Big Changes

When I am afraid, I trust in you. Psalm 56:3

Day of Life: 12 - The Big Move

I left Tera at 4:00 yesterday afternoon, and though I called in a few times to check in, I was still eager to see her when I woke up this morning. I haven't spent this much time away from her since I arrived last weekend. Instead of going to the hospital, however, we decided to go to church with Lydia. We took Canon with us and dropped him off at the nursery. I felt like I was abandoning him once again. He was fine. He didn't cry or run after us or anything. But I was a wreck on the inside - I think I hid it pretty well from everyone around though. I've put him to bed the last two nights, and both nights he cried out in hysterics, like he was afraid I wasn't coming back. During the day, he has wanted nothing to do with me, but night time is a different story. This whole separation thing is really taking its toll. But, like I said, he was fine and I eventually got over it.

After church, we went back to Lydia's for a quick lunch before heading to the hospital. Barry still insists on not going because of his pink eye, so he and Canon stayed behind to nap.

When Lydia and I got to the hospital, Tera was doing so well that Stacey asked if I wanted to hold her again. Of course! With fewer tubes and wires to deal with, it was easier to get her situated. Unfortunately, the shirt I wore today had a high neck, so photo ops were not quite as easy. I did manage to get this view of her. It's pretty much what she looks like from my perspective.

I know it looks like you can see more than you want to, but you really can't. It's just the shadows playing tricks!

When we put her back in her bed, I was amazed at how alert she was. She kept her eyes open for a long time, just looking around and wondering what all the blurry blobs were floating around her. I changed her diaper, and she didn't launch into her usual fussiness over it.

I'm so excited that I'm getting to half-way dress her up. Stacey let me put a hat on her. This one was given to us at Flowers Hospital by a group that knits for preemies. After visiting a little longer with our Rock Star, we headed back to Lydia's so that I could spend some time with the male half of our family before they returned to Dothan.

This weekend has really made me miss being at home with them. Of course, I have missed them both terribly all week, but being here with Tera has just felt right. I don't know if it's because she is doing so well or if it's the fact that Canon has behaved so differently this weekend, but I'm already beginning to feel the need for a quick recovery so that we can all be together. It still feels good to be taken care of at UAB, but it also feels right to go home. How do you solve that one?

After Barry and Canon left, I took a much-needed nap while waiting on MyGoo to arrive back in town. When I woke up, I had a couple of messages, but I didn't check them immediately because I was ready to get back to the hospital. When we arrived there, I pushed the intercom button to enter the NICU and told them I was there to see Baby Moss.

"She's not here," said the voice. "She's been moved to CCN downstairs."

WHAT? Apparently, I should have checked my messages. Stacey had called to alert me that this would be happening. In fact, after a little checking, we learned that Tera was still actually in her NICU room, waiting to be transported to the CCN. We were able to go in and walk down with her.

Before anyone gets too nervous, CCN is a good thing. It stands for something like Continuing Care Nursery or Children's Care Nursery. I'll check on that and get back to you. They call it the "step down," but that sounds negative to me. The criteria for being here are no ventilator (which also means no CPAP) and handling her trophic feeds (milk) well. Tera has been doing both of these for a couple of days now. In fact, she is back to weighing over 1000 grams, 1010 to be exact (about 2 lbs. 3 ounces). She's gained 30 grams since yesterday! Her doctors have been on the fence about how soon to move her to CCN. Not sure which Attending finally picked a side, but the decision was made and now we're moving. Until today, I was terrified of her moving anywhere away from the nurses and facilities we have become so familiar with. I was actually hoping that one of them would come home with us whenever we are discharged! In fact, my stomach jumped into my throat when they told me over the intercom that she was being moved. Change is always hard. But after the weekend with Canon and Barry, and after feeling the need to get our tiny family back together quickly, I feel so good about her "stepping down." God is truly making things happen in the perfect order. Any other day, I don't think I would have been able to handle this.

When we arrived in Tera's room, there were a few changes. This is her new bed, ready to be wheeled downstairs.

