After Caroline's bath yesterday, we needed to change the pads on her face that hold the cannula in her nose. So, like any good mother would, I decided to take the opportunity to take her picture with NOTHING on her face. Yes, friends and family, at 6 weeks old, this is the first time I have seen my daughter's complete, unobstructed face (I did see her when she was first born with nothing on her face but, let's face it, I was pretty drugged and don't really remember)!
So, who do you think she looks like? Here are pictures of James and Jack at 6 weeks old.
Jack and James - 7 Weeks (notice Jack is doing the Wreckin' Crew)
Oh what a day! Seems like we have waited forever for today but it is unbelievable that we have come so far in just five and a half weeks.
We finally got the word that we would be discharged today at about 10:00 am. Jesse started making doctors appointments while I took Caroline's prescriptions to be filled. Of course, the drugs she is taking aren't super common so there was some concern about when they would be available. This delayed us a little bit but we were finally able to start the discharge process by about 1:30.
(This isn't a scream - just the beginnings of a yawn. She was actually really content in her seat and on the ride home.)
There were so many things the boys wanted to do with her. They definitely made up for lost time today.
Caroline got to meet Buckle!
She got to sit in one of her fabulous seats!
She got to cuddle up to Mommy and Jack on her very own couch!
She got to be held by James!
and by Jack!
and she got to have a bath in her BIG bath tub! Jack and James were such big helpers. Jack finally got tired of helping her with her pacy and just put it in her hand.
Oh, So happy to be home!
Thank you all for being so faithful to our family throughout this journey! We have a long road ahead of us with this beautiful miracle baby but we know we can face all things through a little faith, a lot of prayer, and an army by our sides! Thank you for standing with us!
The past week has been action packed! After a frustrating weekend where we thought we would be in Austin forever, the Doctor surprised us Monday morning saying that Caroline could be transported the next morning. Apparently they had been working on it for a while and weren't sure if it would workout so they didn't want to tell us yet. Fortunately, the ambulance company agreed to wave the fee of the transport. Otherwise, we would not have been able to be moved! Another one of God's miracles!
Jesse, the boys, and I packed up as quickly as we could Monday evening and left for College Station by 10:00 pm. Caroline left in the ambulance Tuesday morning. The boys were more excited waking up in their own beds Tuesday morning than they were on Christmas morning.
After about 12 hours of recuperating from the trip, Caroline started showing she really wants to come home. She started eating all or most of her bottles and is doing really well on her oxygen.
Today, the hospital staff started making plans for Caroline to come home as early as Sunday. When they started making the list of the things that needed to be done, it was clear it was going to take more than a couple days to get everything together. So, now it looks like Caroline will come home Monday. We are meeting with the Home Medical people tomorrow. They will get us set up with the equipment we will need for Caroline to be on oxygen here at home.
Thank you so much for all of your continued prayers and support! You can see God's hand in every aspect of Caroline's BIG life!
Yes, this is our first picture with all of us together.
Just the boys, Jesse, Caroline and me . . . and Tyrell Higgins, defensive tackle for the Texas Longhorns. You can tell Jack is thinking, "Um, are we supposed to be taking a picture with a Longhorn? I'm not sure about this!" It was so much fun for them and an honor for him to visit. He was very respectful! He is also a starter so look for him on the field tomorrow! The boys and Jesse went down to hang out with about 8 more of the players right after this. They even tried to make their hands "Hook 'em". I think they started spasming though.
Caroline had another great day. She was off the heat all day and was able to maintain her temperature. If Jesse can get her to take both of the next two bottles tonight, she will be at 86% for the day - the most she has ever taken by bottle!
I forgot to say yesterday that she was having her MRI last night. They decided to go ahead and do it to make sure there wasn't a reason with her brain as to why she wasn't able to hold her temperature. We got the results this morning - Unremarkable! Music to my ears!
