One Week On

Liam had his surgical follow up yesterday with Dr. Jonas' team. They ran an EKG, blood tests and took a chest XRay. All tests were very positive which was music to our ears. What's more, Liam's steri strips were removed from his incision which is healing very nicely. One week on it is nice to continue the streak of doctor's visits resulting in positive news. It seems that right from birth, we heard unexpected news from doctors. First there was the diagnosis of Trisomy 21. Then there was the congenital heart defect. Then there was the congestive heart failure that was a result of the heart defect. While the cardiologists told us that progressing deeper and deeper into congestive heart failure was actual beneficial for Liam and that children who were in CHF fared better after surgery, it was still a tough pill to swallow.

Then came surgery. Surgery was flawless and quick. Recovery progressed without hickups. As you all read, tubes were removed one by one, but nothing was reinserted. Then, after extubation Liam was discharged from the ICU within two days, then from the hospital in two days more. One week on from his return home, things are looking up. Lauren and I are finally beginning to expect that the doctors will give us favorable news about our son - but just barely. We are very happy that he is doing well, sucking down bottles like a champ, and doing all the things that two month-old babies do. We look forward to having more good news to report in the coming weeks as Liam goes to more follow-up appointments.

Home at Last!!

We had a very efficient discharge this morning and were home by 2 pm. We had a small family coming home celebration with Ethan's parents and Lauren's mother who is in town to help us out with things; it is always a blessing to have her staying with us. Caroline is ecstatic that her little brother is finally home, but to her chagrin Liam has been sleeping most of the afternoon. Tonight will be an early night for all of us as we come down from the past two weeks. A few pictures from the day are below.

Liam is ready to leave the hospital in his car seat. The wink shows his attitude toward the past two weeks - "I got this."

Ethan's parents had an ice cream cake waiting for Liam when they got home. Spelling and capitalizatoin are not prerequisites for working at Baskin Robbins, but the cake sure is delicious!

In only a few short days since being taken off of sedation, we have noticed a stark increase in Liam's alertness. We had heard that this would be the case, but witnessing the difference is amazing. Here he is back in his bouncer seat once again.

Finally, our first family portrait as a family since Liam returned home. With te exception of Caroline, we're all looking a bit tired today.

We really appreciate all of you following our blog and sharing your well wishes and prayers for Liam's successful surgery. Knowing that we had so many people out there who were pulling for our little guy made us feel a little bit better about sending Liam into such a major surgery. We also want to thank everyone at Childrens National Medical Center in DC. The nursing staff made us feel as comfortable as one can feel in such a situation, particulary those nurses in the CICU who held constant vigil over Liam while he recovered. The cardiology team at Childrens was great also. Each played a vital role in getting Liam strong enough for surgery. Finally, we give a special thanks to the surgical team led by Dr. Richard Jonas. It does give you some confidence and comfort knowing that you have one of the premiere pediatric cardiology surgeons in the world taking care of your son in the operating room. He saved our son's life and we are forever in debt to him.

We are going to be posting to this blog less frequently now that we are home and we try to get back to a normal routine. We will keep you all updated on how Liam progresses over the coming months as he goes to follow up appointments with the surgeon and cardiology.

Tomorrow Liam will be two months old. What we have learned from him and been through with him already has been incredible to say the least. We are over the moon to know that now we will have many years ahead of us with both of our children.

It's Official!! We're Outta Here!

We were just notified officially that we are being discharged today! The orders are being drafted, the nurses will be coming to talk with us about who knows what, and when Liam's prescriptions arrive we are blowing this taco stand! We'll post pictures of Liam's second homecoming later this afternoon! Cold beers in the fridge await!

Liam's Discharge Checklist

- Remove precautionary pacemaker wires - check
- Remove sutures from chest tube -check
- Stay off supplemental oxygen - check
- Order prescriptions for home - check
- Pack Liam's bag - check
- Pack mom's and dad's bags - check
- Celebratory libations at home for mom and dad - check

Liam has been cleared to go home tomorrow by Dr. Jonas!! All we need to do is push the staff to get us out of here! We'll schedule Liam's coming out party soon so that we can all celebrate!

No Oxygen!!

As of 3 am this morning, Liam is breathing room air! No more supplemental oxygen! The process started early again this morning with a chest x-ray, blood test, and the usual wellness check. All of that started at 6 am. Now that Liam is getting the junk in his lungs loose, he is having some trouble taking his bottles. The gunk in the back of his throat makes it hard for him to swallow, and he seems to be clearing his throat constantly. Obviously babies don't know to grunt to clear their throats, so they just try to swallow it. What a pain. He also had three nice poops last night, so our constipation issues have resolved themselves. All they have to do is remove the pacemaker wires that were attached to his heart during surgery as a precautionary measure to counter any arythmias that might have occurred, and one IV and his invasive medical equipment will all have been removed! Our little man has been awake and alert this morning and moving like crazy. I think he is exercising his repaired heart. Hopefully this afternoon we'll be able to post some better information about when Liam may be discharged. Friday would be a great day; it will be his two-month birthday.

