Better late than never...

I know. It's been 10 days since I've posted anything. Can we just say its been a long 10 days for me?

I started chemo last Tuesday and that wound up being much harder than I anticipated. For some reason I just assumed that I would feel the same way I felt the time before. Wrong. Don't get me wrong, it wasn't a terrible week, it just didn't go as I planned. I thought I would feel better and have more energy this early in the game. I am feeling MUCH better now.

Ellis is doing great! He is now on a regular low flow cannula and has started trying to bottle feed. He's still young (gestational age) to be taking a bottle so he's mostly just practicing with 1 to 2 bottles a day. He's doing well. He now weighs 4 lbs 4 oz and is starting to chunk up. I'm so ready to have a rolly baby!

Slow and Steady

Slow and steady wins the race, right? Ellis has been growing along well. He is now 3lbs 9oz. He is still working on perfecting his breathing while eating. He has his good days and his just par for the course day. I'm glad that he hasn't had a bad day.

I made a decision yesterday. The NICU should not be in the women's center. I am going to start a petition that the two areas should be completely separate. It's frustrating going into the hospital to see my baby that I can't bring home when I am passing women who are leaving with their beautiful full term babies. I don't dislike them. I want to BE them! I want that and some days it just plain sucks seeing that on my way to see Ellis. It's hard to focus on his progress because of that sometimes.

Todd and I went to a premie support group at the hospital last night. I really enjoyed it. It made me feel like not such an oddball. Everyone there had their babies super early and are going through or have been through the same thing as us.

I met with Ellis's occupational therapist yesterday and we are working on pacifiers or thumbs. Ellis sometimes takes a paci and other times he just lets his thumb sit in his mouth! So funny!

We are both doing well. Just taking it one day at a time.

Quick Update

This is just a quick update because things are so busy lately.

Ellis is doing well. He is still struggling with his breathing because of acid reflux during feeding. They have bumped him up to a 4 on his high flow cannula and put his feeding tube a little further in his stomach. So far he is responding well to the changes.

The nurses and doctor's assure me that this is normal for his gestational age and isn't anything to be concerned about. I'm just want him to be comfortable.

Ellis now weighs 3lbs 6oz. He "for real" smiled at me for the first time yesterday. (Sorry no pictures because I was too busy smiling back!). I was making a "mpp!" "mpp!" noise and as he looked in my direction he cracked this huge sidways smile. It happened a few times but each time Todd would try to record it Ellis would not cooperate. You'll just have to take my word for it.

Overall we are doing well. Lots going on, but we are ok. I'm feeling good myself and am plugging along.

Stubborness Runs in the Family

Posted 2 days ago

Ellis has a note on the side of his isolet that lists the reasons he knows he is special. One of them says "Because my Daddy will miss ESPN Game Day just to be with me". Todd and I left the house during the Auburn/Ole Miss game and other than finding the game on the radio for the drive down Todd didn't seem all that disappointed. I guess Ellis's reasons he's special are right on the money!

Ellis is doing well. He now weighs 3lbs 4oz and has been moved into a double wall isolet. Basically the change in isolet means that he is able to stay warm enough on his own and doesn't need additional heat in his bed. As Ellis has grown and begun to eat more he has also developed what many premies struggle with - acid reflux. It scared me a little in the beginning because his breathing and heart rate would both dip and he would need to be stimulated to get back into a tolerable range. The nurse practitioner explained that all of this could be due to acid reflux, his PDA getting worse, or an infection. Acid reflux I can deal with. Worsening of his PDA or an infectioned sounded scary!

They did another echo of his heart and the cardiologist came by and listened to his heart. He explained to me that his PDA was still moderate to small but had not grown. It wasn't bothering Ellis and wasn't sending additional blood into his lungs, so he did not feel that the PDA was contributing to his drops in breathing and heart rate. Being an interested mother and having a lot of doctor experience I tried to listen well and understand what the cardiologist was saying. I asked a few questions and repeated a few things back. At the end I said, "Wow! I think I understand what you just said to me." to which the cardiologist replied, "Congratulations. You just learned in 15 minutes what took me 14 years of school." LOL! A cardiologist with a sense of humor, who knew!

