Wednesday, October 29, 2008

Family Meeting

In the midst of all the excitement, we forgot to mention both of our parents are gone. My parents went back to Buffalo, and Liz's parents are back in Southern CA. My mom plans to come back some time down the line. Liz's dad will be back Thursday night and will continue to help us out and bring our mail and some yummy home cooked food. Liz's dad is also taking care of Twinkie, Molly, and Max. We also want to thank Abe Teng for checking on Max while Liz's dad is back in LA.

Today, at 2pm, we met with the Dr's, Nayeli's primary Nurse Mardi, and the hospital Social Worker. This meeting was set up by the hospital staff to go over how our daughter is doing overall, and to discuss any other questions Liz and I have. Right before the meeting, we learned they had just done an x-ray on Nayeli because she was breathing pretty heavy. They discovered Nayeli had more fluid in her chest and they had to tap her chest again. The nurse told us they removed 40 mils of fluid from Nayeli's chest. It was obvious she was breathing a lot easier. We had noticed her breathing heavy last night and mentioned it to the nurse. The nurse thought it was normal because our daughter had just come off the vent. I was a little upset about this and felt our baby girl was suffering all night due to this fluid. We had asked them if they were going to increase their x-rays to stay on top of the fluid build up and they said they already did it once a day. This was not what I wanted to hear going into our family meeting. Liz had to calm me down before we went in there.

So, the meeting. As mentioned above, we first talked about the fluid situation. The Dr's still swear it is not a concern to them and is normal after a surgery. They said there is still a gap in Nayeli's chest created by the surgery and this area almost always fills with fluid. The question still remains, is the fluid lymphatic fluid caused by Nayeli's diet, or is it post surgery fluid. The Dr's said they are not sure and it will take more time to tell exactly what it is. They assured us it is not a concern and said they will closely monitor it.

The Dr then talked about how long they think Nayeli will be in the hospital. At a bear minimum, we are looking at at least one month. This will depend on how Nayeli is doing with her breathing, and how soon they can wean her off of oxygen all together. Another factor is her feeding habits and how much food they can get her eating. Right now, she is eating 16 cc's every three hours. This is up from 8 cc's a week ago. Liz is breast pumping like a champ and is having a hard time keeping up with Nayeli. We are hoping her milk production improves with Nayeli's appetite. The Dr said normal children eat between 50 and 60 cc's a day. We are still a ways from that. Another goal is to get Nayeli breast feeding and taking a bottle if I feed her. The Dr said there is chance Nayeli could go home with us when the time comes, with a feeding a tube. If this were the case, she could have this tube up to the first year of her life. The Dr said this would not hamper our daughter or her activity. The Dr mentioned that all CDH babies have difficulty eating and it varies case by case. He mentioned that when the intestines, bowel, and other items in Nayeli's chest are pushed down during the surgery, they typically do not end up where they are supposed to be. This causes the feeding, peeing and pooping issues. On a great note, Nayeli took a poop today that was mixed between the mincomium poop and a regular poop. This is very important as it shows she is eating and processing her food.

We then talked about Nayeli's breathing. The Dr said a normal person functions at 21%oxygen. Right now, Nayeli is being given between 28 and 30%, which is pretty good considering. Their goal will be to get her to 21% and off of all oxygen support. We then discussed Nayeli's rate of respiration (breaths per minute). Last night, Nayeli was breathing between 110 and 125 breaths per minute. This is pretty high, but she was handling it well. A typical baby breaths 40 to 60 breaths per minute, and the average CDH baby breaths between 60 and 80 breaths per minute. The goal would be to get Nayeli's breathing rate slower, but the Dr said her rate may faster than the norm. They will monitor this and try to figure out what Nayeli's norm is. On a side note, I went and checked on Nayeli after our meeting to see if the fluid drain helped her breathing rate. I noticed it was fluctuating between 89 and 110 breaths per minute. Better, but still a bit high so we pray this improves.

Nayeli had an echocardiogram yesterday and this also came up in our meeting. The Dr said Nayeli has an expected amount of pulmonary hypertension (PH) as "all CDH babies have some level of this." The echo measures the lung pressure of the "good lung," which is Nayeli's left lung. With CDH, this pressure increases as the baby works a bit harder to breath. The Dr said they are not concerned with Nayeli's level of PH right now and as with all the other stuff, they will continue to monitor it. The Dr added that if the PH gets more noticeable, they may have to give Nayeli Nitrious Oxide (N-O) or a medication that sometimes helps this. We pray for the best with this and also hope Nayeli does not have to take more medication.

Regardless of where this road leads us, we love our daughter so much and we will do what it takes to care for her. We thank you all for your continued prayers and support. It is very uplifting and keeps our chins up in this fight. We love you all!

The nurses can be kinda loud.....shhh keep it down I am trying to sleep

I am hungry.....and I am going to cry until someone gives me a Big Mac!


