Wednesday, December 12, 2007

Long past due pics from the fall...






Sorry for the delay in posting these pics! I know, I know--I should be posting November and December pictures!! Thought you might like to see Halloween pics first. Hopefully I'll get Thanksgiving and Christmas pictures up in the next month. It's easier now that I'm back at work and have access to a better computer (I love my Mac!!).

I'm entitling the top picture, "If only magic wands worked!!" As you can see, Liam was not impressed with Halloween. But he sure does have a cute sleeper on, eh?

In Christ,
Lisa

Saturday, December 8, 2007

We're home!!!!!!

Woooooooooohooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And have I mentioned how excellent the cardiology nurses are at Vandy lately???

Happy to be home as of around 4 p.m. today!!! Liam is doing great with his new feeding tube, and it sure is nice to see him without a tube down his nose!!

In Christ,
Bill and Lisa

Friday, December 7, 2007

WHEW!!!

WHAT A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sorry I couldn't post a message before now, but I couldn't get away to do it sooner than this. It's been an extremely chaotic two days.

First, Liam has a brand spankin' new feeding tube, so he's the envy of all the other aspirating babies at the hospital now. ;)

I have never been in a hospital that was so swamped. We were bumped to a 2 p.m. surgery slot yesterday and then didn't actually go to the OR until after 4. Consequently, we couldn't get a bed last night so we spent the night in a holding room in the surgery ward. It was very weird. We were assured we would get a bed this morning. It's now 7 p.m. and we were JUST moved to the cardiology floor a few minutes ago, 15 minutes before the surgery unit closed for the weekend. I was getting nervous that we were going to be in a broom closet over night, but we have a lovely room and (THANK YOU, GOD!!!) favorite nurses we actually know from our last hospital stay. Even more remarkably, they remembered Liam and were happy to see him again. Either that or they should have careers as actresses instead of nurses.

Yesterday, Liam's surgery went according to plan (except for the timing snafu) and he came off the ventilator immediately after surgery. Yahoo!!! He did great in the recovery room. He did have a very rough night until Mama got quite stubborn with the doc and insisted that he give him the appropriate type of pain meds. Can you imagine wanting to relieve post-surgery pain in an infant with only Tylenol? Duh.

Today has been an extraordinarily difficult day. I am discovering that it's best to have cardiology nurses take care of cardiology babies, because if anything unusual happens with a cardiology baby's heart or respiratory rate, non-cardiology nurses tend to get quite anxious. When that happens, Mama gets nervous, too. Liam's heart rate and respiratory rate have been dropping intermitently all day, which was worrying his nurse downstairs to no end. Cardiology was called for a consult and pronounced him fit as a fiddle, but they moved him to the cardiology floor so his nursing would be more specialized. This makes Mama exceedingly happy.

We were supposed to be discharged today but they were so busy downstairs that they didn't get his feeds started on time. Consequently, he can't go home until he proves his new tube works. So far so good--we're up to 60 mL feeds now and he usually eats 78 mL at a time, so we're nearly there. We're hoping for a fairly early discharge tomorrow. We'll see how that works out. Please pray we get to go home ASAP. We're ready to be out of here!

More when possible...

In Christ,
Bill and Lisa

Saturday, December 1, 2007

G-tube surgery info...

Sorry--once again, time got away from us. It's hard to keep up with this blog in the midst of a whirlwind of doc appts!

Liam is set for G-tube surgery on December 6, so please keep him in your prayers during the upcoming week. It is hard to send him off for yet another surgery, but we know it's for the best. Please pray that he will extubate successfully this time--last time we had a terrible time trying to get him off the ventilator! I'll post an update after surgery on Thursday, and don't be shocked if you read he's in the PICU. They may decide to send him to PICU for close observation due the problems coming off the vent last time and his cardiac problems. It should be a one-hour surgery and just an overnight stay in the hospital, provided all goes according to plan.

He sure is a sweetie! He FINALLY smiled for the first time on November 17 at Momma. She sure was glad to see that goofy grin, and she felt like she deserved it for spending all those hours on the silly breast pump for the little guy! ;) He has a GORGEOUS smile!! Our camera is ultra-slow, so we haven't caught it on film just yet....

He's doing better holding his head up, but it's slow going. Because he won't be able to do tummy time for quite some time after the surgery, we expect it to be a while before he gets really good at holding his head up.

That's about it for the news for now. We'll keep you posted this coming week with new developments!

In Christ,
Bill and Lisa

Friday, November 9, 2007

Swallow study results are in...

While Liam showed some improvement on his swallow study done this past Wednesday, he is still aspirating about 12% of his feeds. They called in an ear, nose, and throat specialist to veiw the tapes of the study and he concurred with a recommendation to place a G-tube directly into Liam's stomach for feeding. They will repeat the swallow study in 2 months.

Needless to say, this is upsetting news. We were quite hopeful after leaving the study on Wednesday that we would be moving toward less dependence on tube feeding. Seems that's not the case for now.

In Christ,
Bill and Lisa

Wednesday, October 31, 2007

Echo results are in...

We are so happy to report GOOD news!! The hole in Liam's heart has started to close, going from "moderate" to "small" in the past 2 months. His coarc repair continues to hold steady, and the narrow area in his aortic arch that they have been monitoring has widened. The bicuspid valve is functioning just fine for now, and the small area of his heart that they have been watching (subaortic something or other) is continuing to grow. The gradients looked good, and the pressures in his lungs were good. His blood pressures on all four extremeties were fine. So, all things considered, things are looking fantastic in his heart for the time being. We don't have to see the cardiologist again until March '08.

The only concern Dr. Liske expressed was the low weight gain. We go for another swallow study next Wednesday. It sure would be nice to be able to feed Liam like healthy babies are fed!!

Please pray that Liam is not aspirating any more when they do the swallow study next week, and don't forget to send up many, many prayers of thanks and praise to God for the healing we've seen in Liam's heart so far!

Happy Halloween! We'll post our pumpkin patch photos and pics from Halloween ASAP...

In Christ,
Bill and Lisa

Saturday, October 27, 2007

Drumroll, please!





The long-awaited Oct 31 echocardiogram is almost here. We would appreciate all your prayers for our little Jelly Bean this week as we get a birds-eye view of what's going on with his heart right now. Please pray that the coarc repair is holding steady, the valve looks good, and (most importantly) that the ASD (fancy term for hole in his heart) is closing.

We continue to battle feeding issues, and were able to get a swallow study set for Nov 7 to see if there has been any improvement. You have no idea how happy we would be to see Liam free of his NG tube. We're starting to see the long-term effects of him being dependent on an NG tube for so long, and we really want to get rid of it as soon as possible.

The new pics above (and sorry for the text problems) are Liam on the beach in Florida, hanging out with his ever-present paci, and Liam getting warm after a bath this past week.

In Christ,
Bill and Lisa

Tuesday, October 9, 2007

Swallow study results from yesterday...

Hi everyone! I logged in this morning and was stunned to see that I haven't posted anything since 9/21. Time got away from me!! Sorry about that. We took a trip to Destin, Florida last week and had a WONDERFUL time playing in the waves and digging in the sand. Liam enjoyed the trip, too. He enjoyed taking naps on the beach under the umbrella while everyone else played. I'll post some new pictures as soon as I can.

Liam repeated the swallow study yesterday. We were really disappointed with the results, which showed he continues to aspirate fluid into his lungs. The speech therapist said he will have to continue with the NG tube feedings for another 8 weeks. They don't want to subject him to more radiation by testing him sooner than that (Liam has had a ton of X-rays already in his short life). She indicated that 90% of cardiac babies' feeding issues resolve on their own. He did seem to be able to drink longer before he aspirated this time, which is good. He sucks to rapidly and vigorously and gets overwhelmed with the fluid, so we are supposed to start giving him 5 mL of fluid by mouth one time per day and work with him in a specific way (I won't bore you with the details) to try to get him to slow down. We were also given permission to breast feed him twice a day for 5 minutes each time just to try to ease the transition to breast feeding, which will hopefully happen in 8 weeks.

Yesterday was a rough day, because we were so hopeful that Liam could come off the tube. Emotionally, it continues to be very difficult to constantly have to retape his tube to his cheek and put the tube down his nose and throat when it comes out. We know he finds the entire process irritating, as well. Add to that the entire pumping process for me, and you can well imagine how sick and tired we are of "feeding issues," regardless of how common they are with cardiac babies.

