Today the doctors put me on “ad-lib feed”. That means I can eat whenever I want. I just have to cry for Mommy or Daddy to feed me.
Mommy is trying to teach me to breast feed, but that’s hard. I think she’s going to keep on trying though. So maybe I’ll just give in and make her happy.
If I gain weight, the doctors will send me home. Mommy says my room at home is “the bomb”. That sounds fun.
So yesterday, Isaac had his swallow test (technically a barium swallow). We’re told he drank the chalky goo down quickly and no leaks showed up on the x-rays.
We were then able to feed Ice Man a bit (15ml) of pedialyte every 3 hours. Shortly after his first bottle, he exploded with a humongous green poo.
This morning we were able to give him mother’s milk, and he’s having that every 3 hours now. You can tell he likes it much better, and falls asleep with a full belly.
He is not having any problems eating. He takes the bottle well (we’re using a slow-flow nipple in preparation for breastfeeding later). He sometimes has hiccups after eating, but not so much lately.
They also took his “chest tube” out today (which had drained fluid from his operation earlier, but hasn’t been doing much lately)… so we’re able to hold him. Isaac likes to be held. And we love holding him… even when he audibly poos in Mom’s arms. She is so calming!
Everything is going well. I think we could take him home now and take care of him as if we had gone home from birth with no problems (that’s just my opinion, not backed up by any doctors). We’re going to do our routine here for another couple weeks to make sure he’s in tip top shape and the surgery heals well.
Actually, the main thing we need to do is ween him off of all the comforts of the hospital and onto the comforts of home.
Now that he’s eating and being held, he doesn’t understand why that can’t happen whenever he wants. They’ve turned down his IV, so he’ll be feeling hunger in a different way (before he had an empty stomach, now he’ll have an empty stomach and low blood sugar, etc, like anyone else not on an IV).
With the chest tube out, he doesn’t need the comfy rolled up towels that were keeping him from rolling around. Those aren’t good to have in a crib unless you have a heart rate monitor on your baby. Kim talked me out of getting one for home. So he’ll have to learn how to sleep without pillows.
Thanks to the Ronald McDonald house, Kim and I are close enough to come over to see Isaac whenever we need to. We’re taking turns and trying to be there whenever he is eating or awake… just like at home.
We’ll keep you posted.
Last night was an exciting one for Isaac. They moved him into a crib. (His old bed was the standard open-top NICU issue with a heat lamp.)
Because he is not under a heat lamp, he can wear clothes now. He loves being wrapped in blankets (like any baby). Though he still likes to have his hands out up top to rub on his face.
We can also put lotion on his skin, which can get dried out from all of the bandages they put on him (mostly to hold monitor wires).
They even gave him a couple of toys: a duck and horse attached to pacifiers. He loves them. We just sit the little animal up on his chest, with the paci within sucking range. He’s already very good at holding pacifiers in his mouth with his hands.
We bought him a mobile for his crib. It’s a Fisher Price jungle-themed one that plays some catchy Bach, Beethoven, and Mozart numbers. This is cool because we’ll take the mobile home with us, and it can help in the hospital-to-home transition.
I’ll try to get some more recent pictures up (listen to me – “more recent” – he’s five days old! – Kim already made an album with 100+ pictures in it). If you are not used to the wires, the pictures could look scarier than they are. So I’ll try to put a “wires and tubes primer” up first. This is important, cause a major measure of progress is the number of wires and tube around his crib. 
Isaac has a big test on Monday. So we’re going to cram all weekend and focus on getting his rest. If all goes well, he’ll be able to ditch the two remaining tubes… leaving just the bare minimum wires for monitoring heartrate, respirations, and blood-oxygen levels. A tubeless baby is also a baby we can hold, so we’re excited about that.
Well, now that you’ve seen Isaac’s pictures from his birthday, we have to break a little news. Luckily for everyone reading this, the ‘bad’ news is now offset by fantastic news, so please read on without fear!
Isaac was born (at 2:33am) with lots of mucous in his mouth and throat. He kept coughing it up and we had to suction him out a lot. By the time he was 5 hours old, I got a little more concerned about the mucous and sent him to the nursery for investigation. Within an hour, our pediatrician, a nurse, and the hospital’s neonatologist came into the room to talk about what they were seeing. They wanted to take him up to the Neonatal Intensive Care Unit (NICU) to monitor him, get him on antibiotics to protect from pneumonia, and just see what was up. This was very difficult news for Jason and I to handle because we were so looking forward to being with him non-stop, but we knew it was best and sent him right on up.
Within a few hours, the neonatologist, Dr. Vebert, came back and explained what she suspected was the problem. She had done chest xrays to reveal that his esophagus and trachea had defects. She diagnosed it as TEF (Tracheoesophageal fistula). This defect requires surgery and she recommended he be transferred immediately to St. Christopher’s Hospital for Children in North Philadelphia. The good news was that ALL of his other vitals were perfect, including his respiration, heart rate, blood pressure, blood counts, and oxygen. He’d already had his first bowel movement only 30 minutes after being born! [Jason: and then peed on the nurse.]
