Hi Everyone,
Happy Good Friday.
Just a quick note. Sonia is sleeping already. Today was her first full day back at home and she was pretty exhausted by the end of the day.
We saw Isaac again today. He seems stable and his milk per feeding is up to 4ml now. but there doesn't seem to be any appreciable increase in weight yet. Good thing I'm not a farmer or gardner - I have so little patience!
He has started to have some problems with his bowel movements on occasion but apparently an enema fixes the problem. The doctor said that his lungs were not too bad yet but that chronic lung disorder will likely start pretty soon based on his experience. He also mentioned for the first time that they expect to start seeing signs of PVL in his brain over the next couple of weeks. He doesn't seem to think that Isaac will be able to get off of his respirator for another few months and that his oxygen level will likely have to go back up.
But there are no signs yet of that or bleeding now so we'll just have to keep taking it one day at a time.
I have to admit I felt a little down today after meeting with the doctor (although the doctor didn't mean to do that at all). Isaac just seems so peaceful and responsive these days and after what seems only like positive progress, it is hard to accept that deterioration that will change all of that is inevitable. I guess the worst part is the waiting - I'm so afraid that we'll have a repeat of what happened during the pregnancy - everything seeming great for weeks only to have something pretty disastrous happen.
It is amazing how little faith we have sometimes. It was pretty obvious that I was feeling out of sorts as Sonia kicked my butt on the way home. She's mentioned how important it is for parents not to give up on preemies. Of course I'm not giving up on him - I just don't like folks accepting the inevitable I guess and I guess I'm not used to feeling helpless. But perhaps that is just what He wants me to fix.
I do have to thank those of you who have posted about their preemies who have had to deal with all sorts of complications. The fact that your kids are thriving despite it all does give us great hope.
On the way to see Isaac, played "Jesus Take The Wheel" and we started sobbing uncontrollably as we listened to it often while we were at the hospital with Isaac and Rachel. I think I'm going to need a little more practice getting out of the driver's seat.
Blessings,
Jong
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5 comments:
Patience is something that seems to come and go while sitting in a NICU... there is alot of *hurry up and wait*...... any preemie on a vent will have some type of CLD.. there's no getting around it... they are just so small... BUT they can overcome it later on. And the oxygen levels will fluctuate up and down also.... I know the 3 months Nathan (my 24 weeker) was in the NICU my day depended on what those numbers looked like on the screen.. Good numbers equaled GOOD DAY... Bad Numbers meant a lot of crying, praying and worrying... Try not to be too hard on yourself because losing a twin and then having to go through all of this is enough to test and stretch anyones beliefs!
Still Praying For you!
Sammie
Oh, man... doctors can be such a blessing... but you have to weed out a lot of what they say is the worst-case scenario....
of course, we have micro-preemies and a million things could go wrong. We know!
But do take courage in how well he is doing! He is doing great - amazing!
Continuing to pray for y'all... we know how hard it can be -just the rollercoaster of the NICU. But I have a 6 year old sleeping in the next room that was never supposed to walk or talk or eat... HA! he is a miracle...
Again, take heart... Jesus makes intercession with us
Hi Jong and Sonia,
I look for your posts every day and I am happy to hear that isaac is up to 4ml. That is great! As far as PVL, my docs told me that the "crisis period" for a preemie getting a brain bleed is within the first 72 hours after birth. After my 23-weeker Jason passed the 72 hours, the doctors told us that he was "in the clear." What the heck are your doctors talking about???
I can relate to your loss of patience with God. I recently experienced the same feeling. I wrote about it on my blog at http://kimjrnlst.blogspot.com
I will continue looking for updates on Isaac. You really have no idea how much I can relate to what you and Sonia are experiencing. All I can say, and my thoughts are truly coming from the unique space of having experience EXACTLY what you both are going through, is that EVERYTHING will be fine. Isaac is a survivor. He is an example of God's work. He will live and continue to fill your hearts will overwhelming love.
With much love,
Kim
My doctors said the crisis point for brain bleeds is 10 days. At 72 hours he had a grade 1 Left Grade 2 bleed and at day 10 it was at Grade 3 Left Grade 4 (though later they changed their mind and said Grade 2 and Grade 4). He was not actually diagnosed with PVL until he was 6 months old and had a CAT scan so it can be diagnosed later - the Dr.s correct. (Though they said typically after the first 10 days you are not likely to start developing the hemorrages). The fact that Isaac made it with no hemorraging at all at the 72 hour mark is DEFINITELY praise worthy though!!!!
Jong and Sonia - you mentioned in your post that you are gearing yourselves for the inevitable. It isn't the "inevitable". Praise the Lord it is NOT. Seems that all us micro preemie mom's are saying the same thing. Doctors don't know everything. God reigns over all. There are strong "possiblities" of some issues and those issues can affect baby on an enormous range of scale but there are so many reasons to be hopeful. When I was in the NICU I remember nurses giving me that "I am just so sorry" look each time we would talk about Ty's hemorrages (they didn't even know about the PVL then). I had no limit on how much time I could spend with Ty. The level 3 NICU he was in was over an hour away and I had a 2 year old at home so it still was hard to balance but I was with Ty for at about 5 to 8 hours a day for 83 days. During that time I experienced enough to believe those nurses. Ty had terrible apnea and bronchospasms and so many days were crisis days. He turned nearly black in my arms more than once and he would be so close to flatlining I would run to the hall sobbing. I say this for only one reason....you would NEVER know this to seem him at 2 years of age. They were WRONG. He did survive those days and he survived them better than anyone led me to believe he would. I do realize that not every story is the same and sometimes God allows more pain in these situations than we feel prepared for but still I share hope with you because when I was a NICU mom, I needed hope to get through my days. God is good...all the time....all the time...God is good.
Love Doni
boy, don't you love testimonies. may i say, you do serve the God of the impossible. wren (22wk 6 days-i keep say this because i know you have many many people writing and probably hard to keep straight the gestation of all of them), we were told would in all probability have CP, ROP, brain bleeds, MR etc. etc. and they also added the fact that they had never had a baby under 23 weeks survive in their NICU. i very simply looked at the Dr. and said, "well, i guess he'll be your first then." (i know the ediquitte is different here than there too...) anyway, wren did not have any brain bleeds or Retinopathy of the Eye, or Cerebral Palsy, or hernias, no cardiac problems and no mental retardation. i attribute that to the God of miracles and the God of the impossible. and the same God in whose hands isaac is resting. wren did have chronic lungs and was on the vent for 2 years and also had a trach for 2 1/2. and he does have a g-tube....but as for those "major" issues, God covered him in all His sovereingty and grace. i believe for you and with you. and i stand in agreement that isaac is amazing, and God can work amazing things in all and through all. praying that your spirits be lifted and that God brings and continues to pour out that everlasting peace upon you.
erin eccles
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