Friday, December 31, 2010

May the Force Be With You

Here's James post-surgery, almost 4 months old (taken Dec 27, 2010). He's such a cutie!

Wednesday, December 29, 2010

4 Month Checkup

James just had his four month checkup, and I'm happy to report that he has made it onto the growth charts!

He weighed in at 10lbs 8oz, which puts him at the 10th percentile. His length is 24inches, the 25th percentile. All the DermaBond has come off of his incision, and only a pink scar remains.

Everything looks good!

Here is our little man, pre-surgery, at 3 months and one week old.

As a comparison, here is little Caleb at six weeks old.

Monday, December 20, 2010


We made it home today!

The chest x-ray yesterday showed that James no longer had much fluid on his lungs, and today's echo showed a big improvement in his heart function.  So, as the doctors were explaining this to us, the moment came when they said, "I don't see any reason why we should keep James another day."  That was a good moment!

We will be trying to get back in the swing of things over the next couple of days.  We are OK with visitors, though the doctors told us that only healthy people should hold him, and only after washing really well.  In fact, he told us to keep James secluded for the rest of the winter!  We won't be able to wall him off for all that time, but we will be very safe with him.

So, please come by if you want and are feeling OK.

God bless you, just as He has blessed us!

Sunday, December 19, 2010

Feeding the Boy

I nursed Caleb for 14 months, so nursing James was a natural choice. However, it doesn't seem to be in the cards. At first, we started adding a half teaspoon of formula for every ounce of milk to add more calories. At that point I was still hopeful that we could nurse. But now we've added a thickener, which dilutes the milk, and more formula in to counteract the dilution. At this point, only about a third of the milk James drinks is actually breast milk! So the bad news is that it's a hassle trying to get a bottle together. We may start making milk in 24-hour batches. The good news is that there's no worry at this point of my milk supply getting too low. Of the 24 ounces of milk that James is supposed to drink, only about 8 of those ounces are mama-made!

Not much has happened since our last update. For everyone checking the blog multiple times a day, I'm sorry to disappoint you! We're just waiting at this point. Since my mom is taking her laptop, and Jon's is being dumb and not letting us log in to post, we may not be able to post again until we're home.

Today's update

The weekend is much slower around here, but just because it's Sunday doesn't mean nothing's been done. James had another x-ray this morning, and it showed that the fluid around his lungs is clearing nicely, even with the decreased diuretics. Hopefully in the next couple of weeks he'll be off that medicine completely.

The other medicines he's taking include something to help his heart function and something to help his low thyroid numbers (hypothyroidism is common with DS, and we found out James had it with the pre-op bloodwork). His low heart function is common after heart surgery, but his is a little lower than expected, so the drs have been watching it. They want to give it a little time, which is why it seems as though we're just waiting around at the moment. The nurses brings his meds--which we administer (the oral ones, at least)--and we are in charge of feedings, bathing, and diaper changes. Hopefully Monday's echocardiogram will tell us that his heart function is back to normal, and we can head home!

We've heard a few estimates for our home-going, and none have been later than Tuesday. I can't believe we'll be home for Christmas! I suppose something could still happen, but so far things are going well.

For that reason, my mom is heading home today. My dad came up for the weekend, so they'll head home together and then be on their "Christmas tour" to see all the family. Jon went home last night to check on things, and he's headed back up today. Then it'll just be he and I in charge of our little bundle. Caleb is still with Nana and Grandad and loving it, but I miss him. It'll be good to have our family all together again soon.

