It’s been 130 days since Catherine was born. This is the first night she’ll spend outside the hospital. This is the first night she won’t be hooked up to monitors. This is this first night that we’ll spend as a family under one roof.
Thank you everyone for their support. I do have to fill you in on the details. As of now, Catherine’s home.
Wednesday, December 25 – 4:08 pm
This hasn’t been a normal Christmas season, obviously. The house isn’t decorated with its usual garland, colored lights, and the stockings aren’t hung by the chimney with or without care. I didn’t even get the Christmas tree up until this past Sunday. We haven’t been too focused on the holiday this year. Everyday we’ve been going back and fourth from the hospital to home without much time of any other reindeer games. When we came home from the hospital last night we completely blanked out and forgot that stores closed early so we missed any grocery shopping.
I hope this makes up for the Christmas cards we didn’t send out.
I’ll send out a major update in the next few days. Merry Christmas everyone.
Saturday, December 14 – 12:03 am
Day to day update of this blog aren’t going to be a reality. From day to day there’s no real change enough to make a blog post out of and I prefer to write in longer form (and yet, I love Twitter, go figure). Catherine is trending in the right direction, so things that aren’t 100% positive have been figured out within a day or two and then we’re on to the next challenge.
But it’s been three weeks since I started this blog and I figured it would be a good idea to update you as what’s been happening. Jessica and I were scared three weeks ago; not much has changed since then. Of course there was the uncertainty of when Catherine was going to be born to if she would survive to now hoping that she’s eating and growing.
We found out what some of the causes with Catherine’s issues and we’re now seeing better results. It all starts with her lungs. Way back in the beginning when Jessica was first admitted into the hospital, she was given beta steroid shots to help improve the baby’s chances of survival. One of the key benefits of this was to help strengthen Catherine’s lungs in case she was born early.
We have discovered that Catherine does have a power set of lungs; mixed with her long fingers I’m going to get her trumpet lessons when she gets older (maybe tuba, but that depends on what her mother says). This was some of her success for the first few days; by being able to breathe on her own, she’s helping along with the process. We were able to get her off the breathing tube quickly to the NIV NAVA mask, and then to oxygen nose plugs every once in a while.
Since she came early Catherine’s not supposed to be breathing oxygen, but the fluid inside of a body (think of the reverse of The Abyss). Even though her lungs are great, her body isn’t ready for the full time work of pumping air in and out. We take it for granted, but her brain hasn’t said “we’re on board for the long haul” for breathing which is why she sometimes stops. The NIV NAVA helps with the times she doesn’t breathe, but it’s the rest of her body that suffers.
It’s here that the heart rate slows down and with her lack of breathing that cause trouble. It’s called a “Brady Event“, and this is where we, as parents, start to worry. It’s normal for premature babies to have these (especially so young), and the way to get her heart rate up again is to stimulate the baby by touching them. Catherine was also sensitive to light and noise which would cause these Brady events to happen more frequently. When she would dip down to around 60 BPM (around 160 is where they would like her) for 30, sometimes 60 seconds at a time, that’s when we would worry. She’s still having these events, but at less frequency. Catherine’s even pulling them out herself without the needed stimulation from the doctors or us most of the time. What was the key?
Caffeine.
Yes, baby Catherine loves straight caffeine.
She gets two doses of caffeine a day to help keep her heart rate up constantly. It works the same for her as it does for us; but for her it helps keeps her going instead of just trying to wake up in the morning.
As you saw in the last post, Jessica was able to hold Catherine and she did it today too for the second time. On Monday it was about for an hour and today it was for around 3 1/2 hours. She can’t do it everyday and we have to be very careful when she is out of the incubator; her body temperature is the one main thing that can go wrong. Catherine’s still hooked up to the breathing machine and the sensors, but the skin to skin contact is beneficial to bother mother and daughter. I know that Jessica has loved every minute of it.