This is Stacey, one of our favorite nurses. One of our other favorite nurses, Susan, gave Tera a wonderful parting gift - monogrammed baby blankets!

Above, we are getting on the elevator, and here we are going down the hall of the CCN.

And finally into Tera's new room.

I'd say Tera looks happy with everything. Her nurse tonight, Dianne, wanted to see how well Tera could handle being on her back, so she propped her up on a neck pillow to keep her airways open. After awhile, Tera "told" her that she wasn't really enjoying it (her oxygen kept getting too high), so she was flipped back on her belly, her very favorite place to be.

I'm amazed at how comfortable I am getting with taking care of Tera. I changed her hat, repositioned her legs, and found a frog to put under her legs. (That's the bean bag thingy I mentioned in an earlier post. A friend who also gave birth to a preemie educated me on that terminology recently). I know those are small things for a mother to do. But three days ago, I wouldn't even touch her without getting permission. Now, I'm searching through her drawers finding exactly what she needs with no hesitation.

MyGoo and I stayed at the hospital long enough for me to be completely comfortable with our new surroundings before heading back home. What a day! All the things I've been afraid of for so many days now have finally come to a head, and it's already hard to imagine things being any different.

Baby Breaths

Let everything that has breath praise the Lord! Psalm 150:6

This verse was screaming at me this morning as I sat down to write.

Day of Life: 11

What Happened Last Night

Tera got a new bed! I think that's about the most exciting new event of the evening. She did very well off the CPAP, only desat-ing one time but able to bring herself back.

When I got in this morning, this is what I found.

An unnecessary CPAP and ventilator machine. Praise God!

Oh, and I also found this:

Do you notice how the tubes just keep going away. From what I can tell, she's got a feeding tube in her mouth, a TC line connected to her back (that's what's coming out of her diaper), a line that keeps up with her heart rate that is attached to her foot, and a PICC Line in her arm. Oh, and don't forget the cool shades. She looks so much more comfortable now. And, my prayers have been answered. The pig nose didn't stick!

Here is a video of her breathing on her own.

The Plan for Today

It's hard to make a plan for watching, but I think that's what we'll be doing today. Tera has gained 10 grams since last night, bringing her up to a whopping 980 grams. The docs increased her feeds to 5cc. Because they have withheld her feeds twice now, I am always so excited with any milk she gets. I thought it was helping to fatten her up. Bob disappointed me yesterday when he told me how little the milk was really effecting her weight. Of course, its great for her health and development, but she won't be the chubby baby I'm hoping for anytime soon.

The nurse's physical exam showed an improved heart murmur. You can't always tell by the murmur if the PDA is there, but it's a good indication that it is. An echo will tell us for sure later. The decision to hold off on another round of Ibuprofen is standing because of how well she is doing otherwise.

What Actually Happened Today

I arrived at the hospital around 8:15. Lydia dropped me off on her way to work. Nonna is staying with Canon all day because Barry still does not want to take the chance of being around us. This is the first time I have been here alone, and I'm enjoying it. Things are very calm today as far as Tera is concerned, so I have time to watch her and write about her. My sister came in about 10:00 with her two girls. I was so disappointed to learn that the girls were not allowed to go in Tera's room. Of course, I understand, but it was so disheartening that they drove this far and couldn't see her. Ann Steiner was still able to come back and look at her again. She met her for the first time right before she was air-lifted to UAB on Tuesday night. We took the girls to McAlister's where we met up with my friend, Jenny, and her family. I haven't seen Jenny in over a year, and it was so sweet of her to drive all this way to visit.

Then, we went to Lydia's so the girls could play with Canon.

Then it was back to the hospital for me to sit some more and watch. I know people say that you could go stir crazy - and I probably will at some point - but it really just doesn't bother me to sit here with her. How do you get tired of this?

