We are still at St. Mary's in Richmond. We will get transferred to UVA on the 5th. Surgery will be early the week of the 9th. We are guessing the 9th or 10th. I will update once we get the real date. All of us are doing well. Just getting to know our wonderful doctors and nurses :) We are waiting to gain a bit more weight but more importantly for there to be an opening in the surgery schedule and a bed available at UVA.
- Age: 3 months / 13 weeks
- Weight: 9 pounds 2.6 ounces WOW!!! She is starting to get some fat rolls!
- Height: 22 inches (about a week and a half ago)
- Head Circumference: Not sure. At two months it was 14.75 (25th percentile)
- Hair Color: Brown with red highlights
- Eye Color: Grey blue (the doctor said this will change to her permanent color between 6 and 9 months)
- Diaper Size: Size 1! They are still a bit big but that is okay.
- Clothing Size: 0-3
- Nicknames: My love, Baby Girl, Darling, Little One, Baby Bear (Phil now refers to me as Mama Bear)
- Expert Skills: hiccupping, sneezing, pooping, stretching, eating, the pirate look (only opens one eye and looks at you questioningly), Elvis smile, rolling her tongue, tracking people, turning to voices, looking at toys, smiling, chewing on her hands when she is hungry to soothe herself, choking herself by chewing on her finger, hitting her toys, mobile attention span (she will spend about 20 minutes playing with her mobile independently), book attention (she will look from one page to the next for a whole book), playing kick the blanket off
- Developing Skills: Cooing, holding head up in her seat, sticking her tongue out when we do, making a pop noise with her lips, kissing, saying "ah", playing peek-a-boo
- Likes: Playing with her toys, walks, her rock and play, Mommy making a squeaking noise, the bottle song, the sound effects we make when getting her dressed (choo choo noises when we put on socks), interacting with people, reading books, baths, trying to pull out her NG tube, pacifier
- Dislikes: spitting up, reflux, her heart medicines, nightmares (she cries out and makes the saddest face and then is fine again), Mommy making a motorboat sound, her tube moving around, tape being taken off of her, blood being drawn, gas
- Mommy's Favorite: When she smiles, when she trys to imitate the 'ah' noise
- Daddy's Favorite: When she smiles, sneezes, when she trys to imitate the pop noise
- Toys: Mobile, books, blankets, mirrors, laying on her mat playing with hanging toys, Mommy and Daddy!
- Sleep: She falls asleep between 9:30 and 10 and sleeps until 8am. This is mainly due to her special feeding routine (see below)
- Feeding: She gets bottle fed and tube fed during the day. She is fed by just the tube at night. See feeding explanation below.
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| 13 weeks (today!) Notice the sock on her hand. Those little fingers keep trying to pull her tube out. I love that it looks like she is playing with a sock puppet in this photo. |
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| 12 weeks |
Long Update:
So we have been back at the hospital for a week and a half now. It has been a whirlwind. When we first came in last week we thought that Caroline was going to possibly have surgery the next day. Her liver was enlarged, the right side of her heart was enlarged, and she was having trouble breathing. After changing some of her medications and feedings Caroline turned around so much that the doctors even considered discharging us to go pack on some pounds at home for a week or so before surgery if she continued to do well. Phil and I were very nervous about this because we didn't want to go home and have to come back a few days later. We voiced our concerns and the doctors told us it wasn't definite that we were getting discharged. While overall she is doing better than when we first admitted her, she is by no means able to go home. Her blood pressures have been low at times, she is spending long periods of time panting, she is fussier, and she is sleepy. Now I know that some of these things are normal for all babies but trust me when I say it is different. A few weeks ago Caroline was up a lot of the day and super interactive and happy. Now she is fluctuating between wanting to sleep most of the day, fussing for long periods of time, and brief periods of happy interaction. Thursday and Friday in particular were hard. When she wasn't fussy she has just kinda laid there and stared at me or my mom. She just looked like she didn't feel well. My happy baby is just not so happy right now which is hard to see and deal with. Everyone keeps saying that everything will be different after the surgery. I can't put all my hopes on this surgery. If I do that then I won't be emotionally able to handle it if everything isn't better. While in theory this surgery should be successful, it doesn't mean that all this will be past us. We won't know her true prognosis until after the surgery. Only then will we know if she will need more surgeries in the future. Only then will we know if there were any complications. Only then will we know what type of long term prognosis she will have. And our biggest fear, only then will we know whether she will survive. I am terrified of the surgeon coming out and telling us she didn't make it or that something bad happened like brain damage or who knows what (I try not to think about the bad stuff). I keep trying to remind myself that if she doesn't have this surgery then she will eventually pass so there is no reason to fear the surgery because it is the thing that will keep her alive. It is a scary feeling to be looking forward to your child having open heart surgery.