After the test, I was feeling the need for a spiritual uplift, so I went to a Christian bookstore to poke around. I just happened to open a book to the story about Jesus healing the blind man:

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (John 9:1-3)

Funny how God reminds us of things at the most opportune moments...

In Christ,
Bill and Lisa

Friday, September 21, 2007

Update and a few pics...


Hi all! We went to Liam's pediatrician yesterday, and he weighed in at 7 lb 13 oz. He is doing well and growing a lot. He has started to interact more with us, which is so nice! Here are a few pictures from the last week or so.
In the top picture, Liam pulled his tube out, so Mom took the opportunity to snap a quick picture of him. Of course, then he was grumpy, so the only way Mom could get a good pic was to stick his paci in his mouth. Figures.
In the other two pics, he is hanging out in his boppy and his swing.
Enjoy!
In Christ,
Bill and Lisa


Wednesday, September 12, 2007

PICTURES!! FINALLY!!
























































These photos were all taken either in the final days in the hospital or within a few days of arriving home (sorry, haven't downloaded the most recent pics from the camera yet).

From the top:

1 and 2: Liam hanging out in his pack and play at home. Note the preemie clothes, which fit much better than his coming home outfit, which was newborn size!

3: Grandma feeding Liam a bottle in the hospital.

4 and 5: Sarah meeting Liam in person for the first time on the cardiac unit. She saw him for about 30 seconds outside the OR as they whisked him off to the NICU, but she didn't get to interact with him that time.

6: Liam in his car seat, ready to come home from the hospital. As you can see, he was a peanut. Yes, the poor boy's pants are up to his armpits, and still hang off his legs. His newborn clothes did not fit, and we had to go out and buy some preemie outfits. Thankfully, he is now in 5-8 lb newborn sizes.

7: Sarah gets to hold her baby brother for the first time.

Results of swallow study

Liam is aspirating milk into his lungs when he feeds, which means we have to stop feeding him by mouth for 3 weeks and switch to only NG tube feedings for the time being. The speech therapist who tested him says this often happens with cardiac babies or preemies, and it's typically a growth issue that resolves itself fairly quickly. He will be retested in 3 weeks to see if the problem has resolved itself. If he aspirates his feedings into his lungs, he will likely develop pneumonia, which (obviously) would be very dangerous for a baby with heart problems.

We are disappointed to be going backward once again, but hopefully he'll grow out of this problem over the next few weeks and we can resume bottle feeds with better results than we've been having.

In Christ,
Bill and Lisa

Saturday, September 8, 2007

Ongoing feeding problems...

We continue to watch Liam struggle with feeding issues. He just can't seem to get a whole bottle down. Actually, I think we'd be happy if he could get even half a bottle down consistently these days! The feeding specialist (i.e., a speech therapist) decided to order a barium swallow study for this next week so we can get a better idea of what's going on. They will put him in a car seat and have him drink a bottle of barium solution (honestly, would you drink that if it was offered?). ; We trust that the specialists know what they're doing even if it sounds disgusting to us.

Other than that, Liam is doing well. He is getting more alert each day and will now wake for feedings at night, so Lisa doesn't have to set an alarm to get up to feed him. We are very happy that he'll wake us up now! That may sound crazy, but it's just nice to see him do normal baby things for a change!

Will update you when we have the results of the swallow study next week. Please pray this is a minor thing that can be corrected easily.

In Christ,
Bill and Lisa

Saturday, September 1, 2007

Sorry it's been so long since the last update!

Anyone who has spent any time at all with a newborn knows that those little people have a way of taking up an extraordinary amount of time! Add to that a jealous little 2 year old sister, NG feedings, pumping, and multiple doctor appointments, and you can understand why it's been so long since the last update.

Liam is gaining weight! Yahoo! At the cardiologist appointment yesterday, he FINALLY weighed in above his birth weight. Can't tell you how much more, because I have yet to find the time to look up the formula for converting kilograms to lbs and ounces, but I know he is over 6 lbs 13 oz, and his birth weight was 6 lbs 12 oz. The cardiologist was pleased with what he saw and we don't go back to see him until October 31. They are still watching the ASD (hole in his heart) and if it doesn't close in 4-6 months, we're looking at another surgery. They also continue to monitor his bicuspid aortic valve and there is a possibility we'll be looking at another surgery down the road to repair that, as well. However, his coarc repair continues to perform beautifully, and he passed all the tests they threw at him yesterday with flying colors.

We remain concerned about feeding issues, not because he isn't gaining, but because he isn't eating on his own yet. We continue to send the vast majority of his feedings down his NG tube. By now we had hoped to be off the NG tube entirely, so that is discouraging. His cardiologist wanted to give him until this next Tuesday and if things aren't improving, we'll be referred to a feeding specialist for an additional assessment.

Liam is a sweet baby who continues to sleep a lot, except in the middle of the night when Mama is up feeding him. Then he wants to throw a 2 hour party. As a result, Mama is exceedingly sleep deprived and has difficulty composing coherent sentences at various points in time during the day. This is also the reason for the lack of blog updates and pictures. We will post pictures as soon as Lisa can manage to achieve the mental capacity to learn how to do so (Heather, our photographer extraodinaire, has been kind enough to post all the ones that you see on the blog so far). Between pumping, doc appts, and being up with Jelly Bean a lot at night, blogging has definitely occupied the lowest priority slot in our house.

Lisa continues to recover from her C-section (actually, it was the speediest recovery known to mankind). Unfortunately, it seems that she is now paying for the fast recovery by being worn out over the smallest exertion, but she has decided she has no choice but to suck it up and keep going. ;) Bill is now back at work and trying to concentrate on work-related things when his mind is often more focused on what's going on at home. Jami, Liam's oldest sister, has been kind enough to offer a ton of help. She's been home since the day before Liam was born and has been WONDERFULLY helpful in all sorts of ways. We're sure we would have lost our minds by now without her.

Overall, we're doing well, and we extend many, many thank yous to our kind church family and neighbors for keeping us in meals for the past week!! We honestly don't know what we'd do without everyone's help, support, and prayers!

In Christ,
Bill and Lisa

Saturday, August 25, 2007

Coming home!!!!!!!!!!!

WE *** ARE *** COMING *** HOME *** TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

But we aren't excited about it or anything... ;)

In Christ,
Bill and Lisa

Friday, August 24, 2007

Friday p.m....

Liam passed his hearing screen!!! Yahoo!!! One less thing to worry about!

The attending cardiologist told us that if we wanted Liam to go home this weekend, we needed to put the NG tube back in to ensure we can get him all the calories at each feed. So, Lisa learned how to put a tube down Liam's nose and into his stomach (which was surprisingly easy, though I doubt Liam is a big fan of the process!). He is ready to go home now as soon as he proves to us that he can fatten himself up a little. We hope that at least by Sunday afternoon, we will find ourselves at home with him at last.

Have I mentioned how cute he is lately? What a handsome little guy! He has all the nurses wrapped around his little finger. I hope when I get home for good I can post lots of pictures!

In Christ,
Bill and Lisa

Friday morning...

2 steps forward, 1 step back. This morning before I left for breakfast, the nurse warned me that they would probably be putting Liam's NG tube back in. They were waiting on the cardiologist to do rounds to see what she would decide. He wouldn't take complete feeds overnight, and they want to ensure he's getting everything he can get. She said he's not likely to need to come home on the NG tube, but they'd leave it in until he's discharged. It's disappointing to think of him having to go through all that again.

They were doing the TN hearing screening test when I left and I decided I needed to go take a break in case he didn't pass, just to be in a better frame of mind to hear bad news about his results.

This afternoon I'll post an update regarding his hearing test results and NG tube.

In Christ,
Lisa

Thursday, August 23, 2007

Thursday update...

It's been a crazy day. I'm trying hard to be patient with all the different docs and nurses who are involved in Liam's care, but today it was a challenge. This morning, it looked like we were set to be discharged. Liam hit all his feeding goals late yesterday and overnight and when he pulled out his NG tube overnight, the night nurse left it alone and said they would probably remove it entirely this morning. The morning nurse, med student, and resident who came in early this morning all started preparing me for a discharge today, pending the opinion of the cardiologist.