First Day off the CICU

Liam's first day on the floor was a busy one. Poor Lauren didn't get much sleep last night because she was paired up with a baby whose monitors kept alarming...all night long. She didn't get much sleep at all. Then, at 6 am the EKG tech came. Then respiratory therapy came to help Liam get the last bits of fluid out of his lungs. Then the echo tech came. Then...well you get the idea. From 6 am until Noon Lauren had someone in her room seemingly at all times doing something to Liam. When they would leave, Lauren was left to the sound of the neighbor's alarm.Things are looking up tonight, though. Because we are parents who stay with their child at night, we were relocated to a single. 

I am happy to finally be able to write that there is not much to report tonight. Our only issue today has been constipation. The nurses all say that this is normal given all the drugs, sedation, and anesthesia that he has been under for so many days. He's working hard at changing this situation though. He grunts and groans and his head turns red, but so far no luck. Hopefully we get this all sorted out soon so that he will take bottles again.

Lauren and I are thankful that we are finally starting to worry about Liam as we worried about Caroline when she was a newborn. We don't have the fear of heart surgery looming over us, and our son doesn't wear himself out drinking a 2 ounce bottle. We finally have a kid who is growing - he's up to 9 lbs 4 oz as of last check - more than one pound heavier than he was 10 days ago! He didn't gain that much in his first eight weeks! Most of all, we are more relaxed now. We are closer to going home now.

We're Free from the ICU!!

The positive is that Liam has been moved off of the CICU!! The negative is that we are not in a single room like we were our rirst time in the Heart and Kidney Unit (HKU), but we'll take it! Liam is slowly being weaned off of oxygen. They gave him a shot at no oxygen and his oxygen saturation dropped too low for their liking. However, he is now only on .5 liters per minute flow which is half of where he was twelve hours ago - excellent progress. Once he can breathe room air only, he can come home. Because Liam was in congestive heart failure for about five weeks, he still has some stubborn fluid in his lungs. I am reminded of the Mucinex commercials on TV with the portly fellow below at right. He will go through some respiratory therapy this week to loosen up this fluid so that he can cough it up. The doctors fully expect for Liam to be home by the weekend! Keep your fingers crossed that he can sleep at home this weekend!

Back to the Basics

So Liam had the central line into his heart removed by the surgeons this afternoon. He also had the line into his femoral artery removed as well! This means that, with the exception of some oxygen in his nose, Liam is back to the basic EKG and oxygen saturation monitors! The only "tube" Liam has in his body is an IV in his left hand. Liam's bedside monitor at one point had eight metrics being monitored. It is nice to also look at his bedside monitor and see only his heart rate, oxygen saturation, and respiratory rate being monitored - the basics.

It is so relaxing to feed Liam now and see him finally enjoying his bottles rather than suffering through them like it was a personal challenge event. He is 100% ready for "the floor" (see previous post). After he is there (we're still waiting for relocation), he needs only to be able to breathe without oxygen for 24 hours in order to be discharged. We are really close to going home, and it feels great!

Last Day in the CICU??

Noon today will be the fourth day in the CICU following surgery. The doctor this morning said that Liam is ready to move to the Heart and Kidney Unit (aka "the floor"), but that we need to make sure they have a bed for him. Keep your fingers crossed! Either way, Liam is doing very well and whether he is in the CICU or on the floor, his recovery is excellent. During rounds this morning, the cardiologist described him as their "rock start baby from yesterday."

As part of this process, the doctors also will be removing the line that feeds medicine directly into his heart, and the line in his femoral artery from which the do blood tests. After these two lines are removed, Liam will have only one peripheral IV left! He no longer needs his dopamine drip - the medicine that helped his heart and blood pressure stay stable - so the only drug he is still getting is Tylenol. Thankfully they have switched from suppositories to the oral kind. Our little rock star is well on his way to going home!!

Feeding and Holding Liam Again

We got to feed Liam a bottle - he pounded two ounces faster than ever. It was his first bottle in three days after all. We also got to hold Liam for the first time since surgery which was quite an emotional event for us as you can imagine. They say that Liam gets the gold star for the day on the CICU. We couldn't be happier!

Breathing Free!!

Today is Liam's eight-week birthday. To celebrate, Liam was taken off of the ventilator at 10:45 this morning. All of the numbers the nurses and doctors monitor after extubation look good, and he has settled in for well deserved nap.

