The Feger Family est. 2012: June 7

Updated: 9:25pm

I'll write at the top the last update so you know if I've added.

I took Aunt Kristin to the airport early this morning, booh! I went straight to the hospital after that. Little big man was very bright eyed this morning. It was so nice to look into his eyes, I can tell he is hazy but hopefully he knows it's just his mama. He tolerated the hands-on this morning which is when the nurse checks everything, changes his diaper, takes his temp. Mommy helps out when she can but I sneak in there as much as the lack of space and endless tubes allow me.

Kathy a friend from work and Jeff stopped in today. Everett was happy to have visitors. As soon as I left at 12, Uncle Steven came to chill for a while. Jeff and I were talking about how visitors energy must be felt! I hope! The nurses advised less touching these days since he's had his belly button line tube in for a while, the changes for infection are greater, so we all just stared at the cutie patootie.

They are weaning him off of the hydrocortozne which is one of the last drugs he is on, for blood pressure. His oxygen machine was at 36 when I went in, it has been creeping up all day. The nurse says that's normal when they really start become less sedated. Everett, you're making mommy nervous. He is breathing against his machine, it was okay this morning but by this afternoon they had to give him more fentanyl (from 2 to 3) and she also gave him Versed which is for anxiety behaviors to help keep him from breathing against what's supposed to be helping him. My little fighter.

During rounds the RN said his x-ray didn't look better but the neonatologist thought it did, slightly. They think they'll try to switch him to the conventional oxygen machine tomorrow. They really need to take out his arterial line and his UVC I think it's called which is the one that goes into the belly button. There is a PICC team on tomorrow that will try to get one into his vein and if they switch him to the conventional machine they can get rid of the arterial line. They'll have to prick his baby feet again though for blood. :( Both lines have run their course though and could damage him or infect him so it's a must. Let's hope their attempts at all of this works, otherwise I don't know where we go. Dr. McCarthy was on today, she's going to leave him alone for the most part and will let Dr. Brooks decide any changes that need to be made tomorrow. We're hoping for a steady, low key kinda day.

They'll need to do another echo to check his heart at some point this coming week. We're hoping hypertension isn't back. They're checking his gas every 6 hours. PIE stands for something that happens when they breathe too much on their own and bubbles get into their lungs so they need to make sure he stays relaxed and let's the machine do its job. He may be having a bit of mommy's milk today, a tiny, tiny amount to see if his gut will handle it. I'll plan on being there around 4:30 to "give" it to him through a tube. :( Maybe some of mommy's miracle milk is just what he needs! If he tolerates it he'll "eat" at 8, 11, 2 and 5. He can try this now because he's off the Vec.

This morning's xray

I love you bright eyes!

Daddy took Clara for a stroll.

And a swim.

Dada's hairdo after pool.

Everett has had a decent day overall, I think. He continues to fight every step of the way. They had to go up on his pain meds to keep him happy and he is taking an anxiety medicine as well, he's off of all the rest! He is still on his machine and he's been sitting between 35 - 45 which 40's are higher than we like but the nurse also said it's all normal when a baby comes off of so much to need a little extra support. He had one big dip today. He had lots of mucus suctioned out, which bothered him but I think, hope, pray, that it's helped clear his lungs some. I'm anxious to see his x-rays in the morning to see if getting the mucus up finally helped. Although his lungs have been full and hazy on the x-ray they have not gotten much of anything out of his lungs so we're going to bed with some high hopes.

Bessy, Harloff, Darren, and Corrie came for a visit tonight. All saw Everett awake. He is much more alert now, so exciting, but so hard to leave knowing I'm missing him and I want him to know we're there. Dada put pictures on the top of his incubator tonight so when he opens his eyes he sees his faimily. He is breathing against his machine, which is find and good actually until he gets too aggravated about it. Nothing going on can feel good for this little man. I'm so sorry sweet boy.

I fed you today!!!!!!!! I was full of such emotion about it. I was so happy you got some of mommy's milk but I ACHE to feed you the true mommy way. I held a syringe with about 5ml of my milk up and it went straight to your belly. Some of it was mommy's first drips which is full of good stuff! Bessy and I agreed this will help you knowing how important mama's milk is! I can't wait to feed you the "normal" way, I crave that connection with you so bad. When I'm pumping I get so sad, I miss you badly and can't wait to be close and connected, it's so unnatural not having you to feed, and do everything else...keep that appetite up little big man, you have LOTS of milk awaiting you!

We learned tonight (because Dada is smart and asks) what it means if you have a bad blood gas draw. It means your lungs aren't expanding all the way and the carbon dioxide you should be exhaling isn't happening. They draw blood from your arterial line to test it. If the PH is between 7.25-7.45 we're happy and if the CO2 is 35-55 we're happy, or rather, you're happy. If it's higher you're holding your breath and we don't want that happening. At least that's how it was explained to us.

Mommy needs to remember to ask them to do CPT when you're off the high frequency vent which should help break up the mucus in your lungs. That's Chest Physical Therapy which is a small vibrating machine put on your back or chest, you didn't mind it when you had it done before you were on this machine, hopefully it's a little baby massage.

Dr McCarthy told me about a BUDS program today she's going to get me the contact for which apparently is a Down Syndrome connection/function that happens in October. I need to remember to get that information or look it up.

I asked to be notified of a few things, now that my crash course is underway and I'm starting to get a handle on what goes on with my little darling. I've asked to be called if/when:

Everett's oxygen vent is increased or decreased by 15 for a half hour or more.

If a PICC line is going to be attempted.

If he has two bad gasses in a row.

If a vent change is going to take place.

Anne-Marie is on tonight for our night nurse. She had Everett the Friday after I had him, when he was just a day old. She should be calling me in a few minutes to give me a night update and I'll call it a night.

Now that Kristin is gone, Andre and I are on our own entertaining this little one while switching to spend time with Everett. Clara has found her toddler voice for sure, I'll leave it at that.

We had fun with selfies though. I love you baby girl!