When the cardiologist came by, she told me that Liam had lost weight. Since he was hitting all of his feeding goals, she said she wanted to increase the fortifier in his breast milk. I said, "What fortifier?" Turns out she had ordered a fortifier 48 hours ago that was to be added to the breast milk with every feeding and no one ever followed through on it, leading Liam's weight to start dropping. I wasn't even aware it had been ordered. So, we are here in the hospital for another 48 hours to give Liam a chance to gain back what he lost. The cardiologist was very frustrated with the entire situation, and arranged almost immediately for us to be moved over to the regular cardiology unit. We had been on cardiac overflow, which is actually an oncology unit, and the nurses just didn't seem to know how to manage Liam's care. I noticed an immediate improvement in nursing care when we moved over to the regular cardiology floor. It just felt like we were suddenly all speaking the same language.

Please pray we are able to go home in the next 48 hours. Sarah is having a tough time dealing with Mama being gone so long, and Mama is really homesick, too.

Some good news, though: They did another heart echo today and found the pressures they were so concerned about last week were "dramatically improved." Additionally, the coarc repair continues to look beautiful, and some of the growth they wanted to see in certain areas of Liam's heart is starting to happen. :):):) We were all very happy to hear this!!!! Please pray we will continue to see improvements in Liam's heart as he grows.

In Christ,
Bill and Lisa

The Serenity Prayer seems very appropriate tonight: "God, please grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

Wednesday, August 22, 2007

Wednesday update...

Well, we've been told that the only thing keeping Liam in the hospital at this point are his feeding issues. Dr. Liske, his regular cardiologist, says Liam is acting like a typical cardiac baby: He's just a sleepy eater. All the other treatment team members say the same thing. Please pray the feeding hurdle is overcome soon so we can bring our baby boy home!

In Christ,
Bill and Lisa

Tuesday, August 21, 2007

Tuesday evening...

Liam successfully breastfed for about 25 minutes today and the lactation consultant was thrilled with his progress. :):):) We haven't yet heard a plan for when they will be ready to let him come home, but we're beginning to think it won't be much longer...

In Christ,
Bill and Lisa

Tuesday afternoon...

We have graduated to the cardiac unit!! Yahoo!!!!!

In Christ,
Bill and Lisa

Tuesday update...

Sorry we missed posting yesterday. It was a busy day. They moved Liam to another part of the PCCU because there are no beds on the cardiac unit. It may be that he'll be discharged for home straight from PCCU. We were also working on feeding. The speech therapist and Lisa's mom are the only ones who have been successful getting Liam to drink from the bottle. We told Lisa's mom she couldn't go home since she seems to have the magic touch, but she is set to board a plane this afternoon. We sure will miss all the help, love, and support she offered to us through all of this. We're calling in lactation this afternoon to help get Liam started breastfeeding, so we'll see how that goes. He'll have to be eating better on his own before he can come home, but he really is improving his bottle-feeding skills, so we hope to bring him home by the end of this week!!!

Liam is off the vent, off oxygen, and doing great overall. It is such a relief to see him nearly "tubeless" (he only has the NG tube for feeding plus his wires that link him to the monitors at this point). Lisa hopes to post pictures later, but not making any promises since life is kind of crazy right now traveling to and from the hospital.

Thanks so much for your ongoing prayers. Please continue to pray for strength for Liam's family and for ongoing healing for Liam...

In Christ,
Bill and Lisa

Sunday, August 19, 2007

Sunday update...

We are happy to report that Liam was extubated today around 10 a.m. and is still doing well 12 hours later at 10 p.m. Sunday night. If all goes well overnight, Liam will move to the cardiac unit tomorrow.

We were both so happy to get to hold him. Until today, Bill and Lisa had only held Liam for 2 hours each. All Lisa did today was hold Liam. It was great!! :):):):):):)

Lisa tried to give Liam a bottle, but he didn't want anything to do with that. The nurses will continue to try to feed him every 3 hours tonight. If he still won't eat, speech therapy will come in tomorrow to work with him on "suck and swallow." No one is terribly concerned about his refusal to take a bottle yet, because he was on a vent for so many days. We know his throat is sore and we also know that he doesn't want one more thing crammed in his mouth. They expect that it will just take a little extra work to get him accustomed to bottle feeds, and then we'll work on breast feeding.

Thanks so much for your ongoing prayers and support...
In Christ,
Bill and Lisa

Saturday, August 18, 2007

Saturday update...

They have weaned Liam down to an 8 on the vent, which is where they normally try to extubate. They have given him steroids today to treat his airway, and they plan to run CPAP trials throughout the night and then attempt to extubate again in the morning.

More tomorrow...

In Christ,
Bill and Lisa

Friday, August 17, 2007

Friday night update & bronchoscopy results...

The bronchoscopy showed that there are three separate tiny issues (can't recall what each one is called) that taken one by one wouldn't really have caused the extubation failure. However, the ENT thinks that all added together, they may have contributed to it. They are treating Liam with steroids to try to heal his trachea and reduce some swelling and will try to extubate again in 24-48 hours. We are waiting to see when they will start CPAP trials again, which may be as soon as overnight tonight.

Hanging in there...
In Christ,
Bill and Lisa

Friday morning update...

Ok, so now all the docs have stopped saying, "This is not uncommon." Liam is scheduled for a bronchoscopy at noon today, which needs to be done in the operating room. That is where they put a tiny camera down his throat to examine his trachea and windpipe to see what's causing the airway to be narrow. It will be done by an ear, nose, and throat doc (ENT). The plan today is to do the bronchoscopy and get a diagnosis and treatment plan. No one is talking about extubating anytime until after this procedure is done and we know what (if anything) caused the problems on Wednesday, which makes perfect sense. The ENT's resident came in to have me sign the consent forms and said not to count on it happening at noon, so I'm going to wait to update the blog again until we have the report back from the ENT (unless something weird happens).

In Christ,
Lisa

Thursday, August 16, 2007

Thursday night update...

We will be glad to say goodbye to today! Lisa escaped to Target for a couple of hours tonight to find some cheap post-pregnancy clothes that actually fit so she doesn't have to keep doing laundry in the PCCU. We're told if you're doing laundry in the PCCU, it makes you real PCCU parents. ;) Bill is doing ok, but we're both tired and stressed.

We got news this evening that the CAT scan showed that Liam's trachea is narrow. That could account for the problems extubating him yesterday. The plan for tonight is to let him continue to rest, and the docs hope to get a 3D CAT scan tomorrow so they can diagnose whatever is going on with the trachea. It is possible that it's just swollen from all the tubes/trauma, etc. However, it's the closest we've been to an explanation so far. Since no one has said anything about brain problems, we're assuming that has been ruled out. We'll get that clarified tomorrow with the docs.

They have also sent a sample of secretions from Liam's mouth to the lab for analysis. There is a slight chance he may have an infection that is contributing to his problems. Those results won't be back for 24-48 hours. He doesn't have a fever, so if it's an infection, they are catching it really early, which is great.

Liam had an NG tube placed this afternoon and is now getting breast milk. YAHOO!! Finally, Lisa can do something for him that the docs can't do!!

We continue to hang in there and remain steadfast in our faith that all of this is bringing glory to God. Thank you for prayers, comments, calls, etc etc etc. We are getting all of your messages, even if we can't answer the phone or get back to you right away, and we greatly appreciate the support!

In Christ,
Bill and Lisa

Thursday afternoon update...

Rough day. Liam continues to be stable as long as he is on the vent, but they decided to get a CAT scan of his brain and chest to see if any "structural abnormalities" might account for the failed extubation yesterday. There is also a slight concern he might be developing an infection, so they sent some lab samples off this morning and we are waiting for that news. So, we are waiting and it is turning into a very long day.

Because he has been on the vent so long and they haven't been able to start bottle feedings, they placed an NG tube in his nose earlier that will allow them to start dripping breast milk into his tummy (well, actually, they will drop it right in to his intestine). We're thankful he'll start getting great nutrition and some immunity protection, too.

Please pray we are able to turn this corner very soon and can get back on a more direct road to recovery.

In Christ,
Bill and Lisa

Thursday morning update...

Liam is 7 days old today!!! :)

He had a good night, and he continues to be very stable on the vent. They have turned his vent setting down in the hopes they can start testing him later to see if they can extubate later today. This morning he is awake and alert and looking around the room a lot. He keeps looking at me with this confused look on his face, like "Do I know you from somewhere?" I think we're doing better with pain control now, since the nurses and I have learning the the signs he shows when he is uncomfortable.

Thanks for all your posts--I love reading them!

In Christ,
Lisa

Wednesday, August 15, 2007

Wednesday evening update...