Friday, December 17, 2010

The swallow test

The swallow test was pretty neat. It was a continuous x-ray of James's throat as he swallowed liquids of different consistencies. We found out that he does aspirate some of his food (meaning it goes into his lungs) even though he doesn't cough or show other signs of it most of the time. The liquid just kind of swishes around his mouth and even a little into his nasal passages; it doesn't clear very well. It went much better with the thicker liquid, so we will start adding "honey" into his milk. It's not really honey, but looks like clear hair gel, and is about that same consistency. As he grows, we'll add the thickener to any other liquids (medicines, juice, etc.), and add extra rice cereal into his foods so they're nice and thick. The swallow test will be re-conducted at about a year of age to see how he's doing. Because he doesn't clear his passages very well when he eats, we have to be sure and feed him upright and then we give him a paci to encourage a few "dry swallows" during feeding, so he'll swallow it all down. We were also given some methods of massaging James's cheeks that should help improve his muscle tone there, which will improve his ability to keep a good suction on a bottle.

His feeding is getting more complicated, but hopefully it will encourage him to eat!

We're still on track for leaving on Tuesday, though the wait is mainly for the purpose of getting James off antibiotics and making sure there is no more fever. Hopefully that means that things will be a little slower. Jon and I both got to rest a little today, so that has been nice. Maybe I can finally get to that knitting....

Word from the Doctor

We just heard from Dr. V, who has been overseeing James through this process of healing.  His echo and chest x-ray revealed a slight decrease in heart function (it isn't squeezing as hard).  So, he will be getting a new medicine to help his heart pump harder.  This isn't abnormal, so no one is really worried about it.  Otherwise, the echo showed that the VSD hole was completely closed - he literally no longer has a heart murmur!

Dr. V is also concerned about that little spike in temperature James had overnight.  So, we will be giving him his tylenol only as needed instead of every 6 hours, since that can mask a fever.  As it turns out, James has already been off of that for several hours and had no fever, so that probably isn't a problem.  Even so, blood that was drawn yesterday for cultures to see if James has any infections will be monitored for 48 more hours.

All this means that James will be here until Tuesday, at least.  (noon Sunday for the cultures, then the last of his IVs out, and 1 more day to make sure of everything)  That isn't as early as we had hoped, but it is way earlier than it could be!

Friday morning...

Good morning!

We had a little rougher night than we've had before on this hospital stay.  James is good, but Lydia and I slept a lot less.  Now that James is out of the Cardio-Vascular ICU and in a more normal room, we get to handle most of his care - feedings, diapers, sponge bathes, etc.  This is fine and good, but the hospital wants us on a round-the-clock feeding schedule instead of the one we are all used to (ie - sleeping through the night).  So, we got James up every 3 hours through the night to eat.  He didn't eat nearly as well, but I think that is more due to him wanting to sleep than anything wrong.  We did take turns, with Jon (me) handling the 11pm and 5am feedings and Lydia handling the true dead-of-night feeding at 2am.  Otherwise, since reaching a more normal awake time, James has eaten perfectly.

We have had a busy morning.  James had an echo and chest x-rays done to check to make sure everything is working like it should.  I don't expect anything negative to come of this, but they haven't told us one way or the other yet.  Of course, the techs who did the tests could tell us, but they aren't allowed to.  Oh well!

Later today, at noon, we have to stop feeding James in order to prepare him for a swallow study.  Many Down Syndrome kids have difficulty swallowing, and James has sometimes choked a little on his milk.  So, we are going to do the test to see if he needs to have his liquids thickened.  If he does, this could also help speed up his feedings, as he won't feel choked as he eats and will probably want to continue eating longer at each meal.  The study will also help us justify to the insurance people the cost of the thickener, which is apparently not cheap!  Is anything cheap?

One minor bump in the road occurred last night.  James had a fever again (101).  This is due to the nurse forgetting his pain medicine for several hours.  I doubt that he would have had this problem, otherwise.

I think that is all for now.  Please continue to pray.  We love you all.

Thursday, December 16, 2010

And to All a Good Night...

OK, so James is doing extremely well.  He's free of nearly all his medicines, his fever is under control, and he is eating very well.  In fact, he is continuing to eat fast (for him).  You probably won't understand how excited this makes us - his normal feeding has been 45-60 minutes long for 3 or so ounces, but these feedings are 12-15 minutes for the same amount.  This translates into 3+ hours of time gained back in our day!

