Saturday, January 5, 2013


Jack is having some major setbacks.  He was doing great. He was breathing on a relatively low oxygen setting and gaining weight.

I got here in Thursday in the very late afternoon.  Jack was doing well and I got to kangaroo with him.  It was great!  His weight hit over 3 pounds and we thought that was great.  The next day I got to kangaroo him again but his heart rate, O2 saturation and respiratory rate all dropped a number of times while I was visiting him.

I got here this morning and he is in an open crib, has an iv in each arm and his O2 level was way up.  I asked what happened and they told me he had a lot of issues during the night. He  had continual oxygen saturation and heart rate drops. He was struggling to breathe. They had to raise his oxygen levels.  When that didn't work they put him on CPAP.  Then they checked his hematocrit and it was low, so hey decided he needed a blood transfusion. He is getting two transfusions of packed red blood cells. They can't give actual blood because it would be too much volume. They have to suspend his feeds durning the blood transfusions and for four hours after he receives the blood.  That is a big deal because he is on continuous feeds.  His feeds will be stopped for 12 hours. He is on iv fluids because his feeds are suspended. The iv fluids are causing him to swell.

There were some signs that there were some problems yesterday. I held him for about an hour and when we put him back in his isolate we took his temperature. It was pretty low.  Th nurse attributed that to us forgetting to put his hat on but I doubt that could have caused his temperature to go so low so fast. However, his anemia can do that. They said the anemia is from blood draws as well as anemia of prematurity. His bone marrow is just not ready to make all the red blood cells he needs. He also looked a bit swollen to me yesterday.  I have learned that big weight gains are not always a good thing for Jack. They are also not accurate. He retains fluid and the big weight gains are usually related to that.

Jack had his eye exam  the day before I got here.  He does have retinopathy of prematurity (ROP) .  It is stage 1, zone 2. They are going to watch it. It can get better or worse. The are times when it can self correct or he will need laser surgery. The laser surgery usually helps, but not always. I had a feeling he would have this since he has just about every risk factor.  He still has risk factors for it to get worse, but I am praying that it doesn't.

I also found out that he has a long way to go on feeds. I was thrilled that he was taking his feeds so well but it turns out they were unable to feed him into his stomach so they bypassed his stomach and the feeds are going into his intestines. He is absorbing it and gaining weight, but he needs to be able to take feeds into his stomach before they can even think about releasing him. They can do much larger feeds into the stomach because it has a greater ability to expand. The intestine really doesn't expand much, that is why he gets continuous feeds, because it is a smaller amount over a greater period of time.

I was looking into getting Jack moved to a hospital that is closer to home. He would go in a fixed wing air ambulance with a neonatal transport team, but he has to be stable. He was very stable and things were looking pretty good, but unfortunately that is all on hold now. It was never a definite anyway, but I was optimistic that it might happen.

So, I am enjoying m visit with Jack. He is so super cute. I really loved holding him. I won't be able to hold him again today because he can't be moved during, or just after his blood transfusion.

I will be heading home tomorrow. I have to drive to Memphis from Little  Rock, then I fly to Atlanta and from Atlanta I fly to NY. It is not an easy trip, which is a bummer since it appears I will be doing this trip more times before he can move closer to home.

Thanks everyone for the prayers an good thoughts. Thanks so much to everyone who helped me with Julianna. XXXXXXXOOOOOOOO!


  1. I hope the RBC transfusion will help! Anemia could definitely accounts for the apnea and bradycardia. Hopefully there aren't any more issues beyond that!

    Fingers crossed. It must be so incredibly challenging to have your son so far away from you.

  2. Hi MaryEllen. I'm just reading this and I'm sorry to hear he's become less stable. You probably know more about his condition by now, I really don't want to scare you as I only have my own experience to draw upon but the leading symptoms sound similar.
    These were many of the symptoms leading up to Ella's NEC. The Brady's, the increasing O2 needs, swelling. Have the doctors talked to you about that? If not you need to ask them to be looking for it (or rule it out), it comes on so very quickly. It could be something much more benign... as I said, I only have my own experience to draw on.

    My email address is in my bio if you want to touch base personally. I'm so sorry you are having to deal with this, whatever it is. Praying!!

  3. I am thinking about you frequently and keep checking in. I hope Jack is doing better!

  4. I'm so sorry to hear about Jack. I hope things are doing better now.

    Your family is in my thoughts a prayers