Jessica and I have also started to help take care of Catherine by changing diapers, taking temperature and other various small care-givings. Her diapers are still too big for her, they’re about 2/3 of a dollar bill. She does poop and like other babies you wonder how she could’ve fit all of that into her small body. However, Catherine has rewarded us.
She’s opened her eyes.
Now, she can’t focus and we have to keep the lights down low since she was supposed to be in total darkness, but she’s “looking around”. When she’s receiving attention, Catherine turns her head to whoever’s talking or interacting with her and tries to see what’s going on.
We’re not out of the woods yet. For each hurdle we jump, there’s a higher one in our way. Catherine’s doing fantastic so far and she just needs to continue to plow ahead. The next two major issues facing her is another blood transfusion tonight and looking at inflammation in her lungs due to the breathing machines. Both of these are seen in every premature baby but they’re still obstacles to get through.
But those are topics for another day. I’m literally falling asleep as I write this. Things I wanted to write aren’t coming to me as easily, so I’ll just have to write them in a future post. I used to be just a night owl and love to write at night. Now that’s just a thing of the past.
One day at a time.
Monday, December 9 – 1:15 pm
There’s plenty to tell, but I wanted to share this photo. This is the first time Jessica has been able to hold Catherine and she’s out of her incubator since birth. Things are going in the right direction.
More later.
Tuesday, December 3 – 4:25 pm
If you’re not from Seattle, you might not have known there was a football game played here last night. The Seattle Seahawks “took to the woodshed” the New Orleans Saints on Monday Night Football cementing our team as the one to beat. If you follow the Seahawks closely, you might recognize the title of this post as something that head coach Pete Carroll says.
You can’t win the game in the first quarter.
You can’t win the game in the second quarter.
You can’t win the game in the third quarter.
You can win the game in the fourth quarter.
There’s an overused cliche of examining a football game to war, but it’s an apt comparison. The game is about X’s and O’s, and it’s about matchups and out thinking our opponent and it’s about field position and it’s about attrition.
You will not win every play. You will not pay a perfect game. It’s about the battle and winning the game over all.
And that’s the best way to describe what’s going on here (Ideally, I would’ve used a baseball season metaphor, but it’s football time now).
You have to look at the big picture. You can react at individual plays (days), but you can’t get so emotional play by play. If there’s one thing that’s not working, you make adjustments. This is what successful teams do.
For a while Catherine was on a great line for long term success. This surprised everyone on staff for how small/young she is. Yesterday was our first real “challenge”; it’s not a setback but it’s what everyone here is calling a more “normal” time in the NICU. Catherine’s still off of the breathing tube, and she hasn’t needed to go back under the blue lights yet, but there have been some issues.
Her heart rate isn’t constant and sometimes drops to low levels where they have to come in and “wake her” to help her brain again. This is common; her brain isn’t mature enough to regulate her heart rate yet (again, because she was born early). Two PICC line surgeries were unsuccessful so it doesn’t look like she’s going to get on. Mother’s milk isn’t always staying down and she’s not eating all of it. A small fungal growth on her armpit is growing (though that is being treated by topical cream).
But I got to change her diaper today. I used rubber gloves and she stayed inside her humid incubation chamber. It was a poopy diaper. It was okay that I needed help (changing a one pound baby’s diaper is way different than changing a 18 month’s old). There are good things happening.
It looks like we’re going to struggle most days. What we had in the very beginning was odd, surprising and a big break. We’ve never taken it for granted. There’s going to be that battle everyday to get better slowly. We’re fighting for that field position, or winning the war on attrition. And when we break through, it’s ok to celebrate. We just can’t get caught up on when we have days like yesterday, or even today.
The staff here aren’t worried about Catherine, this is their job. They’ve been part of battles before. As parents, Jessica and I are worried about every little thing. This is our only time through this. We have to buy into their system just like the Seahawks have down with Pete Carroll. You can’t get caught up in every little play in football; you can’t get caught up in every little situation here.