I have spent every night at the hospital with Caroline. I'm supposed to sleep at home this weekend and Phil would stay with her but I don't know if I will end up doing that. I've gone home a few times at night this week and it is hard going home. I walk out of the hospital and I feel as if I am in a whole different world, a whole different life. In here everything revolves around her next meal, my next meal, nurse report, meeting with a doctor, meeting with a therapist, etc. I walk outside and wow, there are other people! Haha I know that sounds crazy but I'm living in quite a bubble right now.
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| Sleepy time |
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| My bed |
Phil's mom was here Tuesday and Wednesday this week. My mom was here last weekend and is here Thursday-Sunday right now. It has been great to have both of their help and company. I have really needed my mom here. Sometimes a girl just needs her Mommy :) When she is here is when I start dealing with myself. The only problem is that I just start breaking down. It all becomes too much. It is easier to just focus on taking care of Caroline, staying in my own little hospital world, and trying to rise above the fear. Going home has actually made the fear worse. I see my empty house and I can't help but think, 'Will I get to bring my baby girl home?' I went by the house the other day, walked upstairs, saw her empty room and just started crying. I want to go home but it is just weird and empty feeling. I have some friends who have had children in the hospital for months at a time. I have so much respect for them. It is not easy to balance life.
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| Grandma Karen working on sounds |
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| This is how Caroline fell asleep - sitting upright on ReRa's lap. |
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| Gran Dan |
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| Grandpa Jeff |
While I have spent every night here it doesn't mean I haven't gotten out. Phil and I have gone out to dinner multiple times while one of the Grandma's babysits. Last weekend we went to a local restaurant, the Boathouse. It is right on the James River and overlooks the city. It was beautiful. We sat out on the deck, had dinner and a beer, and relaxed. It was wonderful. I enjoy going out, just not going home.
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| Oops I closed my eyes! That sun was shining bright! See the city in the background? Beautiful. |
I have learned a lot of medical terms while here. I'm quite proud of all that I've learned and continue to learn. I want to be able to understand all the medical terminology. I like being able to talk to the nurses and doctors using medical terms correctly. I've learned a lot about blood pressure, pulse ox, heart rate, and respiratory rate. I'm really good with medical terms associated with her feedings. It is important to me to be the main care giver still and not let the nurses do everything. This means I'm making Caroline's formula and feeding it to her through her bottle and tube. I've also learned how to use their feeding tube pump. Her daily feeds go like this: She gets 10mL PO (PO=in a bottle). Then I use my stethoscope and a syringe and do an air bolus to check tube placement (air bolus=pushing 3mL of air into her tube and at the same time listening with the stethoscope to her tummy to hear a pop or woosh sound which means the tube is in her tummy). Then we gavage the rest of her feed which is 50mL (Gavage=through the tube). We've tried a bunch of different ways to gavage her food. Below is a picture of what has seemed to work the best. We hook her tube up to a large syringe and pour small amount of her food into the syringe. This is called a gravity feed because gravity brings the food down and into her tube. The reason this works so well is because it is controlled so the food doesn't go in too fast and because if she is gassy gas can escape back out the tube. She has been less fussy and less gassy since we started this way of feeding her so I'm sticking with it! During the night she gets hooked up to her pump and she gets 30mL an hour for 12 hours. They have changed to mainly tube feeds in order to help her gain more weight. Not have to work for food=not burning calories=weight gain!
