One Step Back..

Unfortunately, surgery is not happening tomorrow. This afternoon, Lily spiked a fever. The NICU doctor came to see her immediately and ordered several lab studies. Until infection is ruled out, she cannot go to the operating room. So they checked a urine test, blood work, blood cultures, and a lumbar puncture for spinal fluid studies. So far, everything has come back negative, but the cultures will need at least 36 hours to grow. If everything stays negative, the teams will reevaluate on Monday to see if she is ready for surgery.

This was heartbreaking news for us. We understand the importance of ruling out infection before surgery, but we were so hopeful that the surgery would improve her breathing, help her to be more comfortable, and move her forward in this long journey. If something does come back positive, they will treat with antibiotics specific to the infection and surgery will be postponed most likely 7-10days. They did start her on a couple broad spectrum antibiotics right away. Thankfully, the ECHO today showed that her PDA closed some, and that it did not cause any narrowing of the aorta. So no sign of coarctation which is wonderful. Sounds like they will still close the PDA all the way and do the pulmonary artery banding in surgery.

Lily was back on phototherapy today. Her labs other than high bilirubin all look good though. Her blood gases are good too, but she's still on CPAP to help her breathe easier.

Cora is still doing fabulously. She's maintaining her temperature, gaining weight, and starting to take small amounts of milk by mouth. We're hopeful that she will come home sometime next week.

Today was another emotional day, and we appreciate your prayers for us as well as for the girls. Sorry about the issues with the blog link. Hopefully we can get it sorted out with facebook soon. For some reason, it thinks our blog is inappropriate content.

Sweet Cora Marie

The nurses decorated the girls' door :)

Rose is SO excited to be a big sister

Email Subscription

Just a quick housekeeping email.

I added an email subscription option to the blog. The subscription works through Google's "Feedburner" service, not direct from Blogger. This means the confirmation email you get, as well as updates, technically come from a Feedburner email address.

It appears that some email services are sending emails from Feedburner to Spam folders. So if you subscribe and don't get a confirmation email right away, or you're not getting emails as the blog is updated, check your spam. You may need to select one of the emails from Feedburner and set it as "not spam" so they'll go to your Inbox in the future.

-Joe

Let's get to the heart of it

This morning we met with the cardiac surgeon, Dr. Haw, to discuss Lily's heart surgery. There was a lot to discuss. I think he was in our room for over half an hour.

Lily's PDA (patent ductus arteriosus) is very patent or open still. Normally, the duct closes shortly after birth. Because Lily's has not closed, she is getting too much blood flow to her lungs, making it harder for her to breathe. So they need to do surgery to close the PDA. She also has a small aorta, which puts her at risk for something called coarctation of the aorta when they close the PDA. Feel free to google. I'm not a cardiac nurse, so this is all brand new for me too! They should be able to tell after they close the PDA if she has the coarctation and then they can correct it right away. Both of these procedures are straight forward according to Dr. Haw, but he also explained the risks and possible complications of both procedures.. which was terrifying. I know they have to prepare us for what could happen, but sometimes Joe and I think it would be better not to know!
In an effort to further decrease blood flow to the lungs and increase blood flow to the rest of her body, they will be banding the pulmonary artery. Kind of just like it sounds, they put bands across the artery to restrict blood flow to the lungs.

Dr. Haw is not planning on closing her VSD at this time. He explained to us the benefits of waiting until Lily is bigger to do that. He did say that it is a large VSD and will need to be closed. So she will have open heart surgery for that when she is maybe 6ish months old. We're not sure yet how that will play out with her esophagus surgery time wise.

As Joe mentioned, there is going to be a conference this afternoon between all her care teams to discuss the surgery. Sounds like it's pretty much decided according to Dr. Haw, but this will be a chance to make sure everyone is on the same page. Lily will have a chest x-ray and another ECHO tomorrow to give them a baseline of how things look before surgery.

We ask for your prayers for Lily. We are both anxious about this surgery, but we know it's what she needs. After the surgery,  she will be on a cardiac specific floor for her recovery.  She might be there for a week and then come back to NICU for the remainder of her time here.  Cora will stay in the NICU until she is ready to go home,  so they will be separated on Friday 😞

We're looking forward to having my parents come this weekend and my mom is staying for 2 weeks.  Yay!

