Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Upper GI test February 25, 2011

Filed under: Lila,Updates — Aimee @ 10:53 pm

I took Lila to the gastroenterologist today to see if I could find out anything about why she’ll only eat when she’s asleep. The good news is that Lila has gained six ounces in six days. That’s twice as much as she had been gaining before we started waking her up at night to eat. Another bit of good news is that the scale I bought last week matches up with the scale in the doctor’s office. I feel good about having a scale to check her progress on my own versus having a nurse come every week.

We didn’t get any answers but we have a plan. First, we started Lila on anti-reflux meds again today. She was on them when she came home from the hospital. We’re trying a different medication and a bigger dose to see if it makes a difference. We don’t know for sure if Lila has reflux (every baby has SOME reflux), so we’re also going to have an upper gastrointestinal test done on Thursday to confirm this and any other issues that might be going on. We’ll take Lila into Children’s Hospital very early in the morning and we’ll give her a bottle mixed with barium. They’ll use x-rays to take pictures of her stomach while she eats to see what’s happening. Then we’ll follow up with the feeding clinic at Children’s at some point to see if they have any answers for us. We are hopeful that Lila grows out of this and it’s nothing serious. The doctor today did say that many babies, even those without the problems that Lila has had, will only eat while they sleep.

In the meantime, our lives revolve around Lila eating. We sometimes spend a half-hour calming her and another half-hour feeding her. It’s safe to say we spend 8 to 10 hours a day just working on feedings. It’s frustrating and exhausting. I rock back and forth in the chair, sing lullabyes, stare at a blank wall and count to 10 over and over again. Feeding has been the biggest source of anxiety for me since the day Lila was born. I’ve always worried that she would be a toddler walking around with a feeding tube. Not that there’s anything wrong with that — feeding tubes save many babies’ lives — but it’s not what you want for your child. Eating is a basic human necessity to survive. We celebrate with food. We gather with family around food. We plan our days around food. How awful to sit down to dinner every night and your baby cannot eat what you eat. I’m sure I’m worrying for no reason, but I need to follow my instincts and see this thing through.


Baby Beluga February 20, 2011

Filed under: Lila,Updates — Aimee @ 2:03 pm

I took a bath with Lila last week for the first time and now I need an intervention. As the clock ticks toward 6 p.m. all I can think about is my next fix complete with bubbles, dimmed lights and one seriously happy baby. Ok, so I don’t bath with her every day, but almost. Lila loves her baths anyway, but now that I’ve joined her she looks forward to them almost as much as I do. Last week, she laughed for the first time — in the bathtub. Melt.

Baths aside, Lila is doing quite well. My only complaint is that feeding her continues to be a constant struggle. Some days are better than others, but overall, she’s a very difficult baby to feed. At her last appointment, the doctor noticed she was beginning to fall off of the growth curve for weight, so he suggested we wake her in the middle of the night for a feeding. How ironic that we have a baby who sleeps through the night, yet we have to wake her up. Babies are “supposed” to take in 2.5-3x their body weight. For Lila, that would be 26.25 to 31.25 ounces. Since we’ve been waking her, she’s still only taking in 22 to 27 ounces a day. Not bad, but not great.

My main concern is that Lila prefers to be asleep or nearly sleeping for all of her feedings. If she’s hungry and I try to feed her, she arches her back and SCREAMS! So I have to calm her down, give her the pacifier and wait until she’s nearly asleep to give her the bottle. It’s quite the bait-and-switch process. The doctor knows about my concern and says this can be a sign of reflux, but not to be concerned, every baby has some reflux. I remain worried and concerned. I am considering taking her to the feeding clinic at Children’s Hospital, but will probably wait until her six-month appointment to see if things improve and see what her pediatrician recommends.

I also went out and bought my own baby scale. A home health nurse showed up yesterday from Children’s and her scale showed that Lila had only gained 3 ounces in 8 days. Normal weight gain would be 4 to 8 ounces in 8 days. I’m frustrated that every time a nurse comes, it’s someone different with a different scale. I also don’t think it’s necessary for these nurses to continue coming once-a-week just for weight checks. Yesterday I had to ask the nurse to put on gloves before administering Lila’s Synagis shot. Some of them lack the kind of professionalism you want to see in someone caring for your child. They wear jeans instead of scrubs. Yesterday’s nurse wore her hair long with a dirty hair tie wrapped around her wrist and a dirty purse slung over her shoulder as she examined my baby. I guess I could bring up my concerns to the hospital — and probably will — but instead of being the mother who’s constantly complaining about these things, I would rather take matters into my own hands, hence the baby scale purchase. Now there’s no need for the weekly nurse visits, unless I request one. By the way, my scale showed a 5.5 ounce increase in 8 days, which is well within normal limits.

These feeding issues drive me crazy some days. Feedings are supposed to be enjoyable by both baby and mom. Half the time they are not and I get frustrated. I cry. Lila gets frustrated. She cries. This is where those baths come in handy. We both forget about that damn bottle for a few minutes and enjoy our time together in the warm water. I think we have a water baby on our hands, folks. Oh, the irony. The baby who grew inside me without amniotic fluid loves to be surrounded by water. Go figure.

Time for another bath …


Finally, tube-free February 1, 2011

Filed under: Lila,Updates — Aimee @ 11:27 am

When we brought Lila home from the hospital Nov. 21, we were told she’d likely be on oxygen the rest of the winter. I’d accepted the inconveniences of having a baby attached to 50 feet of tubing that wound through the house like a long stretch of hose in a burgeoning garden, constantly getting caught up on one thing or another. The dogs accepted the tubes, too, tripping over them on their next quest for a treat or drink of water. So imagine my shock when the doctor called Friday morning to say that Lila no longer needed the supplemental oxygen.

We put Lila to bed Thursday night with a pulse oximeter attached to her foot with two little sensors reading the level of oxygen in her blood. A monitor showed her oxygen concentration (85 to 100 percent is good) and heart rate, and I watched that thing like a hawk. We had a tank of o2 sitting nearby and in case she dropped below 85, an alarm would sound and I’d hook her up. Every time I woke up in the middle of the night, which was often, those blinking red lights gave me a sense of security and pride. There, for the first time, lay my baby breathing effectively, efficiently, in her deepest sleep without any support.

After waking up in the morning it was clear to me she’d passed her overnight sleep study. Now what? I thought we’d have to wait a week until Lila’s next appointment with her pulmonologist to remove the oxygen. Maybe he’d want to keep her on just in case or during certain times of day? I made a call and much to my surprise the doctor gave us the okay to remove the oxygen for good.

Finally, a wireless baby! We had a great weekend carrying Lila around the house without any worry about making sure that the tubing was following behind. I was on edge all weekend, however, still in disbelief that my 31-week pPROM baby no longer needed oxygen support. I slept much more restlessly than before, but every time I’d check on her, there she was sleeping peacefully with very even breaths, pink as ever.

I don’t want to make it seem like having Lila on oxygen was the worst thing in the world, because many preemie parents have to do so, especially those who suffer pPROM. If you have to have your baby home on oxygen, it’s just something you do, and to be honest, it really didn’t bother us. It’s all we ever knew. Many babies with serious lung problems like Lila need supplemental oxygen well into their toddler years. I knew this could be a possibility for her, so I’m so very thankful that her lungs are improving and growing that healthy lung tissue that we dream of!