We Are........

HOME AT LAST!!!!!!
Ill get back to you- Im just going to enjoy my family right now.

CHUG-A-LUG CHUG-A-LUG-

Its 6:50 Am, and at 9:00 we have officially bottle fed for 24 solid hours. He is doing great. Taking 2 ounces of thickened formula every three hours. He is starting to wake me up now to feed instead of me waking him and force feeding. All this is great news. When the doctor comes around this morning she will read his chart and see that all his feedings went well. THEN- she orders the feeding tube to come out. That's what she said yesterday. I'm not sure if we have to be observed for another 24 hours after the tube is removed, or not. We will see.
Henry has gotten so much more energy through bottle feeding, and all around becoming an older baby. After all- He is a whole 2 Weeks old TODAY!! He also has been much more vocal. He mainly sleeps if he is not getting a diaper change or eating. But- From time to time he will wake up and cry for his pacifier. He loves it.
I don't have much more news for you today- That's great! No news is nice to report these days. OH- I almost forgot- If anyone knows of a speech therapist, let me know. I know that I do someones hair that is, but I'm having a hard time remembering who. So- If your reading, I'm sorry, but I would like to chat about a second opinion on this swallow study. Not that I am trying to take short cuts. I just don't connect well with the therapist/doctor that he is with, and may want to do follow up appointments elsewhere.
Hopefully home is in the near future. I'm still crossing my fingers for today, afternoonish- But i bet its tomorrow. Ive already got the double stroller popped out in the garage ready for walking. I cant wait!!! Josie's birthday is next month and I have some major 1st birthday party planning between now and then. So get your party panties on.. He will be a month and Josie will be a year- That's some serious stuff! ha ha-
Ill update on our discharge later. Wish us luck-----
Love- The Summers

After some mind clearing..

I'm sorry that I never updated yesterday. I needed a little attitude adjustment before speaking to the entire world. I am better now and have had some time to accept some things that are not a huge deal.

At the swallow test.... Henry did wonderful. I felt like he was latching on and not loosing too much liquid out of his mouth. The doctor had me holding the bottle and feed him different consistencies of liquid while they took an X-ray video of his swallowing skills. The doctor kept saying, "Oh, not good! We had penetration..", and "Oops, there he has done it again." By the looks to me, he was doing great. But hearing all of this from the doctor, and not knowing what it was saying- gave me a slight panic attack. I started to sweat, then my hand started shaking, and soon I was totally blacking out. I had to tell the doctor that I needed to get out of the room.

After the study was done, she explained to me that Henry is not 100% coordinated at his eating skills. That he almost got the liquid into his airwaves. That can cause silent aspiration, and that can get fluid into your lungs. SO- they recommended leaving in the feeding tube and doing every other feeding by bottle using a thickener called "thick it" to make it easier for Henry to direct the fluid down his throat. Then doing the other feedings through the feeding tube.

So- after hearing this news, to be honest I was PISSED. In my mind this was an entire new problem that has been addressed outside of the true reason that we are here in the first place. And not that I'm trying to rush Henry's progress, but this could prolong our stay here. This was my thought process yesterday.

BUT- as the evening went on, Henry did great at all of his feedings. At 9:00 this morning, the doctor met us in our room to observe Henry's feeding. He did great. Her instruction to us today is to feed every feeding by bottle and see how he handles that. She will be back for his noon feeding to see how he follows up with 2 bottles in a row. If all goes well, we will have this horrible feeding tube out in no time.
Keep your fingers crossed at noon today!

In a "real life" setting..

We are in a real room now.

We are pretty much free of all tubes and wires and IVs now.

Henry is alot easier on the eyes.

Yesterday, they moved us to the 4Th floor; the neuroscience area, and planned on putting us in a real life setting. This is where we hold him when he cries, change his diapers ourselves, and get comfortable with the fact that he is not being monitored as closely as he has been. So- at first they put us in a room, where we had a roommate. I swear the area for me to sit was a 4x4 square with no TV or anything to do. That was uncomfortable enough. Then- to add to my nerves, my roommate was a 17 year old boy who had some mental disabilities. That I could of handled I think. I didn't even mind his loud way of speaking, and yelling at the TV. But, then his family came in, REEKING of cigarette smoke and said to me, "Ah, We'll be outta here hopin' by Tha mornin'. Just waitin' on this one to have-a-nother seizure. HA HA." Bless them. Not that they were bad people. And I found myself rather enjoying ease dropping on their conversations. They seemed like very funny people that I would like to chat with on a normal day, but now was just not the time. Luckily- My mom was here with me during this but, she had to leave to go back to work. Of course as soon as she left the room I sat in my 4x4 space with my precious boy, with the worst now going through my head crying my eyes out alone.(Kent has been back at work) What I didn't know, was my mom was on top of the situation. She went to the nurses station and told them that this was NOT a good time for me to be in this situation. Within the hour, they asked me if I was ready to be moved to my private room. ABSOLUTELY! I couldn't of felt better.

