Greyson's Swallow Study

    

    This morning we woke up early and headed to Jacksonville for a Swallow Study for Greyson.  Well actually, we woke up late, but we made it there on time, by God's grace! 

     Greyson wasn't allowed to eat anything 6 hours before this study so we fed him in the wee hours of the night and then held and played with him while we waited for his Swallow Study. I went back with him fed him the sippy full of 'chalk tasting liquid' for the study.  They took X-ray pictures of his stomach and esophagus while he drank it and after it had time to leave his stomach.  After the study, we went to lunch and then headed to the Kid's Walk to kill some time before his GI and Nutrition appointment.  The boys loved the view of the trucks and had a blast playing up there. 

     At his GI/Nutrition appointment we discussed his diet and how to pack more calories in. The results from the Swallow Study were normal and so for now we are just going to continue his high calorie diet. We will see the GI in November again and if Greyson hasn't gained weight by that appointment then we will talk about the next steps for a G-Tube (tests and so forth). Please keep us all in your prayers!  At this point we just want Grey to gain weight and if he needs a g-tube to accomplish that, then that is what we will do but do pray that he will be able to put on weight on his own! 

Greyson's First Set Of Casts!

Greyson's Cardiologist Check-Up

    Yesterday, an awesome friend kept the older boys so I could take Greyson to the cardiologist by myself. Everything with his heart has improved: the pressure in his lungs was 30-35 (they want it about 30 or less), his 'leaky valve' was not as leaky as before, and his ASD (hole in his heart) has shrunk a little. He is not improving as quickly as we (including his doctors) would like but he is improving.  We were hoping to be able to take his oxygen off yesterday but he was SATing 88-90 when he was off of it so they are not ready to take him completely off. We did decrease the flow from 1/4 liter to 1/8 liter and he seems to be doing well. Keep praying for his healing! 

World Clubfoot Day 2014

    Today is World Clubfoot Day!  We have just started our journey with Clubfoot. Since Greyson is in the NICU we have been unable to start his castings but we plan on using the Ponseti method. Meanwhile, here are some pictures of his adorable feet! 

3 Weeks

    Today marks 3 weeks in the NICU. Greyson was supposed to come home with us on Tuesday, but his SATS were not good overnight so he was unable to do so.  He was still gaining weight but had started to eat less. They put a feeding tube in and said he could come home once he ate 8 feedings of 80ml each. This seemed like an impossible goal as he is a lazy nighttime eater. The next day, the doctor changed the order so that he had a minimum over a 12hr period instead. I was very confident that he could meet this minimum and that he would be coming home the next day (which was Friday).  

 

    On Friday, we were expecting to bring him home and instead found out that was not doing well with his SATs again and that he had been put back on oxygen.  Because it is a holiday weekend, we would be unable to get the supplies needed to train us to bring him home on oxygen so Tuesday would be the earliest he could come home. 

    Yesterday, when I went to visit him I was surprised to see how rapidly he was breathing. He sound congested (though his lungs were clear and the nurse could not get anything out of his nose) and he would not eat. I tried really hard but he would suck for a few minutes and then look at me like he was in pain.  He really wanted to eat but could not make himself do it. He did this nursing and with a bottle. He was getting so frustrated so I told the nurse to go ahead and put the rest down the tube.  I then held him for about an hour before I had to go. His breathing did slow down while he was laying on me.  I felt so bad for him.  I was pretty sure that he had a cold, but we wouldn't know until the pediatrician saw him the next day. 

    This morning when Josh called, we were informed that they had done a chest x-ray and were going to do a CBC (complete blood count). This worried us because we were unsure of what exactly they were looking for.  We assumed they were looking for an infection and checking to see if he had fluid in his lungs still. That is exactly what they were doing, and both tests came back fine. So, Greyson has some sort of virus that we now just have to wait out. Pray for him to get better!  We are greatful that he was still in the NICU when he got this cold because he is in the safest place he could be! 

Wordless Wednesday

Echo Results

    Greyson's echo of his heart confirmed that the 'hole' in his heart is what is causing his need for oxygen. His heart is letting blood through this 'hole' that has not been oxygenated and redistributing it throughout his body.  The pediatrician is going to order another echo on Wednseday so we should have results from that on Thursday. If nothing has improved by then we will work on getting him set up to go home with oxygen.

Another Echocardiogram

     Greyson is now 7lbs and 15oz and is still on 1 liter of oxygen. They have tried to wean him but his sats drop to the upper 80's (we want 100) so the pediatrician has ordered another echocardiogram to see if his current heart conditions are what's causing his need for oxygen. If they are, the cardiologist will determine whether or not Greyson can come home and if he does, whether or not he will need to come home on oxygen.  Once we determine if he needs oxygen, he will do a car seat test.  A car seat test is simply monitoring him in his car seat for 90 minutes to see if he can safely ride in it.  We (us and the pediatrician) are thinking we may need to get him a car seat bed instead, but we will not know for sure until we can do a car seat test. We do not know how long he will be in the NICU but we do know it will be through this weekend. Please continue to pray for us all!