7 weeks, 3 days old...

It's been a rough five weeks for Olivia and us. At three weeks, right around the first of September, we started noticing that she was having issues associated with spit up that didn't seem normal. On the second of September we had an appointment with the pediatrician and Olivia had jumped from 4lbs, 8oz to 5lbs, 4oz, so the doc had us take her off of Similac Neosure (which she'd been on for preemie weight gain). We continued to use it for a couple of days to finish off the bottles we had and by the last night on it she was projectile spitting up at least 2 tablespoons full. The next day we switched to Similac Advance Early Shield (to provide her with the immunities she needed for being a preemie) and we also put her on Gripe Water. It seemed a little better, but it seemed like she was still having some issues. I called the advice nurse and they told me what she was experiencing was normal. We continued on the Early Shield until she was 5 weeks, 1 days old. The Early Shield began giving her horrible gas to the point where she was up screaming most of the night. The gas drops and tummy massages didn't seem to help, so we moved her to the Enfamil Gentlease powder. One bottle down her gas was completely gone, but suddenly the spit up issue got worse. And she wasn't even really spitting up, but the spit up would make it into her throat and then it sounded like she was swallowing it back. At her 1 month follow-up with the pediatrician on September 18th I brought up that she seemed to be having issues and the doc recommended Enfamil AR or Nutramigen. The Nutramigen was so expensive we went with the AR but had to blend it with the Gentlease so her gas wouldn't come back. It seemed to work okay, but her symptoms persisted and the AR also gave her horrible constipation. She began screaming every time she had to go to the bathroom. We added 1 tsp of Kara Syrup (3x daily) and some water (1-2 times daily) to help with the constipation (it worked ok).
At this point I began doing more reading online and started noticing that a lot of things she did were actually symptoms of Infant Acid Reflux (Gastroesophageal Reflux Disease or GER/GERD) and not just normal baby noises. Her grunting, groaning, arching of the back, red squished up face, coughing, choking, gagging, extending her tongue in and out of her mouth, frequent hiccups (wet)...all are symptoms. As the days went on and she got used to the formula, her symptoms seemed to worsen. She went from making noises throughout the night and then falling back into a deep sleep, to choking on her spit up and swallowing it back down all throughout the night. At just after 6 weeks old she began sleeping on me most of the night. At this point we'd been feeding her upright and making her sleep upright for at least 2 weeks and we weren't sure what else we could do. I called the doctor and she called in a prescription for Cimetidine (0.3ml every 6 hours) but told me it was Prilosec. For a week I thought she was on Prilosec and was dissappointed that it wasn't working. At 6.5 weeks we switched her to Similac Alimentum to see if it was possibly an allergy or something in the formula she was sensitive too, but she didn't take well to it and her symptoms became more severe. However we did blend it for a day with the AR and she did great and then took a turn for the worse. I called after she'd been on the Cimetidine for 5 days and we hadn't seen any results and all the doctor did for us was up the dose by 0.1ml. Tired, frustrated and unsure what to do I called and requested to see another doctor.
On September 29th at 6 weeks, 6 days old Dr. Gereb was a welcome change. She really wanted to help and was willing to work with us to get her better. She told us to discontinue the Alimentum and AR and to put her on Gentlease with rice cereal and prescribed us Reglan (0.4ml every 4 hours) to take with the Cimetidine. She also told us to use Miralax 1-2 times a day (1/4 tsp) to help with her constipation (brought on by the AR formula). Within a half hour of her first dose of the Reglan she seemed to be so much better, but by 11pm that night, the side effects we'd been warned about started happening. She started flailing around and freaking out like she was hopped up on coffee. I went on to do further reading and found out that Reglan has been black boxed by the FDA for all of the permanent effects it has on kids (specifically involuntary movements - like flailing around) and there was pending litigation against the drug. After two doses we pulled her off. On just the rice cereal and Gentlease Olivia had the worst two days of her life. She hated the rice cereal, didn't want to drink it, and it was a nightmare to get out of the bottle (it clumped so bad we needed 6mo+ nipples). I pulled her off the rice cereal only 36 hours after she'd started it, began giving her the AR and Gentlease blend again and left the doc 3 emails.
At this point I started becoming a familiar "face" on the Reflux Rebels message board on babycenter.com. What a life saver these moms are! They have one or more children with GERD and all other related diseases (MSPI, colic) and seem to know more than both of Olivia's doctor's know about GERD, medications, etc.
The doc called me first thing in the morning and told me to take her off the cereal (already done) and the Cimetidine (useless anyways) and to keep her on the AR blend with the Gentlease and that we'd move her to Prilosec (compounded, 0.9ml 2x daily). I posted on my message board and was quickly told that the AR formula shouldn't be given with the Prilosec because it breaks down the drug. Nestle Good Start formula is what was recommended with the Prilosec. So at 7 weeks, 1 day she began Good Start Gentle Plus ready to feed formula and Prilosec. The doc said it should take a few days for the meds to work, but most of the moms I've talked to said it could take up to 2 weeks. The mom's also told me that we should give the medicine a half hour before for it to be more effective. The doc said to also give her Mylanta before each bottle to help soothe - this too breaks down PPI's (Prilosec) and can't be given within 4 hours before or after the meds.