The Balancing Act and Some Really Bad News

Just after lunch today, Barry called to tell me that he was leaving work to pick up Canon so that they could make their way to Birmingham. "I have some really bad news" made me uneasy, but I didn't think it could be that big of a deal. Well, it's really not that big, but it sure seems like it is now. He's not sure how he got it, but he woke up this morning with a crusty eye. Upon inspection, our friend, Kyle, determined that it was pink eye. He prescribed an ointment that Barry put on around noon. He will be contagious for 24 hours, which means that once he's in Birmingham, he can't be around me or Canon until tomorrow afternoon. I was so distraught. I have been waiting all week to see him. Though we were together last weekend when I first arrived in Birmingham, they were not under the most ideal circumstances, and we really got no time to hang out together. Now that I, along with Nonna and Lydia, will have Canon with us all night, I not only am going to miss Barry, but I have to make a decision about what to do about Tera.

Normally, I would leave her around dinner time to eat, then come back in time to meet the doctors during their rounds and hear their plans for the night. Nonna and I needed to leave the hospital at 4:00 in order to get Canon (who, by the way, could have already contracted pink eye himself). I decided that we would spend the rest of the afternoon with Canon and, if I needed to, I would get someone to drive me back to the hospital to be with Tera for a little while before bed. I knew I wouldn't be back to the hospital that night. Though I got a twinge of nervousness about it, I need to spend this time with Canon and to get some much needed rest. Tera's doing great, and I can call in regularly to check up on her. The Balancing Act.

Canon slept the whole way to Birmingham, so he was well rested when we got to him.

Of course, as his mother, the first thing I noticed was his attire.

Barry quickly explained that he had lost one of Canon's tennis shoes, so he had to wear his dressier shoes today. Ok, I guess, but what's the excuse for the rest of the outfit?

It was so great to see Canon. He gave me a big hug, though didn't seem that interested in spending too much time with me. He took off running down the street hoping I would chase him. Of course, I couldn't, and Barry had to run down to bring him back.

I tried to keep him corraled as best I could while Nonna unloaded the car. Barry just tried to touch as little as possible.

Though amazing to spend time with him, it was also very hard. He was fussy and doing some things that I had to get onto him about. He cried a lot, and it really broke my heart, even though he deserved the scoldings he got. I guess after watching Tera struggle with her bouts at the hospital, it was also difficult to watch Canon not be perfectly happy. I was proud of myself for staying strong and not giving in to my strong desire to just let him do whatever he wanted, anything to keep me from feeling so fragile.

We did have some wonderful moments together. We played with his train set together, and he climbed around on the sofa with me while watching Toy Story 2, occasionally laying his head on my chest. During the movie, Canon and I decided to send a picture to Daddy so that he could see how much we missed him.

At bedtime, Nonna changed him into his pajamas and read to him. But she soon called me up to help get him to sleep. I was happy that he wanted his Mommy. This part of the night was even more difficult than before. He cried when Nonna put him into the Pack N Play. I knelt on the floor and just held him to try to calm him down. Singing eventually got the job done, but it started back again when I finally announced that it was time to go Night Night. He began to cry again, even throwing his leg over the side of the bed to try to climb out. I scolded him harshly, hoping that might keep him in after I had left. I stayed with him much longer than I usually do before finally dragging myself away. The uncontrollable sobs came then. "Mama, Mama, Mama" over and over and over again. All I could think about was how abandoned he must feel. I've been gone for almost a week. I haven't put him to bed since last Tuesday night. We are both emotional wrecks. Fortunately, Canon was so tired that he fell asleep within a few minutes, though it seemed like much longer.

I've been naive to think that Tera's daily improvements are the only things our family is living with right now. Though they are something to celebrate every moment, they are only a part of our lives right now. I've known it all along, but it became a reality today that she and I are only half of a much bigger unit that includes our two guys. While her health and growth are the top priority, the rest of the unit cannot go neglected for three months. Like Barry said on the night she was born, "We are going to be a different family now." Bring it on!

And Ten Days Later . . . A Mother Has Her Firsts

Seek first the kingdom of God and His righteousness, and all these things shall be added unto you. Matthew 6:33

This verse is from a devotional of Lydia's called "Come Away, My Beloved." Nonna read it last night and thought it really applied to us right now. I agree.