Infection has also been ruled out for Ellis so right now we are operating under the assumption that he has acid reflux. He has been put back on his high flow cannula which Todd and I were both bummed about but he is still breathing room air and doing relatively well. His feedings have been slowed down (he gets food 24hrs a day!) to help his body digest and ease the reflux symptoms. It feels like a step back but Todd and I have both been assured this is common and should be something he grows out of. Ellis and I had a serious chat about his remembering to breathe while eating to which he sat quietly and did not comment and then proceeded to hold his breath - booger!

All in all we are doing well. I'm healing well from the port placement with minimal soreness. I'm in denial about my PET scan and refuse to call my doctor to find out the results. I will find out when I see him, but as of this moment I don't want to know. I'll cross that bridge when I get there. Right now I'm happy and looking forward to the future and bringing Ellis home. No time to think about sucky cancer.

Specific prayer requests:
- Ellis will continue to grow and learn to breathe through his reflux
- I will continue to heal from my port placement

Port Placement

Posted Oct 11, 2012 4:45am

Yesterday I had my port placement. It went well. I was mostly concerned what side they would place my port because after I had my original port removed I got a tatoo that says "Love the moment" to remind myself that things may be hard but that doesn't mean we can't have joy through our trails. I was afraid if they put my port on the left side and messed up my tatoo I might not "love the moment" like I should. LOL!

There was no need for my vain worry because my port is on the right. I learned that surgeons place ports on the left but radiologists place ports on the right. They use your jugular to thread the tube through and get a clean line close to your heart. To be honest the word "jugular" freaked me out. All I could think was, "isn't that what killers slash in all those horror movies?!" After a little Ativan and anesthesia I honestly didn't care what they did. I woke up hungry, rested, and wanting to see my baby.

Mrs. Janet (Todd's mom) stayed with me through the procedure and Todd's dad went and hung out with Ellis. It made me feel good knowing he wasn't missing his family time since I wouldn't be able to visit him like normal. Mrs. Janet wheeled me up to the NICU. I touched Ellis a little but didn't hold him since I still felt a lot of my anesthesia and was starting to get stiff. Mrs. Janet read him The Lion King and then we said our goodbyes and headed home. I needed to rest.

I slept the remainder of the day. Now that the anesthesia is fully wearing off I'm starting to get stiff but its not painful. I basically have a little extra plastic in my body. It's so small it doesn't really hurt persay, but the fact that you shouldn't have random pieces of plastic placed in your body makes it a little uncomfortable until your body adjusts.

Ellis is doing great! He is finally over the 3 lb mark weighing in at 3lbs 1oz. He's still having trouble gaining weight like they'd like so he now has increased calories and protein added to his breast milk. (Kind of like a baby body builder!) He did well on his low flow cannula at 1.5 yesterday and only had 1 episode where his heart rate and breathing dropped. The nurse said she can still hear his heart murmer related to his PDA and if that continues she will get the cardiologist involved again sooner than later. He has become more active and loves to look around and be held. I held him for 3 hours straight on both Monday and Tuesday which is why I didn't update the blog! Too busy holding my baby. I love just watching him. He's starting to develop a personality which cracks me up. I predict a stubborn, strongwilled child. Help me!

All in all Ellis and I are doing well. I'm sore healing from the placement and he needs to gain weight, continue to breath well, and have his PDA fully close. Todd is our rock through it all; taking care of both of his babies.

Postpartum and PET Scans

Posted Oct 5, 2012 9:47pm

 

Happy Friday everyone!