Otherwise, we are really getting excited about the possibility of heading home with him much earlier than we had expected.  It seems very possible that this will happen on Saturday!  That would be awesome!

In other news, as we've been in the waiting room here, we've been blessed to get to know several other families.  Many are facing far more difficult situations than we have with James.  Currently, we are sharing a room with baby Reagan.  Please pray for her and her family.  She has her arteries switched so that she has 2 vascular systems - one circulates blood to the lungs and back to the heart in a circle and another that does the same thing with her body.  The only thing that has allowed her to live at all is that she also has holes in her heart allowing a small amount of oxygenated blood to cross over to the body.  She has already been through 1 surgery and will have another next week.  Please remember these other families as you pray for James.

Well, we are about to settle in for our first night apart.  Lydia will be in the room with James, while I get to stay in the waiting room.  This is a blessing for Lydia (and not because she gets rid of me!).  Even so, we can't wait to get home with our little boy!

Good night!


I've somehow managed to not give everyone an update last night, and I'm sorry about that! Things happen so quickly around here, let's see if I can remember it all.

Yesterday, everyone got to hold James to feed him. I was the last one to get the chance. I can't tell you how GOOD it felt to hold my little baby. I couldn't stop smiling.

I'm going to skip to the big news, and that is that we are out of ICU!! James no longer has a chest tube, and the only lines he has going in him is one arterial line for putting meds in, and one line in his hand just in case--a hep lock like the one I had during labor/delivery.

During a feeding in the night, James starting choking and sputtering a bit. It's pretty common with him, but to be honest we hadn't really worried about it. However, an Occupational Therapist came by this morning and gave us some thickener. He swollowed up 3oz of milk in 13 minutes flat! They will be conduction an official swallow study tomorrow to see if it's necessary to keep using the thickener.

And here's some crazy news: the OT wanted to make sure the test happened tomorrow--to get it done before we head home. Ack! I just can't believe it! That does NOT necessarily mean we're going home in two days, but there has been a lot of talk about getting him ready to head home. In general, his heart is doing very well. The doctor's two concerns before sending us home are 1) swallowing, which we will address with the OT tomorrow, and 2) fever. James has had a consistent fever since surgery, which is not abnormal, but it has continued to persist. James has been treated with Tylenol with codeine for pain, but evidently that doesn't give him a full dose of Tylenol (which would help the fever). So they pulled that med and gave him plain Tylenol. That was at the feeding when he spit up some, so he didn't get a really good dose of Tylenol until the morning. Though they haven't taken his temp since then, he's finally fallen into a good, good sleep--his first post-surgery. It's so good to see him sleeping soundly and looking comfortable.

That's it for now. More later! Thank you for your prayers!

Wednesday, December 15, 2010

Update from Rounds

The doctors just did their rounds, and let me tell you, it's a little bit mystifying why 6 people file into the room, one takes James's blood pressure, listens to his heart, and tells us he's fine. Then he answers any questions we have, and they all file out. I'm sure there's a purpose for those other members of the entourage, but I can't help but wonder how much they're charging for that little parade.

James ate about an ounce of milk. He had seemed a lot hungrier than that, but I guess he's still sleepy from the morphine and the general healing process.

Speaking of morphine, the doctors will start stepping it down today, and by the end of the day he'll be on Tylenol with codeine. The morphine makes him sleepy and slows his breathing, so it will be good to have it off. But yikes, it kind of makes me shudder. I hope he won't feel any pain. I know the doctors and nurses are doing their best to prevent it.

James has a bit of a fever, which is normal after surgery. Right now the nurse is about to take out his catheter, his arterial line (which was monitoring his blood pressure and allowing a port for meds), and his rectal probe thermometer (James will appreciate that, I'm sure!). He no longer has the oxygen line under his nose. They're expecting to pull the chest tube out tomorrow (which pulled extra fluid out from the body cavity), as well as his lead lines for the external pace maker (those were a precaution which were never needed, praise the Lord!). He's slowly losing all these things attached to him, which is great!

