that could be done. If there wasn't, there were some things that they could try. It was a good experience and we liked the doctor we saw and he spent a long time with us reviewing Charlie's history. He was very determined to get Charlie off of TPN and back to j-tube feeds. After all the testing was complete, we found out that, as we suspected, there was an underlying motility issue. So, we came away with some answers, but not a lot of new things to do for him. He had some suggestions for trying to wean him from TPN.

Less than a week after we returned from Cincinnati, we moved houses! Only about a mile but given everything else, it was a major effort. However, the payoff was great and we have a beautiful house that we are seriously considering buying at the end of our lease (we are a little gun shy after our situation with our other house). A lot of that will depend on whether we can sell the other house and other financial considerations. Our fingers are crossed as this is the PERFECT neighborhood and house for us.

The night we moved in, Jack tripped on the transition from the hardwood flooring to the carpeted family room. And broke his wrist. Seriously, at this point, I almost just laughed. Can one more thing really happen to us??? He was a trooper and got a glow in the dark cast to show for it. Let me tell you, I am now a PRO at bathing children who have various parts of their bodies that can't get wet. :)

Back to weaning off TPN...we came back from Cincinnati determined to get off TPN as quickly as possible. Now, I love TPN for what it is doing for Charlie's health but I hate it for what it does to my anxiety levels. He has gained 7 lbs since February and went from the 0 percentile to the 15th percentile. I, however, live in constant fear of infection, sepsis, blood clots, the line breaking, etc. I have all kinds of fears when it comes to this line that has given my son health and yet can result in a lot of harm very quickly. Well...a couple weeks in the new house and I started to notice some tissue around his j-tube. Granulation tissue is a benign tissue that can grow around a stoma, or the place where the tube enters the body. However, this didn't look like the granulation tissue I'm used to. I sent a picture to our doctor, who immediately referred us to surgery. We went in for an evaluation of the tissue and learned that his tube had prolapsed, meaning intestinal tissue was poking out, for lack of a better description. The "fix" was surgical and would be painful and not necessarily successful. If we left it as-is, it would likely result in some discomfort and leaking around the site but was not particularly dangerous. We opted to let it go until we absolutely needed to operate on it. And that's where we are today. Unfortunately, this has meant a greater reliance on TPN, so we aren't moving in the right direction there, and we've had one hospitalization due to skin breakdown but we are holding steady. I would just like Charlie not to have to undergo a surgery for at least a couple of months.

Right now, we are celebrating a week and a half with no trips to the hospital. Here's hoping for a few more weeks of that. :)

Teddy's Birth Story

This is long, long overdue. I am pretty sure this has been the most trying 6 months of my life. Already, so much of it seems so far away. I want to record this so I have it to look back on...and can wonder how we got through all of this!

At my last post, I was 36 weeks pregnant. A week later, during one of Charlie's regular nurse visits, the nurse was unable to pull blood off of his PICC line. This should be an easy proposition...the line goes right to his heart. Since we had some issues with the first PICC line getting pulled, I immediately thought that may have been the case, again, less than a week after having the second one placed. (Placement is a surgical procedure under anesthesia). After a call to our doctor, we made our way to the ER for evaluation of the line. Within that three hour window, Charlie's skin on his upper arm around the line had turned bright red and hot. The dreaded line infection. At the ER, they took labs, gave him some IV antibiotics and, because he wasn't running a fever, sent us home. The next morning, it was just as red and swollen and the skin had sloughed off under his arm and it was open and weeping. Back to the ER we went, this time we were admitted. This was a Tuesday and I was 37 weeks pregnant. My best friend was coming to visit the next day for a quick overnight trip since she was in the vicinity for a business trip. I spent that first night so ridiculously uncomfortable on the hospital daybed holding Charlie. Because we didn't know the nature of the infection, he was put on isolation. 2 year old + confinement to a small hospital room = not fun! The plan was to treat the infection by way of IV antibiotics and then have him go to surgery for a Hickman central line (a line in his chest instead of a peripheral central line (PICC)). On Wednesday, they did an ultrasound at surgery's request, just to see what we were dealing with before they went in and operated. They discovered he had a large blood clot in his arm where the PICC line was. Which meant starting him on a 3 month course of twice daily injections of a blood thinner. My best friend arrived and Jared took over so she and I could go to dinner and I could sleep in my own bed that night. We had a lovely, relaxing dinner at PF Changs, which was such an oasis for me. I hadn't seen her since December and it was so nice to just have a girls night out.