Kent and I both got to stay last night. My mom kept Josie.

They tried to take him off of his oxygen, but his stats showed that he may need just a little for a day longer or so. That's fine- He'll be ready when his body says he is ready. We will wait.

I have been a bit frustrated with the feeding ordeal. He still has the feeding tube in his nose that goes straight to his intestines. All of the PI CU nurses told me that while they watched him coming off of the breathing tube, he showed so much interest in EATING his passie. He was not allowed to eat for 12 hours, just an IV drip. So- he was very very hungry. With the feeding tube in his nose he eats like every 15 or so minutes through his nose. Therefore, he NEVER feels hungry.

So yesterday, our speech therapist came in to do the swallow test. First of all, this was while he was sound asleep, second of all, he has been on a feeding tube and not very interested in eating. Do you scarf down a meal after just having one? NO- She was not happy with his interest to the bottle. She said that he aspirated a little bit out of the side of his mouth. SO- she wants to remove his feeding tube out of his intestines, and insert ANOTHER one through his nose into his stomach to let him feel what "hungry" and "full" feel like. I'm sorry if I'm being tacky, but I THINK THIS IS RIDICULOUS. I told the therapist that he was so interested in sucking when he was hungry, and that all of the PI CU nurses agreed. She seemed to be pretty set on the move of the feeding tube. Maybe she'll come in today and reevaluate. I think that he would do better. He wakes up a little more everyday.

Its very hard for me to deal with a new unit. Its hard for me to tell the story to every new nurse, resident, and doctor in this unit. To me, I'm looking at the bright light at the end of this horrible tunnel we have gone down. I look forward to the future and have accepted the waiting game. To them, they see a new story. A new problem. They want to look back to the beginning again, and we are back to hearing, "We're so sorry."

You don't have to be sorry to us. We are more than happy that home is in the near future. We are in optimistic mode, and the new unit is not.

Being in this room, it is alot easier to blog, talk, and all around communicate. My phone of course has been on the outs. HA HA- (if its not one thing, its another). So your welcome to email. If your a facebooker, The network here wont let me update facebook, so i can not communicate that way. Email is- sprayandgo@gmail.com.

Love everyone and plan on updating later today about the feedings.

Pictures

This is Baby Henry

before the tube was taken out.

This is Henry

AFTER.

So tired from all the work-

Momma gets to hold her baby boy!!!
One of my goals today is to take pictures of him with his eyes open.
Usually when he is awake the last thing that I think of doing
is snapping pictures.
But I'll try to remember

Movin' on.........

So- Breathing tube is out! He is doing it all by himself. Yesterday everyone got to hold him. He looks like a little baby again. So sweet. He has grown so much here at the hospital. He almost weighs 8 lbs. Alot of it is fluid, but his swelling is 99% better than it was 2 days ago. Here in a few minutes I'm going to try and upload some pictures of him for you all to see.
Later today there is going to be a speech therapist come in and do a swallow test on him to make sure that he is ready to take a bottle. I feel like its a good sign that he is sucking on a passie- So, the plan is; today we will be bottle feeding and ALSO- moved out of the PICU to "The Floor". That's the step you take right before going home. YAY FOR US. Our deal that we have with Henry is that if he is a fighter, we will be home by Friday for his 2 week birthday PARTY! I think that he is excited and working hard toward that goal.
Thank you everyone for everything again. We cant thank you enough. When all calms down we hope to be able to give everyone a proper Thank You.
I am so so ready to have my kids together in one household. Its so hard for me to have Josie passed around and not being able to be with Henry 24/7. If I have seemed a little as I say "Wigged Out," I'm sorry. I really do appreciate your concern- I'm just home sick when I'm here, and Home Sick when I'm at home without him. So I'm sorry if you have seen an ugly side of me. I'm trying hard to control myself.
I will get on later on and let you see some pics of the sweet boy.
LOVE-

RAMBO!

Today is Henry's day to shine. He is already trying to pull out his tube himself. The doctor just left the room and said that he wants to get him off the vent very early today. Hopefully that means around noon, that's what it says in his nurses notes. BUT- don't get discouraged if you don't hear back from me soon after that. When Arkansas Children's Hospital says noon- that could very easily mean 2 or 3. But they will get it done today! I will get to hold my 7.5 Lb. baby TODAY!! He is so much bigger than he was when I got to hold him last.
Ill keep you updated! Keep him close to your heart all day today.
Hopefully Henry can earn his dad's favorite nickname today.
GO RAMBO GO!!