What do I say about today? This picture is how I found Greyson when I came in. Looking all cute and sitting up in bed (again with help) eyes WIDE open looking at me. Stacy took his temperature and it was great so we began to work on his diaper and found one VERY large diaper. We have heard many diaper stories that you would call, “went up the backside” (you parents will understand that I’m sure!) well what we found was something no one warned us about, it can be “up the frontside” as well as the back! Man what a mess.
So we got him all changed and he got his breathing treatment, we tucked him in and Stacy left to go pump. I was asking the nurse about his chest X-ray when I heard Greysons monitor alarm. Nothing new here happens all the time. Well when I looked up at the monitor I immediatly realized it was not his oxygen saturation. Weird cause that is what is always alarming. It only took a half a second to realize that it was his heart rate that was alarming. Greyson’s heartrate shouldn’t be below 100 yet it was alarming because it was only 87. I stepped over to his crib (about two steps at most) and began to massage his chest while continuing to watch the monitor. I looked at Greyson and he still looked pink so I wasn’t worried. Then I looked back at the monitor (by this time the RT who was right there was looking) and Greyson’s oxygen level was reading 23 percent (shouldn’t be below 87, under 80 is considered a de-sat) his heart rate was still low and when I looked back at Greyson he was clearly not doing well. I’m not sure I ever said that you can tell when his oxygen level is low by looking around his eyes and his lips. If his level is low they will begin to turn a little blue. Well I didn’t have to look at his eyes or his lips as his whole face was purple. NOT COOL. The RT gave him extra oxygen, unhooked his cpap and bagged him and soon his numbers came back up. All of this took about 30 seconds, which doesn’t sound long until your watching this type of event. Scary just doesn’t seem to capture the moment properly, but it’s all I have.
Greyson has had a few of these episodes lately. This is kind of strange as he is old enough that he should have outgrown this type of behavior. So what we believe is happening is that he is refluxing and when that happens it is not only painful and agitating to him but can cause all this other stuff as well. I forgot to mention that yesterday they reduced his feeding to three hours worth of food given over one hour. Today they changed it back hoping this might help with the reflux. If it continues to be a problem or gets worse they will give him medicine for it, or do a study to make sure it is reflux. Reflux is extremely common in preemies as the valve that keeps stuff in their stomach is weak and they have a tube down it that is keeping it open to put the food in with.
Last nights blood gas was good, c02 of 60. Tonights will be interesting as Greyson was on the nasal canula 2 different times today for a couple hours. It’s late so I’ll stay up and get the numbers here in a couple minutes. Sorry I probably won’t come back out to the computer and post them on the blog so you’ll have to wait till tomorrow.
Today was a somewhat brutal reminder that this is going to be a very long process. Greyson’s due date is next wednesday and he will not make it home by then. As of now we are hoping early February. Even once he comes home he will not a “typical” baby. He will be on oxygen and we will have to be EXTREMELY careful with him for the first couple of years. I know it will have its difficult times, but right now we just desperately want to get to a place where we can bring him home. Of course we only want him to come home when he is stable (no more episodes like today, especially without nurses right there to help him through it!). Sometimes I forget that as good as he is doing he is still in the NICU, they don’t call it the intensive care unit for nothing.
Oh really quick, nothing significant about the X-ray. Greyson has chronic lung disease which we already knew.
Oh Bob, Stacy and Greyson,
We will certainly pray that today is a more stable day and all counts come in good and stay in the range that they should…My “BIG” prayer today for you will be endurance. I can’t even imagine how tired you must be getting but I know when we ask, God replies..I think February would be a wonderful time to bring Greyson home. The early early spring flowers and little sprigs of green grass will be poking their heads out and some blue sky might occaisionally appear. Valentines Day will be close and we all know what a “SWEETHEART” Greyson is, so don’t you think Feb will be a good time? We all love you all so much and just hope your hearts are encouraged today and that it is an easier day…My love to you, Aunt Sue
Bob! I can’t even imagine!!! We are so thankful that the nurses are there to help when these “episodes” happen but can appreciate you wanting to bring your little one home! We hope you know how much we think and pray for all three of you! We love you and wish we could do something to help make it easier for the two of you as you go through this LONG process! Please know that we are here for you if you need anything!! We will pray for a much better day~ one that will give you needed strength and a calmness to make it some more! However, I am sure looking at Greyson (especially all wrapped up looking adorable!) makes all of this worthwhile! He is truly a sweet blessing!
I just praise God that you and the Nurse were right there to help Greyson through this episode. No need to worry about using a different word…we all understand although Im pretty sure terrified would have come to my mind. We have a bible quiz meet today so we are getting ready to go. We will all pray for Greyson (like always) and will be praying for added strength and comfort for you and Stacy. Greyson is such a miracle and even though he is fragile God has shown us that he is in control. Keep your spirits high and “rest” in God’s presence. WE WILL NOT STOP PRAYING!!!!
Love,
Tam
May tomorrow and the days that follow be easier ones. Know that we continue to pray for you three – for God’s healing power for Greyson and continued strength for you and Bob.
Good night little one, sleep well and get stronger every day.
God bless you,
Jim & Judy and Laura & Keirin
I ‘m glad they backed off on his food. You (Bob) couldn’t eat alot at one time because if you did you would throw up all over me and you did that until you were two. When your tummy is so full and you are full of gas, it stands only to reason that it would be putting alot of pressure on his lungs and causing him to have trouble breathing. Think of Thanksgiving dinners after you have had way too much to eat and how you feel. I know I have trouble breathing during those times.
I’m just so glad Greyson is here so it may take a little longer to go home but as long as he is getting better Praise the lord. I know you feed that way too.
Take care and the prayers will continue and God will be there.
Love you mom