Unfortunately, Liam didn't do so well on the C-Pap, so they had to put him back on the ventilator around 5 p.m. this afternoon. His first blood gas that they took after putting him on the vent again came back looking much better, so they want to give him a chance to rest on the vent a while and will start weaning him off tomorrow again. Once again, they say it is not uncommon for this to happen, so we're trying to keep a stiff upper lip and give Liam the time he needs to recover.

Please pray the second time is the charm and he is able to come off the vent for good tomorrow.

In Christ,
Bill and Lisa

Wednesday afternoon update...

Just wanted to pop on and share the good news that Liam was taken off the ventilator about 2 hours ago. They did it while I was at my doc appt getting staples out, but called me while Bill and I were at lunch to say Liam wasn't doing as well as they had hoped. Though he did fine on the C-Pap trials before they extubated him, he decided to be lazy and not breathe as well by himself once they extubated him. So, they have put him on the C-Pap as a step-down from the vent. The good news, though, is that he doesn't have a tube down his throat, and he no longer has a tube down his nose, either. He is much happier now than he was this morning.

I think this morning has been the hardest morning for me, because they had to bring him off the sedation to ensure he was ready to be extubated. However, when they did that he became more aware that there was a tube down his throat, and he just seemed to be wiggling around a lot and not at all happy to wake up to being on the vent (who would, though?). I was REALLY glad when they took him off the vent, even if he does have to use the C-Pap to remind him to breathe now and then. By the way, they say it's not at all uncommon to have to wean cardiac babies from a vent to the C-Pap, so it's nothing to be concerned about.

There is a small chance that if he doesn't continue to improve, they'll have to put him back on the vent. Please pray this doesn't happen.

In Christ,
Lisa

Wednesday morning update...

First, if you are looking for the great pics of Liam with his eyes open, this post will kick them off the front page of the blog. To find them, look over in the right column under the archives, and click on the "Liam and Mommy" link. That should take you right to them.

OK, now for the update. It's nearly 7 a.m. CST and Liam is awake and looking around. He is mainly breathing on his own, but is still on the vent. They did a chest X-ray around 5 a.m. and discovered he has some fluid on his lungs, so they continue to treat him with diuretics to get rid of that. He can't have fluid on his lungs when they extubate him. So, he will probably remain on the vent through the morning and early afternoon. Maybe we can get him off of it by this evening.

His nurse said not to worry--this is a normal thing that they see a lot post-surgery in cardiac babies (and no, having fluid on the lungs isn't the same as having pneumonia). He swelled up quite a bit yesterday afternoon, which is his body's immune system response to surgery, so they've already been treating him with diuretics. He looks much less puffy this morning, and she said since he's responded well to the diuretics so far, they expect that to continue. They were able to take his catheter out this morning (yahoo!), and when they let him try breathing on his own by putting him on a C-Pap overnight, he did great.

So, please continue to pray that he comes off the vent ASAP. I'll keep you posted!

In Christ,
Bill and Lisa

Tuesday, August 14, 2007

Surgery Day--update #2

Hi everybody! Liam continues to recover from his surgery, and he continues to be stable. We still haven't been able to extubate him, but they are weaning him from his ventilator, so the hope is that either they will extubate him overnight or they will do it first thing in the morning. The plan is that 4 hours after they take him off the ventilator, they will give him the first breast milk I pumped last week by bottle. His nurse tonight is the same nurse he had last night, and she said he had such a strong sucking reflex prior to surgery that they anticipate that there will be no problems transitioning him to the bottle and then eventually to the breast. This is music to my ears, as I'm already tired of pumping around the clock and would dearly love to be snuggling up to a hungry baby rather than a cold plastic pump, especially at 3 a.m.! ;)

Lisa will be with Liam at Vandy overnight since he hasn't been extubated, and we'll all breathe a huge sigh of relief when he is off the vent! I'll post again in the morning or early afternoon, as soon as time allows. I do have a doc appt tomorrow morning to get my surgery staples out, so that will give me a little less flexibility than I had today.

Continuing to ask for your unceasing prayers...
Bill and Lisa

Praise God!!!! Surgery is over and it went great!!!!!

We are absolutely THRILLED to announce that the coarctation surgery is behind us and Liam did beautifully!! Many, many, many thanks and praises to God for bringing him safely this far!!!!
Liam went down to the OR right on time at 7 this morning, and at 8:20 they called to say they had started the surgery itself (it takes a long time to get cardiac babies hooked up to all the lines and under anesthesia). At about 9:20, we got the call that the surgery was over and Dr. Bischell was closing and would be out in a minute to talk to us. He came out a little while later and said he was able to go in from the left and it all worked out as planned. Liam didn't even need a transfusion during the surgery! Dr. Bischell is hopeful that maybe we can remove Liam from the ventilator late this afternoon and possibly get him started on breast milk by mouth (but from a tube or bottle) yet tonight. He was back in PCCU about an hour later, and we were able to get in to see him around 11:30. He has tubes coming out of every hole in his body except his eyes and ears, so he's pretty pitiful to look at right now, but he is stable and doing well. His nurse rarely leaves her computer monitor and just looks from him to the screens and back to her monitor, but she has been very helpful to us in terms of answering questions.

It's now 2:30, and he continues to be stable. He hasn't opened his beautiful blue eyes yet, and at the moment they are trying to increase his blood pressure a little. He has started to swell a bit. All of this is very normal for a post-cardiac surgery newborn. Oh, and we did find out they had to give him a little blood while he was in the recovery room, but he didn't have a complete transfusion. Again, very normal.

So for now, we continue to watch and wait! Momma, Daddy, and Jami are all hanging in there and doing well. Please continue to pray!!! We aren't through the woods yet, but things continue to progress normally. The next big goal is to get him off the ventilator. Because being on the vent brings its own risks, we will all breath a HUGE sigh of relief when that is gone.

In Christ,
Bill and Lisa

P.S. Heather was kind enough to drive to Vandy yesterday and shoot some more pictures of Liam and his Momma--scroll down to see them!

Liam & Mommy

Here are some pictures of Liam and his mommy, taken Monday, Aug. 13, 2007 in the PCCU.






Monday, August 13, 2007

Info about Surgery on Tuesday, August 14

Yes, yes, we know. You've been checking the blog all day for this information and we haven't updated it. We didn't get to the cardiac surgeon until late today, so we're posting it as quickly as we could after eating, saying good night to Liam, and driving back home. We appreciate your patience, as today has been a very, very long day for us.

Dr. Bischell will be doing coarctation arch repair surgery on Liam at 7 a.m. His plan is to go in on Liam's left side and try to avoid an open heart procedure, but he might have to convert to an open heart approach during the surgery. The surgery should last around 3-4 hours. Our plan is to update the blog from the hospital tomorrow as quickly as possible. Liam was moved from the NICU to PCCU this a.m., which threw off our day, because Lisa ended up meeting with a new team of doctors and familiarizing herself with the new surroundings the better part of the day while we waited for Dr. Bischell to meet with us. He was moved to PCCU so the staff could work with him there today since that is the team that will work with him after the heart surgery.

Lisa was released from the hospital today and is doing well, but very tired. It was difficult to drive away from the hospital without a baby in the back seat, so it was a day with sad and difficult moments despite all of the good news we've been receiving.

Please pray that God will guide the docs and nurses tomorrow and bless them with an extra dose of wisdom as they care for Liam! More when we know more...

In Christ,
Bill and Lisa

Sunday, August 12, 2007

More news...

Hi everyone! I have found the business center in the NICU that they let families use, so now I can start posting again! Many thanks to Jami and Heather for updating the blog on Thursday and getting the pics up so fast!

First, a couple of corrections and clarifications:

1. Liam was acutally 19 inches long at birth, not 17.
2. They did end up finding 2 VSDs (holes in his heart). One, the largest, looked like it was in the process of closing, and Dr. Liske thinks the other hole will close, as well. They will continue to monitor them.
3. They are not concerned about the left ventricle, as was initially reported. It ended up measuring just inside the normal range.
4. The primary areas of concern are the coarctation of the aorta, which means his aorta is too narrow in one spot, and a bicuspid aortic valve. The only one that requires immediate attention is the coarctation.
5. There is a chance that Liam will still end up needing open-heart surgery. Dr. Liske is waiting to confer with the surgeon before they make a final decision, and there is a thought that it may end up being an open-heart surgery.

