Today was our full day of appointments at Barnes/ St. Louis Children's Hospital. We started the day with meeting the Nurse Coordinator for the Fetal Care center at Barnes. She coordinated all of our visits to the hospital and is the common link between Dan and me and all of the teams of doctors that will be involved in Linc's case. Meg accompanied us to all of our appointments and helped to relay info from each visit to subsequent doctors so everything was up to date.
9:00 am - Ultrasound
Lincoln's ultrasound today was consistent with past ultrasounds. He is still a little on the small side, but his growth curve is the same shape as the normal, just a little below the low end of "normal." So he is still growing steady! Lincoln is 3lbs 2 oz and he has hair on his head! His heart beat is 131bpm, which is lower than it has ever been. (A good sign that he is growing up - says the OB). His genitals still look different, but they are functioning and that's all that matters now! My amniotic fluid is measuring high, which is something we were told could happen. Due to Linc's organ's being displaced, they are putting increased pressure on the esophagus, causing him to not be able to practice swallowing as much as he is urinating. The increase in fluid doesn't cause any harm to Linc, but if it gets too bad, it can cause premature labor. They also did what is called a biophysical test and Linc got 8 out of 8 points! The biophysical checks several things including movement, heart beat, and practice breathing (opening of the mouth and chest movement). Yay Linc!
10:30am - Maternal Fetal Medicine 32wk Check-up
I passed the glucose test so I do not have gestational diabetes. :) My weight is good and my blood pressure has returned to 120/60 (down from two weeks ago when it was slightly elevated, probably due to stress). We saw a doctor at MFM that we haven't seen before, but he was very nice and informative. He explained that the increase of fluid around Lincoln can get to a point that it is too much for the membranes to handle, and the response is labor. There is nothing I can do to reduce the fluid amount, but if pre-term labor does occur, the docs are very good at slowing and/or stopping it to keep Lincoln from coming too early. The OB explained that in order for Lincoln to be able to take advantage of the full range of help from Children's (like the bypass machine ECMO) he will need to be about 4.4lbs at birth. Best case scenario, the team would like me to carry Lincoln to 39wks and then induce. Statistically, there would be no increased benefit for Linc to stay inside any longer. The OB also said that Non-Stress Tests (NST test the babies heart for abnormal beats) could be in the future for us, but that has not been decided yet between the OB's and Pediatric docs.
11:00am - Tour of Barnes Labor and Delivery / Children's NICU
Meg took Dan and me to Barnes South, where Labor and Delivery are located. We got to see where to go when the day comes and she walked us through the series of events that will happen that day. I will labor in a regular L&D room, but actually deliver in one of two OR's they have on the floor. The number of doctors that will need to be present requires the larger room even if I deliver vaginally. Dan, Lincoln and I will be together in the OR as the docs clean Lincoln and put him on a ventilator to help him breath. I will be able to see him and touch him for a few minutes before they take him to Children's NICU where he will stay until he is healthy. Dan is able to go with Linc and the doc's as they transport him, but I will need to recover for a few hours until I can be wheeled over to see him.
Meg took us on the path that Linc will take from L&D to the NICU, which takes about 5 minutes. At the NICU we were able to see the overall environment of what to expect and also could see a few of the machines Linc will need (ventilator and feeding tube). There was actually a baby in one of the rooms that Meg pointed out as having been born with CDH. This baby was recovering from his hernia corrective surgery, but was still on a ventilator. He never needed ECMO. It was great to get an overview of how our delivery day will go and to see a CDH baby doing so well in the same NICU where Linc will be!
12:00pm - Lunch and a well deserved break!
1:00pm - Meeting with the Pediatric Surgeon and Neonatologist (baby doc)
Meg took us to a conference room where we met one of the several Pediatric Surgeons and Neonatologists on the teams that will care for Lincoln. They when through the several possibilities for Lincoln after he is born and how his condition is assessed along the way. They explained that things may seem to progress slowly, but that they are just giving time to assess him at every stage and collaborating on what to do next. Children's sees about 8 babies per year with CDH and have a survival rate of about 60% (close to the national average of 50% or so). They reminded us that Barnes sees the sickest of babies and are very familiar with CDH. They confirmed a lot of info Dan and I had already looked up online, like the right sided hernia patients have a better survival rate than the left. They also said that the average stay in the NICUCDH babies at Barnes is 3-4 months, with the majority of that time being concerned with feeding. Since CDH babies do not have the normal opportunities to breast feed, they lag on their learning of mouth feeding.
The Neonatologist also suggested that we choose a Pediatrician for Linc to go see for regular weight and measurement check-ups and vaccinations. He will still need to visit Barnes for specialized care in conjunction with his primary pediatrician. They were both very nice and concerned with how we have been handling this whole situation. They told us that there are teams of people cheering for Lincoln and that they are prepared for his arrival and will do everything they can for him.
2:30pm - Fetal Echocardiogram
Meg took us to the Children's Heart Center for a second fetal echo. After an hour and a half of Lincoln turning and squirming, the technician was able to get all of the data she needed for the doc. Everything looked good according to the cardiologist which is great news! The pediatric docs wanted to be sure that Linc's heart still looks normal, since heart complications are the most common additional problem with CDH babies. Looking at the heart can also help the docs to get somewhat of an idea about how severe Lincoln's condition may be, but nothing can be known for sure until he is here.
5:00pm - Finally home!
Even though the day was long, it was great to finally hear the plan for Lincoln (whether he sticks to it is up to him!). It was good to hear the possibilities for him so as not to have any surprises along the way and to get a sense of what delivery day will be like for us. It was nice to see some of the docs that will work on Linc and to see that everyone was well informed of our case. I almost feel a little more at ease with the whole situation, which I am sure will chance as delivery day approaches, but that's to be expected.
My next appointment is with MFM for 34wk check-up where Meg will meet us at the office.
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