We got ourselves ready and went up to spend a short time with Isaac in the nursery. They let me and Dad hold him while we were up there. The grandparents were allowed in to see him too. The transfer ambulance came around 2:00pm and Joe from St. Chris’ packed Isaac up in his little bed and took him on his first car ride to the city of brotherly love.
Jason and his family left Reading right away to get down and be with Isaac. I stayed at the hospital, waiting to get the OK from my obstetrician, Dr. Peterson, that I could leave the hospital early. He said yes, and I left the hospital around 7:00pm the same day Isaac was born (11/16).
Jason met with the head surgeon at St. Chris’, Dr. Prasad, on Sunday (11/16) evening and discussed his case. Dr. Prasad told him that he wanted to personally do the surgery and had traded another case with a surgeon so that he could accommodate Isaac.
You can read more about TEF here, but basically, Isaac had the Type-C, which meant that the surgeon had to go in and detach a branch connecting Isaac’s stomach and trachea. This branch was then connected to his esophagus, which previously ended in a dead end. (Dr. Prasad did a sketch that we’ll try to upload.)
There was some uncertainty as to how large the gap was between the top of Isaac’s esophagus and the part connected to his stomach. If the gap was too large (and some x-rays indicated that it might be), the surgeons would do some “tricks” to encourage growth and then try the operation again in 3 months. Isaac would need a feeding tube implanted. If the gap was small enough, they could attach it now and no further surgery would be needed.
Dr. Prasad stressed that Isaac was not in immediate danger. He basically just couldn’t eat. But with modern medical science, people (including babies) can get by fine on IVs. It was important that other tests be done to see if there were other complications that might need to be addressed before surgery and that the surgery was done with a fresh team. That said, they still were able to schedule surgery for the next day, Monday (11/17). (All of Isaac’s tests were coming back A+)
Monday morning, I arrived at St. Chris’ with my family, and Jason and I spent some time with Isaac before he was taken into surgery at 11:00am.
The surgery began around 12:30pm and Isaac was out around 3:30pm. Dr. Prasad came and found us all in the waiting room, with his two thumbs up to let us all know that Isaac’s surgery had the best possible outcome and was a complete success.
We’ve never been happier in our entire lives. In only one day this little guy became the most important thing in our lives, and we were so relieved to hear that he was okay.
Isaac is recovering phenomenally. He has had very little pain medication (everyone is impressed), and is mostly cycling between active, happy awake time and peaceful sleep. He’s being fed through IV fluids and can’t eat anything until after a (swallow) test next Monday! Today we began to see the profound pain a body goes through when suffering from hunger. We’re comforting him with words, songs, kung-fu, and gentle cradling. He can’t be moved from his bed, but we are placing a gentle hand under his head and just simulating the full-body rocking movements that will soothe a baby.
Jason and I are holding it together through the AMAZING support of our immediate family. They have all put their lives on hold to be there to take care of our every need and we are eternally grateful for their love.
Everyone is very worried about me, since most moms get a few days to recover from the demands of labor in a cushy hospital environment. I’m healing well and taking naps when I can. Even though Isaac can’t yet eat, we’re storing up all of my pumped breast milk for him to enjoy as soon as he is allowed. The NICU staff is very interested in keeping me pumping so that Isaac gets all the benefits of mother’s milk, and they’ve probably frozen about 30 bottles with just a few tiny drops of milk in them. I’m starting to flow a bit more every day, so the fruits of my efforts are much more evident and keep me motivated to continue pumping even if it makes me feel a bit like a machine.
Right now, his prognosis is EXCELLENT and he’s expected to need to stay in the hospital for around 3 weeks. Jason and I are staying at the Philadelphia Ronald McDonald House which is right on the hospital campus within a short walk (even for a 3-days postpartum woman) to our baby boy. We’re able to stay here until Friday and will then likely get back in on Sunday night. Keep your fingers crossed! After Sunday night, we will hopefully not have to leave again until 24 hours after Isaac is discharged from the hospital.
Please post comments with any questions you have about Isaac’s current status. We’re too overwhelmed to take calls, but comments on the blog are the perfect way to show your support and love.
And, one more thing you can do, please support Ronald McDonald House Charities. We all pass that donation box at the drive thru, so next time, throw a few coins in and know that you’re supporting people like Jason and myself, who have found an amazing resource that gives so much to so many during such a challenging time.
Peace and love to everyone,
Kim (a.k.a. Mommy)
I was born today on November 16th at 2:33 in the morning. I weighed 6 pounds and 0.8 ounces. I was 20 and 1/2 inches long. I was completely adorable.
Thank you, Mommy.
