Carson Update

I've been a slacker about updating this blog about Carson's health. The good news is that there has been little reason to update the blog because Carson has been very healthy and happy! In just the last week or so he has become sooo much more aware and grins at us when we make goofy faces (which is often). Anyhow, thank you to everyone who has been following our saga and praying for us. He may not be destined to sing opera (b/c of the vocal chord damage), but somehow I'm sure he'll manage :)

Carson is HOME!

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Carson Coming Home !

Saturday morning Kristen and I were treated to a big surprise. We arrived the NICU to find that Carson's NG feeding tube had been removed! His doctors were happy with his progress and decided to remove the tube and let him free feed (as opposed to taking a bottle on a specific schedule). For the very first time we were able to hold him and see his entire face... no tubes, wires, tape, cannulas in his nose, or IV's in his forehead. We expect to bring him home early this evening :)

Final Hurdle

The only thing that is keeping Carson in the NICU is his current inability to drink the entire contents of his bottle without falling asleep. When this happens, the remainder of his milk must be pumped into his stomach through the NG tube that's stuck up his nose. Sometimes he finishes the bottle easily, but he's just not consistent yet. If he doesn't improve this weekend we will be getting trained on how to feed him through the NG tube and we will feed him at home with daily visits from a home nurse.

Vocal Cords

Last night Carson underwent another procedure where the surgeon went in to see if his cyst had reformed and was collecting fluid again. The surgeon referred to the size of the original cyst as "huge" and said that the walls of the cyst were not as flimsy as many of the smaller cysts she has seen. As a result, the cyst cannot be removed at this size without significant trauma. Therefore, she is simply try to keep it drained and see how well it is absorbed by the surrounding tissue.

The good news
The surgeon did not see any indication that the cyst had recurred and it continues to drain normally.

The bad news
Unfortunately, it appears that the size and location of the cyst may have impacted the development of his vocal cords on one side. As a result his voice will likely always have a raspy or hoarse sound. We just don't know if that means he's gonna talk like a cowboy or whisper like a monk. Either way, his challenges pale in comparison to being born without an esophagus (which is what we were told originally).

ETA
Spoke with the neonatologist today and he indicated that if things went well we could probably take Carson home in 5-7 days. There is a small chance that he could come home sooner, and if things go south he could be there longer. But that was his best guess.

Kristen should be leaving to visit him in about 15 minutes. I'm sure he's looking forward to seeing mommy.

Carson's First Videos

While we are posting a lot of pics here, but we typically use Snapfish for our photo management. Click here to see a complete album of Carson. My apologies that it requires signup... we should probably switch to Flickr so you don't need to but we have hundreds of pics on Snapfish already.

Also we have uploaded a coupla videos as well to youtube that you can see here:
Video#1 Video#2

Enjoy!

Carson's Homecoming Countdown

We haven't posted to the blog in a while because there hasn't been much to report. Saturday has come and gone and Carson is still in the NICU so my prediction was apparently a bit optimistic.

On Saturday Dr Gowan (the surgeon who treated Carson originally) told us that she thinks his cyst may have reattached and is collecting fluid. On Monday she is going to put him under and re-scope his trachea to see what's really going on. If the cyst has reappeared she will drain it again and continue to monitor his progress. Still no ETA on his homecoming.

One a positive note, Carson is definitely starting to show his personality now. He is very alert when I visit him and smiles when we talk and play with him. His doctors and nurses all gush about how sweet and cute he is. I suspect that's because he is one of the few babies in the NICU that is full-sized and healthy.

We still visit him everyday and are anxious for him to come home. Evan is anxious as well because he's never met his baby brother (NICU doesn't allow children visitors). I'll post here as soon as we get an estimated homecoming date for Carson.

Home Again

Kristen was finally released from the hospital on Sunday morning. We celebrated by going to lunch at her favorite sushi restaurant (eating sushi while pregnant is not advised). While she is still quite sore from the c-section, Kristen is recovering well and has weaned herself from the more powerful painkillers. She spends a lot of time breastfeeding her Pump-in-Style and so that we can bring Carson some mother's milk in the NICU.