9:00 and All's Well

The night nurse was quite proactive! She hadn't been here long before she decided that James was struggling too much on the ventilator, so after consulting a doctor, she took it out! And guess what: his oxygen levels went up! He's doing well with just the little tube that goes under his nose, and this morning the nurse said they may even be able to take that off in a little while.

This nurse had her own specific way of doing things. All the tubes were lined up nicely around the bed, taped down to rolled-up blankets, anchored and secured with clamps, and James had a diaper on! (Since he hadn't had any food, and he has a catheter in, there isn't really any need for it, but she makes a policy of giving all her babies diapers.) I really appreciated all she did.

When I went in before shift change this morning, the nurse had also taken out James's NG tube (that was keeping fluids out of his stomach to prevent problems if he were put back on the ventilator), and he had taken 2 ounces of Pedialyte! The nurse was thinking that his next meal would be breast milk. Hooray!

My mom is in with James now. Jon and I had a pretty good night. Certainly not the best sleep we've had, but not the worst, either. It's very interesting how this waiting room turns into a home at night. The lights come on at 8am, at which point everyone cleans up their area, puts away the linens, and takes turns in the shower. There's coffee brewing, but we're heading to the cafeteria now.

Much love to all. Thank you for your continued thoughts and prayers!

By the way, I have knitted three rows of stitches. The skein of yarn is a jumbled mess (HOW am I supposed to find the end of the yarn??), but I think it's going well.

Tuesday, December 14, 2010

Update on James and Hospital Life

James still has the ventilator on, which means he's still sedated. His oxygen level is 93.7% and it needs to be higher than that before they take him off the ventilator.

It's just the three of us here now: myself, Jon, and my mom. My mom will be headed to a motel for the night, since only 2 adults are allowed to stay in the waiting room thru the night. We'll use that motel as our resting place if one of us needs to get away and get some sleep or a nice shower. The waiting room is equipped with chairs that pull out into beds, and a shower, so Jon and I will be camping out here. There are snacks that people donate, toiletries, and even laundry detergent to use with the washing machines when it's time to do laundry.

The hospital has a "pumping room" for nursing moms. It's in the NICU and has curtains partitioning off four areas of a room. The hospital provides the pump and the accessories, and there is a bin of sterile bottles in every pumping area, as well as books and CDs. Once I'm finished pumping, I put the bottles in a box labeled with James's name, lock it with a padlock, and put it in a large glass-front fridge. There are bottles of water there for the moms to take. The nurses then will freeze the milk every day. When James is ready to take milk, the nurses will thaw out enough for a day's worth of feeding, and will provide it to the CVICU. At first they'll give James the milk thru a tube that goes directly to his intestines, and just enough to jump start his digestive system once again.

This is my first time since getting here this morning that I've just been sitting. Maybe it's time for me to bust out my knitting needles and see if I can make heads or tails of my new hobby!


Here is a link to the photos of the day and yesterday. I'm only including a link and not the actual slideshow because it does contain photos of little James with all his tubes. Jon got pretty white seeing the real thing, so don't feel bad if you don't want to see the photos. :)

We saw James!

Jon and I (and now the rest of the people who've been in the waiting room with us) have seen James! He's sedated, so he only gave an occasional twitch or tongue movement. He's covered in wires and tubes. The best news is that I got to hear the solid "thump thump" of his heart! Yesterday his heart was giving a "whoosh whoosh" that I will never hear again! Praise the Lord.

I'll have pictures up soon. Thanks for your prayers!

Surgeon just visited

Dr. I just stopped in to say that things are going well. James is all sewn up now. He'll be cleaned up and then headed to his room. We'll get to see him 20-30 minutes after that, once he's all settled in. Dr. I said the hole was very large, though it had mostly been covered by the valve. So we're excited to see what changes we see in him once he's recovered!