Anonymous said...

We loved seeing the great photos of you guys holding Nayeli. We continue to keep all of you in our thoughts and prayers.

Annie & Mike

Terri said...

She looks fabulous you two! Scream, hollar and yell until they listen to you! Keep up the good work. I'm glad your meeting went well. I've had to hold back Brian plenty of times! Well okay he's had to calm me as well. Parents promanade" thay's what I call it! Love the pictures!


Stacy and Jimmy said...

Shane and Liz
It is so great to hear how well Nayeli is doing and she looks great, even just hearing her cry is wonderful! Take care of each other and we are all thinking of you all constantly!
Love Stac and Jim

makes us feel like we know her

Anonymous said...

great news! shes fighter that one! prayers still coming your way!

Fer said...

I LOVED the video, hearing her cry is wonderful! I will pray for her recovery and hopefully you can take her home soon.
CHERUBS Mexican Rep.

Anonymous said...

Hello from baby John and his mommy Megan! John loves to look at the pictures of Nayeli and hear how she's doing. You guys, she's actually progressing faster than John was at one week--she's eating a bit more a bit sooner, it sounds like she's already on bulk feeds (more at once, then several hours in between), she's already off her vent (John was off on day 11) and you've gotten to hold her already (also day 11 for us). I'm sure the doc is being conservative with the "month" stay. (John had a total of 21 days in the NICU before being released.)

The fast breathing and fluids are the only things holding her back from our experience. And if she's keeping down her feeds and pooping she may be able to take more food very soon. John is now eating between 300-600 ml of breast milk every 8 hours from a bottle (we're working on the breast but we'll do that back in Anchorage because of all the transitions we're about to go through). No feeding tube.

Congrats, you guys, and way to stay on top of the docs about the fluid. Be vigilant--you know your baby. My husband got so he knew what all the numbers meant and he could work the monitor and readjust John's pulse ox, etc.

John and I send hugs from Colorado!

Tracy Meats said...

Many continued prayers for Nayeli--she is doing great and one strong little girl!!

Tracy Meats - WY and CO State Rep. for CHERUBS

Gail said...

You guys are doing great and so is Nayeli..don't get too worried about little setbacks...they happen to everyone, all cdh families can attest to that. She is so far ahead of where my son was at this point and she looks beautiful.Don't be afraid to question anything,,that is YOUR RIGHT as her parents, and remember, there are a ton of people out here praying for you all and feeling what you are feeling. With strength and faith you can get through anything. A month from now, you will look back on this as a distant memory. Stay strong and healthy and Nayeli will get there too..she has already beaten so many odds. Love to all, gail

Anonymous said...

LOVE the video of her little hungry cry! For us CDH parents...those cries are like beautiful music!!! Still praying hard for your sweet Nayeli!

Amanda Turner
San Antonio, TX

Kaden and Angel Ava's mommy said...

I am glad you guys were able to talk to the doctors and get any questions you have answered. As for her heavy breathing, hopefully having that fluid removed will help. If it helps at all, I have noticed that when any baby comes off of the vent they breath a little faster then normal. They have to use muscles that they haven't really had to use before.

I also wanted to say that you should ask your doctor if the fluid they pulled out looks "milky." When Ava had her chest tubes the doctors stated that they knew it was lymphatic fluid because it looked "milky." This fluid basically has protein from the breast milk (or formula) in it and I guess for some reason it looks like the milk. With Ava they began feeding her a high protein formula and began to save the breast milk for later just so she would get "enough" protein. Our story with the lymphatic drainage had a different outcome that I previously commented to you but I just wanted to make you aware on what we were told to see if it could help you get more answers. I hope it helps some.

As always, you guys are in my thoughts and prayers.


Elizabeth said...

Those are LUNG EXERCISES - they help with LUNG FUNCTION!

;-) Love it! Imagine how loud she would be with two full size lungs?

With thoughts, prayers and LUNG FUNCTION chants,

Tricia said...

It sounds like she is doing really great. As I was reading it sounds to me like the doctors are giving some misinformation on some things. I can elaborate, but I sooo don't want to intrude! (if you want more, let me know!)

Suffice to say that I think you are absolutely correct to "keep on them" and insist on things if you want them done, or really press them for more answers.

She is gorgeous though and is doing unbelievably well. I am so happy that you got to hold her already. She can only benefit from that special touch! :)

SWilson said...

I love the videos you include in the blogs! I really am anxious to see her in person! I just know it won't be long!

Anonymous said...


Anonymous said...

I love this "blog technology" as it keeps us so connected! Thanks for all the photos, videos and updates. I eagerly check the blog several times a day. I'm glad to see you aren't needing to update as often now that Nayeli is more stabilized. I just know you will have your bundle of joy home with you soon - keep the faith and try to get some rest! You are a beautiful family and you are blessed to have each other! Love, Amy & Jon