Skin to skin time with Lily 

Cora snuggles 

Cora is maintaining her temperature,  so we can dress her in our baby clothes and she's in a bassinet now.

Nine Days Old!

Hello Friends,

Not really any new info to report as of yesterday. Cora is doing great. They had the top of her bed open yesterday and she's regulating temperature well. Now she just needs to start taking food by mouth.
Lily's bilirubin level came down yesterday so they took her off phototherapy for the day. There's the chance it could come up enough to require it again today but at least she got a break from it for a day. The doctors and cardiac surgeons are meeting today to discuss her heart issues and come up with a plan. The loose schedule is still surgery Friday, but that's subject to change. They bumped her CPAP up a bit as they thought she was working a bit too hard to breathe. We think maybe her heart PDA valve being open could be a contributing factor to that, so hopefully, this surgery helps that.

For you non-kiddo folks that (like me, pre-Rose) don't know what "bilirubin" is...

"Newborn jaundice occurs when a baby has a high level of bilirubin in the blood. Bilirubin is a yellow substance that the body creates when it replaces old red blood cells. The liver helps break down the substance so it can be removed from the body in the stool. It is normal for a baby's bilirubin level to be a bit high after birth.
When the baby is growing in the mother's womb, the placenta removes bilirubin from the baby's body. The placenta is the organ that grows during pregnancy to feed the baby. After birth, the baby's liver starts doing this job. It may take some time for the baby's liver to be able to do this efficiently.
Most newborns have some yellowing of the skin or jaundice. This is called physiological jaundice. It is often most noticeable when the baby is 2 to 4 days old. Most of the time, it does not cause problems and goes away within 2 weeks.
Sometimes, special blue lights are used on infants whose levels are very high. These lights work by helping to break down bilirubin in the skin. This is called phototherapy."
https://medlineplus.gov/ency/article/001559.htmv

Lastly, I added a tool to the blog that lets you put your email in and get alerted when a new post goes up on the blog if you so desire. It's on the upper right-hand corner of the page. I tested it out, and it requires a confirmation email to be sent to you. My email filtered that message to spam so if you don't see it in your inbox pretty quickly maybe check there.

-Joe

Hopefully, Cora will be home soon!

Poor Rose was pretty tuckered out after a big day at the hospital visiting her sisters.

Moving Day

Big day today for Lil and Cora.

First off the cardiac team did another echocardiogram on Lil this morning. They saw that her PDA has still not closed. They told us that they decided it would be best for them to go in now and close that because with that open she's getting too much blood flow to her lungs and not enough to her body and it can actually slow her growth. The plan is that they'll have a big meeting between the Dr.'s and surgeons on Wednesday, and most likely have surgery for her on Friday. They'll go in and basically put a band on that duct. They'll also check for, and repair if necessary, any restriction in the aorta. We're not sure if they'll also close the VSD (the hole in her heart) at this time or if that will happen later.

Cora is still trucking along. She's now on gravity feeding through her feeding tube and it's been going well. They're working on getting her to regulate her own body temperature and that seems to be going well also. We're not sure if she'll be coming home this weekend or not. It will depend how quickly she picks up eating by mouth, and from what we're seeing so far it seems she might need a little more time.

It's great to see Cora doing so well and to know that we'll be able to bring her home (hopefully) soon, but it almost makes it that much harder to see poor Lily with all her tubes and sensor wires and being so small and frail.

Final report for the day, due to high baby count at the hospital, they decided to move Cora into Lily's room to free up space. It'll be a little tight but it's kind of nice to see them closer together to keep each other company.

We really appreciate all the support and kind words from everyone as we continue on this journey.

-Joe

Cora enjoyed her lunch today

"Turn the lights out, I'm trying to sleep!" 

Lily Ann having her spa day, working on her tan

"Sisters, sisters. There were never such devoted sisters. Never had to have a chaperone, no sir. I'm here to keep my eye on her!"

Ups and Downs

Ups and downs are what people tell us to expect in the NICU.  We've seen that already for both girls.

Up,  both girls are off phototherapy today. They will both get a bilirubin check tomorrow morning to make sure it's still going down.