Carson has been in the NICU (neonatal intensive care unit) at Children's Healthcare of Atlanta since just after birth and has continued to progress nicely. Originally he looked a bit like a science experiment with an IV line for fluids and nutrition, a tube into his lungs to breathe for him, a tube into his stomach to remove bile, three skin-mounted sensors for heartbeat, temperature, and who knows what, a pulse-ox sensor on his foot which measured the amount of oxygen getting into his bloodstream, a blood pressure cuff, two lines attached to his umbilical cord for blood draws and secondary blood pressure monitoring, and a urinary catheter.

He now has only the skin sensors, the pulse-ox, an external nose-mounted oxygen line, and a feeding tube. He has been able to take up to 65ml of breast milk through his feeding tube and keep it down so they are hoping to remove the tube and try bottled breastmilk later today. That is a huge step in the right direction if he takes well to the bottle. We also know that he has been able to maintain the necessary oxygen level in his blood even without the oxygen line (for short durations) but they are keeping that on just as a precaution for now. He is still on sedation but only on an as-needed basis (not a continual drip). Our only significant concern at the moment is that we have yet to hear him cry. He gets upset and tries to cry but we haven't heard his voice yet. Obviously, his trachea and larnyx are still healing so we remain optimistic.

Kristen and I are visiting Carson everyday at the NICU until he comes home. We don't have any estimate from the doctors yet, but I have my money on Carson being home by Saturday.

Carson & Kristen Update

It's late friday night and Kristen is asleep in her hospital bed as I type this. We have been living in a hospital room together since Tuesday morning and we are both anxious to get home to be with our other son, Evan. Kristen has been weaned from the epidural and is managing her pain with percocet (sp?) and Motrin. She is hoping to be released sometime Sunday.

While we are anxious to get home, I must admit that we have enjoyed being this close to Carson (his hospital is directly across the street). I've been over there three times today alone. Carson's health continues to improve daily. He is still on a breathing tube because his lungs haven't developed completely yet. Because of this he remains under sedation so we really don't get to interact with him much. However, tonight for the first time we actually saw him open his eyes for just a moment. I could swear that he smiled when he saw his mother for the first time. The respiratory therapist has given Carson a surfactant and some steroids to accelerate his lung development with hopes of removing the breathing tube on Saturday. No word yet on when he might be released, but I'll post an update as soon as we know.

Carson is 80 hours old now. May he never have any as difficult as his first five.

Happy Birthday Carson

It's strange how much your life can change in the course of a day. This morning we were prepared to face the reality that our son was going to be born with a very serious birth defect which may require multiple surgeries to correct including the possibility that a section of his colon might be used as an esophagus.

Kristen was induced around 6am this morning and we had hoped that Kristen would push little Carson out around noon. However, when Dr Bodner came in to assess her progress at about 3:30 Carson still hadn't dropped down far enough and his heart rate was unstable so an emergency C-section was called.

I have never been in an operating room and was floored by the number of doctors and nurses in this tiny operating room. There were 12-14 people in the room all working in concert... simply amazing. I was sitting up near Kristen's head and holding her hand, but there was a blue curtain which shielded our view. Kristen was fully conscious the entire time. When the doctor finally pulled Carson from the womb he was extremely pale, his heartrate was about 80, and he was not breathing. We kept waiting to hear him cry out, but of course, he couldn't.

It's an eerie feeling in an O.R. when things go wrong. The tone of people's voices and the look on their faces made it abundantly clear that things were dire. The anesthesiologist actually bent over and offered to put Kristen under sedation and said that I could go to the waiting room if this was too intense for us. We both declined. Kristen and I could hear the team repeatedly attempting to get a breathing tube in him, but with no success. We heard one of the doctors ask for two different dosages of "epi" to be drawn up (not a good sign) and another was discussing the possibility of a tracheotomy.

Finally, we heard his heart rate increase and the team had been able to breathe for Carson using a bag so his blood was now getting the necessary oxygen and was flowing to where it was needed. His color turned pink and we felt a small sigh of relief. They let us spend about 3 minutes with him before whisking him away for evaluation. (see picture below... that's me in scrubs on the left).

After Kristen went to surgery recovery I rode with Carson in the ambulance over to Children's Hospital of Altanta where the team of doctors and surgeons would re-evaluate Carson's condition. However, we had been told that they had finally been successful in passing a very small air tube into his trachea (which is a very positive sign). When we arrived at the Children's Hospital they took Carson to the O.R. and told me to sit tight in the waiting room and wait for their call. Slowly, the good news started to leak in.

