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.
Little Miss Finley is doing great…. I find it hard not to read into every little sound wondering if she has reherniated but I am trying to pray and let it go and trust in him that has been so faithful. Each day it gets easier.
Finley has been doing really well at home. She is eating a TON and seems in much better spirits again. The only scary thing was yesterday morning she either spit up or vomited (she was in bed and no one saw it) and it was yellow. I called the Surgeons and they said without any other symptoms they were not super worried, but it was unusual and to call them if it happens again or anything else comes up. I was a nervous wreck all day just watching her, praying that she was ok and that this wasn’t a sign of something serious. My worst fear was that she has already re-herniated and would need to go back again. Now it has been over 24 hours and she still seems fine. I am just going to pray for God to continue to heal her and protect her from any complications or from re-herniating again.. It’s all I can do. I can’t be afraid every day. But I think as a mother it’s impossible not to feel the fear. It’s the human condition. But in that fear, I do turn to God.
I discovered this family of a 3 year old CDH Survivor as I was googling reherniation http://ellawest.com/?p=7997 Please keep Ella in your prayers as she recovers from her reherniation repair yesterday.
For Finley being back home and having recovered so quickly (6 days post op!), that Dr Bliss was able to perform Finley’s surgery, and for Baby Hollis who is continuing to improve.
Thank you for continuing to cover Finley (and our family) in prayer and love.
Can I get an AMEN?
Yep… 1 week later we are home. Once again, I have to thank you for all the love, support and prayers from the bottom of my heart. Your messages and prayers helped me so much. My daily prayer will be that she does not reherniate again…. That this patch will be the last one she needs. Praise to God for countless answered prayers and for being with us.
You are forever faithful.
The slow approach to Finley’s feeds was making her very grumpy and she wasn’t sleeping well yesterday now that she isn’t as medicated and it is very noisy here. She would just wail after finishing her 1 oz because she wanted more. The good news was she was keeping her feeds down. Overnight it was awful….by 10:30 PM after finishing her 1oz and I think being in my arms with me all smelling like food – she was just crying hysterically. I asked if we could give her more and they couldn’t. They really wanted to make sure she was ok and didn’t vomit anymore. So after many days of not sleeping well, seeing my baby in pain, and once again seeing my baby starving and not able to feed her (even though every muscle in my body ached to just disregard the order), and feeling bad that I can’t stop my baby crying when we have another baby and his parents in the room. I lost it. I just started crying right along with her. And not just tears running down your face crying, full on sobbing. A nurse came in and asked if they could take her from me so I could rest and moved our roommates out. I was able to sleep a few hours and then took her back and got another hour. Someone came in to do something and woke us at 5:45 AM (and it was another hour until we could feed her) and I was not happy. Got her back to sleep and after this catnap.. I woke feeling much better. Then the doctors came by and gave their orders- she is doing good so if she can tolerate the next 2 feeds of 3 oz – we can go back to breastfeeding at will.
I am pretty sure the vomiting is because of her reflux, which seems to be worse right now.. hopefully as she acclimates being back on her meds, body heals, etc that will go back to where it was before. Otherwise, lots more smiles and happier baby yesterday.
I asked the surgeons about her risk of reherniation which is greater now. The highest risk is until she is 15 months old, but any time you have plastic in a body and the body grows – the problem becomes that plastic doesn’t stretch and grow like tissue. We double our size in those first 2 years of life, that is when the most amount of growth happens in the human body. He made an interesting comment that no one has studied reherniation in depth. That is shocking to me. Why isn’t this an important area to follow, study and make improvements? The only good news is that they are making good advances in tissue generation, so one day they will be able to grow diaphragm from a person’s own cells (about 10 years off maybe). My prayer is that if she does reherniate again, I hope it doesn’t happen until she is much older and they have this solution in place.
Thank you for all the uplifting comments and prayers yesterday – they really did encourage me. Here’s hoping that we will be home by tomorrow……
When you have a sick child you are over powered with feelings of helplessness… As parents, we are hard wired to protect our children. To comfort them when hurting, sad, angry. Feed them, keep them warm, take care of all their needs. Then something happens and you find your child sick and especially if they are very young and unable to communicate exactly what is bothering them – it becomes heartbreaking for a parent. You don’t know what to do to make them feel better. You don’t what is wrong. You play guessing games trying to figure out the whys and are completely powerless. I know I am not alone. Many others have walked this path and their words comfort me. I know I am not alone, as many friends are in the same place right now. Some with CDH babies, some with children battling cancer, some other medical issues. It is the scariest, worst thing that I think a parent ever has to face. So in the face of my powerlessness- I turn to the one that in control and wants to comfort us as his children. I am heavy of heart today… I know not going home today is not a setback – just a reminder that we can’t rush healing. But it doesn’t make it any easier.
After Finley vomited a few times after feeds yesterday, they put her on NPO (nothing) to let her stomach rest. They did let her have 15ml this AM and that seems to be staying put. We will resume feeding by bottle later today to see if a slower approach will be better tolerated. I just pray that the vomiting is just her telling us that her body wasn’t ready to eat normally yet and not that she has reherniated. That is the big, ugly fear in the back of my mind. The X-rays and blood work didn’t show anything alarming so it is very likely that the vomiting is just telling us to slow down. If she continues to vomit through, they will need to do ultrasounds for a closer look. She really is only between 3 and 4 days out from a major surgery – I need to relax and not worry about the worst.. but that is not my nature. I worry. I am a worrier. Pray for Finley and for me today. And pray for all the other parents in hospital rooms or elsewhere worrying about their sick kids. May God take the worry and replace it with the peace and calm. If I didn’t pray right now, I would go absolutely crazy. It is the air I breathe.
So that was your glimpse into my thoughts this morning.
There is talk if she does really good today we may be going home tomorrow!
7:30 PM Update: Miss Finley had a pretty good day. Is off oxygen, down to only strong Tylenol for pain. Appetite not quite back to normal (nursed once, but seems to prefer bottles again… only taking 1-2oz ). She did vomit this afternoon and has pretty painful gas- please keep up the prayers that it isn’t anything concerning… plan is to see how she does overnight… I am in no rush.. just want to be sure she is fine and ready.
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!