At 7 weeks, 3 days our journey is still very difficult. Her symptoms are pretty severe. She fusses or cries a lot because of the pain or because it continues to come up her throat every few seconds (she'll swallow it and then it'll come right back up). She gags a lot and can't sleep in or on anything but us and her grandmas. It's beginning to come up her throat while she's trying to eat, so at 6 weeks she was eating nearly 4oz and now at 7 she's back down to 2-2.5oz (3 at a good feeding). She doesn't sleep soundly hardly at all anymore and she used to stay awake for 3-4 hours a day to just take in the world around her...now when she's awake, she's choking back acid or she's fussing and crying. Maybe 5 mins a day is she awake and content. If we put her down she gets anxious and upset, therefore making her reflux worse and then she's completely miserable until we pick her up again.
At 7 weeks, 1 day I let her sleep on her tummy most of the night (as scary as that was) and she did great, but then at 7 weeks 2 days I tried it again and she was refluxing all night long and in pain, so she ended up sleeping on me all night. I'm determined to keep her on the Good Start and Prilosec for 2 weeks to see if there's an improvement...plus I'm out of options by way of formula, unless we get a prescription for Neocate ($130 for 4 14oz cans), which the doc doesn't want to do just yet. The doc got us a referral to a GI doctor in Panorama City and we go see him on October 8th.
The emotional part of this has been harder for me than the physical part. Obviously I'm exhausted because I take care of a "sick" child most of the night and all day every day. I don't even get to shower most days until Jeff gets home. There's nights when I just cry uncontrollably because I can't do anything to help her and I'm afraid that we'll never find the right combination of meds and formula to make her feel better. These moms I talk to, it took some of them 8 or 9 months before they were able to find the right combination to make their children better. I try and stay positive that she doesn't have a deeper medical issue and like a lot of children with GER/GERD, she will grow out of it by 6-12 months. But in the past 4-5 weeks I've done countless hours of research and put her on her 7 formulas and three medications and at this point it's really hard to have hope. My mom keeps telling me not to give up hope and I don't unless I'm really down and at my lowest. What makes me cry the hardest is that at 7 weeks she should be exploring the world around her and learning how to play and except for poopy diapers, the occasional gas pains, or being hungry, she should be a happy baby. She's not happy and she can't do things normal babies do. We can't even take her anywhere or do anything unless we wait until at least a half hour after she eats (for her food to go down) and come back before her next feeding, and she still has flare ups the entire time we're out. She can't be fed out because she needs to be sat up and held completely still. I can't put her on her back to play in her Einstein Gym or to lay on a blanket at the park. She should be sleeping 4 hours between feedings (and so should we) and getting ready to transition to her crib in her own room. All of this just makes me bawl my eyes out. I naively thought that if she was born healthy then she'd be a healthy baby. I never thought about the "what ifs..." (partially because you make yourself crazy doing so) but now I'm thinking I should have. No one could have prepared me for how hard and challenging the past few weeks have been and how hard the next few weeks, months, maybe even years will be. She should be able to spend a few hours a day awake and content with playing or looking at things and she can't. When she's awake, she's miserable, when she's asleep, she's pretty miserable too. I can't even set her down on the floor on her blanket for 15 mins so I can eat dinner. She just starts choking and gagging. Dinner is a process every single night.
I think back over those 2 weeks after we brought her home from the NICU and about how hard I thought things were back then. How getting up every 3 hours for a feeding was difficult. I should have appreciated it more back then. I should have taken everyone's advice and slept when she slept. I can't sleep anymore when she sleeps because she's always sleeping on me and never soundly. Those days when we could just feed her and put her back down to go to sleep...what is that like? What is it like not having to sit her up for at least a half hour (especially in the middle of the night) and to just put her back down to go to sleep? What's it like actually getting an hour or two per night? I sleep in about 15 minute increments because when she falls asleep she's okay for about 10-15 mins and then starts grunting from the pain. What's it like to be able to just take your baby somewhere and not have to worry that it's getting close to feeding time and it's going to be too difficult to feed her and keep her sitting up? I can't dwell on the fact that she's not a normal newborn, but when I'm at my lowest, it just makes me feel even more down. I don't think I've felt this depressed, this defeated, this sad in at least 10 years.
As with all changes with Liv's food and meds, I'm staying really hopeful and really positive, but sometimes I just feel like saying "well nothing else has worked, this probably won't either!" We're 3 days into this and I say with lots of hope that this time next week we'll see at least a little bit of a difference.