Dear all,
I guess its inevitable but Chronic Lung Disease (CLD) has arrived for Isaac. Isaac's oxygen saturation level has decreased so they are giving Isaac more oxygen. The doctor and the nurses are monitoring him pretty closely as they don't want to give him too much oxygen, which may cause ROP (retinopathy of prematurity) in his eyes.
Jong and I also saw Isaac opened his eyes today. It was a bit scary to have him open his eyes so early. He still can't open his eyes widely but we saw both his eye white and his iris. He was definitely trying to open his eyes widely though.
He is up to taking 8 ml of milk per feeding today. He is apparently digesting all of it and is even able to poop on his own without extra help - twice a day! We are really hoping that with 8 ml of milk per feeding, he can really start gaining some weight. The doctor keeps saying how things will improve for him when he gets to 1 kg - his CLD will probably get better then and they might be able to try taking him off of the ventilator, etc. So I really hope he gets to 1 kg soon. They will weigh him again tomorrow morning. I hope and pray that he gained some weight since his last weigh in.
All in all, he looked pretty good today. He was on his tummy again today. The nurse said its better for his heart and his digestion for him to be on his tummy. I think he really likes me touching him (not to sound too cocky) because his oxygen saturation levels almost always improve when I am touching him (I do what is called a "firm touch" - basically putting my palm or my fingers on him firmly without moving too much - as I read that soft featherly touches are not good for him as it overstimulates him). For some reason though (probably because Jong can't resist brushing Isaac and my hands are softer than his), when Jong touches Isaac, his oxygen saturation levels don't do so well. LOL.
Today, we were both touching Isaac at the same time for a while. I was cupping his back with my right hand and Isaac was grabbing Jong's left hand pinkie. It was so cute as Isaac was holding Jong's pinkie pretty tightly!
We just have a few more days before Isaac reaches 3 weeks old (and 26 weeks by gestational age) next Tuesday. The doctor kept saying that the first 3 weeks are critical and we are praying hard that Isaac will remain stable for the next few days.
The doctor also took Isaac's IV out as he has been stable and has shown no signs of infection. Please continue to pray that Isaac will be protected against infection. Please also continue to pray for his lungs and his eyes.
Isaac has been such a good and brave little boy. We really feel like God is surrounding him with His angels (at least that is what we keep praying for). We also pray for the Holy Spirit to keep whispering to him so that his heart can be filled with God's love and our love. Because we are allowed to see him for such a short period of time, we really have to have faith that the Holy Spirit is talking to Isaac and helping Isaac connect to us so that he knows we are his parents and we love him very much.
We can't wait to see him again tomorrow - hopefully, finding out that his weight has gone up!
On a side note, I have been missing Rachel more and more these days. Its taking me a lot longer to grieve her. I miss having both her and Isaac safe inside my tummy when I could feel them, talk and sing to them whenever I wanted. It was very nice to feel like I have most of my family with me inside me. Its weird to have them taken out of me so early. It feels a bit lonely to just be me again without them inside me. If you know what I mean.
Anyway, I am getting pretty sleepy (and I have to stay awake for my pumping sessions!). Thanks for all your prayers and please do continue to pray!
Hope you all have a great weekend.
God bless,
Sonia
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6 comments:
I'm so happy that Isaac is stable right now. And without an IV - GREAT! Hopefully he won't need one too soon so those little veins can get a break.
Sonia, it's so wonderful that you can share your feelings on this site. I sure wish that I would've been more of a computer girl when Nathan was born! The phone calls can be relentless when it's the only means of communication. Everyoone means so well and only wants the best, but updates just get exhausting, don't they?
I'm praying for you and Jong to be able to grieve Rachel and take the time you need to do this. I still miss my girls every day. And it was a very bittersweet moment when Miles was born in December. I hadn't cried in a while for Anna and Sophia and being in the hospital with another newborn sure made the ache come back!
You are exactly the parents that Isaac needs and whatever you're able to do for him is just perfect! Never forget that. I remember doing kangaroo care with Nathan (I was first allowed about 1 month old) and his saturations were awesome for about 2 hours when he was lying on me. Then he'd go "Okay, I've had enough. Put me back in my bed. Desat..." They're such strong little beings, aren't they? And they begin to communcate so early!
The eyes opening is a joyous moment. I felt like it was a real entering into the world for him. So don't stress the ROP. It's too soon to have any idea about his eyes so just enjoy the looks he can give you. (Easier said than done.)
Praying always,
Elise VanDyken
So glad that he's eating so well! I couldn't help but smile at the image of Issac.
I will continue to pray for Issac, for his healthy development all over, and for the healing of your grieving heart as well. May God comfort you...
The Dr.s probably told you this but the good thing about CLD/BPD is that the lung tissue replaces itself and by the age of 7 it should be a done issue. In Ty's case (hope you don't get sick of hearing that - I only share because other preemie mom's helped give me an idea of future expectations might be)...he was on oxygen longer than most other micros (10 months) and he has had not ONE lung incident since!!! Don't ask me how that happened. I know in my head that he must have fragile lungs but we have not had any problems with colds or congestion or asthma at all. Story isn't over since he is only two but my point is...the vent broke his lungs and gave him ROP (only stage 1) but he seems no worse for the wear now for either. Hope hope hope!!!
Dear Sonia,
Sorry to hear that Issac is having problems with his lungs, but his eating and opening his eyes are so wonderful. He is a little fighter and him gripping Jong's finger must have been so sweet. I am glad things are better and I still send prayers each day in the hopes that little Issac will soon be able to come home with you.
Take Care and make sure you rest
Hugs Allison
I'm so glad to hear that Isaac's feeding is going well, but sorry to hear about the lung problems. He's such a fighter, trying to open his eyes and see the world so early. He's lucky to have such devoted parents. Good luck at the weigh in tomorrow!
My prayers are with Isaac, and with you, as you grieve the loss of your precious Rachel.
I'm so glad to read about your little fighter. He's doing great.
Donni is right about the lungs. My son Timothy, a 25 weeker and 7 years old now, has rarely been sick. He is very social but he has a great immune system. No asthma or any other problems at all. He does eat a healthy diet but I often wonder if it was the Surfactant that they gave him that helped. Who knows.
Timothy also had ROP stage 2. I was very worried about this but in the whole NICU experience it wasn't a big deal. It was an easy laser eye surgery that took 45 minutes. Today, Timothy has better than 20/20 vision. He has never worn glasses. He did lose a bit of his periferal vision but the only person who can tell an eye doctor. The only thing that he cannot do in life is become an Air Force pilot. But that's ok because right now he's going to become an archioligist!
We're praying for all of you!
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