Day of Life: 10

What Happened Last Night
My 3:00 a.m. call made me a little uneasy. When Tera arrived at UAB, they inserted two lines into her belly button, a UAC and a UVC. The UAC allows them to draw blood for labs, and the UVC allows them to give her meds. The PICC Line was put in two days ago so that these lines could be pulled. There is a high risk of infection if these stay in too long. I thought that the UVC had been pulled the previous night, and they had made plans to pull the UAC last night. When I called Beaonica at 3:00 to check in, she said that the UAC had been pulled but the UVC was still there. I hung up feeling very uneasy, so I called right back and asked to speak to a doctor. They were on another floor admitting a new patient so they would get back in touch later. I won't be going back to sleep anytime soon!

While I was getting ready for the day, I got a text from Kristen, one of my dear "teacher friends." Two of my students were helping her in her room before the other students arrived. I called immediately and got to talk to them. This week, the whole world is celebrating Dr. Seuss' birthday, and our school is having a parade this afternoon. All of the students who dress up like a book character get to participate in the parade. Kristen explained that one of the kids was in full cowboy attire! Can't wait to see those pictures.

When we arrived at the hospital, we found Tera relaxed as usual. Some dear friends of mine who had a very similar experience about a year ago emailed to tell me to take a picture of Tera everyday so that I could record the memories of her being so tiny. I like to take that picture as soon as I get there. It gives me a hint of the night she had and the day ahead.

I think we're in for a good day.

While we waited on the docs to make their rounds, the Respiratory Therapist took the frequency of her CPAP from 10 to 0. This means, that though there is oxygen blowing in through her nose, she is taking all of the breaths by herself with no assistance from the CPAP. The little humps along the top show the breaths she is taking. If the machine were breathing for her, there would be taller green humps where the machine did the work.

The bottom screen shows her Oxygen percentages, pressures, frequencies, and a lot of other numbers that I don't understand. The blank spot in the top left part is usually where the frequency is listed. It's blank!

When the docs came around, they were very impressed with how well she was breathing so we'll continue with these settings. She has only desatuarated (desatted) twice in the last 24 hours, which is a good sign for her apnea. She is on constant medication to prevent that, and it is obviously working. They also addressed the UVC line, which will come out today after their rounds are through. She has one more dose of Ibuprofen tonight to help close up that PDA. The nurse heard the regular murmur during her exam this morning, which tells us it is still there. Dr. Toms says that even if this round of Ibuprofen does not close it completely, he will not do another round of Ibuprofen because everything else is going so well. The PDA is obviously not causing any problems with her other functions, so he thinks that waiting to let it close (if that's what it comes to) will be ok. She will also start her feeds again today at 11:00, 2cc. Her labs showed that everything is working well with her kidneys and digestion, so Dr. Toms feels good about feeding her again. They will stop fluids for about an hour while they give her the Ibuprofen tonight. They'll also do a bili check this morning to see if she needs to go back under the lights. If the color of her skin is any indication, I think we're good there, too. I hate those lights. They make her look blue!

I realized today that I have not been writing about her weight changes. When Tera was born she weighed 1070 grams. Apparently when you weigh this little, you get put on the metric system. Since that time, her weight has dropped as low as 920 grams (about 2 pounds even). That was three days ago. Since then, it has either gone up or remained steady. She is currently weighing in at 970 grams, up 10 grams from yesterday. My dear friend, Neha, sent me this amazing Early Arrival Journal for me to keep up with all of the many details of this experience. It has a conversion chart for me to convert grams to pounds and ounces. So today, at 970 grams, Tera weighs about 2 pounds 2 ounces. They told us that she could lose as much as 30% of her body weight, which by my calculations would put her down to about 750 grams, only 1 pound 10 ounces. I'm really hoping the Rock Star can stay chubby.

Barry and Canon are coming today!!

What Actually Happened Today

Because the UAC was pulled last night, the nurses now have to prick her heel everytime they need to draw blood. I hate the thought of this, but Tera does not seem to mind. This is her getting her foot heated before the prick.