The next morning, I had my regular twice weekly non-stress test and then planned to head over to stay with Charlie so Jared could go to work. During the NST, the baby was not reactive and was having some decelerations with contractions. My doctor came in and told me they needed to deliver him that day! I was shocked, to say the least. A gazillion thoughts went through my head about how this was all going to work (did I mention Jared had JUST started a new job??) with Charlie in the hospital and facing surgery plus Jack to care for, etc., etc. My in-laws came up to care for Jack, Jared planned to take off work and stay with Charlie and I prepared to have a baby THAT DAY. Meanwhile, my mother tried to get the earliest flight to Portland. Since Jack was at school, my in-laws were able to come stay with Charlie so Jared could be present at the birth. Around 2 pm, we went into the OR for delivery...and our sweet Teddy was born shortly after. Weighing in at a whopping 5 lbs 7 ozs, he was perfect! Although we had planned all along to name him William, the week before his birth, my husband started having doubts. Jack suggested Teddy (not sure where he got it from) and we were debating between Henry and Teddy...right up until 15 minutes post-birth! I am a Type-A planner all the way, so this indecisiveness is very unusual for me! EVERYONE was pulling for Teddy as the name. He was so tiny...and Teddy just seemed to fit him. So, we went with Henry Theodore Scott for his full proper name and we call him Teddy. :-)


Since my mother couldn't get a flight until Sunday (this was Thursday), my friend Rachel came to stay with me overnight in the hospital. What a blessing she was! I had all kinds of fears going into the c-section but the thing that threw me for a loop was how nauseous I was post-surgery. I couldn't keep even the smallest sip of water down. So, Jared headed back to the Children's Hospital a couple hours after Teddy was born and Rachel came on duty. She was wonderful...she just came in and took over with Teddy when I needed her to, changing diapers, transferring him, and holding him when I was sick. We had some difficulty over the next couple days with feeding and I think she is the main reason we were able to conquer breastfeeding. A perfect blend of sympathetic and gently pushing to keep trying.


On Sunday morning at 6 am, I awoke to a text from Jared that a nurse had made a mistake and a peripheral IV they had placed in his arm to give him PPN (IV nutrition through a peripheral instead of central line) had been placed improperly and had been infusing in his arm. His arm was now very, very swollen and he may require plastic surgery. What?!?!?! I had been feeling pretty good the night before and so I had told Rachel I didn't need to have her stay. Well, I put Teddy in his bassinet, walked him to the nurse's station and asked them to keep him for a bit. I then walked over to the Children's Hospital (connected by a skybridge) to see Charlie. I needed to see him. I paid the price later in soreness but... Anyway, his poor arm was swollen to about 4 times its normal size. Apparently, whatever is in PPN can cause tissue damage and that was the reason plastic surgery might be needed. They said if his skin started to break down in the next 24 hours, he would need surgery. Otherwise, we would be in the clear. Thank God...his skin stayed okay although it took weeks to get that swelling down. Unfortunately, this meant that arm can't be used for IVs for a long time and neither can the other arm due to the blood clot. All of this postponed him having surgery AGAIN. This was one of the worst hospital stays we had ever had. The IV infusion issue came after they subjected him to several failed IV attempts and made Jared hold him down screaming. He is usually such a champ with getting IVs placed but they wouldn't listen to Jared when he said he does fine if he can just sit on one of our laps. Instead, they made him be pinned down. It was a rough, rough stay.


My mom arrived on Sunday and Teddy and I planned to discharge on Monday. The plan was for Charlie to have surgery on Tuesday. However, it got pushed back to Wednesday. It was very hard to leave the hospital and leave Charlie and Jared there. It was even harder to come home with the baby for the first time without Jared.


