Thursday, December 19, 2013

Failure to Thrive :(

My little Lucy is still not gaining weight well. After our appointment on December 2nd we started her on reflux medication. We were giving her Prilosec ,and within a few days things definitely improved. I wasn't a huge fan of this medication because it obviously contained red dye, but I was glad it was working and she was eating well again. Within a week we were running low on the medication. In an effort to avoid the red dye I brought the prescription to a different pharmacy that was able to compound the medication. We picked that up last Tuesday and started it on Wednesday.

Last week Lucy started to come down with a little cold. At first I thought she wasn't eating well because she wasn't feeling well. I also noticed that Clara wasn't eating as well but didn't connect it. I thought maybe she had been going through a growth spurt previously and just didn't need as much suddenly.

By Saturday I put the pieces together. Clara was pulling off during feedings and spitting up more. Her fussiness also returned. Lucy started to arch and cry during feedings and then refusing to eat beyond 10 minutes. It appeared the reflux was back and the new medication, despite being the same thing, wasn't working. I called the first pharmacy with the medication that had red dye and they told me we had a refill of the medication but that it wouldn't be available until after 5 on Monday as it needed to be specially ordered.

The weekend was really rough and I was so grateful W was around to help. On Monday things were horrible with Lucy's feedings and I just told myself I needed to make it to 5:00 and I could pick up the prescription. I knew that one worked and that once I started to give it to her things would improve. Even though Clara wasn't eating as well, her behavior wasn't as extreme and she persisted with feedings despite crying at times and taking frequent breaks.

Monday night I made it to the pharmacy and was told there was no prescription to pick up. When they told me that I stood at the counter and asked why as my eyes welled up with tears. The girls weren't eating or sleeping well and were both incredibly fussy. It was obvious they were both in pain.

The pharmacist looked up the order and under that prescription it said it wasn't available. She was unable to tell me when it would be available. Incredibly upset we spoke and she looked through the prescriptions. In mid November our pediatrician had called in Prevacid as we talked and I wasn't wild about the red dye. I had never filled it. The pharmacist told me it was equally strong to the Prilosec so I decided to give it a try. A $50.00 co-pay later I left the pharmacy with the new prescription in hand and renewed hope.

Tuesday the home health nurse came again to weigh the girls. We weighed Clara first and she had gained 7 oz in the past week, a great gain. I nervously put Lucy on the scale and my heart sank when the nurse told me she had only gained 1 oz in the past week. We talked about different ideas to help with her feedings but I was so discouraged when she left. After I thought about it for a few hours I called the pediatricians office. After speaking with the nurse she said the dr wanted to see her so I scheduled an appointment for yesterday. Both girls continued to be completely miserable. It was rough. I went to bed feeling as exhausted as the first few days at home.

Yesterday we saw the pediatrician. They first weighed her which was the what the nurse had her at the day before with an extra half ounce. Then we waited for the dr to come in. We first talked and told him about the history with the reflux medication. Then he examined her. He said she looked healthy and not like she was sick or malnourished in any way. She smiled a big gummy smile up at him as he was looking her over. We then made a plan. The plan was to add human milk fortifier to pumped milk a couple times during the day. This would up the caloric content of the breastmilk from 20 calories per ounce to 22. We would also give the new medicine some more time to work as she had only been given 2 doses at that point. He also wanted to send her for basic blood work to be sure he wasn't missing anything obvious. We will return the first week in January for a well child visit and recheck her weight then. If at that point she still isn't gaining he would do more involved blood work including a urine sample. If everything from that comes back normal and she still isn't gaining he will send her to a GI specialist.

It eased my mind that both he and the nurse the previous day reassured me of how healthy she looked. She's doing great developmentally and is actually more advanced than her sister physically. Lucy loves tummy time and holds her head so high during these times. Clara still prefers to cry with her face in the blanket. I know she looks fine, but it still breaks my heart that she is now being considered a baby with failure to thrive.

Yesterday and today her feedings have been going really well. She's cried and arched a few times after meals, but she's eating for so much longer. I tried to go to a pharmacy to get the fortifier, but they told me they were unable to get it. The dr warned me that might be the case. I was told if I was unable to get it that they may have to order it for me.

I'm still not sure how I feel about the fortifier. I will do whatever it takes to get my little girl gaining weight, but I hope that is just getting her to eat better. I'm still waiting on a call back from the LC at the NICU who has helped me problem-solve so many other issues in the past. For now though I'm just feeling more positive about her reduced reflux symptoms and longer feedings. I hope we are on the road towards making progress with her weight gain. Her sister's amazing growth on my milk is testament that great gain can be achieved on my milk alone. It's always nice to have a "control baby".


  1. Hugs! I've been dealing with what I think is a resurgence of M's reflux, too. She's on Prevacid, but I had to call the doctor this week to ask if I could up the dosage, as she weighs considerably more now than when it was first prescribed. I can't tell if it's really making a difference yet -- it's awful when they're clearly hungry but can't take more than a couple of swallows without crying! At the end of the day yesterday, I seemed to hit on something that helped: I sat on the sofa (or bed) with my legs stretched out and leaning back slightly. Then I put M on my lap, leaning back against my chest, and gave her a bottle that way. It was a little awkward for me, but it kept her body stretched out -- she seemed much happier! I know you're doing more BFing (I've been giving a lot of pumped bottles during the day), but it might be worth a shot. I'm hoping it continues to work for us today! It sounds like both your girls are happy and otherwise healthy, so I hope Lucy can catch up!

  2. Hang in there hon - it sounds like her FTT issues are probably just a result of the med switch and not a long-term indicator of how BFing is going for her. I hope that your next check up shows them both growing strong and healthy!! You're doing amazing!

  3. I am sorry you are dealing with this stress but it sounds like both girls are doing wonderfully overall! Hang in there and hopefully you are on the right path now!

  4. Oh so sorry to hear that but hope this medicine works and her weight picks up soon!

  5. Awww I hope things start looking up for little miss lucy! :( Watch she'll be a chunker in no time!!! ;) Hang in there momma!

  6. Just a thought, but if you'd prefer not to use a bottle (and the fortifier), perhaps try using a supplemental nursing system when you're nursing her, to get additional milk into her. Also, has she been checked by someone who is knowledgeable (most pediatricians aren't) for a tongue and/or lip tie. She seems to have many of them symptoms. There's a great fb group (here's the link where you may be able to get some additional info as well. Good luck mama!