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| This is all she is allowed to have by bottle, 10mL. |
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| Playing and eating at the same time. See the giant syringe in my hand? |
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| It is hard to tell in this picture but my mom is holding up the tubing connected to Caroline to help feed her. |
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| Formula goes in and down her tube and into her tummy. Doesn't this remind you of a hamster water bottle kinda thing? We find it kinda amusing. |
We've had a couple of scary storms here in Richmond this week. Both times I disconnected her from her monitors and went someplace else because the amount of wind, rain, and hail combined with our giant window scared me. So with the first storm I fed her in the bathroom, in the dark (we had lost power), with just a flashlight shining on me. The second storm happened when she was doing her tube feeding at night. Phil and I walked laps in the hall during this storm. We had winds up to 80 mph, it was crazy!
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| Notice the glass off the table?! Thankfully the chairs saved the glass. |
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| It's hard to tell but our tree split. |
Many of you have asked how Zach is doing. Our wonderful neighbors Amanda and Ricky took care of him for the first few days. They were so sweet. They would bring him over to their house to play with their dog Zoey (Zach's girlfriend) before work, at lunch, and at night. He loved it so much that when Phil went home to take him on a walk Zach ran right over to their house! Now he is staying with my parents . Amanda even called me to tell me what damage we had on our house after the storm this week. Our other neighbors, Donna and Sam, have already taken care of some trees that split in our yard and Sam is going to fix our siding that came off. We are so blessed to have such fabulous neighbors.
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| Zach and Zoey Thank you for the photo updates Amanda! |
Also Zach got professionally groomed. Normally we cut him. Like his new haircut? It's not our favorite but we just don't have time to groom him ourselves right now. He pouted afterward because he likes his beard and they had to cut a lot of his beard off because it was matted. I started laughing hysterically when I saw this picture.
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| Oh my. |
At our last visit to St. Mary's it was very weird and hard for me to not be on the Labor and Delivery floor. It was also weird that Emily wasn't a central part of our experience. Loosing Emily has been such a central part of our lives for so long it is weird for her loss to no longer be associated with Caroline. I don't think I'm explaining this right. When pregnant with Caroline we talked with doctors about Emily all the time and preventing the loss of Caroline. While we have shared our pregnancy history with some of our doctors and nurses here, her loss is no longer integral to Caroline's survival. Anyway, while it was weird a few weeks ago now I feel at home on the pediatrics unit and know that Caroline is in fabulous hands.
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| Doctor Lakdawala |
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| Nurse Vera |
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| Some of our night nurses Jessi and Medora (They look fabulous after a 12 hour overnight shift!) |
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| Caroline getting a famous Nurse Viki bath |
Today she has been much happier than the rest of this week. She is trying soooo hard to imitate 'ah' sounds, pop sounds with our lips, and kiss. She LOVES that mobile still and has even caught some of the animals on her mobile and held them! She loves sitting and looking around at us and things in the room. We love her so much.
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| Miss Pam came to visit |
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| Miss Maria came to visit too! |
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| It's important to sanitize your hands A LOT! |
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| Peek-a-boo! |
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| Big eyes |
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| Ummm Daddy what are you doing? |
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| Sad face |
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| Playing with Mommy and Daddy |
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| I LOVE my mobile! |
I will update again once we find out the actual surgery date or once we get to UVA, whichever is first. I'm in the process of uploading a ton of photos to the shutterfly site so I will include that too when I update the blog next week.
Have a wonderful weekend!
Love,
Megan
Thank you so much for this awesome update and all the wonderful pictures. You all are doing an amazing job . Prayers continue. Laurie
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