I've started doing it again....writing blogs while I can't get to sleep, that is. But, this time I'm too tired to drag myself out of bed to get the iPad or laptop. Last night as I laid awake I wrote the most heartfelt and poignant things. It was a masterpiece! Unfortunately, that blog is now lost in the recesses of my brain never to be shared simply because I lacked energy. Clearly I have a lot to learn as a mom because isn't the first rule of mommy hood "What does lack of sleep have to do with it?!" Like I said, I've got lots to learn.

Most of the time on the blog I've talked about Ellis, but this is really about the two of us and our journey together. Today I had my PET scan. First off, let me start off by saying to all of my girlfriends who have been through childbirth - "You forgot to tell me about the insane hormones after childbirth!" Not cool, so not cool. About 5 days after having Ellis I turned into this crazy ball of hormones. I seriously cried every morning and every evening for about 6 days straight. I still have to give myself pep talks to avoid crazy crying lady. So, wrap all those hormones and crying up with a baby in the NICU and me with cancer, and the sheer idea of a PET scan was enough to whip me into a panic. We are talking sobbing, shoulders heaving, mascara running, hot mess. It wasn't pretty.
Thankfully over the last couple days I have started to calm down and my hormones are slowly leveling out. Today I was able to face my PET scan with optimism. I didn't cry. I kept my cool. I prayed a lot. I don't know how many of you have had a PET scan but mine went a little like this:

- IV put in and injected with a radioactive isotope.
- Drink nasty chalk stuff. (Ick!!!)
- Lay in a quiet room for an hour to let the isotope do its stuff.
- Go into PET scan room and ly down while a machine that looks a lot like a CT scans me for about 15 minutes.

Overall, not a terrible experience. I was afraid that I would start freaking out during my hour wait time, but I kept my cool. I was actually singing "This Little Light of Mine" in my head and just talking with God. He knows how I feel about the situation. I think it's unfair. I think it sucks. But, my cancer wouldn't have been found so fast if I wasn't pregnant. Life is funny... I certainly don't understand the situation but I'm going to choose to believe that it will all work out for the good in the end. I know that is all sappy, but humor me, ok? Oddly enough, I feel ok about the PET scan.
After the PET scan I went back to hang out with Ellis. Ellis is doing great! He is now 2lbs 14oz. Todd thinks he's going to break 3 lbs this weekend. We shall see. Ellis has been having some episodes where his breathing decreases and his heart rate goes down. It's a little frustrating since he sped through the bubble cpap and high flow cannula that he's now slowed down. But, he's still little and needs time to grow and mature. He's only 2 weeks old. He is eating all his food and they've been able to remove his pic line. Which means he can wear clothes!!!! I'm so excited about him wearing clothes. Thanks to a friend of my parents I am fully stocked with preemie clothes. They are still huge on a little 2lb 14oz boy, but its so stinking adorable!

Happy 2 week birthday Ellis!

Quick Update on Ellis and me!

Hi Everyone! I'm sorry I wasn't able to update the last couple days. The website and my iPad at Northside were not getting along.

Ellis is doing great! The cardiologist took him off his medicine for his PDA because he thought it showed enough improvement. His PDA is still not fully closed but the doctor believes it will close the remainder on its own and doesn't want to subject him to more medicine that's hard on his little tummy.

Ellis is now back on normal feedings and is all the way up to 18ml (his goal is 22ml). The nurse practitioner told me this morning that if he is able to go up on his feedings tonight they will be able to stop his IV.
He is also now off the high flow nasal cannula and on a low flow cannula. He's doing good but is needing a little more oxygen with the low flow. The nurse said she is ok with that and will let him continue to progress and develop today.

Todd and I were able to give Ellis a bath Tuesday night. That was hilarious because he was squirming all around and the nurses manhandle these little things. They really are very resiliant.

I am scheduled for my PET scan this Friday and will then have my port placement next Wednesday. As of today I am off my motrin (which I've been using for pain management) because it is a blood thinner and I have to be off blood thinners for a week before the port placement. So, now I'm flying solo on good ol' Tylenol.

