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!!
So I didn’t mention last time that when I weighed Finley at her Doctors appointment – she was actually down an ounce from her weigh in 3 weeks prior. No one (besides me) was worried.. but that doesn’t mean I haven’t been praying and trying to stuff her belly full. Her next weight check is this Wednesday as we have our home nurse stopping by. Please join us in prayers for a good gain this time… I am hoping for a pound (as always, being bold!).
Have just started planning Finley’s birthday party and I am just so excited to see this day come. Can’t wait to post photos from the landmark day.
AAAANNND… She’s crawling!! It’s just a few steps on her knees, then she drops to her belly for some commando crawling, then rolling, and/or moving back into a sitting position… She has a very unique way of moving around a room to get what she wants. But Finley never did do things the way she was “supposed” to…. why would she start now?
Finley had a great appointment with Speech Therapy at Emanuel on Friday and the Therapist said that Finley is right on track developmentally with all her feeding activity. She didn’t think the occasional gagging was a problem – maybe too big of bites, or showing us that she is done – and encouraged us to start with some finger foods (meltables) and thicker consistencies. She said Finley was a rockstar and she was super impressed! While I was at the hospital, I stopped by Lactation to get her weighed and much to my surprise she had a huge gain this week and had hit 18 pounds. Such a huge praise.
Her core strength is getting stronger and stronger each day- it is so amazing to see her be able to sit longer and longer periods of time. Now I am scared she may be crawling before we know it. In the next 5 months she will most likely start crawling and walking… this just boggles my mind. It feels like this first year is just flying by.
Please say prayers for Hollis this week – he is getting very close to being able to go home after a VERY long journey. He just needs to prove himself on full feeds by mouth for a few more days. Mama Kelly really needs to take her baby home and be with her WHOLE family again. We praise God for all he has done for Hollis so far and just pray that he can come home this week. AMEN!
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!
14 pounds, 14 ounces is what Miss Finley weighed in at on Thursday. She not only has gained back what she lost during her hospitalization, but she has completely caught up to her weight curve and might be a little higher than before! I can’t believe in about 2 weeks she will be 6 months old and we will be starting solids.
We had an appointment with Early Intervention on Thursday as well. This is a fabulous government program that Finley qualifies for on the basis of her condition (Having CDH which puts her at risk for delays). They do free assessments, so if you live in Portland and think your child might have a delay they will assess and if you qualify they do free in-home visits to assist. Since Finley has no delays as of yet – they will just monitor her. They will come to the home on a quarterly basis (and can increase visits if needed in future) and make sure she is meeting all her milestones. Finley is certainly under a magnifying glass – but the more people watching her does give me a certain amount of security that if something should come up – someone will notice if I don’t. I am also happy that they can do the hearing assessments (needed every 3-4 months) in home, so that is one less office visit I will need to take her to.
Yesterday, I spent some time with some amazing friends and through our discussions, it became clear to me that God had answered a prayer of mine in a most unexpected way. Before I become pregnant with Finley I had been praying for God to use me. I didn’t realize until yesterday how that prayer was answered – according to HIS needs. I know see how God has used me, and Finley – our story and this blog – to affect the lives of many people and I am just so overwhelmed by that. I remember the day I sat in front of this computer to start the blog and agonizing over whether or not to be very public with our story. I prayed to God to make it clear to me and over the days I just had a sense of peace about sharing our story over cyberspace. It has been such a blessing to me and I am humbled when people tell me that it has blessed them. Romans 8:28 says “We know that all things work together for the good of those who love God-those whom He has called according to His plan.”
We are blessed to be a blessing. Mike Tatlock, Pastor at Grace Chapel said that once and it has stuck in my heart.
Praises: For all the answered prayers for Finley up until now – I read back through the blog and was blown AWAY by the sheer magnitude of answered prayers along the way. I just pray now that she will not reherniate again.
Also praise for CDH buddy Hollis, who went home this past week!! Captain Awesomepants still needs our prayers- he is going back to the hospital in May for open heart surgery – so please pray he gains lots of weight and gets the strength he needs to rock another surgery!
Last but not least – last 2 days to vote: http://www.refresheverything.com/cdhfamilies Please vote!!!
We spent a lovely 3.5 hours at Emanuel this morning as Finley went to Diagnostics to get her ultrasound to look at her hernia repair and bile ducts, went to Surgeons office, waited, got sent back to Diagnostics since they forgot to order Chest Xray, back to Pediatric Surgery office, waited, then got to see Dr K. They then wanted to send us back for blood work, but I opted for another day. The good news is that everything looks normal on the hernia – no signs of reherniation. Her bile duct is still larger than the normal range – some debate on whether it was bigger than last time – probably the same size. That is something that long term could turn into something (I didn’t even ask to hear a list since I don’t need those things in my head) or could be nothing. They want blood work to check her billirubin levels to get a baseline so we will go next week for that, and then we go back again in 6 weeks for another ultrasound. Dr K said that when she is older and bigger he will do another type of scan that allows him to better map her anatomy, but for right now, in the absence of any changes or issues – we will wait and see. (And pray.) Everyone at the office just loves on her so much and she just loves the attention. When we are sitting in the room waiting, Finley is staring at the front office ladies to make them look at her and then she smiles. So all in all, a good visit and a huge praise to God! My daily prayer is that she doesn’t reherniate again and for her bile duct issue to be nothing.
She is up to 14 pounds 9 ounces today, so she is gaining great. Another praise.
I would like to ask everyone to go and vote in the Pepsi Refresh Contest – the Idea would give $25K to CHERUBS to help CDH families… all you have to do is vote for the idea and get others to vote too.. we are in 21st place and only ideas in the top 10 will get funding. I just think about how fortunate we were to live 15 minutes from a hospital with ECMO and we had the support of friends and family. Many others have to travel hundreds of miles to be at a suitable hospital – that drains finances on top of the cost of the hospital stay. Please vote!!!
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.