Updates:

1. It appears that they are making every effort to set up surgery with Dr. Bischell for this coming Tuesday. We are hopeful that it will be Dr. Bischell, as he is the HLHS surgeon who trained at Children's Hospital Boston, the leader in the nation in treating pediatric cardiology problems.
2. Liam continues to hold his own and is stable. The medication they are giving him to keep the duct open is making him quite sleepy, so he hasn't been very alert.
3. Have I mentioned what a BEAUTIFUL baby he is? :):):)
4. Some have been asking about Lisa's health and recovery. I'm doing great and have had a very easy recovery, all things considered. More pain than with my first C-section, but just cramping, not incision pain, so it's been easy to get over to see Liam. I'll be released from the hospital tomorrow.
5. Emotionally, the entire family is doing shockingly well. We attribute this to the many, many prayers being said on our behalf every day. We know God is giving us the strength to face what lies ahead.

Thank you, thank you, thank you for all the messages you've been posting, and for the phone calls and visits. It has helped us tremendously to know we have so much love and support.

Prayer requests for this week:

1. PRAISE for Liam's birth and the fantastic news that we are facing a less severe scenario than originally thought.
2. PRAISE for the wonderful docs and nurses at Vandy. We have been so pleased overall with the care we've received so far. In particular, Lisa's nurses deserve a huge pat on the back--they've been extraordinary.
2. PRAISE for all the friends and family that have been helping us so much. Extra special thank yous to Jami, Grandma, and Heather. Heather, the photos you've taken have been spectacular, and we are so thankful to you for sitting with Liam when we haven't been able to.
(Honestly, our list of PRAISES at this point could go on endlessly, so I think I'll just stop there!)
3. Please pray that Liam will not need open-heart surgery. If he does, that increases the chances of so many complications versus being able to go in from the left side to correct the coarctation.
4. Please pray that God will continue to guide and direct the doctors and treatment team members working with Liam.
5. Please pray that God will give Liam's entire family the strength, courage, and wisdom to face what lies ahead.

Keep praying! In Christ,
Bill and Lisa

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessolonians 5:16-18

Saturday, August 11, 2007

Pictures of Liam

Here are pictures of Liam that we knew you would want to see~
The first four are on Thursday, Liam's birthday, and the rest were taken Friday night.

Big sisters seeing Liam for the first time

Liam in the NICUJami with Liam; Nurses bustle around caring for Liam Liam holding Jami's finger
Dad & Jami with Liam
Liam squeezing Jami & Heather's fingers



Thursday, August 9, 2007

Liam has arrived! Results of Echo!

Liam was born at 10:46 a.m. He weighed 6lbs and 12oz and was 19 inches long. His initial apgar score was 4 and the second was 7. He had some difficulty getting started breathing, but is doing just fine now. His vital signs all look great, and so far the only thing that has been done is to give him the medication to keep his duct open.

The initial echo results were great! Dr. Liske will review the pictures and continue to monitor Liam's heart with further echos, but for now, here is what we know:

* Liam does have coarctation of the aorta and will need heart surgery early to middle of next week to correct the problem. It is the less severe coarctation, so we hope that open-heart surgery won't be needed.
*Liam does not have HLHS!!!!!!
*Liam does not have a VSD!!!!!
*The three areas of concern will be:
~A bicuspid aortic valve
~Small left ventricle
~Small subaortic area

These will be monitored over the next few weeks and months to see if additional surgeries are needed, but the docs are hopeful that these things will not require an immediate surgery, and perhaps can be tolerated over Liam's life.

Please keep praying, and we will post more as we can.
In Christ,
Bill & Lisa

Wednesday, August 8, 2007

C-Section tomorrow!!

Well, the time has finally arrived to welcome Liam to the world! Thank you so much for all the prayers! It's hard to believe that around 19 weeks ago we launched this blog and we have now had over 6000 hits. You can't imagine how grateful we are that we have so many people posting to us, e-mailing, calling, sending cards, and (most of all) praying for us!

Our family has survived the "limbo" time better than any of us ever expected. As counselors, both Bill and I know that the time before you find out exactly what you are dealing with is often the hardest time of all. At least after Liam has arrived, we will be working on a treatment plan with his cardiology team and the hospital.

We will update the blog as soon as we can tomorrow. We're hoping to update it once after he is born and another time after we get the echo results, which we are hoping to have back by tomorrow evening. However, we found out that Wifi access in the area where Lisa will be is spotty at best. Therefore, if the blog isn't updated until tomorrow night, don't assume the worst. It most likely means that we are simply experiencing technical difficulties (or that Lisa is drugged out of her mind on pain meds and Bill is busy bonding with his son in the NICU).

No matter what the future holds, we are confident that God will be glorified through Liam's life. Keep those prayers coming!!

In Christ,
Bill and Lisa

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. Selah. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. The LORD Almighty is with us; the God of Jacob is our fortress. Selah.

Psalm 46:1-7

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. For strength, guidance, and wisdom as we face treatment choices and decisions.
3. For God to guide the hands and minds of the docs and treatment teams working with Lisa and Liam this week.
4. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Tuesday, July 31, 2007

Tests, tests, and more tests!

Liam passed his non-stress test uneventfully on Friday, and he passed his biophysical profile again on Monday. We go back to the OB on Thursday for another non-stress test, but provided all continues to go well, we are still on track for an August 9 C-section. It is expected that he will pass all these tests with flying colors, because Dr. Liske said his heart problems don't present a problem until he is born.

Lisa is doing well, but is tired because she's not sleeping well at night. Her last day at work is Friday, August 3. Friends and co-workers at her workplace have donated as much sick time to her as the university will allow her to receive, and you can't even imagine how blessed we feel at this turn of events. We were stunned at the outpouring of support within a mere 24 hours of making our need known.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. PRAISE that Lisa's co-workers and friends have been so generous with their paid sick leave donations.
3. PRAISE for continued good health for Lisa during this pregnancy.
4. For complete healing for Liam during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

9 days and counting,
Bill and Lisa

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." Matthew 7:7-8

Wednesday, July 25, 2007

Posting a little late this week!

Sorry I missed the Tuesday update. I wanted to wait and post today. Our OB ordered a biophysical profile yesterday to check on Liam because of that increased level of amniotic fluid they found last week, so I thought I'd wait and post after that. Liam had 30 minutes to do several things (they checked muscle tone, practice breathing, movement, and amniotic fluid level). He scored a perfect score (8 out of 8) in 8 minutes. What a guy! And the amniotic fluid level was back down to normal yesterday, too.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. PRAISE that Liam cooperated and scored so well on his BPP!
3. PRAISE for continued good health for Lisa during this pregnancy.
4. For complete healing for Liam during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Take care,
Lisa

I have set the Lord always before me. Because He is at my right hand, I will not be shaken. Psalm 16:8
(I should note that this is the goal I'm shooting for, not where I am!)

Thursday, July 19, 2007

Updates--sorry it's been so long!

Hi everyone! Sorry we missed updating last Tuesday. Last week, Bill was in Honduras on a mission trip, and Lisa came down with a really weird virus that made it difficult to type (or do anything else that required moving a muscle or joint!). Thankfully, Bill is back and Lisa is well again. We delayed posting because we knew we were doing that gestational age dating ultrasound yesterday and wanted to share those results with you.

Yesterday Lisa was 35 weeks and 6 days. The ultrasound measurements indicated Lisa was 35 weeks and 6 days. It doesn't get more perfect than that! Liam does have a head measurement in the 75-90th percentile range, but they don't get concerned that something is wrong with a baby's brain or head until the measurement falls over the 90th percentile. All other measurements she could get were right on target. Lisa has slightly more amniotic fluid than normal, but they said that is normal given the congenital heart defects, and it's so slightly elevated that it probably won't present any problems. It was ironic that she couldn't get heart measurements because of the way he was positioned. He was face down, so we didn't get a peek at his face, either, though she pointed out that there is hair growing off the back of his head. So, we guess he won't be born bald. ;) The routine OB visit went fine yesterday, as well, so we are still on target for an August 9 c-section date.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems.
2. PRAISE that Liam cooperated and was in a good position for the ultrasound so the proper measurements could be taken.
3. PRAISE for continued good health for Lisa during this pregnancy.
4. For complete healing for Liam during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Take care,
Bill and Lisa

Tuesday, July 3, 2007

Weekly update

First of all, we want to send out a huge thank you to everyone who has called, posted a comment to the blog, or e-mailed with their prayers and support. You have no idea how much easier that makes it for us!

