Last night they did the ultrasound on my leg and the Dr. said there was no blod clot. Shane and I were so relieved to hear this. We were anxious to see Nayeli so we took my parents with us. She was moving around and looked comfortable. They took the IV out of the side of her head and tried to put it on the other side of her head. It didn't work so now she has two little bald spots on the front of her forehead. I put a turqouise bow on her head for a minute to take a picture. She looked adorable with her little bow. She is so beautiful. Our little Princess. The nurse told me I could leave the bow on but I decided not to, I dont want it to bother her. The turqouise ribbon is symbolic of the Offical CDH awareness day, which is on March 31st every year.
We asked the Dr. lots of questions about the fluid. The Dr. said they would take another x-ray in the morning since she is doing fine right now. I asked why we should wait until tommorow because I am concerned she has more fluid now. The Dr. said it would show on her stats and she would make her boo boo face if she was uncomfortable. The Dr said they are relying on our daughters actions to tell them what to do. The Dr. said they would take another xray first thing in the morning.
About 7am, the Dr came in to talk with us about Nayeli. I aksed the Dr. if they had taken an xray of her yet and she said no. The Dr. said they would soon. It is now 7am and still no xray. I am getting impatient. This is hard for us to sit back and not know what is going on with the fluid. They did tell us not to worry. That is extremely hard to do.
At 0900 everyday, the Dr's have meetings and discuss each baby. Perhaps a weird coincidence, but right when we walked into the NICU, they were talking about our daughter. The Dr's said our daughter is stable and doing well. They said she is still taking morphine as needed through an IV line, which is given by the nurse when Nayeli tells her she isnt feeling good. The Dr's said they did an x-ray this morning and there is still a small amount of fluid in Nayeli's chest. They said they are still not concerned about this fluid and will continue to monitor it. They said if it builds up again and presses on her heart and lungs, they will drain her again. Based on this, we assume the lab results have not come back. They said the x-ray did not show a substantial increase in fluid build up and it looked the same. The Dr said they expect this fluid build up after any type of surgery. They explained that there is a small space in Nayeli's chest after the surgery due to the digestive things being moved down. The Dr said that when there is a space such as this, the body feels the void and will fill it with fluid.
Dr's said they plan to slowly wean Nayeli's assisted oxygen with the ultimate goal of getting her off of the oxygen machine.
The Dr said they will also start feeding Nayeli small amounts of my pumped breast milk. The Dr said they are going to start by giving Nayeli a tablespoon of mommy's milk to see how she responds to it. Dr's also said they plan to give our daughter a PIK line. A PIK line is a more permanent IV so they dont have to keep poking at our baby girl on a daily basis to give her needed meds and nutrients, etc.
Lastly, the Dr informed us that Nayeli is peeing regularly, and has now taken several poops. The Dr said this is good news because it shows that her body is functioning properly.
We will keep you all posted as stuff comes up. We thank God for giving us good news today. We pray that he will continue to help Nayeli get stronger and continue to fight. Keep those prayers and support coming. We love you all for this.
22 comments:
Thank you for keeping us informed! :) I know that it is reaaally hard sit by and "wonder" about things... I think it's that maternal instinct that tells you to scoop up that baby and take care of all the booboos asap. When we are put in the position of not being able to do that, frustration abounds! It is amazing how much the sats will tell you as well as Nayeli's cues. These nurses are VERY good at what they do! Awesome that her oxygen saturations are good enough that they're talking about weaning from the vent! GREAT, GREAT news!!! Lots of love! ♥
What great news! Nayeli is such a trooper! I'm so glad that your ultrasound came back okay. That is a huge relief. Nayeli looks so cute with the bow in her hair. She has a ton of hair! Jer and I pray all the time for you guys. Let's keep the good news coming each day!
xoxoxo (a hug and kiss for all 3 of you)
Jen Rocha
Wow..things sound so promising..the way you report everything tells me that you are both indeed great parents who listen attentively and know what you need to know. Like I said before, never be intimidated by the Doctors and nurses, as my Mom used to say, they put their pants on one leg at a time, just like you do. Trust in them that they will NOT steer you wrong, they have done enough of these to know when there is an issue..but always stay on top of them..because Nayeli is not "just another infant with CDH" she is your little girl!!! Our continued prayers and your faith will pull her through this. She sounds like she is progressing better than expected. Love to all, Gail
What great news today from the doctors! Nayeli is doing great and don't stress--Nayeli's sats will tell you when she is having trouble or is in distress. And whenever you doubts, you ask those doctors and nurses--you are only looking out for your little girl and asking questions doesn't hurt a bit. A very good sign that they will be weaning her from the vent! Liz, I am happy that your leg ultrasound was okay--many prayers for you as you heal. Nayeli is so cute--love the bow in the hair.
Many continued prayers for Nayeli this week, may she continue to get stronger and have only good days.
Tracy Meats - mom to Ian(born with a LCDH on 4/3/04) and WY and CO State Rep. for CHERUBS
thank you for the update. I continue to pray for your little one, who, BTW, is lovely!