A doctor returned almost immediately to remove the UVC from her belly button. This was the first procedure that I half-way watched. They take a needle and pull something away from the line, then just pull it out.

Very unexpectedly, the nurse asked me after the procedure if I wanted to take Tera's temperature and change her diaper. It hasn't seemed strange that I haven't done these things before now, but she is ten days old. Maybe I should be doing these things.

MyGoo and Nonna tried really hard not to show off any unnecessary parts. We don't want her hating us in 16 years when she brings her first boyfriend home, and we pull these memories out!

Don't I look like a nurse in this picture?

And when it was all over, she back to sleep. The pig nose looks a little better now.

The rest of the afternoon was mostly rest and relaxation for Tera. Bob stopped by to check on us. I talked to him about the fact that she seemed to be acting so much like a regular baby. She responds to light, sound, touch, and sudden movements. She opens her eyes occasionally, likes to snuggle, and cries when she's uncomfortable. I know we can sit and analyze all the potential long-term developmental effects of her prematurity, but all signs point to normal baby. Though Bob said we will not be sure for quite a few weeks, he agreed that her chances for a complete recovery looked really good right now. He is always so encouraging, but I know that he would tell me the truth if something was wrong.

About 3:30, Tera's labs showed that her bili numbers were back up from 4.2 to 9. She had to go back under the lights.

She continued to breathe on her own with the CPAP only providing a minimal amount of oxygen. We had to leave at 4:00 to meet Barry as he came into town, but I found out during a call to Beaonica that the doctors took her off the CPAP completely during rounds. She is now in what is called OE, or Oxygenated Environment. She is completely breathing on her own, but the air in her isolette is oxygenated. At the time of the call, she was only receiving 29% oxygen. Room air is 21% oxygen, so hopefully she's not too far from breathing just like we do. There's always the chance that she could go back on the CPAP, but everything looks good now.

Why Does It Feel So Right To Be Here?

Day of Life: 9

What Happened Last Night
It was a fairly uneventful night. Shannon took some labs about 4:00 a.m. to determine her blood gases and to see how her bili numbers were doing. Though both labs came back showing that all was good, they were still waiting to get orders from the docs. I called in again around 8:30, and though they had not done rounds or given orders, some events had transpired. During the shift change, some of the docs must have come in to examine Tera. She was laying on her side wrapped around a bean bag thingy (sorry, haven't learned the medical term for that yet). They turned off the bili lights, left her glasses laying on the bed beside her, and Tera was laying sprawled out on her back when the nurse came back in. Apparently, this is typical doctor behavior, and it's a bit frustrating to the nurse but no harm done.

By the time we arrived, Susan had fixed everything, and this is what we found:

Finally a baby that looks like a baby. She is so beautiful! Her color is great. I can no longer count every rib in her body, and she is resting so peacefully. She still has her pig nose from the CPAP, but I think I can live with that for long. Is it true that if you hold your face in one position too long it will stick that way? Let's hope not because there is no hope for this child's nose if it is!

The Plan for Today

We learned during rounds that the head ultrasound was done early this morning. I got super confused during this particular run-down of Tera's status (I think I'm losing M.D. points quickly) but Susan soon found out that the scan was normal. Yes! She'll have another one at one month, but no need to worry until then. Our basic plan today is just to keep weaning her off the CPAP. Right now, her gases and numbers look great, so that should be an easy thing to do.

There's that foot again!

What Actually Happened Today

It took quite some time (at least it seemed that way to me) to get the orders to start the weaning process. Because her numbers were so good, they weren't matching up on the screen, which caused her monitor to beep quite frequently throughout the morning. As long as they're beeping for a good reason, I think I can live with it.