Please pray for Ellis's breathing to continue to improve, his PDA to close completely, and for him to continue gaining weight. Also pray that my PET scan shows the doctors what they need to see to treat me properly and that I won't be too stiff after my port placement to not be able to hold Ellis for too long.

Thanks!

Rainy Monday

What a yucky day....Ellis has been more active today and looked all around all afternoon. He obviously doesn't care that its raining outside.

The doctors discovered that Ellis has a PDA (which the way I understand it, is a vein/valve that is used when they are in the womb that circumvents their lungs to get blood flow back to the heart). After birth the PDA closes and isn't used again. Since Ellis was born at 28 weeks his PDA is still open. It isn't bothering him but it is something that needs to be closed. He has been on medication for the past 2 days (one dose every 12 hours) for the past 2 days to help close the PDA. He will have an echo again tomorrow morning and see the cardiologist to see if the PDA has closed.

Ellis is doing great. He is now on a 2 on his high flow nasal cannula (like his cpap but less). He is breathing well and stays on room air pretty much all day.

Ellis now weighs 2lbs 13oz, so he is back to his birth weight! They have pulled back on his feedings some while he is getting the PDA medicine because it is harder on his tummy. Once he's off the meds he will go back to his regular feedings and start bulking up again.

I'm doing well. Healing as quickly as I can. Going to see a tiny little boy each day gives me incentive to get back in the swing of things quickly.

Ellis and I have enjoyed reading "Harry Potter" and are just waiting to see daddy later this afternoon.
Please pray for the PDA medicine to do its job quickly so Ellis can get back to his regular feedings.

Thanks!

Quick Update

Ellis is still doing great. He is starting to gain weight faster. He is now at 2lbs 12oz - almost back to his original birth weight. My dream of having a rolly baby with cubby cheeks is in sight!

They decreased his cpap from a 4 to a 3 and he is still rockin' it out. His breathing is holding steady.

He is now eating 10ml of milk. Hard to believe he was only eating 2 ml at the beginning of the week. He should go up on his feedings 2.5ml each night as long as he's doing well. His goal is 22ml.

He's sleeping well and loves being on his side. Now, I'm off to sleep myself!

One Week Birthday!

Posted Sep 28, 2012 5:03pm

 

Ellis is one week old today! In some ways it seems like a really short time but in others it seems like I've had him forever.

He's doing really well.

Ellis has tolerated his feedings well and hasn't had to miss any feedings lately. He has gained weight and now weighs 2lbs 9 1/2 oz. By the rate of his feedings he should start bulking up quickly. When I spoke with the PA this morning she said he was doing well with his decrease on his cpap (move from the bubble cpap to the lower pressure one) that she is going to start weening him off the cpap entirely. He is still breathing room air and hasn't had any problems.

The nurse did mention that his urine has been a little low and his blood pressure was low when he took it at first. When he retook his blood pressure it was back to normal, so they are just going to watch his urine output, but right now it isn't anything to worry about.

I started reading "Harry Potter" to Ellis. Yes, you read that right - "Harry Potter". All of his baby books went by so fast. He needed something that would take some time and be an interesting read. So far he seems to like it.

Today while I was reading to him I noticed a little spit up. The nurse said that was normal with his increase in feedings and cleaned his mouth and left a wipe for him to drool onto. I continued reading. As I read I noticed Ellis was becoming more and more fussy. I tried to calm him down because he was showing the stress signs I had been taught. He was having a meltdown! Oh no! This was my first real mommy test! Yikes! I tried to fold his little arms into a fetal position to calm him like I had been taught but he wasn't having any of it. It was coming. I could feel it. The dreaded baby cry which will cause me to cry with my overactive hormones! Failure! I would be labeled a failure as a mother after just one week on the job. I had to think fast...."he's on his back!" "how did he get onto his back?" "I bet that's what he doesn't like". I quickly found his nurse and had him turned on his side. Disaster avoided and my status as a good mommy was still intact for another day.

Ellis is sleeping now and I'm just chilling in the glider.

Happy one week birthday Ellis!!!