I was so happy to read that your baby girl seems to be doing so well! It amazes me every time I read one of your new posts, how much alike her hernia is to my daughters! My daughter also had a lot of fluid build up around her left lung. The docs explained to us that since there is now an "empty" space where the organs were, the body's natural reaction is to fill it with fluid until the lung can grow to fill that space. Our daughter had a chest tube to drain the excess fluid, and every day the amount of fluid would decrease a little until her body just stopped producing it. Part of the bottom left lung also ended up colapsing because of it, but then recovered very fast from that as well. I am so happy to read about another CDH baby who seems to be doing so well! The fact that the docs are already wanting to start the weaning process for extubation is a GREAT sign!!
I know it is hard no matter what the circumstances are...just keep your hope alive! The power of prayer can deliver miracles! I will continue to pray for your sweet miracle!!
Amanda Turner
San Antonio, TX
http://www.caringbridge.org/visit/raelynturner
wow! all great news!!!! thats what we all pray for! keep up the good work Nayeli!!!!
Wonderful news all around! Thank you for your diligent updates. Love all the photos - Nayeli is just beautiful! Love, Amy & Jon
I just had to say that I love the bow. The explanation of fluid filling up empty space is exactly what my son's doctors told us too. He had daily x-rays done as well. I think the doctors like to minimize the radiation exposure so they try to avoid doing too many x-rays unless they are really necessary of course. It sounds like Nayeli is really impressing everyone especially if they are going to start food soon...hope that goes smoothly!
Paula (mom to Wyatt, 11 months, LCDH)
Glad to hear that she is doing ok and that the fluid is not anything to worry about! you are in our prayers and your daughter is simply beautiful!
Such great news! Yea for poop!!! You are wonderful parents and very blessed. Thinking of you and sending healing hugs...Daria
Eliz - Glad to hear you and baby are coming along. I was wondering how you are feeling after your surgery?! One thing a nurse taught me was (I know this sounds weird) put a pad, sticky side facing out to your undies, across your incision. It was most comfortable for me. Still thinking and praying for you all!!!
I race home everyday from work to check on Nayeli's progress.... and I do mean progress!!
I was never so happy to hear about a baby peeing and pooping!!! Yeah Nayeli! We will praise Him for the little things, right? The bigger miracles are still to come!
I am also relieved to hear that you do not have clots, Liz!
Keep the updates coming.... I really can't wait to hold your little one! She's so adorable!
Yea! Go Nayeli! This is the kind of news that we love to hear. Thank you for taking the time to keep us updated. She is SO beautiful.
You guys are always in our thoughts and prayers.
Blessings,
Heather and Matt
Liz and Shane,
We love the video. She is precious! I loved to see her move. I'm glad to hear that the fluid hasn't gotten worse. I can't wait to hear that they have extubated her. Ava is working really hard at keeping good stats while just being off the vent. Our two girls are such fighters. We love you both!
~Terri abd Brian
She is adorable and the bow in her hair is just precious! I'm glad to hear she is going potty too! :0) You all continue to be in my thoughts and prayers.
Liz and Shane,
I am so glad to hear things are getting better and better for ALL of you! I still say prayers for you every night. She looks so cute with the bow in her hair...she is a beautiful baby!
Lots of love!
Gina
I am so happy that Nayeli continues to do well. That is always good news.
PICC lines are always so much easier on these babies. I am surprised they didn't give her one when they took her into surgery. I am sure your nurses will do a great job watching the site, but my advice is for you guys to watch it as well. Make sure that it stays covered completely and tell a nurse if you notice any change in appearance just in case of infection. Kaden's first one got infected and when they pulled it, all of the bacteria shedded off into his blood. I still recomend one to keep Nayeli from getting poked so often, just keep a close eye on it. If you or the nurses see something they can always give her antibiotics. Just a little heads up.
Thanks for sharing the video. She is too cute!!! It looked as though she was waving hi. I hope that she continues to do well enough that she will be off the vent soon!!! I am so excited for you guys. Keeping you all in my thoughts and prayers.
Amy
By the way, Liz I am so happy that everything with your leg turned out not to be anything serious. I hope the pain has gone away, if not, that it will soon.
Your precious baby girls is in our prayers. She is beautiful! Sonya shared with our women's Bible study. We are all praying for her. She is becoming very popular!!
We pray rest and strength for mom and dad!
Many Blessings!
Hi Liz & Shane! I just wanted to say congratulations on your beautiful baby. She is such a strong little girl and toooo cute for words. I have faith that she will get through this. My prayers are with you.
Mary Ann (Sanchez) Velasco
(Liz - I used to work with Shane in Berkeley)
Love the video...Nayeli will be horrified on day for the bad hair day. She has a great head of hair for sure...I think we know who she takes after. Check off another great day...Naylie is really progressing well...in our prayers....
Jim and Dee
HI there, my name is Janell, I too have a CDH child. He was actually born at UCSF too. We just visited the CDH clinic yesterday. The views up there are definately a bonus. Especially on days like yesterday. I didn't get a chance to read your whole blog yet, but just wanted to let you know that we are here if you have any questions. We were there in the NICU and on the peds floor a few years later. Luke is almost 6 now, and one of the success stories. At least I like to think of him that way. I love the docs there, they are like family. I know they will take great care of you. Hope to talk to you soon. Janell (Rosevile, CA)
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