We had an unexpected but wonderful visitor this morning. The front desk called back to us that we had visitors but did not specify who. I walked a young girl and her mother walk back and thought, "I have absolutely no idea who these people are." I started running through everyone I knew from Barry's work to people I knew in college. Nothing clicked. When they walked in, they smiled so big and offered a hug. As soon as I hugged the girl, I knew exactly who she was. It was Alyssa, Tera's best friend at Simmons when I was her Aide. They had never been to school together before that year, and they became instant friends. Inseparable, really. Alyssa and her mother caught me up on everything that was going on with her. She will graduate from high school this year, which means, of course, that Tera would also be graduating. They still do special things throughout the year in her memory. Alyssa helped start a club at school called "Team Up for St. Jude" which has worked all year to raise $3000 for St. Jude research. Her friends also release balloons every year on Tera's birthday. They reminded me that Tera's birthday is February 20, just three days before Baby Tera was born. I got a few chills at that one. They were not able to release the balloons last week but are planning to do it soon. I'm already making plans to go. I was so happy to hear that her memory is living on, and I know that Alyssa is a huge part of that.

The best part of my day . . . week . . . month . . . year happened later today. Susan told me that she needed to change Tera's bed completely out. The easiest way to do that is if Tera is not laying in it. We made plans for me to hold her!!! Of course, I was ecstatic. Probably any day before today I would have been hesitant. She just looked too small, too wired-up, too sick. Put today, she looks like a real baby, and I can't wait to hold her.

After lunch, we made our plans, and by 3:00 everything was in the works. It took some time to get all of her cords wrapped up and in place, but she eventually made it to me. I held her in my hands at first so that Susan could get everything just perfect. She didn't fuss or even seem that bothered. She just looked around with her arms and legs hanging straight out. The way that mothers hold preemies here is a method called Kangaroo Care. They put the baby down the mother's shirt so that she can lay skin-to-skin with the mother's chest.

This next picture shows me watching the monitor. We were able to take her CPAP off and just blow oxygen toward her nose. That's the green bag laying over my shoulder. She did great, but occasionally her monitor would ding. I kept a close eye on it just in case.

At one point during the hold, she lifted her head completely off my chest and looked at me, crying. I was terrified that she would hurt herself. We got a nurse in the room, and she helped me turn her head to the other side. This required some moving of wires and oxygen masks, but Tera fell back asleep immediately after laying back down. Another memorable moment was when she got the hiccups. Her body jerked up a little bit, which startled me. After a few rythms of that, I realized what it was. I had forgotten that babies have hiccups in utero. Why not have them now?

My friend, Elyse, who is also up here with her baby but on "better" floor, takes amazing pictures. I asked if she would come down and photograph this precious memory. Of course, she was thrilled and I know got some amazing shots. These are only a few of my favorites.

Here I am waiting on Susan to get her ready.

And this is the first hand-off to get all of the wires and tubes situated.

I love Tera's hair, and I'm praying it doesn't fall out before she comes home.

And those big feet are always a hot topic of discussion.

When I was holding Tera, I noticed that her legs were spread eagle around my waist. They were like little frog legs hanging out on my stomach.

Nothing compares to singing to Canon on a video phone at night, and nothing compares to the fact that Barry will finally be here again tomorrow, and nothing compares to holding this baby for the first time. This is why things just feel right. There is nothing like my life right now.

After about an hour and a half, Susan had to take some more blood for labs, so I had to give Tera up. She was not happy to go from my warm chest to a relatively cold bed. She fussed a good bit, but was precious as usual. I was able to get one of her first close-ups. I still think she looks like my grandmother, Sister.

And then she was out again.

It seems so strange to feel this good about being in this place, but it really does. I know there are still harder days ahead and a lot of waiting around, but God has been so good to my family these last nine days. Despite all of the things that could have gone horribly wrong, things are going amazingly right. And we are thankful!

How Are Barry and Canon?

Barry had an Employee Awards Banquet tonight. He was honored for five years of service to the hospital. I think he was glad I wasn't there. Canon stayed with our friends Ben and Christie and their daughter Claire. After bath time, Claire and Canon laid back to watch Toy Story. This is what Christie calls the "Toy Story Trance."

It's good to know I'm not missing too many new things. I've seen this face before.