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!!

Prayers get answered...

I'm sorry that I didn't update yesterday. No news is good news. Yet, trust me, I know waiting on news can almost make you crazy. Last night was good. Let me say that again.... Last night went GREAT! Henry really put on his big boy pants and started doing pretty much all of his breathing on his own. He was put on an even lighter seizure medication to bring him back to life again. If you have been here, you have seen how swollen his little head has been from laying flat and with so many fluids. BUT- last night his bed was raised and they gave him something to drain him out. I can tell a big difference today. His catheter has been removed, so we are changing diapers more often now. I like that- It makes him seem like a real baby again.
So- today-- His breathing machine has been turned down on the last setting. He has not had to used to vent sense yesterday!! If all goes well, HE PLANS ON GETTING OFF THE VENT TOMORROW!! My little boy is being tough! Then I get to hold him!!!!!!!!!!!!!!! I'm so excited.

The neurologist, Dr. Walters, came in today and seemed very optimistic! He said that all of Henry's reflexes are good, and he is happy to be seeing so much more movement out of him. We are going to be having a new neurologist from now on, but in my understanding (i wasn't here for this conversation), it seems to be someone who works under Dr. Walters. And in 6 months, we will be seeing Dr. Walters again for another MRI and then continue seeing him for checkups.
While I'm typing this- the Respiratory doctor has come in. He has said that in Henry's X-Rays that there is some white area in his upper right lung. This is a small case of pneumonia. THIS IS NORMAL for baby's that have to have a vent. They are starting an antibiotic today that he will be taking for a week or so.

SO- I feel much better today. Things are starting to look up and there is a light at the end of the tunnel. Prayers are answered, and quite honestly- Quicker than I expected.

Last night Kent and I stayed at home with our baby girl and Michelle, Kent's step-mother, stayed with Henry. We stayed up all night talking about Henry and Everything in the world. It was the best night that we have had in a long time, even before Henry had been in the hospital. We both have decided to "Let go, and Let God". That was a big step for us, and we made it together. Whatever the circumstances, we are ready to face them. Whatever the problems, we will work together to fix them. We would both give anything that we have for either one of our kids. So this is going to be JUST FINE! We are sure of it.

Again- we appreciate everything in the world that everyone has done for Kent and I, and Josie. We appreciate everyones prayers and thoughts so much. Keep it going everyone! Its working.

What went on today- (Friday)

The doctor (neurologist) came back in today to talk to us about any info that he has found about the damage. There are all types of terms that I could throw at you, but if your like me- it sounds like foreign language. So I'm just going to report in "normal people talk" the best that I can.
The damage that has happened is NORMALLY something that happens during birth when there are difficulties. Something like very low blood pressure or lac of oxygen to the brain causes this. In our case, there was too much "normal" time after birth for this to be the case. So- it must have happened sometime at home. But not after the seizure. He thinks that the seizure and color change was caused by this slight stroke type of event. The tests show lots of "white matter" around his brain. This is the damaged area. It also showed lots of swelling. From my understanding, the swelling is/could be causing a lot of problems and preventing us from seeing what all is really going on. They plan on another MRI in a few months after all swelling is gone. The doctor explained it to me like- "If i were to rare back and slap you so hard across the face you would see a big red whelp where my hand hit. After a little while, when the red goes away you may be able to see if it left a bruise." That made good sense to me. I hope it helps you.
LOOKING AT STATISTICS, the areas that have been harmed seem to affect more of the physical being than mental. Things like movements and such. But none of that is 100%. There is a small chance that nothing ends up being wrong, or at least noticed. And then again, there is a chance that Henry could be very handicapped. Everything is still up in the air. The doc said that he has seen MRIs come back looking way worse and the patient being just fine, to MRIs looking great and the patient in horrible shape. Its all waiting game.
Henry had to get back on a more monitored setting on his vent. He has had some troubles initiating his own breaths in a rhythmic fashion. The doc thinks that this too is caused by the brain being irritated by the swelling.
Also, they changed the medication that he has been on for the seizures. I'm not sure of the name, but it is less sedating than what he has been on. This should/could also help his breathing.

IF- anyone thinks of any good questions that I should ask the doctor, let me know. Email me, or comment me here on this. If i have it in writing i wont forget to ask, but if I just think about it- its out the window by the time i see the doctor.

Our next action- Just getting the boy to pick up on his breaths, heal from swelling, and eventually get off of the ventilator. I think that all other things will have to be taken care of and learned more about over quite a bit of time.

As far as our sweet baby girl goes---- She has been very taken care of. She has been up a couple of times and spent some time in the waiting room playing with everyone. She has spent her days at her Ganny's and nights at her Nonna's. For the past 2 nights I have been home with her myself and Kent has been staying the night at the hospital. Its so hard for 2 to sleep there. I'm sure Ill stay there tomorrow night and let Kent snuggle with his little tatter! (Josie's nick-name) .