First, Carson did NOT have esophageal atrisia as previously diagnosed. It was a problem with his larynx. Next we learned that there was a cyst on the trachea just above his larynx (not actually on it). Finally, we learned that both his trachea and his esophagus are fully formed! They actually drained the cyst right when they found it and Carson did great through the procedure.

The last doctor I saw was Dr Gower who said to me "I want you to buy a lottery ticket for me on your way home tonight. " Apparently, of all the possible conditions which could have caused these symptoms, this was (by far) the best possible case scenario. They moved him to the NICU shortly after surgery and I got to spend about 30-40 minutes with him before returning back to Northside to be with Kristen.

The staff at both Northside & Childrens were amazing. Not only did they provide outstanding care for both Kristen and Carson, they really went out of their way to explain everything that was going on and were extremely nice. Apparently, news of Carson's condition had spread throughout the labor & delivery staff and Kristen said that one of the nurses from the O.R. came to her recovery room and actually began to cry when Kristen told her how well Carson was doing. My sincerest thanks to the entire staff of 20+ people who helped us through this. Also, thanks to my parents for being here not only today, but for the past six weeks while Kristen has been on bedrest. I have no idea how we could have done this without you.

It's been an amazing day for us... certainly one we will never forget.

Happy Birthday Carson!
love,
Mom, Dad, and big brother Evan

New Carson Pictures

You can click on any picture to see it fullsize.

First picture of Carson

stats

Weight = 7lbs 12oz
Length = 20.5 in

Carson has arrived

Today at 4:35pm Kristen gave birth via c-section. Unfortunately, Carson was not breathing and had a very weak heart rate at birth. They were just about to poke a hole in his throat when they finally got a small airtube passed into him.

His heart rate is now fine, and he is breathing with the tube. But we are not sure what lies ahead for him. Apparently he does NOT have AE/TEF but rather something is wrong with his larynx (voicebox). I am about to consult with a surgeon now and we expect that Carson will be in surgery within 30 minutes.

Realtime Birth Updates

I've added a little gadget on this blog that will provides real-time updates of Kristen's progress (just look to the box on the right). These updates can be done via my mobile phone which will be a bit easier to do as we get closer. If you are curious, the real-time update uses a technology called Twitter.

T minus one

Tomorrow at 6am the doctors will induce Kristen into labor. The estimate is that Carson should be here by about noon. I cannot wait to see his face for the very first time :)

Scheduling Carson's Birth

Another doctor's appointment today and the decision has been made to admit Kristen to the hospital on Tuesday (5/20) and drain off some of the excess amniotic fluid before inducing labor early Wednesday morning. Surgery to repair the AE/TEF will be scheduled to happen within 24 hours of birth. I cannot believe that we are only a week away!

After spending months looking through baby name books and creating dozens of lists, we have finally chosen a name for our baby boy:

Carson Michael Quinlan

Kristen Home

Yikes! I just realized that I had never posted the update to Kristen's hospital stay. Sorry to keep everyone in suspense. Kristen was released later that evening and she has been taking it easy on the couch ever since.

Back to the Hospital

Uncomfortable would be a kind word to describe Kristen's state over the past couple weeks since being released from the hospital. She's spent most of that time on the couch or in the recliner watching Tivo or surfing the internet to learn more about EA/TEF. Yesterday the term uncomfortable gave way to painful as Kristen's contractions became more frequent and intense.

This morning at 3am kristen was awoken by her contractions and she spent the next few hours documenting of the frequency (every 5-7 mins) and then called the doctor. We have been here at the hospital since about 7am and I'm writing this while Kristen tries to get a nap. She has been given multiple injections to slow down her contractions which have slowed to about every 7-8 minutes but at about half the prior intensity. They plan to check her out after dinner to determine if we can come home tonight or not.

Kristen was just checked and apparently her cervix is still closed (or almost closed) which is a good sign. I'll post another update either tonight or tomorrow depending on what happens.

Chugging Along

So it's been a few days since we posted anything... mostly because there hasn't been much news to post. (that's a good thing)

Kristen visited the doc again today and had her first of many followup ultrasounds (weekly until delivery). Everything appears to be progressing nicely; her amniotic fluid is not increasing at the moment and her contractions are very mild. Baby Quinlan appears to be doing fine (I suppose we should stop calling him Baby Quinlan and actually pick out a name soon). Kristen remains on strict couch-rest until the doctors say differently.

