SamIsSoBig.com

Sam is now recovered, rested, and back to her normal feeding schedule. We think there’s a noticeable improvement in her feeding, though we’re trying to be more guarded with our optimism. (This little prankster has fooled us before!) She’s able to feed for long periods of time without pulling away to catch her breath, something she’s never been able to do.

Most importantly, she’s gaining weight! She is now up to 9 lbs 13 oz. She had the IV drip taken out around 10:00 am, and Dr. Sidman’s office cleared her to go home today - a day earlier than expected. Sam is officially under the care of a different physician at Children’s, and we’re just waiting for clearance from her. It’s now 1:00 pm, and Mandy and Sam can’t wait to come home!

Update as I’m typing this: Mandy just called and they’re all set for me to come get them. I’m outa here!

Samantha had surgery to remove some of the tissue around her larynx today at 3:30. She did great! The procedure lasted about 25 minutes, and she spent about another 45 minutes in the recovery room. Dr. Sidman told us that he removed only enough tissue as he felt necessary to allow her to eat better, stressing that it may not completely fix the noisy breathing. He said that if all goes well she could most likely go home Sunday.

Sam recovered very well, but was exhausted both from the anesthesia and from being up all day fussing, since we weren’t allowed to feed her after 9:00 am. She did feed a little around 5:30, but mostly slept the rest of the evening. She had an IV drip to keep her nourished, which the nurses said could be removed after she had a few good feedings. Mandy again spent the night in Sam’s room while Todd went home.

Sam’s swallowing was observed at the hospital yesterday and, to no great surprise, she was taking in very little liquid relative to the number of times she swallowed. Mandy and Sam also worked with a feeding specialist who recommended going back to feeding directly from the breast and helped Mandy with her technique. There were no doctor’s orders other than to keep her there at least another 24 hours to observe her weight. It was a tough day and we were getting a little impatient with all the uncertainties.

Today, just before noon, Dr. Sidman (the ENT specialist we saw originally) finally had a chance to come over and talk to us. He said that in his opinion, Sam fits the profile of the 1 in 10 babies with this condition that should have corrective surgery to remove the intrusive tissue around the larynx. He performs the procedure about a dozen times a year, and has been doing it for many years. It takes about 20 minutes. They go in through the mouth so there is no external incision. He said the only complication he’s ever had is not clearing enough tissue and having to perform the surgery again because he always takes a very conservative approach. But in the majority of cases, the problem is completely fixed the first time, and improvements are often noticed within 24 hours.

We really like Dr. Sidman, and we think Sam is in good hands with him. Of course, surgery is always a little scary, but we feel like much of the uncertainty has lifted and an end is in sight. The operation hasn’t been officially scheduled yet, but Dr. Sidman believes it will be tomorrow (Friday) around 3:00 pm.

Sam has been moved to a private room, and someone else has dibs on the room where Mom and Dad were staying. There’s just enough room to squeeze a single cot in Sam’s room, which means Dad will have to commute.

Thanks to everyone for your support and well-wishes. As always, check back for updates.

We admitted Sam at Children’s Hospital yesterday afternoon. The doctors and nurses performed a variety of tests on her, including heart rate monitoring, oxygen monitoring, X-rays, blood tests, and stool and urine tests. None of these tests revealed any problems, and Sam has been calm and quiet (if not sleeping) through all of it, oblivious to all the poking and prodding. The nurses have fallen in love with her!

Today they’ll use some sort of video device to observe her swallowing. She’ll also be visited by a feeding specialist who will help determine if there are certain feeding techniques that will allow her to eat enough.

Sam is in a big room with 5 other babies, and Mom and Dad are staying in a room right across the hall. So other than Dad going to work, we’ll be there with her for her entire stay. The nurses said there’s a good chance they’ll be finished with her today, so we’re guessing that we’ll be able to leave the hospital tonight or early tomorrow.

Check back for updates! (And sorry I didn’t get those new pictures up over the weekend as promised, but they’ll be up very soon!)

We heard back from the ENT specialist this morning. He wants us to admit Sam at Children’s Hospital, where feeding specialists will monitor and work with her for a couple days. Our assumption is that he wants to make sure they haven’t missed anything and that we’ve exhausted every other effort to get her to eat better before proceeding with surgery to correct the laryngomalacia. It’s 11:30 am as I’m writing this, and we will be headed to the hospital shortly. We’ll do our best to keep everyone posted.

On another note, a big congratulations to our friends Alex and Dana Sosa on the birth of their baby boy Beck Alexander! Pictures of Beck are now up at their web site. We took Sam to meet her new little friend on Sunday. (Hmmm…if they get married some day, her name will be Sammy Sosa!)

We took Sam to the pediatrician today for her much-anticipated weigh-in. She gained 2 oz, which unfortunately doesn’t meet the 4-oz minimum that the ENT specialist wanted to see. We called the specialist when we got home and are just waiting for him to get back to us, which might not be until tomorrow. The bottle feedings have been increasingly difficult and time-consuming in the last few days, and we are prepared for whatever the doctor recommends. We’ll post another update as soon as we talk to the specialist.

Sam had her second pediatrician appointment on Monday. We were surprised to learn that her weight was 9 lbs 2 oz, down 2 oz from last week. The doctor suspected that she was not eating enough and that it may be related to the noisy breathing problem. We were referred to a pediatric ear/nose/throat specialist near Children’s Hospital, who we saw later in the afternoon. The specialist diagnosed Sam with Laryngomalacia, a condition where soft tissue around the larynx (voice box) partially obstructs the airway and causes the noises. The doctor said the breathing problem itself is rarely a concern and usually goes away in the first year, but the major concern is that it is making it difficult for her to eat.

The specialist explained that not much is known about the cause of Laryngomalacia, but doctors believe it is closely related to acid reflux. He prescribed Zantac, which helps with acid reflux and often eases Laryngomalacia symptoms.

The most important thing is for Sam to gain weight! The doctor wants to see at least 4 oz per week (ideally much more). It’s difficult to tell if the Zantac is helping, but now that we know she wasn’t eating enough before, we’re making a much greater effort to feed her as much as we can possibly get her to eat. We started feeding her from a bottle so we can better track how much she’s taking in. We definitely think she’s eating more now, but we’ll find out next Monday when they put her back on the scale. If all else fails, there is a surgery to correct Laryngomalacia. No one wants that, but in a way it’s good to know that this can be fixed permanently before it seriously threatens her health.

Through it all, Sam is still happy and content as ever. (Sorry if I’m overusing those words!) We have lots of new pictures that I’ll hopefully have up sometime this weekend. And we’ll continue to post updates on her weight, etc, so be sure to check back!

Sam had her first appointment with the pediatrician yesterday. She is almost back up to her birth weight, which is excellent. She still makes some funny sounds when she breaths (almost like a nervous giggle), but again the doctor found that her lungs are clear and that it’s just a little nasal congestion.

At home, Sam is showing all the signs of a happy, healthy baby. She is feeding regularly and has a big appetite! At night, she seems to be on a pretty consistent pattern of being up once around 2 AM or so and not again until around 5 or 6. When she’s awake, she is quiet and content most of the time. It’s fun to watch her look around and explore her world.

Mandy is also doing great. She is healing well and loving motherhood so far! Todd is easing back into his work routine gradually; he was at the office Monday after the doctor appointment, but is working from home for the most part the rest of the week. Rocky has adjusted incredibly well to the big change. He just doesn’t seem particularly interested in Sam. He still needs a little attention like always, but we haven’t seen any of the jealously we were worried about.