Finley Anabelle Dooley, LCDH Survivor, is going home after 49 days in the NICU!! One day short of 7 weeks. So thankful and joyous!! Praise God!!! Longer post to come – eventually. 🙂
NG Tube out as of yesterday and as long as she continues to take all her feeds by mouth and keeps gaining weight, then it stays out!! (If you are keeping track that would also mean 2 out of 3 things are being accomplished…) Keep praying that we will be home within the week!!! Some new photos of Miss Finley!!!
So what does Miss Finley need to accomplish so that we can go home? There are 3 things on our “checklist.” She needs to;
1. Be consistently gaining weight.. So far Finley had been a little in consistent with some gains, so losses – and they want to see 15-30 gram increases each day.. You can imagine given the first few weeks so much of her calorie intake had been going to healing and her breathing – so it is understandable that she wasn’t gaining a ton of weight – add to that the fact that she was behind on her growth from being on TPN for 4 weeks (IV nutrition)… She has been gaining for the last few nights so she just needs to keep that up.
2. Be taking all her feeds orally (bottle or breast) for a couple of days… She is getting VERY close on this.. She took 95ml yesterday morning, 75ml this morning and now is averaging 60s-80s for her bottle and breastfeeds.
3. Be done with Sildenafil – she will be completely weaned by Monday and they will want 3-5 days post to make sure that nothing changes in her oxygenation which would signal an increase in her pulmonary pressures (PH). If there were any changes that just means we would keep her on the drug for some period of time post-discharge. So not the end of the world – but it would be nice not to be on any meds (besides her reflux medicine, Prilosec).
I am so amazed at how far she has come. I had my 6 week follow up appointment today with my wonderful Perinatalogist, Dr Thomas Lee and as I was saying goodbye to my amazing and sweet nurse Theresa, I was struck by the memory of the first time we came to NW Perinatal. Memories of walking across the parking lot with our ultrasound tech to get the diagnosis of CDH confirmed. Being told that Finley only had a 40% chance of surviving. Sitting in my car and calling Rachel and crying. Rachel calling me back a little later and telling me she thought that her husband knew a Surgeon that was one of the best for handling this type of condition, a Dr Bliss. Then being brought back to this moment where we I am showing off pictures of Finley and we are so close to bringing her home – our baby that was given a very scary diagnosis but she is doing amazing. I just thank God for being with us through every step of this journey, as he will continue to be. I was reminded in a book I was reading that Emmanuel means ‘God with us.” How appropriate that name is for this hospital.
She just took 58ml breast and 18ml bottle – so it was her first feeding entirely ORALLY! They didn’t even gavage the 8ml difference since we were so close!!!
She will be weaned from the Sildenafil by Friday – pray that there are no changes with her PH and that she continues to be able to take her entire feedings by mouth – hopefully less than 2 weeks now and we will be home! We have come so far! Praise God! Sorry for all the exclamation points, but I am excited and happy!
That’s all I have to say! Baby Girl is doing awesome!!!
So I have some bad news for many of you… (Thomas Montgomery, I have stolen some of your post because said it perfectly on your blog, I hope you don’t mind. 🙂
As you all know, Finley has an underdeveloped lung so she will be more prone to respiratory illnesses. If she catches a respiratory illness, it would be more dangerous than if a healthy kid got sick. We have been told to avoid taking Finley out in public until the Flu season is over, which unfortunately doesn’t end until April 2011. Flu season may not have even started yet, but she’s still going to be in the hospital for a few more weeks and then when we get home we still have to be very cautious about her health, and not exposing her to harmful germs too early.
So basically this means that on doctor’s strong recommendations, she isn’t to go out into the public, especially crowded places, including the supermarket, social events, and even to church. Basically anywhere where she would have a higher chance of getting a respiratory illness from somebody else. So she’ll basically be living in a bubble for a while. Sad, but at this point we would hate to jeopardize all the progress we’ve made with an illness that would compromise her already fragile lungs.
Sorry to be strict, but we are going to have to be this way to protect her. When Finley comes home… Absolutely nobody who has even so much as the sniffles will be allowed to visit. If you even think you might be getting sick, or have been around sick people – please stay away. Any visitors will have to “scrub down” before coming into the house and only family will be allowed to hold her right now. We will be limiting the amount of visitors we have at the house, so if we don’t want to you to visit, it doesn’t mean we don’t love you, we just need to limit Finley’s potential exposure to germs. We know no one would knowingly come over sick, but we all know that we are contagious before we exhibit symptoms. If we sound overprotective, it’s because we are overprotective, and I hope nobody gets offended. Daily, the nurses bring up not taking risks with Finley and how the simplest cold could wind us in the PICU. Even though Finley is having a miraculous recovery, she is still considered to be a sick baby.
I wish it didn’t have to be this way – there is nothing we’d love more than to show her off to everyone we love that has held her so closely in prayer – but that time will come. On a happy note – how awesome is it to be planning and thinking about her homecoming??
A good feeding day – she took 50ml from Jon this AM, and then 32 and 34ml for 2 of her breast feedings! She is being more consistent which is great!
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.
Yes, we are at the annoying part. 🙂 Now all we are really working on is feeding. She is making small improvements but still hasn’t taken more than 25ml by breast or bottle. 5:00 AM UPDATE: Right after I posted this I spoke with our night nurse Rachel and she said that Finley took 46ml at her 2:00 AM feeding – wahoo!! A new record! Half of her 81ml feeding.
I spoke to the surgeons yesterday and we won’t need to talk about a G-tube until we are at this for a month post surgery. We also have the option to go home on the NG tube but we would need training on how to drop that since there is a risk of aspiration if you place the tube in the lungs instead of the stomach. Depending on how she is doing by Monday, we may start with fortifying my breast milk to try and help her gain weight and get stronger so that in turn she could have more energy to eat more.. Last weigh in she was 9lb 8 oz. She got her first bath Tuesday night and she did NOT like it at all – but I got to see her without any wires and tubes attached to her and it was great to see her like a regular baby!
Please pray for her continued healing and recovery and her to start taking more food, and for the PH to stay away (scary that there is this medical issue out the lurking that could come back anytime.. but I will not be afraid of it – I will trust God). I praise him for all his has done already and just pray for the day when we can all go home as a family.
Finley is now breathing 100% on her own – bye-bye nasal cannula! It is so amazing watching my sweet girl breathe without any assistance. They also discontinued her TPN (IV nutrition) and will be taking out her PICC line today! That means a real dunking bath! So excited! She is up to 80ml which is mostly going through the feeding tube – we are still in the 20s for breast feeding and she did take 20-25ml by bottle the other night. She is more interested in breast feeding than the bottle, so the nurses are wondering if she may be the first baby they have seen in a LONG time go home doing 100% feeds by breast. If she hasn’t progressed by the end of the week, we will have to talk about scheduling a date for a G-tube so that we could go home and continue working on getting her oral feed volume at home instead of having to stay at the hospital. I am hopeful we could be home in 2 weeks.
Will post some tube-free pictures soon! Thank you so much for the continued prayers. I am so thankful to God for answering them and will be every day for the rest of my life!