At the appointment last week with Dr. Liske, he came up with a gestational age that was 36 weeks rather than 33 weeks. He wasn't terribly concerned about it, in part because it is hard to determine a gestational age this late in a pregnancy, but wants to make sure we are dating this baby as accurately as possible. So, on July 18, we're doing an ultrasound to help clear up the confusion. Dr. Liske was only able to get a head measurement, and they usually use several body measurements when they determine gestational age. I am measuring right on target at the OB's office each visit, so I'm not overly concerned about this, but clearly if we're comparing Liam's heart measurements to the wrong chart, we need to know that. It would make a difference in terms of whether or not he has HLHS since he's borderline for it right now.

I need to clarify something from last Thursday's post: Shone's Syndrome is used to describe a series of problems with the LEFT side of a baby's heart. I didn't specify that it only affects the left side last week. A baby with Shone's doesn't face as severe a situation as a baby with HLHS, but the problems remain serious and similar in terms of the structures within the heart that are affected.

This week's prayer requests:

1. PRAISE that we are having Liam at a time in medicine when so much is known about how to treat his problems. Just a scant twenty years ago, Liam would have been released from the hospital with everyone thinking he was a healthy newborn and would have died within the first week or two of life, probably termed death by SIDS.
2. PRAISE that we are blessed with Dr. Spetalnick and Dr. Liske, who work well together as a team and are even willing to communicate between appointments via phone or e-mail to answer our 10,000 annoying questions.
3. PRAISE that Liam cooperated and was in a good position for Dr. Liske to see his heart clearly.
4. For complete healing for our son during this pregnancy (we continue to ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

To our Maple Hill church family: You have blessed us tremendously with your constant outpouring of support and offers of help in the coming months. Words simply do not exist that would adequately allow us to express our thanks to each of you.

Lisa

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

Thursday, June 28, 2007

2nd Fetal Heart Echocardiogram Results

Whew! What a LONG day! I'm going to do my best to translate what the doc said, but it was hard to follow him at times! We were glad when he noted right off the bat that Liam was in the best possible position for the echo, and he was asleep, so he was able to get really good pictures of the most important things. The first thing he said when he came back into the room after interpreting the echo results was that he was encouraged.

If you'll recall the last echo showed Liam had borderline HLHS with small measurements on the mitral valve, aortic valve, a possible narrowing of the aorta (which might lead to coarctation of the aorta), and a possible VSD (hole in his heart). Today we were looking to see if any of these problems had corrected themselves. The primary thing the cardiologist wanted to see was that the left side of Liam's heart had continued to grow and develop.

So, the first thing he noted was that the left side of the heart still has both chambers (so we still have a 4-chamber heart). This is good, because if it hadn't grown or if one or both chambers had closed, we would have a full-blown case of HLHS. We are still looking at borderline HLHS, but now we've been given only a 30% chance that Liam will have full-blown HLHS at birth. The left side of his heart is still smaller than the right side, but is functioning.

His mitral valve is currently measuring 7 mm, and at birth, they want it to be at least 8mm. His aortic valve is currently measuring 4 mm, and at birth, they want it to be at least 4.5-5.0 mm. He said it is entirely possible that they can achieve that kind of growth over the next 6 weeks. This places Liam at the 5th percentile for both valves. That isn't ideal, but if they continue to grow, they might be functional at birth. The leaflets on his aortic valve are opening and closing normally, which is a good sign. IF these valves are functioning and measuring within acceptable limits at birth, the cardiologist will check them periodically to ensure they are functioning as Liam gets older. If they fail, they will need to be replaced at some point.

On to the aorta: We are most likely looking at a coarctation of the aorta (70% chance), and this would have to be fixed surgically within the first week of life. The best case scenario would be that they would be able to go in from Liam's side to fix the aorta and not have to put him on a bypass machine. If it's a more severe coarctation, they will have to do open heart surgery. We won't know until he's born how bad the problem is, because you can't see part of the aorta that might be a problem on a fetal heart echo. You have to wait and do an echo a few hours after he's born to get good pictures of that area of his heart.

The VSD (hole in his heart) has disappeared. At the last echo, he couldn't tell if there was a VSD or not. Today, he couldn't see any. He did say this only rules out a large VSD--a small or medium VSD might not be visible in a fetal heart echo.

Liam's heart problems now resemble a condition known as Shone's Syndrome much more than HLHS. That's a term used when a baby's heart is showing multiple issues but doesn't fit criteria for HLHS or another congenital heart defect. We won't know the extent of what Liam will need until he is born, but we do know we are looking at some type of heart surgery in the first week of his life (unless God intercedes and performs a miracle in the next 6 weeks, of course!).

The plan at this point is that Lisa will get to spend a few minutes cuddling with Liam in the OR right after the C-section, and then he will go with Bill and Dr. Liske's cardiology team to the NICU at VUMC. As soon as he's stable, he will be moved to the Vanderbilt Children's Hospital NICU, where he will have various tests to determine his exact diagnosis. Lisa will continue to recover at VUMC. Lisa is NOT happy about learning this, but it can't be helped. This means that Lisa will not see Liam for probably 24 hours after he leaves the OR. Granted, the two hospitals are connected by a walkway, but we joked that a golf cart was really called for to get from Lisa's room to the NICU at VCH.

Although we realize that it was necessary to tour the NICU to prepare ourselves for what lies ahead, it was a very difficult tour to take for both Bill and Lisa. We were actually doing pretty good after the echo appointment until we toured the NICU and all the areas we would be moving to and from and between during the first couple of weeks this baby is alive. Frankly, that was just depressing and overwhelming.

We are doing ok at the moment. We will post more updates as we remember more information. It's a lot to absorb and then try to explain to others, but hopefully we've made it as clear to you as it is to us. Please keep the prayers coming--we know God is providing the strength we need to both of us as we deal with each "next step" in this process.

Bill and Lisa

Wednesday, June 27, 2007

Tomorrow is our fetal echo...

We've been waiting since mid-April for tomorrow to come, and now I don't know if I'm looking forward to it or dreading it. I guess both. We are also supposed to be getting a tour of the NICU, which I know for sure I'm dreading! We are hoping and praying that God has healed Liam's heart. We will post an update to the blog as soon as we are able to do so tomorrow!

Bill's dad is recovering at home and is doing much better now. It appears as though the heart attack caused very little (if any) damage, and there were no blockages that required surgery. Thanks to all of you who expressed concern and prayed for him!

Updated prayer request for this week:

1. PRAISE that God has given us the technology to see what Liam's heart looks like.
2. PRAISE that God has given us the strength to make it this far.
3. PRAISE that Lisa continues to have good maternal health during this pregnancy.
4. PRAISE that Bill's father is feeling better and recovering at home.
5. That Liam will cooperate and be in a good position so the doctor can see his heart clearly.
6. That God will give us the strength to hear the update the doctor has to share with us.

Once again, we find ourselves overwhelmed by the number of people who are praying for us. Thank you all so much!
Bill and Lisa

"For the Lord is good and His love endures forever; His faithfulness continues through all generations." - Psalm 100:5

Wednesday, June 20, 2007

We have a C-Section date!

Wow! What happy news! Liam will be here August 9. It's so nice to have an official date when we know we will KNOW exactly what we're facing. I guess that's one advantage to knowing in advance you'll have a C-section: There's reduced worry about going into labor at an inconvenient time (although clearly that could still happen) and you can prepare in advance for your baby's arrival.

It has been an extra-crazy week here so far, which is why I didn't post an update yesterday. Those of you who are praying for us, please add Bill's dad to the list. He was admitted to the hospital on Friday night with pneumonia and has since had a heart attack and congestive heart failure. He seemed to be doing better yesterday and we are hoping he was moved out of ICU to a private room last night. I'm hoping to go check on him in a little while. He will be having more tests and procedures tomorrow to determine how much damage the heart attack did to his heart.

Next week is a big week for us: We will be having the 34 week fetal echocardiogram done at the pediatric cardiology lab on June 28. We are really looking forward to hearing how Liam's little heart is developing, and we are hoping and praying for good results!

This week's prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that Bill's dad appears to be stablizing and recovering.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks,
Bill and Lisa

Tuesday, June 12, 2007

Celebrating our anniversary today!

No new or exciting news in the Jelly Bean department, and today we are taking time out to celebrate our 8th wedding anniversary. Hard to believe it's been 8 years!

We will hold over the same prayer requests from last week to today:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that we received the 2nd opinion report so quickly and that it looks more hopeful.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks so much for your prayers,
Bill and Lisa

"My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." Psalm 62:1-2

Wednesday, June 6, 2007

This week's update...