Catherine’s doing good. There’s no reason for panic at this time. She’s trudging along like Marshawn Lynch, fighting for that inch. You just wish she was running through people every day instead of just gaining a yard here or there.
One day at a time.
Saturday, November 30 – 4:15 pm
Yesterday was hard. Saying goodbye had tears. Your mind tells you that you need to leave, but your soul wants to stay. At this point, there is nothing for us to do and let the doctors work. When we were leaving, another new mom was wheelchaired out of the hospital with her newborn. Yeah, it hit hard.
Part of us stayed though, a reminder that we haven’t left her. A little glass angel that my mom got for Catherine sits inside the incubation chamber. A well-loved Shamrock Care Bear that was a good luck charm for Jessica was brought in by her mom sits on a shelf vigilantly watching over everything.
Last night was certainly exciting to be a Care Bear on the wall. Catherine had her breathing tube taken out and is now being assisted by a machine. The difference is huge: Catherine is now breathing on her own instead of breathing for her. The “NIV NAVA”, Non-Invasive Ventilation Neurally Adjusted Ventilatory Assist, is the machine she’s currently hooked up to and is quite new. If she stops breathing, the machine “takes” one for her much like a sleep apnea machine does. It’s a very new piece of technology for NICUs that not every unit has She doesn’t breathe all on her own all of the time, but it’s all normal.
Though she did get too much oxygen into her stomach this morning. Around 40 mil of air was in her stomach and Google tells me that it’s about the amount of a shot glass for reference. Since she’s now only getting about 16 mil of milk a day for feeding, this obviously was too much. The example I was given was that imagine that you ate too much at Thanksgiving and it’s harder to breathe. That’s what was going on.
Now, I was vetoed by both the nurse and by Jessica by saying she was “deflated”, but the air was removed and Catherine’s doing great. No long term effects. The machines were adjusted and she’s still off the tube. Again, the machine does do some of the work for Catherine to breath, but she’s in a much better position with the tube out of her throat for the long term.
Jessica received some much needed rest last night and Lizzy, who had been staying at her grandparents, decided that she enjoyed her new bed enough that she fell asleep quickly as well. This gave me, an introvert, a chance to take a few minutes to myself. I think everyone enjoyed their down time.
Coming back to the hospital was a great feeling for us. While we don’t get to spend as much time with her we’d like with everything else going on, it was amazing to see her again. Nothing really “changed” (other than the obvious Macy’s Thanksgiving Day Balloon air incident), and helps the continuity of like we never left. That helps with the sting of not seeing her for almost 24 hours.
Tonight will be another milestone as they remove the umbilical wires and insert a PICC line. This is a long-term IV that all premature babies get and is nothing new. Up until this point, the doctors have been running IVs and tubes through a small attached part of the umbilical cord but due to risk of infection they can’t do this forever. A PICC is normal and “safe”. If all of that goes well, tomorrow we might be able to hold her for the first time.
All of this is great news. We’re cautiously optimistic. The only “setback” that we’ve had is the Catherine might go back under the blue lights again since her biliruben is climbing but it was to be expected. The atmosphere are Catherine is very positive so it’s been keeping us very optimistic. The neonatologist is called her a rock star.
One day at a time.
Alternate post titles: In the Air Tonight, The Wind Beneath My Lungs
Friday, November 29 – 8:30
I hope everyone had a good Thanksgiving. We spent ours in the hospital and couldn’t be more thankful. Catherine is continuing to do well. Really well.
What you see in the picture to the right is Catherine under what the nurses call “The Blue Light Special.” It’s called a bilirubin light used for phototherapy and it’s just for the bilirubin in the blood stream. This report explains the science behind it (the liver can’t help filter the blood just yet since it wasn’t doing it in the womb), but it’s pretty common in premature babies and other newborns. We experienced the same thing with Lizzy when she was born because she had jaundice. Lizzy was under the light for about 72 hours.
Catherine was under it for only over 36.