Liam also has far less tubing hooked up to him now. While it may look like alot, it is alot less than when he first got to the CICU. Most of the wires visible in the photo (around Liam's back) are hooked up to vital sign monitors. The line with the two red caps runs directly into the right atrium of his heart and allows medication to be given directly to the source for circulation throughout the body. Instead of running six or seven meds through this line as they did when he arrived in the CICU, he is now only on two and at minimal doses. The last two lines are an oxygen tube to provide him with a little help in breathing and a catheter to help him pee. Lauren and I think that the catheter is really so that the nurses don't have to change as many diapers.  His only pain medication at this time is a Tylenol suppository that is given...ah hem...well, we were just talking about diapers so you figure it out.

They even let us give him his pacifier before he drifted off to sleep which was finally a little taste of normalcy for all of us. Liam truly enjoyed this simple pleasure and it helped to soothe him significantly.

All in all, everyone thinks our little man is doing well. He's been quite a champ, and both Lauren and I are incredibly proud of all that our little Liam has overcome in his eight weeks with us which is far more than most people overcome in a lifetime. As you'll see below, Liam is wearing his mother out in the process!

Keep your fingers crossed that we keep progressing in the right direction! Next steps are the removal of the line in his femoral artery and the line into his heart. If he can get through those things, he'll be out of the CICU soon!

Extubation Day

Lauren and I arrived with tons of nerves today following a night of restless sleep. Liam has begun the test that will let us know if he is ready to be taken off of the ventilator (extubated in medical terms). So far Liam is pulling good volume, so we're hopeful. The nurse was nice enough to tell us that about one third of kids end up back on the ventilator for some time and for a variety of reasons. We are glad to know this up front rather than after the fact when we would always question the validity of the explanation. Then again, this is Liam who, when threatened with a feeding tube before surgery because he wasn't eating enough, started slamming his bottles and amazing everyone with how stubborn he is. Hopefully this fighting spirit comes through again today. Keep your fingers crossed! We'll keep you updated on how things go.

The End of Day 2

So Day 2 ended around 5 pm today. With Liam still sedated because he is still on the ventilator, Lauren and I came back home to play with Caroline, get another night of good sleep (a relative term these days given all that is on our minds), and a home-cooked meal. One of the frew negatives about Children's National Medical Center, and this is a big negative, is the cafeteria - the service is atrocious and the food is worse! To give you an idea of how bad it is, the X-Ray techs joke that they irradiate their cafeteria food before they eat it.

Liam was slightly uncomfortable when we left this evening which Lauren and I didn't like. However, they are trying to prep him for removal from the ventilator tomorrow morning so they don't want to dope him up too much and delay the process so that Liam doesn't spend another day on the ventilator. Liam needs to be awake and coherent enough to breathe on his own, and with that awareness comes some discomfort. He had three chest X-Rays today, each showing continued clearing of his lungs. We are hopeful that tomorrow is the day that he finally gets off the ventilator; breathing on his own is his ticket out of the CICU! Until then, we will hold our vigile at Liam's side and occupy our time as best we can. We're even getting a little rest in the process as you'll see in the picture.

We'll keep the updates coming tomorrow!

Liam's Chest Tube is Out!!

Another milestone met! The surgeons removed Liam's chest tube while Lauren and I were at lunch. While we are both on emotional hair triggers, this was a big enough milestone that it brought Ethan to tears. One more step toward getting out of the CICU!

Day 2 Morning Rounds

Liam did well again last night. He peed out alot of the excess fluid that they wanted him to, but not quite enough to take him off the ventilator. While his chest x-rays showed fluid in his lungs, the attending said that his blood gas tests and the sound of his lungs are far better than his xrays look. He will have his chest tube removed today, which is an excellent sign of progress. More updates later this afternoon! Know that Liam is progressing very well by all accounts!

Day 1 After Surgery

Liam had a pretty good day today. We finally got Liam's medications dialed in to where his pain is comfortable, and his sedation is only enough to keep him from moving around too much. Unfortunately he is not shedding the fluid buildup that is common after cardiac surgeries fast enough to be taken off of the ventilator. However, the doctors intend on removing him from the ventilator tomorrow. He has to pee out a certain amount more fluid than they are giving him in order for the breathing tube to be removed. As of dinner time tonight, he is 1/3 of the way there and he is getting another dose of diuretics this evening.

Liam's heart rythym is strong and consistent. None of the arythmias that are a prmiary concern following this surgery are present. Liam's blood pressure is consistent and right where it should be. While Liam is supported by the ventilator, he is also breathing on his own. Liam also had one of the tubes that were placed into his heart removed. One less tube is always a good thing and is a sign of progress.

Because Liam is under heavy sedation, Lauren and I are sleeping at home again tonight. We will call at least as many times as last night for updates on Liam's status. Last night's sleep plan didn't work out as well as we had hoped. Caroline is missing us since we're gone so much and is really sensing the severity of the situation. She was up several times last night so we didn't have the restful night that we planned for. However, we were also reminded that while Liam has dominated our attention over the past seven weeks, we have a wondeful little girl who needs our love just as much as Liam does right now. So we have adjusted our schedules to make sure that at least one of us is home from the hospital early enough to spend some good quality time with Caroline each night.