We will post back here when we learn more.

Matt & Kristen

Kristen on Bedrest

Good news! Based on Kristen's progress over the past several days, Kristen has been released from the hospital. While she continues to have minor contractions, they are not increasing in severity or frequency (thank you Terbutaline). She is now home and resting comfortably on the couch.... well, maybe not comfortably ;)

Unfortunately, she has been given doctor's orders to remain in bed (er, couch). My parents have been a godsend this week by taking care of Evan and helping us out at home. We are increasing Evan's school schedule from 2 days / week to 3 days / week to give my parents (and Kristen) a break.

For now, we will continue to monitor Kristen's health with weekly visits to the OB/GYN and the radiologist to track the volume of amniotic fluid and the condition of the baby. The doctors are hoping that Kristen can hold out for about 4 more weeks to provide the baby ample time to develop. The more mature he is, the better he will be able to handle the surgery after birth.

We will continue to post developments here as they happen.

Matt & Kristen

Surgical Consult

We met with Dr Roger Pitt today to discuss the surgery that baby Quinlan will require and the resulting aftercare. He was extremely nice and walked us through all of the possible variations of EA/TEF with their corresponding surgical options.

The baby has either type C or type D. We are hopeful that it is the more common type C because the gap between the two ends of the esophagus is typically smaller making it easier to reattach them. If the gap is larger (uncommon with type C but common with type D) then we have to consider other options including traction or interposition grafts. We won't know which type he has until after he is born.

He will have surgery within 24-48 hours of birth to attempt to reconnect the esophagus. The esophagus will be given approximately one week to heal while the baby is fed intraveneously. Then we will try to feed the baby a small amount of milk and check for leaks (a tube will be left in his throat to provide drainage). If the suture doesn't leak and there are no complications the best possible outcome would be that he is home about 2 weeks after birth. A more conservative estimate may be 3-5 weeks.

After he comes home we will likely need to come back for periodic dilations where they will attempt to get the lower portion of the esophagus to stretch to the same size as the upper portion to which it was attached.

The biggest concern for me at the moment is that EA/TEF patients often suffer from one or more additional VACTERL birth defects. Each additional defect obviously comes with it's own set of challenges. The good news is that none of these additional defects have been observed in the ultrasounds so far (although they cannot see all of them).

Assuming that nothing changes overnight Kristen should be discharged from the hospital after her followup ultrasound tomorrow. She will then need to have weekly appointments at both the OBGYN and the hospital (ultrasound) until she gives birth.

Baby Quinlan Facing Hurdles

Saturday afternoon (4/12/08) my pregnant wife Kristen started to feel really uncomfortable with the number of Braxton-Hicks (false-labor) contractions she was experiencing. We called the doc and he suggested that we come into the hospital to have her evaluated. Kristen received some Terbutaline to slow down the contractions and they monitored her until morning.

Sunday morning we had an ultrasound with Dr Lopez-Zeno which indicated that Kristen's contractions were being caused by an excessive amount of amniotic fluid. The doctor then noticed a cyst in the baby's throat which he thought was the likely reason for the amniotic fluid buildup. Apparently, the baby should be constantly swallowing the amniotic fluid and the cyst might be preventing him from doing so. The doctor scheduled us for another ultrasound with a specialist Sunday morning.

Monday afternoon we had our followup ultrasound with Dr. Stone. He was able to determine that the cyst was actually a birth defect called Esophageal Atresia with TrachEoesophageal Fistula (also referred to as EA/TEF).

The baby will most certainly need to have surgery soon after birth to reattach the two disconnected ends of his esophagus and disconnect the esophagus from the trachea (fistualas). We are having a consultation with the surgeons tomorrow. In the meantime they have started Kristen on steroids to help mature the baby's lungs more quickly in case they have to take him early.

The good news is that other than this problem the baby is quite healthy (strong heartbeat, active, good weight) and the mommy is quite healthy as well (but anxious to get out of this hospital bed).

We will post updates here as we learn more.

Matt & Kristen

P.S. Here's other useful links about EA/TEF :

http://www1.umn.edu/eatef/

http://www.eatef.org/