There are only a couple of new things this week. We did receive the report Dr. Gomez-Fifer at University of Michigan sent to Dr. Liske after reviewing his fetal heart echo and report. We haven't yet consulted with her (I need to schedule a time and just haven't done so yet), so most of the report was over our heads. We were hopeful that it APPEARS (based on our EXTREMELY limited knowledge) that her measurements were slightly better than Dr. Liske's, so that was encouraging.

Our insurance company denied our request to pay for the phone consult (probably a couple of hundred dollars at the most), which is ironic since they would be willing to pay for a trip to MI, for Dr. Gomez-Fifer to do another fetal heart echo, and for an office visit with her (probably a few thousand dollars). What can I say? Insurance companies are funny. I'll call our case manager and talk to her, but I think it's a futile effort because of the way our policy is written.

This week's prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that we received the 2nd opinion report so quickly and that it looks more hopeful.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks so much for your comments! They are so helpful and nice to read!
Bill and Lisa

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Proverbs 3:5-6

Wednesday, May 30, 2007

OB appointment this morning

I'm sorry I forgot to update the blog yesterday--the holiday weekend threw me off and I was thinking it was Monday. Oops!

I guess it was just as well, because I had an OB appointment this morning and now I can share the latest news. Liam's heart rate was fine this morning, and his Mama is measuring on target for where we are in the pregnancy (which will be 29 weeks this Thursday). We are looking at a C-section date somewhere around August 9 but the actual date is still up in the air.

Here are the updated prayer requests for the week. If we could ask you to pay special attention to #6, that would be great! Lisa is not sleeping well these days, which tends to mess up Bill's sleep, as well.

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that Lisa's gestational diabetes test results were normal.
3. PRAISE that we have a 2nd opinion doc now!
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks,
Lisa

Thursday, May 24, 2007

We have a second opinion doc arranged!

At the recommendation of our insurance company case manager (who is turning out to be a God-send!), I asked Dr. Liske to step in and try to secure a second opinion doctor for us. Within the space of an afternoon, he had accomplished what I've been trying to do for over a week. Too bad no one publishes a rule book for how to navigate the medical world! If I had known he could do that so fast, I'd have asked him to take care of it when I talked to him two weeks ago! ;) Oh well. Dr. Gomez-Fifer at University of Michigan will be working with us on a second opinion. So, you can cross that one off as yet another answered prayer and I'll keep you posted regarding what she tells us!

Lisa

Wednesday, May 23, 2007

"A rose by any other name..."

We have chosen a name (FINALLY!). I think we'll reserve the right to change this if he doesn't "look" like his name when he's born, but we have decided to name our son William Evan. We'll call him Liam for short (pronounced like the actor Liam Neeson's name, but we AREN'T naming him after the actor).

Hopefully that'll help with the prayers at church, because it's difficult to watch grown men praying for "Jelly Bean," though everyone has been great for doing that! ;)

Bill and Lisa

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Tuesday, May 22, 2007

Updates for Tuesday!

We're still waiting to hear back from our second opinion docs. I will give them until tomorrow and then I'll start pestering them until I get a response. Jelly Bean seems to be doing well--he's moving around and kicking me a lot. If he's healthy enough to play soccer, all indications are that he'll be really good at it!

I'm going to leave our prayer requests for the next week the same as the ones from last week. Thanks so much again for your prayers!

Tuesday, May 15, 2007

Updated prayer request for the week...

Nothing new to report this week, but I wanted to post the prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. For one of the doctors (or more) to agree to give us a second opinion while consulting with us on the phone.
3. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
4. For strength, guidance, and wisdom as we face treatment choices and decisions.
5. For good physical health and restful sleep for Bill and Lisa. This has been an ongoing problem, especially for Lisa.
6. For God to show us the way financially so we can provide the best medical care for our son.
7. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Tuesday, May 8, 2007

Contacting doctors for second opinions this week...

As promised, I'm updating on Tuesday! This week is off to a busy start, but I have moved beyond my disappointment about changing OBs and am focusing on other things. Like potty training our 2 year old. ;) It's going to be a long week at our house! To borrow a bit from Robert Frost:

But I have promises to keep,
And loads of laundry before I sleep,
And loads of laundry before I sleep.

Now you know why I became a counselor and not a poet.

Anyway, this week we will be contacting docs to line up a second opinion, so we hope and pray that one of the doctors will agree to play nicely with Dr. Liske and use his pictures. We don't want to have to travel north if we don't have to!

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. An extra-special PRAISE for the members of our church, who made us a prayer book. Lisa has read it many times already, and it might well be worn out by the end of the pregnancy at this rate!
3. PRAISE for the MOBs group at church. MOBs stands for "Moms on Bended Knees." They have been praying for Jelly Bean and our family during their meetings, and we are so very grateful.
4. For one of the doctors (or more) to agree to give us a second opinion while consulting with us on the phone.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa. This has been an ongoing problem, especially for Lisa.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Lisa

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Thursday, May 3, 2007

I met the new OB yesterday and an insurance update

First, the positive things: Jelly Bean's heartbeat sounded great yesterday!! The new OB is moving forward with scheduling the C-section (it sure will be nice to have an actual date to look forward to!). The pediatric cardiologist and my OB are trying to decide whether to deliver me at 39 or 40 weeks, since each has a different opinion about what is best. I'll be 39 weeks on August 9 and 40 weeks on August 16, so I assume the C-section will take place sometime in that 7 day window. In addition, we did get approval back from our insurance company on all the doctors and hospitals we are considering for a second opinion, which is fantastic news!

All went fine yesterday, but I was really struggling (and continue to struggle) with having to give up my OB and change to a new one. Medically, I know I'm where I should be, but the new hospital is so large and the new OB's practice is so different that the change is just incredibly overwhelming. I feel pretty stupid for being upset over a doctor/hospital change. It seems a silly thing to worry over in the face of so many other bigger things, but for whatever reason, that's what is most on my mind right now. If you would, please offer some extra prayers this week for me to find peace with this transition and to be able to focus on the blessings we're experiencing on this journey rather than the worries and problems.

Thanks,
Lisa

Tuesday, May 1, 2007

New OB and Insurance Update

This morning I submitted the names of the pediatric cardiologists that have been recommended to us for a second opinion to our insurance case manager, so now we are waiting to see if she'll approve any of them. I had a conversation with her last Thursday and she kept encouraging us to "stay local" for a second opinion. I tried to explain that "staying local" wasn't likely to be an option for us because of the seriousness of this particular problem, but wasn't sure she was getting it. I was hoping this is because she is actually a high-risk pregnancy case manager and clearly had limited information about congenital heart defects. She had said she would do some research on HLHS and get back to us, and today when I spoke to her, the name she was able to come up with was a pediatric cardiologist in Philadelphia, so she's off the "you should consider staying local" kick. That means Cigna is more likely to approve some of the ped cards we submitted to them. If they don't, we can check into using the doc in Philadelphia.

In other news, I meet with our new OB tomorrow for an initial appointment. I also have the routine gestational diabetes test tomorrow, so hopefully that will come back normal. Jelly Bean seems to be doing well, if I can use how much he kicks me as a measure of how he's doing. Since he has used me as a soccer ball all week on a regular basis, I think he's doing just great this week!

Some of our friends who are involved in mid-week Bible studies or prayer groups have requested that we pick a specific day to post an updated prayer list. So, I will start posting the list on Tuesdays. Here is the one for this week, and we thank you so much for your ongoing prayers! You have no idea how much it means to us to know so many are praying for us!

1. PRAISE for the help from the insurance case manager.
2. PRAISE for the discovery that both Bill and Lisa have a small life insurance policy through work on each dependent that kicks in immediately upon the birth of any baby, healthy or otherwise. This eases any niggling worries about funeral costs if Jelly Bean doesn't make it.
3. PRAISE for supportive people who call and e-mail "just to check in" and send cards that make us smile.
4. For Lisa to have a successful first visit with her new OB tomorrow and for good results on the gestational diabetes test.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Lisa

Tuesday, April 24, 2007

Insurance Company Call

I'm not sure where I summoned the energy or courage to do this, but I was struck with the sudden desire to get the phone call to our insurance company over with today so we could start the ball rolling on getting a case manager assigned to our case.

The two people I talked to were very helpful and they said someone will call back in the next 2 days for more information so they can get a case manager assigned. I am so glad that first phone call is out of the way! Having fought for almost two years with a former insurance company to pay claims that it was clearly responsible for in the past, I find it difficult to imagine navigating "the system" all over again. I am reminding myself that ultimately, the former insurance company did finally pay all they owed--it was just quite a journey to get them to do so! Hopefully things will be different with the company we're with now.