Update: As I was typing this, the nurse came back in and said James is in his room. He is doing well, and didn't need any transfusions. He's still on the ventilator, which means he will still be sedated when we go see him. I'm not looking forward to how pitiful he will be, but I'm ready to see my baby boy!

The hole is patched!

The nurse just came in...

This is my (Lydia's) first time to update since surgery started. Has anyone mentioned how huge the nurse is? His name is Mike, and he's a giant.

Back to business...

We just received the leftover bit of Gore-Tex that was used to patch up James's hole. There is a small circle cut out of the bit, about the size of a dime. Which, when you think about it, a dime-sized hole in an egg-sized heart...that's a pretty big hole.

The doctor also sutured up a small hole between the atriums. This hole had been mentioned at our very first visit, but the dr. then had said that it was common to most babies, and nothing to worry about. I guess the surgeon decided to just take care of it, and that's fine with me!

James's heart is now beating on it's own! The next stage is to add in lines for a temporary pacemaker, put in chest tubes (to get any drainage out of the chest cavity), and then sew him all back up. The nurse will be back in an hour for any other updates.


OK, our nurse just checked in with us again to tell us that James is now on bypass and that the surgeon is working on patching up his heart.

About to start...

The nurse just came in to tell us that James is asleep and now has all of the various IV lines in.  They should be cutting open his chest right now, and then they will work on getting his heart on bypass.  We'll hear more as things progress.

He's in

The nurse and anesthesiologist just came and picked up James. We've been set up in a private waiting room. The nurse said it will take an hour to an hour and a half to get all the lines and tubes in. At that point the nurse will come out and let us know, then he'll come out every hour to give us updates.

James did very well without food this morning. He only had a small breakdown toward the end of waiting, but he settled when we started walking. He's a trooper!

Monday, December 13, 2010


Well, we all spent this day at Arkansas Children's Hospital getting James checked out and learning all about the surgery he will be having tomorrow morning.  It was a long day, but not too bad.  What we learned didn't scare us too much, either.

So, please be praying for James tomorrow.

His surgery is set to start at 7am and run until sometime around noon.  The first hour will consist of getting him to sleep and plugging in lots of different IV lines and breathing tubes.  After all of that, the doctors will get him on the heart/lung machine so they can bypass his heart and get it still to work on it.  They will administer some sort of high-potassium medicine to get the heart to stop beating.  They will cut into the right atrium and put in a patch made of Gore-Tex, fixing it to cover the hole between his two ventricles.  After that is done, they will bring his heart back on and hook his blood vessels back up so that blood starts flowing through it like normal.  Then, using a device lowered down his esophagus, they will take an echo-cardiogram to see if the blood is flowing correctly and the hole is fully closed.  They told us that there is a chance that it won't be entirely closed and might need a little more work after the heart is brought back on-line.  After that, he will be brought out of surgery and we will get to see him.  He will likely be on a ventillator for the rest of tomorrow and overnight and in ICU for several days.

We will be using this blog to keep everyone up-to-date with how things are going with James.  So, please check here often.

We love you all!

Saturday, December 11, 2010

Surgery for my baby boy

I'm sorry I haven't updated this blog enough over the past few months. Besides the picture posts I am trying to catch up on, I have had so many thoughts and updates about the boys. However, some things just don't get done, and when things get crazy, the blog is one of those things.

James has Down Syndrome. I mentioned that once, and at that point I hardly thought we'd need to mention it much more. His doctor declared him a healthy baby with no problems other than this extra chromosome floating around. However, during the first few weeks of James's life, we struggled to get him to eat, and I believe we really fought for his life. Our doctor was still sure that things would work out just fine as long as we kept doing what we were doing, but we were struggling to get even a milliliter of milk in him, at a time when he should have been taking in hundreds of milliliters. I breastfed him almost exclusively for the first week, until a weigh-in before and after a feeding revealed that he wasn't taking in any milk. At all.

