Wednesday, April 30, 2008

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.

Monday, April 21, 2008

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

Thursday, April 17, 2008

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

Tuesday, April 15, 2008

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.

Monday, April 14, 2008

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 :