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mholladay
03-13-2013, 07:43 AM
Hi everyone. Our daughter Alexandra Nichole Holladay was born via c-section at approximately 5:30 pm on Friday, 3/8 at Washington Hospital Center in DC and immediately transferred to the NICU at Children's National Medical Center next door, where she remains this morning. She weighed 6 lbs 12 oz at birth, which happened suddenly at 36 weeks. I started feeling weird around noon and within 6 hours she was out. It's been a whirlwind few days. She got by for about 20 hours on just a respirator before the doctors decided it was best to put her on ECMO. She's been very stable ever since but not well enough to reduce her support level just yet. The doctors keep telling us to be patient, that it could be another week or so before they can take that step.

Meanwhile I'm doing my best to heal from the surgery but it hasn't been easy. I'm breast pumping which is not going great but I'm getting lots of support from the counselors at the hospital and also from my OBG staff. Everyone at Children's is just AMAZING and we are so grateful to all of them for their support and care. It's all a bit overwhelming right now we're just trying to take it day by day and look for signs of her getting stronger.

I'm resting at home this morning (overdid it yesterday and had a rough night) but we'll be back at CNMC after lunch. I've been making regular updates on our Facebook page which is probably the best place to go for news on our situation: www.facebook.com/FlyTheAirplane. Will also try to make a longer blog post on our website, www.holladayaviation.com at some point today.

Hoping to be at the march in DC next month.

Mer

Chris and TracyMeats
03-13-2013, 12:14 PM
It is good to hear from you! Congratulations on the birth of your baby girl, what a pretty name!! Will keep Alexandra in my prayers. Tell her to keep fighting! One day at a time and focus on the positive. Hope ECMO gives her body time to rest and get stronger for her repair surgery.

Hope you heal from surgery...so hard when you have a baby in the NICU. Walk when you can, drink lots of water and don't overdo. Alexandra needs a strong mommy!

Fight Alexandra fight!! Will go check out your facebook page and see if you have pics posted! I bet she is beautiful!

freedom
03-13-2013, 12:25 PM
Congratulations! Thank you so much for posting an update for us. I agree with Tracy. Take it easy...which I know is SO hard. I've had 5 - yes 5 c-sections and it's not easy. I was not good about taking care of myself and pushing too hard which only caused me to talk longer to heal. Ask for help when needed. Sending you all so much love & hugs. Stay strong sweet Alexandra. Thinking of you all tons. Sending love from Maryland.

mholladay
03-13-2013, 05:16 PM
Thanks everyone. Alex is doing very well today and they've started reducing her levels since her gases have been so good overnight and this morning. She even opened her eyes for us this afternoon... bright sky blue, just like my grandmother's. :-) And yes I learned my lesson about overdoing it, am taking it easy here and doing my best to keep up with the pain meds though I'd really like to be off the oxycodone by the weekend. Not able to cut it out just yet. Breast pumping is going much better now that I got some good advice from my OBG staff. Taking it one day at a time. My stepdaughter is coming to visit now with a friend, and tonight I do hope to get the blog updated with pictures.

Chris and TracyMeats
03-13-2013, 06:27 PM
That is a good sign they are reducing her levels!! Hope the pumping starts going better and you get to spend more time with Alex in the days to come. That is a good sign she has opened her eyes with the all the meds she is on....precious baby girl.

One day at a time and keep focusing on the positive.

klunick
03-14-2013, 06:07 AM
My son was treated at Children's National Medical Center for his hernia almost 9 years ago. (Wow! Time flys!!) It's a great hospital and the staff is very caring. When my son had his appendix removed in 2011, I had the option to go back to Children's for the surgery. I should have taken it. He ended up having his surgery at Georgetown University Hospital, which was a nice place, but it would have been nice to go back to Children's and be able to thank them for everything they did in our brief stay there. If you read any of the stories I've posted about my Dalton, you understand when I say, I have a feeling I might get another chance to thank them in the future. :/

Good luck and know you are in great hands.

freedom
03-14-2013, 01:29 PM
Oh, what a sweet update. Love the part about her eyes being like your grandmothers. Soak it all in mom and enjoy every speical moment with her. Keep up the good work on taking it easy. I hope you have a good family/friend support team to help you out as well. That is always so helpful. Take care

ReneeB
03-14-2013, 02:51 PM
Wonderful congrats on the arrival of Alexandra. Keeping her in my thoughts that she continues her upward trend.

mholladay
03-15-2013, 08:55 AM
We seem to be in a holding pattern at the moment, but the way we look at it, no news is good news. She seems to be stable at a 50/50 support level but having a hard time getting her CO2 levels down enough to ratchet down the support much more. We're taking the nurses' advice and sleeping at home which I think is essential for us to be able to get through the day. Dana is back to work on a limited basis and we have TONS of support from friends locally as well as from Dana's daughter Nikki who is 22 and lives in DC. So far so good. Just each day we hope she makes progress. Would be great to get her into surgery by the end of next week.