On Wednesday, Charlie has his Hickman surgery. It went well, he spent one additional night and was able to come home! We celebrated Easter at home the following weekend!


Well, this is long enough. I will update on the crazy months that followed Teddy's birth later. But, here is a picture of him shortly after birth...

And, going home!

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.

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.

Blog Challenge Day 9: Future

So, I am impressing myself with my commitment to keeping up this blog challenge.

Anyway, I think this is a little redundant to the "Where I'd Like to be in Ten Years" topic but since I can't come up with something more creative, I'll just go with this one but focus on the longer, longer term.

One of my favorite songs is Alan Jackson's "Remember When." Actually I'm pretty sure it is my favorite. I always think of this song when I think of how I'd like my future to look. Starting in the far future and moving backwards, I hope and pray that Jared and I get to see each other turn gray, retire, and enjoy a whole new season of life that is hopefully full of grandchildren and adventures. I'm hoping I can shed my practical, homebody mantle and enjoy some traveling with my husband. I hope we have made wise choices that afford us the opportunity to enjoy our older years without too many financial worries.

I often pray for my children's future spouses. I like to imagine what they are doing and how they are being shaped and molded to become what I hope is the perfect complement to my kids. To that end, I hope my children find someone to love and share life with. Marriage, for me, has been one of the hardest but most rewarding experiences. I simply can't imagine doing this alone. I know this may sound far-reaching and silly at this point in Charlie's life but every time we've been told of this health challenge or that and more recently, that Charlie's feeding tube is probably a permanent fixture in his life, I worry that it will be stumbling block in his dating life. I know...he's not even two and I have more complicated and pressing matters to worry about but...I'm being honest when I say this has crossed my mind more than once.

I have a wonderful relationship with my parents and my siblings (and in-laws as well!). I hope I can cultivate the same love for family in my children and teach them to rely on each other. I hope I have a deep and meaningful friendship with my kids as they become adults.

I secretly hope I have a "second career"--maybe as a nurse? I love what I do but I also can see myself being fulfilled in a different line of work.

I hope we have a house that people love to come to...that are lives are rich with family and friends and an open door. I really love Portland, more than I expected to, and so I do see us here for the long term but I hope we find that perfect neighborhood. I grew up in a little town that was completely walkable...it was safe, I walked to school, everyone knew each other (that's a little bit of an exaggeration but not much) and it had such personality and charm (and apparently, the second best beach in the country). I really hope we can find a town with a similar feel. Oh--and I would LOVE to have a vacation home, ideally on a lake or at the coast.

Blog Challenge Day 8: Satisified

So, today's topic is a time when you were most satisfied with your life. This is difficult and has required a lot of thought. It's not that I live being dissatisfied exactly but I do struggle with contentment. I am frequently worrying about or anxious about something or I am thinking about what's next to come. I am especially guilty of this when it comes to my children. I have this very acute awareness that my fertile years are fleeting and I just don't feel done. I don't even particularly want another baby right now but I also can't let go of the idea that I am not ready to be done having them either. But, I digress. Satisfaction is the word of the day.

I think the time I felt the most satisfied overall in life was shortly after we brought Jack home from the hospital. I felt so complete and not just in motherhood but in my marriage. I loved having this person between me and Jared who we created, who we were wholly responsible for. My best memories are of the nights when he was an infant. I did not breastfeed but I did pump. I, as a meticulous, perfectionist, worrying Virgo (ha ha), did not want to leave my milk supply to chance so I woke up every three hours and pumped while Jared bottle fed Jack. We got into the habit of DVR'ing mindless sitcoms and Food Network shows such as Unwrapped. We also ate copious amounts of Uncrustables during this time, which may have contributed to my inability to lose the baby weight (ahem). Anyway, those 30 minute interludes are some of my sweetest memories...we were fumbling new parents, in awe over our little baby and, while fraught with all the worries and anxieties that come with new parenthood, in those midnight moments it was just me, Jared and Jack.

Blog Challenge Day 7: Astrological Sign

Disclaimer: I think astrological signs are fun but pretty much nonsense.

My birthday is September 1 and I am Virgo. Based on the following description, I think it describes me pretty well, actually.

