Well- we had a gain…. not quite what I was hoping for, but we have about 9 ounce gain since the last weigh in which puts her still in the 30% percentile for weight… I really shouldn’t complain since I know there are other CDH babies struggling to even be on the curve. So I will take our 9 ounces and keep trying to fatten her up even more! I am thankful that we do have a gain this time and just pray it continues. Next month we have Finley’s one year check up with the Ped and probably another ultrasound/xray for the Surgeon… oh ya… and a HUGE celebration!!
Finley turned 8 months on Tuesday. Four months until her first birthday. I am so excited and plan on having a HUGE celebration. To celebrate how far we have come. Finley is doing great – each day she is getting stronger and is able to sit for longer. Last week she couldn’t even make it to one minute and yesterday she sat for at least five. In her own time. It’s always been that way on certain things. The only area we are having some small delays is gross motor skills – but in the grand scheme of things – they aren’t big delays. We only notice them due to the intense scrutiny of an army of development specialists all watching. She is doing awesome on fine motor skills.
Tomorrow we have an appointment for a side chair swallow study with speech pathology to see why Finley is gagging and coughing some during feeds/meals. It’s not all the time, but enough to have them check. I can’t quite tell if it is a problem with texture, or if she collects too much in the back of her throat before swallowing… so this study will help see what is happening. Her follow up with Pediatric Surgery is on the 26th and I am looking forward to the X-rays and Ultrasound to reassure that she has not reherniated. It seems like several CDH babies have reherniated between 8-10 months.. so I am trying not to obsess too much. It’s a daily exercise in faith and trust. I guess that is also how you would describe our journey.
On Saturday, Finley celebrated her 6 month birthday. Finley celebrated with her first “solid” and throughly enjoyed her oatmeal. She did amazing at eating and did better than Rowan did with her first meal (in terms of swallowing rather than pushing out). She has been eating her full serving and I am excited to start introducing veggies and fruits! As of last Wednesday, Finley weighed in at 15.14 (so she is probably over 16 pounds by now) and she is now in the 50% percentile for weight and she is 26 1/4 for length. She is growing so well I try not to worry that she will reherniate from growing too quickly. I just pray every day. Rowan was so sweet and she told me yesterday that she didn’t want Finley to go back to the hospital ever and that she would pray and I should pray too. I finally uploaded my photos from the last 2 months…. enjoy!
My little peanut is 5 months old today! I am so thankful that we are marking this important date at home and not in a hospital. I am so thankful to have my precious baby at home with us. She weighed in at 13 pounds 11.5 ounces yesterday – so she is back to the weight she was at the Wednesday we were admitted to the hospital. Since the surgery she actually nurses longer, so I think hopefully, she might gain even better now. Each day it is getting easier to NOT worry and obsess over reherniation. If it’s going to happen, I can’t stop it. I just need to enjoy each day we have at home and am thankful for where our journey has gotten us. Last night I was sitting on the couch with Finley asleep on one arm and Rowan nestled in the other arm as she watched a cartoon. I looked down at both my sweet girls and felt complete.
1 oz breast milk in at 6:15 PM
Code Brown at 6:40 PM!!!!!!!!!!!!! (I did take a picture since there has been so much talk about this and anticipation. One day she will be a teenager and hate me- but I will spare all of you!)
UPDATE 8:00 AM 1/2/11 – She is up to 2 oz and doing great!
Since last weeks lactation/nutrition appointment I have been giving Finley less bottles and tried the nipple shield again and for whatever reason – there are times during the day she prefers that. Previously I would have to give her a bottle when she didn’t seem to be accepting the breast. I am very happy to have problem solved that issue.
She was 10.8 last Tuesday and is 10.15 today – so almost an ounce a day in a week. I am SOO happy to be just breastfeeding now and not have to breastfeed, give bottle, and then pump. And then do dishes. With a toddler that has been overwhelming to try to do that every 2-3 hours. So wahoo!! She is gaining enough that the nutritionist said that I don’t have to give any fortified bottles, just if I do give a bottle I should fortify since I have it – but I can 100% breastfeed if that is what she wants. She will just get a bottle if I am not here. Finley just continues to amaze everyone. Though, Nurse Nan did predict this. 🙂 I am so thankful to the Doctors, Nurses, and Lactation Counselors that helped me be successful at breastfeeding a CDH baby.
Quick update.. Finley has been making some good progress on her feeding… it’s funny how when I am not praying about something as much and am “working on it on my own” things seem to stall, but as soon as I give it to God and pray about it more – things start to happen.
Finley took 35ml by bottle at 4:30pm, 40ml by bottle and 10+ml by breast at her 8:00pm feeding, and then at 10:30pm took 65ml by bottle!! Apparently, the nurse made a mistake when inputting the duration on the feeding pump and set her remaining 40ml from the 8:00pm feeding over 30 hours, so by 10:00pm she hadn’t gotten much of it and was STARVING! Hunger is a powerful motivator. Then this morning at 11AM she took 40ml by breast!! Making some phenomenal progress!! I am so proud of Miss Finley!
They have started weaning her Sildenafil and she may be off that (if her body allows) by the time we go home. If she shows any change in her vitals, they will back off or stop the weaning.