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

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

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

In Christ,
Bill and Lisa

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 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 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 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 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 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 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 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 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

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.

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

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

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

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

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.