Chris and TracyMeats
03-15-2013, 10:17 AM
Keep fighting Alex!!! I agree with the nurses on trying to get as much rest as you can, hard to do, but good for your body to heal. Hope she has a very strong weekend and you start to see her CO2 levels come down and her support. She will let them know when she is ready.

Praying for strength for Alex and your family.

mslarrison
03-15-2013, 04:09 PM
I'll be keeping you and her in my prayers!! Slow and steady win's the race! :-)

whalenjl
03-16-2013, 08:30 AM
I hope Alex is continuing on her journey towards healing. We are all thinking of your family and sweet baby girl.

mholladay
03-16-2013, 09:37 AM
Well, a bit of a disappointing morning so far. Alex's "good" lung is having a hard time staying open and processing C02. We seem stuck at 50/50, and her BP just went up so they are giving her some more sedative (which they'd taken her off of completely yesterday morning) so this will likely delay her breathing exercise for the day. Frustrating. The nurse said this is not uncommon for a CDH baby at 7 days, usually they see some more progress at 10+ days. So we wait...

freedom
03-16-2013, 11:15 AM
Bless those nurses. Great advice. I know it's hard, but it will help you. So glad to hear about your support team. Yeah!!!!!! What a gift. Thinking of you all. More love & hugs from MD. Have a good weekend. Keep up the good work sweet little one.

Chris and TracyMeats
03-16-2013, 01:54 PM
One day at a time....so many ups and downs in this journey. Focus on the positive....she is still fighting! She just needs more time for her lungs and heart to rest and get stronger before they adjust her settings some more.

Tell that sweet baby girl to stay strong and we are sending her much love and prayers.

nickiyoung
03-18-2013, 10:54 AM
Congratulations on your baby! Fight baby, fight! Get some rest...I know its easier said than done. But, you have to take care of yourself too! Thanks for the updates!

Nicki :)

mholladay
03-21-2013, 03:22 PM
Today is ECMO day 11. We had our first circuit change at day 7 and our second today. She just does not like the plastic tubing apparently. Seems to have tolerated this change better than the first. Hoping her lungs clear up, fast, so we can get her off of this thing and into the repair surgery.

Chris and TracyMeats
03-22-2013, 11:03 AM
Praying for strength for Alex! Keep fighting baby girl.

Hope her lungs clear up soon and she can have her surgery repair. Will they not try the surgery while she is on ECMO? I know it depends on the facility and how stable the baby is.

Hope she can soon come off of ECMO and have her surgery soon.

freedom
03-22-2013, 01:31 PM
Thank you for the update. Poor little thing. Sending more love and good thoughts your way. Thinking of you lots.

mholladay
03-24-2013, 12:04 PM
She's been stuck at ECMO 50%. Not oxygenating well on her own to wean more than that. They are going to try putting a scope down her airway to see if anything is obstructing the lungs.

Chris and TracyMeats
03-25-2013, 10:31 AM
Praying for strength for Alex.

freedom
03-25-2013, 11:57 AM
Thank you again for the update. Sending you lots of love and prayers that all goes well.

mholladay
03-25-2013, 12:12 PM
Monday update: Overnight her ox/co2 levels improved, and the neonatologist this morning decided to punt and try weaning again today. So far so good. Not going to do the scope thing as long as she tolerates the wean. Meeting with surgery team this afternoon.

Chris and TracyMeats
03-25-2013, 04:39 PM
Praying for a strong day for Alex....fight baby girl fight!!! Hope she tolerates the wean and you have a good meeting with the surgeons.

amycschlueter
03-25-2013, 09:32 PM
Sending prayers your way!

freedom
03-27-2013, 10:53 AM
Thinking of you and hoping all is going well this week.

mholladay
03-27-2013, 08:02 PM
Great news: Alex came off ECMO today and her CDH repair surgery is scheduled for 10 am tomorrow (Thursday). She's had a rapid fire wean off of the ECMO and even came down a bit on her vent settings today. This girl wants OUT of the hospital in our arms! What was very cool was that the nurses let us hold her for a few minutes today. Tethered all her lines together and placed her in our laps, one at a time. Awesome feeling. :-)

freedom
03-27-2013, 08:16 PM
Awesome news!!!!! I'm so happy for you I'm jumping for joy. What a rock star fighter she is. I'm so, so happy to read the news about what the nurses did for you and letting you hold her. I'm sure that made your day. May you sleep well tonight with a big smile on your face. That was just the best news you posted.

amycschlueter
03-28-2013, 12:33 AM
This makes me so happy!!! My heart leaps for joy everytime I see good news like this!

Chris and TracyMeats
03-29-2013, 10:33 AM
Happy news!!! So happy Alex is off of ECMO and you even got a quick cuddle with her. Hope her surgery went well yesterday. Fight Alex fight!! Praying for her strength and continued healing and recovery.

mholladay
03-30-2013, 06:28 AM
Alex's surgery yesterday was a success and turned out to be a lot simpler/quicker than the doctors anticipated. They were in and out in under 90 minutes. Apparently, the reason her left lung looked "whited out" on the xray was not fluid in the lung but a baseball sized cyst attached to, guess what, her diaphragm. It had folded up on itself like the unzipped wall/door of a tent, and as soon as the surgeon popped it, he was able to unfold the complete diaphragm and stitch it up without needing gore-tex! Weird. The cyst had pushed her stomach, intestines and liver back down through the gap so everything was already in place. Surgeon said he'd never seen anything quite like it.