Just for fun, the first picture at the top of the post was taken by the Child Life employee at the hospital with her camera. This is the one taken with my camera . . .
Looks like I have passed on my photogenic nature to my boys. Not sure how my sister and brother are so incredibly photogenic and most of my pictures look like the above!
Strangely, days go by really fast around here. I suppose that is true anytime you are on a pretty tight schedule - even though the schedule often entails sitting and waiting until the next feeding or next time for meds.
I got down a couple days ago because of the lack of any progress. The first two weeks of Caroline's life were full of forward progress. One constant was that she would beat the odds. If they told us something would happen in two weeks, it would actually happen in one. If they told us something would happen early next week, it would happen before the end of the current week. The surgeon said she would regress before she got better after her surgery but we never saw anything but forward progress. This continued through her move back to the NICU. She got extubated earlier than we thought and were able to start feeding her earlier than we thought.
Lately though, it has seemed like we are stuck. She is hanging on to her oxygen support like Linus hangs on to his blanket. Here's an example:
This is how her canula was for about an hour earlier this week . . .
Her sats stayed at 100% for the entire time. Seems like a good time to try her without it right? We take it off and she immediately drops down into the 80's. The doctors don't want her below 92% so back on it goes. Today, we decided to do another room air trial. When the nurse took her canula off, she decided not to take it completely off but to turn the pressure off - the canula was down around her neck. Again, her sats dropped into the 80s. As the nurse started putting her canula on, I noticed that her sats started increasing immediately but the nurse hadn't turned the oxygen back on. Her oxygen saturation got back up to 100% with the canula on but the oxygen off. WHAT? We noticed that while she turned the pressure to ZERO, there were some tiny bubbles in the . . . thing (I don't know what it is called - whatever the thing is that sends the oxygen through the canula). So now, instead of giving her 1/16 of a liter of support, they are giving her 1/32 of a liter of support and her sats are staying at 98-100%. So frustrating but she is making it very clear that she still needs that support. It seems to me though that she just likes having the tubes on her face! Jesse thinks it must have something to do with her heart and not her lungs. We'll talk to her doctors about that possibility. What that would tell us is that she will need the oxygen support until she has her heart surgery.
Her feedings started to seem like they were regressing as well but she has done so much better the past two days. She took 4 full bottles yesterday. That is the best she has done.
We decided to give her another chance to maintain her temperature by herself today and she did really well. This became a pretty big issue for us. While she could go home on oxygen support and with a feeding tube, they would not let us take her home if she wasn't able to maintain her temperature. BIG blessing that she did better with her temp today.
They are clearly prepping us to take her home. Today, they had me give her a bath . . .
She LOVED it. I clearly have a water baby on my hands. This was her first time to be IN the water.
They also had me give her some of her medicine for the first time and feed her through the feeding tube for the first time. Jesse, the boys and I (yes the boys too) are signed up to take a CPR class on Monday. Apparently this is something you have to do before you can take them home.
I also got a list of her million specialists that need follow-up appointments scheduled before we can go home. This is on my To Do list for tomorrow.
So, please keep praying for us. It really is starting to seem like our homecoming is right around the corner.
As I said earlier, a couple days ago I got down about our situation. The boys could tell I was sad and asked why. I told them that I was sad because I wanted to take Caroline to our house. James patted my stomach and said, "But Caroline's house is in your tummy!" Not sure if this should make me happy because it is such a sweet, innocent thing to say or sad because I still look like I am carrying a full term baby! In all seriousness, when I was very down, I was reminded by a GREAT friend about God's timing. She reminded me of how important it is to know that God has it all worked out and we just need to have faith. Faith that He has plans for us. I decided to start reading through the gospels again praying that I would find hope in our situation and this verse immediately jump out at me.