When I think back on that week and realize that he hadn't been getting any kind of food, I shudder. And I thank God for a friend, Kathy, who recognized that James was in trouble. She used to be a neonatal nurse at the hospital, and she supplied me with preemie bottles and nipples, a scale, a daily check-in, and a wealth of information about how to best help James conserve his energy. He slept most of the time, never cried, and was a very lethargic baby.

Slowly...slowly...James gained weight. Our doctor felt that all was going well, and even began to doubt that James had Down Syndrome. However, we finally received the chromosome test that confirmed he indeed had DS, and our doctor referred us to a pediatrician in town (there are very few pediatricians here, so most people take their kids to a family dr.).

Our new doctor, Dr. R, is known for being pretty brusque. Very thorough, but no bedside manner. He came into the room with confidence, and began to examine little James. In the silence, Jon remarked how grateful we were that James's heart was healthy, which is uncommon among Down Syndrome kids. Dr. R looked up sharply.

"Oh James has a heart murmur. A pretty loud one."

Those words confirmed our fears. James's sleepiness, his struggle to gain weight, his hard breathing--we didn't know if that was just a typical DS baby, or if there was something more wrong. A heart murmur made sense.

We were at the Children's Hospital in Little Rock the next day.

Children's confirmed a hole in James's heart, called VSD. The hole was causing some of the chambers of his heart to have high pressure, some to have low. One of his valves wasn't closing correctly because of the hole. There was fluid building in the tissues of his lungs. His heart was working as if he were running all the time. We were sent home with diuretics and formula to add into the breastmilk.

The change in James was dramatic. We began celebrating ounce after ounce of weight gain, and then half pound after half pound. He was awake more often, and then he began to kick his legs, notice his surroundings, and even start to cry a little when he got hungry. However, his breathing was still labored and he was well below the weight he should be. The day before Thanksgiving--our most recent visit--confirmed that the hole was not closing up. The high pressure on his lungs would eventually cause long-term damage, and the aortic valve was starting to show signs of distortion. The doctor gave us strict orders to keep James away from any possibility of contracting RSV (which could land him in the hospital and cause severe damage), and he suggested we come back for surgery within 4-6 weeks. The nurse called the next week with a surgery date in two weeks. The 14th of December.

The past two weeks have been stressful. We've kept James away from infection as much as possible, learned about the surgery and the procedures surrounding it, and come to terms that our tiny baby boy was going to have open heart surgery.

Tomorrow we leave for Little Rock. Monday is a day of pre-op tests and talks with the doctors. Tuesday is the surgery. I'll do my best to keep you updated on this blog. I know so many people are praying for us. God is good, and has shown His provision for us in so many ways these last few months.

Tuesday, December 07, 2010

October Postings

I've put up a lot of photos from October in several posts. Either scroll through the October posts, or click each of the following links individually:


Many faces of James


Pumpkin Patch

Playmat Time


Visit with Sophie

Playing with Devin


Sunday, December 05, 2010

Merry Christmas

Merry Christmas from the Norvells!

Wednesday, December 01, 2010

Shutterfly Cards

So many new babies this year! Many of our friends have added to their families and will want to send photos to friends and family via a holiday card. Shutterfly is offering a huge selection of cards. Use their templates or design your own. Color schemes range from the traditional greens and reds to the more modern blacks, browns, teals, and sage. The card above is one of my favorites:
I love the classic "framed" look of this card. It could even be put in an actual frame and displayed! There are other selections which have multiple pictures so you can showcase each child or even your pets! Please go browse through the selections at www. to see all the wonderful choices for cards this year. Checkout is simple at Shutterfly and delivery is quick.

Personally, I LOVE receiving photo cards from friends and family. I display them on my fridge as a daily reminder to pray for them and to stay in touch (perhaps more often than I am apt to do otherwise). So, I'll be waiting to receive YOUR holiday photo cards in the mail this month!