Home so long?!?

We have already been home three weeks as of yesterday. Wow! Time does fly!

We are still struggling with feeds for Audra. She had three weight gains in a row and today she was the same weight as a week ago. Ugh! Our nurse talked to our ped and we don't have to supplement her milk yet but this is the next logical step.

On a positive note, Audra did go to town on one of her bottle feedings today (no thanks to her OT who has not done anything but observe). Audra still has to about double what she did today but hey, you have to celebrate the small victories right?!? She continues to do well with nursing but does not get enough before tuckering out. The hope is that as she gains weight, she will get stronger and be able to nurse longer. Frankly, at this point, we do not care how she gets the calories, as long as she is doing well. It feels like a constant battle and every time she cries, I see her calorie count start ticking down. Well the good news is that she started at 8 lbs, 5 oz and not 5 lbs. Always look on the bright side of life :)

As always, thank you for your continued support!

One Month Old Today!

Audra is one month old today! We cannot believe how quickly time has passed on one hand, and on the other hand, it has felt like a really long time because so much has happened (and we have seen so many hours of the night that we used to only see in undergrad, lol). She is also 4 weeks post op!!! Wow!

Today, we celebrated Audra being one month old by going to the pediatrician for a check-up of her reflux. She is doing really well and our (new, non-retiring) primary dr. was very happy to see Audra's weight gain finally! We are so happy that she is finally gaining weight on a consistent basis. What a relief!?!

The occupational therapist came to evaluate Audra yesterday and was at a loss to help us - awesome (with sarcasm). She said that there is no reason Audra could not take a bottle if she is nursing and had nothing to offer to help. So it appears she is doing that breast fed baby thing and refusing to take a bottle - but even before she started nursing. Hopefully we can get over this and get her to take in enough milk nursing do we can get rid of her feeding tube. She is starting to seem annoyed with her feeding tube, which is understandable.

Until next time... Remember no news us good news :)

Best in 30 Years!

We had a good visit from our home care nurse as Audra finally started to gain some weight. It seems that we have not been giving her enough milk. Now that she is nursing some, she gained weight! Hooray! This is such a huge relief and hopefully a trend that continues along with her good nursings.

Audra absolutely HATES to get her blood pressure taken. Our nurse has to talk with our cardiologist because of the stress that this puts on Audra and the abnormally high readings these cry-fest readings produce. Hopefully this improves.

At the end of our visit from our home care nurse, she was singing our praises. She said how well Audra was doing and even said she is the "best baby with this condition that she has seen in her 30 years as a nurse." And no, I didn't ask how many other HLHS babies she has cared for. We will take the compliment and run with it :)

Also, for those of you playing along at home, our neighbors are still not back in their house after 8 months of construction that was supposed to be done in December. I predicted that Audra would be home with us before they made it back and fortunately, I was correct. Now if this stupid construction would just be done, I could stop complying about it ;)

Finally for today, thank you for all the continued support. We cannot say often enough how fortunate and blessed we have been and continue to be and you all are a huge reason for this! So thank you from the bottom of our hearts!!

At Home, Doing Well

Life at home has had its ups and downs but overall it is going well. We are getting into a routine and both Audra and our older daughter are adjusting well. No news is good news.

We dealt with Audra's reflux this week and she seems to be doing better with that. She has still been struggling with both gaining weight (she takes after my eat anything husband i guess) and bottle feeding. But today she has been a nursing champ! We have randomly been trying to have her nurse with just a little success. But today for two times in a row she had really gotten the hang of it. She must know that we have occupational therapy coming next week to help with her bottle feedings ;) Anyway, we hope she continues to nurse well before each feeding and the gain some weight so we can get her feeding tube out.

We are also happy to report that our HLHS buddy over at UofM, Wyatt, had his first surgery on Friday and is doing well! It was hard on Thursday night and Friday to think about what they are going through. Just three short weeks ago we were right there. We are so happy for their family and baby Wyatt!

Our Local Cardiologist

Yesterday was Audra's first visit with our local cardiologist. Her office is literally 5 minutes from our house and our surgeon, Dr. Bove, recommended her. At times, Audra was not happy but overall the appointment went well. It did take much longer than we anticipated, which worried my sister who was watching our older daughter.

After getting weighed and measured was the echo. Audra liked looking at the fish that were on the ceiling. She got herself really worked up but when we gut her partially swaddled, we were able to calm her down. Up next was her EKG, which went pretty well.

When the Dr. C came in, Audra gave her a nice full diaper - a nice welcoming gift :) Dr. C says that Audra looks how they want a Norwood Baby to look. The Norwood is the name of the surgery she had. Her levels are all in the proper ranges and our home care nurse is going to continue to monitor them for us until our next appointment. She even cut down on her medicines!

We are still working on the bottle feedings. Audra is making progress but still likes a full belly to magically happen rather than work for it.

Thank you for your continued support and prayers! We appreciate the meals that you are bringing by!! Thank you so very much!!!

Home Sweet Home

It is really nice to be home. Audra likes having less people mess with her and still prefers to be swaddled up. She has reasonable amounts of "quiet awake time" during the day as mama refers to them as where she loves to be carried around the house and look around. We are still working on bottle feedings. Audra prefers to sleep rather than eat and with her feeding tube, she can do both ;)

Our first night home was a little rough. Audra was fussy and didn't want to sleep. She woke up her older sister who joined in the sympathy crying. This was to be expected. But now when Audra cries at night, our older daughter can sleep through. It is the small victories :) Our older daughter loves to give Audra her snuggle blanket and paci. It is very cute. She is a great big sister and has really been adjusting to this all very well.

Yesterday we had our first visit from our home care nurse. She was very helpful and will be coming twice a week for the next few weeks. We also had our first pediatrician appointment. It went well but we found out our main pediatrician is retiring at the end if the month. We will start to see another pediatrician from the group whom we like. Monday we will see our cardiologist.

On another note, a newly found friend who is an HLHS mom to be is in labor over at Mott. Please say a special prayer for her family as they start on their path!

Happy Easter! All the best!

On the Road Home!

We are on our way home literally! Audra is sleeping in her car seat and our car is packed up with everything we have accumulated over the past two weeks. It feels good to be out of the hospital in the fresh air!

We are looking forward to getting to our new normal at home. Audra is going to enjoy having less people checking her around the clock. She has done really well as everyone has told us. "This is how a Norwood is supposed to go" all the doctors say :) This makes us very happy but we still have a lot ahead of us. We are still working on her bottle feedings. Slowly but surely.

Thanks for all the support and prayers. We have been very blessed! My sister is coordinating dinners for us, so if you are interested in bringing by dinner, either check my Facebook page or email her at jherta at gmail.com.

We are so proud of Audra and our older daughter for doing so well these past few weeks and looking forward to being together as a family!