MRI Results

Not so great. The doctor noticed some damage to the brain. He is not sure of the extent of it yet, or how it will affect Henry, but he and the neuroligist will meet with the doctor to find out more. They are not sure of when the damage came about, if it caused the ceizure activity, or if the ceizure caused the damage. Same with the color changing- was that a cause or an effect? Im not quite sure what else to say- We are keeping our chins up and our thoughts positive. No matter what happens, we will be the Summers family of 4, and our home will have lots of love and happy times in it. As far as other things that have gone on--- His ventalater has been turned down so that he can do some breathing on his own, his leads have been removed from his head (brain wave readers), and a feeding tube has gone into his nose. So now he is getting real calories and not just fluid. The doctor should be in to talk to us sometime today before 5. I will update then.

What had happened...

Ok- What has gone on- Tuesday night around 7PM Kent and I noticed that our little Henry was loosing intrest in eating. No big deal, just eating about half as much as he did the 4 other days of his life. This lasted all night. Through the middle of the night, he cried and cried and cried. The first thing that I thought was---"Great, God thought I deserved another Josie in my life." HA- Kent said that he had noticed some odd breathing patterns durrning the night, and still no intrest in eatting. In the morning, I tried to do some floor activities with him and josie to see if he had any intrest in moving around. THIS is when i saw that we had a problem. He was totally limp and his eyes were lifeless and clear. Just looking odd. I called the doctor. I scheduled a doctors appointment and really didnt know what to report. "I need an appointment for my son who looks diffrent in the eyes today."---- Sounds weird. Anyways, just a few minutes after, Henry started a rythmic twitching. I thought it was a little odd, but it just looked like newborn movements. This lasted for a while and thats what made me a tad nervous. I grabbed my video camera and filmed his actions. I knew as soon as I got him to the doctor that I wouldnt be able to explain what he had been doing. Right before I loaded him up into the car- I saw Henry loose pretty much all coloring. His body turned grey, face lips and tounge turned blue, and his little hands were blue as well. At the doctors office he had a eppisode of color change infront of a nurse, but when the doctor got there, he did much better. As soon as I showed him the video he started talking about some serious actions we needed to take. After some small talk, he decided to get Henry sent over to the hospital for some immediate attention while we wait on Childrens hospital to come get him. So, thats what we did. At the hospital he had a couple more eppisodes of breathlessness, witch is what caused the color change. But no ceazure like activity like seen on my video. Now at Childrens Hospital. --------- We got here and finally got an IV running through the baby. He hadnt eaten in so long, he was very weak. At this point so many tests had already been run from his urine, blood, and anything else they could get from him. All tests came back negative. They went ahead and started treating him for viral and bacteria issues that could be possible. Next- they wanted to give him a chest x-ray. This came back and all possible heart problems seemed to be rulled out. Next was a head ultrasound. Although you cant see much from this, its quisck and easy and came back looking good. Then, we had a spinal tap. This has tons of rusults witch we wont know for afew more days, but most importantly, it told us almost imediatly that he did not have meningitis. Thats good! Later that night- after Henry was on seizure meds and hooked up to an E.G.G that reads his brain waves, he seemed to be stable for the night. He was breathing well on his own and no sign of seizure. This shortly took a turn. He started having moments that he didnt breath for a few seconds (the doctors say this is pretty normal for newborns), but one time it lasted a little bit too long for comfort. They felt like a ventalator would better regulate his breathing so that he didnt have to work so hard. So they had to give him some drugs that pretty well knocked him out and inserted his tube. The next morning, up until the evening there were some worries that he had not recovered from his medication. He had no movement, and had not really tried to breath on his own yet. Around 5ish he began to do some moving. Arms and legs and lips. That made us feel better. He was scheduled to do an MRI to better look at his brain. While waiting the day away for him to go to his MRI, we talked to all of his doctors. The information that we got was...... - So far our condition has not gotten worse. We are creating a base of information that helps us rule some things out 1 by 1. -- There is some fluid from the spinal tap that came back not clear. This could be something as slight as blood that was caused by birth trama, and this can cause ceizure activity, but goes away quickly. OR it could be some sort of bacteria. The MRI should tell us more on that. --- Anything viral has been rulled out, so he has been taken off of that medication.--- The doctors are not as worrid about his comming off of the medicine as the nurses. They said that they wouldnt of expected him to be any diffrent. THAT MADE US FEEL SO MUCH BETTER> AS OF RIGHT NOW- Henry just got back from his MRI, that went well. They did have to give him a slight something to relax him because of his movements picking back up. But I can already see that wearing off. So- next thing on the list is to let the Nurologist look at his MRI results and see what he thinks needs to be done next. Until then- We will kiss his face, hold his little hands, and pray for his little self. Im sure that I have left out so much information. My head is all over the place. I will try to keep you informed via this website, so if I dont answer your phone calls, this is where to get an update. Kent has been the best dad in the world and an even better husband. He has held my hand and Henry's the whole time. WE WILL BE OK> We may not have answers right now, or even know where to go next. But we are here and have each other. Our family is awesome and I appreciate everything that everyone has done. I will update soon. Josie and I are going home together tonight and giving her Nonna a break. Kent will be here to see all that is going on. I will give you more info as soon as I know anything. Keep us and Henry in your prayers. Goodnight. ps- Im sorry for my spelling- the computer here in the room wont let me use spell check-- And im horrible. so sorry!