That doesn’t mean that she’s never going back under it, but she’s off of the light for now and holding pretty steady. In fact, she’s holding pretty steady in almost every stat. There’s a chance that her breathing tube might be out by tomorrow. Again, that’s not permanent, but that’s how well her lungs are adapting to having oxygen, not fluid.
Maybe, if all goes well, we’ll be able to hold Catherine by the end of the weekend.
Maybe.
Things have been go so well thus far that I’m kinda worried about when the first bad event happens. We’re keeping optimistic but we’re keeping the night light on when we go to bed, so to speak. Catherine’s weight has dropped a little since birth, but that’s not worrisome, all newborns lose weight and it’s well within anything the doctors have said.
When the doctors are worried, that’s when we should be worried.
They’re doing a fantastic job of keeping her status quo and better than when she was born. Obviously that’s the point, but it’s working. We have to keep our excitement contained however we’re extremely happy.
Because she is so young/small, we have a private room. We can spend as much time as we want there and even spend the night if we wish. I see Jessica doing that while she’s on maternity leave; and if there is supposed to be a snow storm this weekend I want to have Jessica close to Catherine.
Things have been hectic so I have many texts/emails/Facebook messages to return. If I haven’t responded, I will. I might open this up to a Q&A if people have general questions about everything. I know I haven’t gotten to the day of her birth, and I’m missing some of the small details but at the moment, I just don’t have the time. Even writing up I’ve been tasked to do various other things.
Jessica gets discharged today. This will become the next test of how we’re going to deal when we leave her behind. We’re going to come up here everyday and spend time with Catherine. While we can’t hold her yet, there will be milestones that we can experience with her and eventually we’re going to take over some of her duties (changing a diaper, feeding her). It’s during these times of bonding that I imagine that I’ll get into a more regular pattern of writing. Her room, while it can be scary at first because of all of the machines, is actually very calming.
It was one week ago that we came to the hospital. Scared, we hoped that everything would be alright. We were told the baby would come at anytime. We were told that there could be issues. We were told that he might lose the baby.
A week later we have different fears. At the moment, I’m still trying to sort out how I’m feeling as it’s like nothing I’ve ever experienced. Through this blog I’ll start sorting through them (I swear it won’t be like high school stuff, (I hope)).
Right now, we’re getting ready for our next step in having a baby in the NICU. I want to thank everyone with all the support they’ve given us. It has meant a lot and has given us strength. We’re telling Catherine about how much she’s loved.
One day at a time.
Wednesday, November 27 – 5:25 pm
The first day of Catherine’s life has been going well. I haven’t written anything because I’m tried and I’ve been running around doing various tasks.
Both Jessica and Catherine have been as well as can be considering the situation. We’re now leaving the “Honeymoon period” of 24 hours past the birth. Everything tends to look good for the first day and this is the point where things might take a turn. At the moment, our Magic 8 Ball says “Outlook Good”. There haven’t been any readings that the doctors have been worried about. She’s already been fed mother’s milk which is fantastic. I’ll dive into what’s going on with her in a future post (obviously, that’s one of the points of this blog).
Jessica’s adjusting to post C-Section life. She’s sore, but loving the pain medicine. The main thing we’re worried about is a possible infection, but there’s no sign of that. She’s in good spirits, especially seeing Catherine and hearing from the doctors all the great news. It’s expected that we’ll be discharged on Friday unless there’s a change.
You’ll get the full story of yesterday hopefully tonight. I’m not going to deprive you the opportunity of laughing at me. But all is good. All is great. One day at a time.
Tuesday, November 26 – 3:40
Presenting Catherine Anne Rothe.
590 grams. 1.3 pounds. 2:23 pm. 24 3/7 weeks, just over 14 weeks early.
At the moment, both mother and baby are doing well.
Now begins our adventure.
Tuesday, November 26 – 1:25
We’re expecting to go to the Operating Room in about 30 minutes. Things are moving quickly.
15 Weeks Early 