We cannot say enough good things about the staff at Children's Hospital and the care that they provide. Each person on the Cardiac ICU is professional, calming, and extremely attentive not only to Liam's needs, but to ours as well.  We know that Liam is getting the very best care that we can provide for him, from a world-class cardiac surgeon, to a respiratory technician with a personality that brightens even the darkest rooms. Liam is in good hands and we are hopeful that once we get him extubated, he will begin achieve recovery milestones in rapid succession. Hopefully tomorrow brings another day of progress. We look forward to him being removed from the venitlator and to being able to feed him again.

The First Morning With a Repaired Heart

Liam did great last night. They reduced the assistance he is receiving from the ventilator and he is resting comfortably. At the doctors' suggestion, Lauren and I stayed at home last night. They say that since he is so sedated the first night and the parents are so emotionally drained, that is the best night for mom and dad to go home and rest up. So we called the cardiac ICU four times for updates in nine hours and were back at Liam's bedside by 7:15. Today's big goal is to get him off of the ventilator. We'll let everyone know when that occurs. Everything else seems to progress from there.

Happy Friday everyone!

Liam is Doing Great

Although he has tons of tubes coming out of every possible place and then some, Liam is comfortable and starting to move a bit. He has weathered the storm well and all of the cardiologists say that he is doing great.

We will be sleeping at home this evening so that we can see Caroline and get a full night of sleep. We will return for morning rounds and hopefully to remove the breathing tube. A few more hurdles to overcome, bur by all accounts Liam is doing extremely well!

Liam Is Out of Surgery!!!

Liam is out of surgery!!! Three hours start to finish and no surprises!! We'll be able to see him around 1:30 or so. Next milestone is removal of the breathing tube - hopefully tonight.

Surgery Has Begun

The OR tech came for Liam just before 8 this morning. We walked down to the OR with him and spoke with the anesthesiologists. We then said our good byes to Liam and came back to our room to wait for updates. we'll keep the updates coming as they are available.

Pre-Op Day Part 2

So we're winding down pre-op day. It didn't really carry the luster that the doctors said it would. Only one blood draw in the morning, and some meetings with the surgeon (complete with the signing of the consent form). So, as we start thinking about trying to sleep, here are a couple of pictures of Liam - one with his Dad, one just of him.

Post-op updates tomorrow!

Surgery Has Been Scheduled

Liam will have his surgery tomorrow morning at 8:30. Should take one hour for anesthesia, three to four hours for the actual surgery, and finally one hour of admission to the Cardiac ICU before we can see him. Tomorrow will definitely be a long day.

Pre-Op Day - Part 1

Pre-op day began early today. Liam was due for a feeding at 5 am, and the techs came at 6:30 to take blood. Thankfully I was up and ready for them. I spent the morning holding Liam and feeding him bottles; feeding Liam bottles is our job right now. Lauren came from home around 11:30. Liam heard her walk in and immediately brightened up and looked around for her. We've been through morning rounds with the cardiology team - complete with nutritionist, social workers (they're for us more than Liam), resident, fellow, and an attending.

Now it's more bottles to keep Liam's metabolism strong. The doctors tell us that babies who are eating well just prior to surgery get off the ventilators more quickly and generally recover faster. Here are some pictures of Liam and Lauren sharing a feeding.
 

This is our tech for today, Hakim. He takes Liam's vitals and brings him bottles. Hakim played football at Duquesne and is now a fire fighter in the DCFD at Station 39 - the busiest in the city. All of the techs and nurses here at Children's are incredible, they all love working with kids, and they all love Liam. We'll post more pictures of them over the coming days.

The surgeon will be by soon to talk with us and go over how tomorrow will go and exactly what time Liam's surgery will be. Apparently the surgery takes about four to five hours in total. Surely those will be the longest hours of our lives.

Thanks again to everyone for the well wishes. Lauren and I are remaining strong under the circumstances and are trying to keep the vibe positive for Liam. The staff are all excellent and reassuring and they help us with some levity at times as well.

Until next time.



Getting the News

Today was a heavy day. This afternoon we learned that Liam will have surgery on Thursday. We're not sure what time of day, or any other details at this time. We do know that tomorrow will be a busy day of "pre-op" stuff - echocardiograms, EKGs, meetings with the anesthesiologist and the surgical team. This is all stuff we knew would come, but can never prepare for mentally until the day actually arrives and you have to just deal with it. Thankfully Liam is comfortable, he's eating well and he is ready for surgery. As you can see, Liam is well at ease withe the prospect of open heart surgery. His mother and father will surely have two very long days and nights waiting for surgery.

 

Please keep Liam in your thoughts and prayers.