She's needing lots more morphine/versed today for pain (expected) and may need another chest tube to keep the lung clear (also expected) but overall she looks GREAT considering what she's been through.

Thanks to everyone for your continued support.

Chris and TracyMeats
03-30-2013, 03:01 PM
So happy to hear the surgery was a success and no patch needed!!! I have never heard of a cyst like that either. I have heard of more of a bag surrounding the organs up in the chest cavity.

So glad she is making progress, off of ECMO and has had her surgery. Praying for strength for Alex!! Tell that sweet baby girl to keep fighting.

freedom
03-30-2013, 08:21 PM
Thank you for the update. What wonderful news. She is truly doing a great job. More love coming your way from Maryland. Keep up the great work sweet little girl. We are loving reading your mom's updates.

ReneeB
04-01-2013, 07:47 PM
Great to hear!!

mholladay
04-05-2013, 01:12 PM
Well, one week post-op, Alex has developed a condition called chylothorax. That's the reason for all of the fluid. Anybody else have this problem with their CDH'er? They have stopped her breast milk feeds and that seems to be slowing the fluid output. Going to try giving her some alternative formula next to see if that resolves the problem.

Chris and TracyMeats
04-05-2013, 03:09 PM
My son had chylothorax and it can be common in CDH babies. We had to go to fat free feeds for some time and then worked our way back up to full fat feeds and using formula. The switch to the formula did help resolve my son's chylothorax and once we got it resolved he was fine and it never came back. We also had several chest tubes to help drain the fluid at different point in his recovery.

Praying Alex's chylothorax will resolve and she can get back on track with healing. Stay strong Alex!

mholladay
04-06-2013, 06:09 PM
Thanks Tracy. I know we're over the big humps (ECMO, surgery) but learning about this chylothorax was devastating knowing that there's not much that can be done to fix it except to wait it out. They couldn't positively diagnose it for the first week because certain indicators didn't match up, but once they started giving her breast milk via NG tube, the fluid turned whitish and then they knew. They stopped all feeds yesterday and today, the fluid output is clear again but still heavy. They are going to wait a week -- suspending all feeds except for the basics she's getting via IV -- and see what happens.

Chris and TracyMeats
04-06-2013, 08:40 PM
Alex has overcome some very big bumps and is so strong!!! She is a fighter!!

Definitely sounds like chylothorax from your description. Give her body time to adjust and now the doctors know what is happening, they will help her get back on track.

Tell her to stay strong...sending her love and prayers from Wyoming.

ClairMaher
04-08-2013, 02:12 PM
Charley had chylothorax and was put on a milk called monogen . Smelt like potatoe starch . She had this and ton x I hope is ok with your little one x

AmandaPlakholm
04-08-2013, 08:42 PM
Your daughter has definitely had some hurdles but sounds like an amazingly strong girl. Had a flood of emotions when i read your post about getting to hold her for the first time. Such an unforgettable feeling, your little girl will be in my prayers.

freedom
04-10-2013, 12:46 PM
Thinking of you all this week.

Chris and TracyMeats
04-22-2013, 11:20 AM
I saw the beautiful picture of your first cuddles on facebook on Friday!! Hope Alex is still doing great off the vent and going strong!!!

mholladay
04-25-2013, 10:13 AM
Hi everyone! Tomorrow will be 7 weeks since Alex was born on March 8. I'm happy to report that she is doing well off of the ventilator -- using Vapotherm now, and continually being weaned. We had a bit of a scare with chylothorax and, when the octreotide therapy failed to completely eliminate the fluid production, we almost resorted to sclerotherapy. That was scheduled for Wednesday morning, but when I showed up at 7 am prepared to watch them re-intubate her... Alex had decided enough was enough and stopped leaking fluid! She remained steady through the night with a dry tube and today, Thursday, we've been cleared to try feeding her from a bottle! Just a little bit and formula not breast milk but still... this is huge! We know feeding is the next big hurdle but are hoping for the best.

Chris and TracyMeats
04-25-2013, 12:15 PM
Alex is making progess!!! Such a strong little girl, full of fight!

Glad to hear that her chylothorax has resolved and you can start feeding her again. Praying for a good start to feeding and she doesn't have too many complications. She can do this!!!

It is so hard to believe it has been 7 weeks! Strong days ahead for Miss Alex!!!

Keep the good updates coming in.

freedom
04-28-2013, 08:30 PM
I was logging in to check on you tonight and saw your wonderful update. I'm beyond happy for you all. She is one strong fighter. I like this sweet little one already. Wishing you all the best this upcoming week and hope all goes well with bottle feeding. All sounds like great little baby steps. Sending hugs your way. How are you doing mom? Take care and know lots of people are thinking of you all.