So let me first start off by saying that God is so so good! We can’t believe what has truly happened to baby girl, and all the healing that has taken place.
If you don’t remember my first post, explaining her Retinopathy of prematurity, this post should help you understand it a little bit more.
We have brought baby girl to our church for them to lay their hands on her, to pray over her healing, all throughout her body, and to restore her body from within. God just keeps blessing her with all the little things, that are going to make such a big impact on her, as she grows.
It’s amazing. And we will have to follow up with her eye doctor in 1 year, and from there, they will test her eyesight and see where we go from there!
Thank you for all the great prayers, and the goodness from the Lord! Hopefully her vision will continue to get better, over time! 🙂
After 5 doctor visits, SHE HAS GRADUATED!! (below is a picture of her eyes and the results from the zones and stages)
I can’t believe baby girl has been with us for an entire month already! To say it’s been a whirlwind, is an understatement.
She seemed so fragile when we were taking her home from the NICU, not really knowing what to expect, especially in all that she has been through in her short 4 months of life in the hospital. Now she seems so much stronger, more vocal, more awake then ever, and makes people fall in love with her, after meeting her for the first time!
She still likes to give us a scare, when she chokes on her saliva.. and the nurse mode comes out of me, and I am like:
Sit her up if she is laying down
Pat her back to help the secretions flow down
Suction, Suction, Suction to give her help, so she won’t have to try to swallow a ton of saliva at one time
Reassure her that everything is going to be okay.. just hearing our voice makes her know she is in good hands.
Love on her once she has loosened her body, and isn’t so stiff any more, and let her know she can finally relax.
She has had 4 family visits, 5 doctor visits, and 2 visits from CPS. It’s crazy to me that we have literally spent hundreds(actually over a thousand) miles driving her just in the last month, and taking her to all of her destinations, and we wouldn’t trade it for the world. Our biggest concern is the unknown future for baby girl. She is supposed to be on the track for adoption.. but the way the legal worker was talking to me on Tuesday after her visit with her parents, sounded to me like he is trying to get mom and dad to better their life, to get baby girl back. Either way, I know God has already planned out her future, and will place her where and when she needs to be, and that Shane and I shouldn’t worry.. that we should just follow His lead and trust in Him. Sometimes, it’s just hard.
She has transitioned SO well to basically our entire family. She loves all of our voices, and loves when the kids (little man and Brielle) are playing and running around the house, because she will try to turn her head and look for where the sound is coming from. I can’t wait to watch their relationships grow and nourish over these next few months.
She has had all 3 of her major appointments this week, and let me just give you a little update.. Her eyes have not changed in the last month (which is great news considering if you read my post here to see what she started out with). Her pulmonologist appointment went great as well, he doesn’t see anything wrong with her breathing, and very happy she doesn’t have a cough and he did suggest that we get her synergis shots this flu/cold season because if she develops RSV (which you can read about here if you don’t know much about it), she will most likely end up in the hospital on the ventilator, because she isn’t strong enough to fight off an infection. Her developmental specialist actually didn’t assess her this appointment, because her adjusted age (the time she was supposed to be full term) is only 1 month old, so we have to wait until November (she will then be adjusted to 4 months old) to do a full assessment. The nurse did an amazing job giving me tips and exercises to do (to prevent her from getting stiff joints) and ways to just help her grow (and we also left with 5 cans of formula.. that nurse was seriously amazing!!). I have already started the exercises, and I can’t wait to watch her soar in the next few months.
We are so very blessed to be able to love on her, and take care of her, and can’t wait to see how much she grows!
When baby girl was born, she had to be put on the ventilator to be able to breathe and sustain life. Eventually, as her lungs matured, they weaned (decreased) her off the ventilator and on to high flow oxygen (CPAP). Since she was only born at 24 weeks gestation and only 1 pound 3 oz., they had to give her lungs a lot of oxygen (help) to be able to function properly. They were able to eventually put her on regular nasal cannula and able to completely wean her off the oxygen 2 weeks before discharging home.
When a baby is given too much of anything, it can be bad.. and that was the case for baby girl. She was on oxygen for too long, causing damage to the vessels of her eye. Here is a textbook definition of her diagnosis:
Retinopathy of prematurity (ROP) is a potentially blinding disease caused by abnormal development of retinal blood vessels in premature infants. The retina is the inner layer of the eye that receives light and turns it into visual messages that are sent to the brain.
Basically, she could have been blind. There are five different stages in which the doctor is able to determine if her eyes are getting better or worse at each visit and draws a picture for us. Here is a description of the five stages:
Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and “plus disease” develops, treatment is considered. “Plus disease” means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.
Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.
Baby girl had stage 3 when we took her home from the NICU. They were VERY concerned about her and wanted to make sure we did NOT miss her first follow-up appointment, because she was only 2 stages away from having her retina detach, causing blindness in both eyes.
We prayed, and prayed and prayed more over baby girl. Even our pastor prayed over her for complete healing in her body. God is so good (even in the bad times), because let me tell you at the first follow up appointment from being released, the Ophthalmologist thought he was looking at a different baby. He called her a “miracle” and how her eyes have gotten so much better, so fast!
Let me show you a little of what we were looking at in the beginning from her first appointment from when she was first born, to now. Her eyes are not completely healed, but we are getting so close and know it’s in her future!
She left the hospital at Stage 3, zone 22nd appointment Stage 1 zone 3 (getting better!)Same result at 3rd appt. no major changes
All I can say is, wow! She is doing amazing and she is able to follow without straining of any vessels and she really works hard to listen to everything going on around her!
**Please say a little prayer for complete healing of her eyes, and the damage that was done due to being so premature, to be gone and have no lasting effect!**
Can you believe that we have been fostering our little man for a month now? It has seriously FLOWN by!
We so encourage others to do the same, to help children out while their parents figure out how to better their lives and how to parent correctly. It can be for a short amount of time, or they can turn into your adopted child and make it a forever option for these precious kiddos. Our lives just feel more complete. It’s amazing what listening to God and opening our hearts and our doors to do this, will do to you.
This past month has had some difficulties with his parents (can’t go into detail), but we hope and pray every single night for them to realize the importance of this time away from him and cherish every moment they get with him, even more.
We celebrated today by going to on a impromptu trip 70 miles away to Austin, Texas! It was so fun to go to the children’s museum with my best friend and just enjoy my two littles! Also, to go out to eat lunch and just catch up on some girl talk is always fun too!
I will be doing his 15 month update with all of the amazing things he has learned from being with us and around so many loved ones. It’s amazing what tender loving care can do to a person!
sheridanjohnson.com 