"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:33-34
I am so stubborn (I know, brand new information!). I have a tendancy to get lost in what I want and have a need for things to work out exactly as I envision. When things don't go exactly as I want them to, I tend to get frustrated . . . mad . . . irrational. Just imagine me sitting with Caroline in her NICU room saying, "Caroline, wake-up and take your bottle. Please, Caroline!" Why doesn't she do what I ask her to do? God's timing, Sarah, remember it is in God's hands! I constantly need to be reminded of how far she has come in her BIG life so far.
A few prayer requests:
Please pray for us to focus on Today. Jesse is much better at this than me so feel free to focus the majority of that prayer on me :). Please continue to pray that Caroline will do well maintaining her temperature. Please pray that she will no longer need her 1/32 of a liter on oxygen (still infuriating to think about - how could that little make a difference?). Please pray that she will continue to do well on her feedings. Please pray that she will no longer have the episodes of SVT (fast heart rate). Please pray that we will be able to go home soon . . . I am scheduled to go back to work in about 10 days!
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Having a baby in the NICU has been compared to riding a roller coaster. We have definitely felt this way both emotionally and through all the physical trials that Caroline has been through. Take for example talking with the doctor at any given time. It often sounds a little something like, "Well, Caroline isn't holding her temperature which we would expect from a premie. Since she was full term, we are a little puzzled by it. Do you remember hearing her cry loudly when she was first born? No? Well, I was noticing that her cry was really soft too and she seems to be very mild mannered. This in conjunction with her not holding her temperature could be a sign of a neurological defect. She is doing great and looks great though! She should be able to go home soon. Congratulations!". Me in response, "Wait . . . What?"
Jesse and I have been taking turns sitting with Caroline since the boys are here with us now. Both of them have coughs so they aren't allowed to come see her (we got it checked out by a doctor and it is allergies but they want them to stay away until their symptoms are gone). Because of this, I am often by myself when the doctor comes in. Jesse would know how to decode all the doctor speak but I am always left wonder what is routine and what is something to be concerned about. You never know if the doctor is just "covering all the bases".
She is doing really well though. People always comment on how much better she looks when they come in after not seeing her for a couple days. She got bumped down again on her oxygen support. They have put her on a level of support that we could go home on if needed. Her sats have been 99 and 100 all day though so I think they are going to try a room air trial again later today or tomorrow. This is just where they take away her oxygen support to see what she does.
She is also doing well on her feedings. I think she is probably somewhere around 80% of the feeding goal. She has been waking up hungry now which is so much easier than waking her up to feed her.
Caroline has had a couple more bouts of tachycardia (heart rate in the 240's). She has been able to take herself out of them though so the doctors and cardiologist aren't concerned. We aren't sure yet if this will stop after she has her heart surgery.
So, yes, having a baby in NICU is like being on a roller coaster. Because our days are pretty calm now, just monitoring her feeds and oxygen support, I feel like we are on a kiddy park roller coaster. We haven't had anything happen that has been life threatening for a couple weeks but everytime I hear the monitor beep, I wonder briefly what might be wrong and will the doctors and nurses be able to fix it. Makes me nervous about taking her home and not being able to look at a monitor to tell quickly if she is okay or not.
Please continue to pray for our family. Pray that Caroline will do well on the room air trial and that she will continue in her stamina with feedings.
We seem to be in a constant communication circle with the insurance company. It doesn't look like they will pay for the transport back home. Jesse and I are okay with it though. We decided to bring the boys to Austin to stay with us. We just couldn't stand to be away from them so much.
Caroline is doing amazingly well and I am confident that we will be home-home very soon. She did so great with her feeds today; she is making great progress. She had almost all of her milk by mouth - very little had to be fed to her through the tube. You can tell she is really getting the hang of it.
She is also doing well on her oxygen. I talked to the Respiratory Therapist tonight and he is going to work extra hard on getting her weaned. It seemed like we kind of stalled on that front. Not because she wasn't tolerating it but because other things seemed to be at the forefront of peoples minds.
We have been having fun dressing her. I didn't get to take any pictures today but will hopefully tomorrow.