Traditional Virgo Traits:
--Modest and shy (I am modest, I am not shy)
--Meticulous and reliable (I think this is accurate)
--Intelligent and analytical (yes, at least to the analytical part!)
--Fussy and a worrier (YES)
--Overcritical and harsh (hate to admit it but yes)
--Perfectionist and conservative (yes and yes)

Blog Challenge Day 6: 30 Interesting Facts

Okay, I'm not sure these are interesting or not but here goes...

1. I am one of 5 children. I love coming from a big family.
2. As much as I love coming from a big family, I don't think I want more than 3 kids.
3. I am a birthing-class drop out. Made it through 1/2 of the first class and decided I would learn what I needed when I was in the situation.
4. I have a terrible sense of direction and get lost frequently. I've even gotten lost in a parking lot once.
5. I have a varsity letter in football from high school.
6. I am not athletic at all and particularly hate running.
7. I used to love in-line skating and still kind of wish I had a pair (is inline skating super dorky now???).
8. I primarily work out of my house. I love this arrangement.
9. I am terrified of birds. Especially the thought of them getting into the house and flapping around.
10. Poor table manners are a major pet peeve of mine.
11. I have a terrible habit of mispronouncing words.
12. I have a septate uterus. It has caused me all kinds of grief.
13. I love food and wish I had an easier time dieting.
14. I love newborns but I actually do not love the newborn phase of parenting.
15. In general, I love being pregnant and, after both kids were born, mourned the end of my pregnancies.
16. I always knew I wanted to be a wife and mother. There was never any question about that and I am so grateful that I was afforded the opportunity to do both. I try not to take it for granted.
17. I am very good at multi-tasking but I am learning that I struggle being "present" when there is so much technology to occupy me. I am working on that.
18. Sewing is a new-found hobby and I really love it.
19. I struggle with loving being a working mommy but also wishing I was able to be a SAHM. I wish there was a better balance. I am regretful I don't get to do all of the playgroups, etc.
20. I am not a morning person AT ALL.
21. I have no sense of style whatsoever. Last year, my older sister had to intervene and force me to buy some more stylish t-shirts. It's that bad, friends.
22. I hate doing hair and makeup but I feel so much better when I take the time to do it.
23. I can't wear white to save my life. Within an hour, I have usually spilled something on myself.
24. I am very much a girly-girl. I still love my American Girl dolls.
25. I am highly opinionated and have learned to not be quite so loudmouthed over the years.
26. I am blind without glasses and my eyes won't tolerate contacts anymore.
27. Since having kids, I have struggled with a somewhat paralyzing fear of heights.
28. I have a secret desire to live in Nashville one day.
29. I feel like I would have liked being a nurse and would consider it as a second career later in my life.
30. I didn't love my wedding dress.

Blog Challenge Day 5: Suicide

The challenge for today is to write about a time when you thought of ending your own life. This one is relatively easy--I haven't and can't honestly conceive of feeling that empty and desperate. I am a pretty anxious person...I am frequently anxious about all kinds of things happening/going wrong and have lots of irrational fears (of heights, of birds...). Probably why risk management is a good career for me. In order to stimie these anxieties, I often play "worst case scenario" in my head. I do this about losing jobs, not being able to pay our mortgage, etc., etc. And so, it confounds me that you hear frequently on the news of people not only committing suicide but also taking their loved ones with them as a result of this economy. I'm not passing judgment...just saying that basically, as long as Jared, me and kids were together...well, I feel like we would figure it out.

Blog Challenge Day 4: Views on Religion

I have to be honest, this one isn't making me jump up and down. Mostly because I have strong beliefs on the subject but I also don't like to engage in debate on this topic either. Or marginalize anyone or make anyone feel bad. Can you see the CATHOLIC guilt creeping in? But, in the interest of this challenge, I will post my beliefs.

I am a proud Catholic and Christian. I love the Church, I love everything it represents in my life and the Church has been a source of comfort and stability to me during so many times in my life. I love Jesus and I am humbled and awed by the sacrifice He made for this world.

I hope that I am an example of faith for my children and through my example, they come to know Jesus, as well. But, I want it to be a choice they make for themselves.