Lisa

Be strong and take heart, all you who hope in the Lord. -Psalm 31:24

Friday, April 20, 2007

Sorry it's been so long since I posted!

I've had lots of e-mails and queries about how we're doing this week. As many of you are already aware, I work in a university counseling center as a counselor. Our situation with JB has (obviously) continued to be at the forefront of our minds this week, but with the Virginia Tech shootings, it's a little hard to be overly focused on our own situation. Our hearts go out to all the VT students, staff, faculty, and parents who are dealing with this tragedy first-hand: You are all in my heart and in my prayers this week.

As for things with JB, we're somewhat in a holding pattern until the end of June when we see the cardiologist again. Because my work load increased dramatically this week, calling the insurance company and doing some "detail work" had to be put off until next week, so I don't have much news. I did meet with director of our HR department late last week and was heartened by the caring support that was offered. It appears as though we have resources we weren't even aware of, which is a tremendous blessing. The HR director pointed out that we have the best insurance plan we could have given the circumstances. We thank God that He guided us to make the choice we did.

With my old OB's assistance, I was also able to set a first appointment with the doctor who will be my new OB at Vandy. I think I mentioned below that my favorite OB/GYN in the entire world, Dr. Donna Crowe, doen't have privileges at Vandy, so we have to switch. Losing the ability to work with her has been really hard on me, as she is fantastic. There are still a few kinks to work out with the transfer to the new OB, so please pray that situation works itself out well. Another piece of good news is that I don't need to continue to see a perinatologist since the problem is with the baby's health and not with my health. That's good because it's hard to be off work twice a month to see two doctors. It's REALLY good because all the time off I take now counts against my paid maternity leave from work later, so I have to be careful about how much time I take--two doc appts every month would really have eaten into my paid time off.

Some have asked for updated prayer requests, so here you go--some things to be praying about for the next week:

1. PRAISE for the help from Dr. Crowe and Dr. Liske in finding a new OB and making things easier for Lisa.
2. PRAISE for God's provision of good insurance.
3. PRAISE for a good benefits at Lisa's workplace (and for that matter, at Bill's job, too!).
4. PRAISE for supportive people who call and e-mail "just to check in" and send cards that make us smile.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

I know those last 5 haven't changed since the beginning of all of this, but those will probably remain on our list for quite some time to come.

I hope everyone has a peaceful weekend!

Lisa

Friday, April 13, 2007

A Very Public Thank You to Two Special Moms!

I have been so blessed to connect with two very special moms over the course of the last week. They have provided so much support via e-mail and have been kind enough to describe our situation on their children's blog sites and ask for prayers for us. I want to take this oppportunity to publicly thank them for taking time out of their very busy lives to support me!

The first is Kelly, Baby Max's mother. You can read more about Max at http://julian-family.blogspot.com/. Kelly is one of the most inspiring Christians I have ever met (though technically, I haven't even officially met her in person yet!). Her parents attend the same church we do, and knowing them, I'm not surprised that Kelly is a woman of great faith. I have followed Max's journey since last summer or early fall (not sure exactly when), shortly after he was born. I'm not going to go into details about Max, because I really want you to take the time to read her blog in its entirety. His family's faith will be a blessing to you if you will take the time to read it.

The second mom is Faith, Baby Gavin's mother. You can read more about Gavin at http://gavinparker.blogspot.com/. Faith is also a strong Christian woman! Gavin has HLHS and has gone through two of the three major heart surgeries he faces. I also encourage you to read her blog. Gavin is adorable and I'm sure his courage and smiles speak to the reason health professionals continue to develop and perfect HLHS treatment techniques!

Please pray for both of these babies and their families. They need many of the same prayers we do, in terms of wisdom and strength to face each new day. When I get this blog site figured out completely, I'll make sure I provide a link to their blogs so you can check in on them more easily!

Lisa (a.k.a. Jelly Bean's Mama)

Thursday, April 12, 2007

Pediatric Cardiologist Appointment Update

We're so happy and blessed to have good news to report from our Vanderbilt pediatric cardiology appt this morning! Your prayers are working!

We spent about 2 hours with Dr. Liske at Vandy this a.m. The first 45 minutes he took pictures. I have to say it was all black, white, and fuzzy to us with the occasional blue and red thrown in, so it boggles the mind how he could see anything. Anyway, then he left to compare our baby's heart measurements to normal babies' measurements and then came back in to chat.

He said Jelly Bean doesn't fit criteria for HLHS at this point. He said there isn't really a name for his condition right now, but he'll refer to it as Borderline HLHS. Jelly Bean has 4 chambers and he has all structures forming in his heart, they just aren't either big enough or complete yet on the left. The chambers and structures on the left side of his heart that aren't big enough yet still fall in the low end of healthy heart measurements. For example, his aortic valve is in the 5th percentile, while his mitral valve is in the 10th percentile. The measurements on the left side of his heart are small compared to the measurements on the right side of his heart. One of two things will happen over the rest of the pg: Either he will develop a full-blown case of HLHS or he will begin to develop a healthier heart.

Let's take the more optimistic scenario first: If his heart begins to grow into a more healthy one, he will likely still have some congential heart defects that need to be fixed either at birth or shortly thereafter. It is highly unlikely his heart will be normal at birth. At this point, we know he is likely to have a Coarctation of the Aorta. This is a minor heart defect (compared to HLHS, anyway) that requires surgery, but not open heart surgery, and can be fixed soon after birth. He also appears to have a hole in his bottom left chamber, referred to as a Ventricular Septal Defect, but Dr. Liske had trouble getting a clear picture of that area, so he couldn't be sure. If the hole is there, it might close on its own as Jelly Bean grows. If not, it will eventually require surgery. There are also problems with his aortic valve and his mitral valve; those problems could resolve during the pg or, if not, they will need to be fixed through heart surgeries.

Worst case scenario, Jelly Bean could develop full-blown HLHS. We discussed treatment options, all of which can be done at Vandy. Heart transplant is an option that we could do at Vandy, too, though we didn't focus on that. We focused on the 3-stage treatment. Accroding to Dr. Liske, Vandy currently has high success rates, right up there with Boston Children's Hospital. The two hospitals that have higher success rates right now (and only by a couple of percentage points) are Univ of Michigan and the children's hospital in Milwuakee. Dr. Liske trained at the University of Michigan and the other cardiologist, Dr. Bichell, who would be on our treatment team trained at Boston Children's. In short, we appear to have excellent treatment options at Vandy, which is such a blessing that we can hardly absorb it. To be able to at least consider staying "in our own back yard" for treatment is so stress-relieving that we are overjoyed.

All that aside, the full-blown HLHS treatment scenario is frightening to any parent. We've encountered many success stories and many tragedies when talking to HLHS parents and reading about HLHS on the internet over the past week. While optimistic and encouraging, Dr. Liske said that the treatment outcomes vary widely depending on the complications encountered as HLHS children go through each surgery. He said they would support whatever decision we reach regarding treatment of HLHS and will offer all the advice, medical information, and comfort we need while we learn more about HLHS and make decisions about Jelly Bean's treatment.

We will see him again at 34 weeks (at the end of June) for more tests to see if we can get a better idea of how Jelly Bean's heart is developing. We won't know more until then, and we may not have a true picture of what JB's heart is like until he is born. So now we watch, wait, seek second opinions, plan, and just move forward while praying for a strong, healthy
heart to develop. The goal is to make it to August 16 without Lisa going into labor. She will deliver via a planned C-section. This was actually the plan even before we were aware of Jelly Bean's heart problems.

We continue to URGENTLY need your prayers, in fact now more than ever, as we enter this period of waiting. For now, we are thrilled to even have a CHANCE at fewer problems than HLHS involves. We believe God is answering our prayers even as we speak. Most of all, we remain steadfastly confident in God's promise to give us the strength we need to face anything life throws at us. Please, continue to pray, pray, pray!!

Updated Prayer Requests:

1. PRAISE that Jelly Bean does not have full-blown HLHS!
2. PRAISE that we can consider treatment at Vanderbilt Children's Hospital.
3. PRAISE that we live in a day and time when so many options are available for treating heart problems.
4. PRAISE that God answered so many prayers for a fast appointment at VCH. Our initial appt was set for 4/19, but they called on 4/11 and offered us a 4/12 appt due to a cancellation on Dr. Liske's schedule.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.

7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Brothers, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy. James 5:10-11