Down, they attempted a PICC for Lily last night but were unsuccessful.  They will hopefully try again sometime today or tonight.
(Follow up, they did get the PICC in today.)

Up, both girls had their feedings increased. Cora is now getting 46ml of breastmilk through her NG tube every 3hours and Lily is getting 2ml of breastmilk into her G tube every 3 hours (in addition to TPN through her IV)

Down, I (Heidi) am having an emotional day. Cora is doing so well and losing lines and tubes every day. She looks like a small normal baby and it feels real that she could be coming home soon. Lily, however, has such a long road ahead of her, full of lines, tubes, and surgeries. The difference struck me in a powerful way today.

Up,  because Cora has very little attached to her now, we were able to hold Cora in Lily's room next to each other. Joe held Cora, and I held Lily. It's the closest they've been since birth 💜

Lily is still on CPAP.  She has another Echocardiogram tomorrow and I am anxious to talk with the cardiologist about the results.

Thanks again for all the love and support. We feel blessed by all the messages, texts, calls, gifts and meal offers 😊

Update - 1/24/2020

Today Joe and I spent most of the day in NICU. Rose even came to visit her baby sisters for a little while. Rose loves to look at them and she has gotten very good at saying their names.

Lily had a feeding tube placed on Tuesday and we are just now starting to give her 1ml feeds. Her stomach is so tiny! (Approximately 3ml total). She is being monitored closely for some cardiac concerns. She has the large VSD and we are waiting for her PDA duct to close to see if there will be a narrowing in her aorta that would need surgery. They're doing frequent heart scans to check on that so that if it does begin to narrow they can hopefully catch it right away to correct it. Hopefully not needed! She was extubated yesterday and is doing well on CPAP.  They also did a bronchoscopy on Tuesday that confirmed the esophageal atresia. Unfortunately,  it looks like the type (Type A) that will require her to be here for a few months. We have to wait for the two ends of her esophagus to grow closer together before surgery is possible to connect them. She is also going to be getting a PICC today or tomorrow, which is a line that will go in probably through her arm and direct to her heart to allow them to give meds/fluids and nutrition. 

Cora is doing great. She is off CPAP and doing well without any respiratory assistance.  She is receiving breastmilk through an NG tube and will hopefully be starting oral feeds soon. We are hoping she can home in about a week,  maybe two. Both girls are receiving phototherapy right now.

Welcome Cora and Lily

Hello friends and fam,

Joe and I decided a blog would be a useful way for us to give updates on the girls, so here we are!

As many of you now know, Cora Marie and Lily Ann decided to surprise us by coming a few days early. We were scheduled for a C-section on Thursday Jan 23, but they arrived on Monday night, the 20th. It's a long story, but at my doctor's appointment on Monday moring, they decided to admit me for observation at Butterworth. Good thing, because I went into labor a few hours later. They tried a few things to stop or delay labor, but it didn't work. So we quick prepped for a c-section and Cora Marie and Lily Ann were born about 8:30PM Monday night. They are both stable, but in the NICU right now. Cora is A, and Lily is B. Lily is our trouble maker as you know. She had surgery Tuesday to place a feeding tube into her stomach, and they did a procedure to check the type of esophageal atresia she has. Right now, it's looking like the type of esophageal atresia that will require her to be here for a few months of growing before they can do the surgery to repair. Not what we were hoping for, but we're trusting that she's in God's hands. She's in very good hands, it's just hard knowing we will be doing the NICU life for potentially so long. We're not sure yet about her heart issues because we've been getting kind of conflicting opinions from some of the different doctors. She still has the VSD or hole between her two ventricles, but we won't know right away if she will need surgery for that down the road. It's also unclear yet if she will have an issue with narrowing in another part of her heart. So it's a lot of wait and see right now. She was on a ventilator the first couple days. We were able to hold both of them skin to skin Tuesday which was so nice.

Cora, we hope will be able to come home in a week or two. She's doing very well considering being born at 33weeks and 5 days. She will need a little time to figure out eating and gaining weight. Cora weighed 5lbs 1oz at birth and was 18.5 inches. Lily was 4lbs 3oz and 18.3 inches. Everyone tells us that those are great weights for their age. 

The NICU is not a place you want to be obviously,  but everyone here has been so kind to us,  and they do a great job of including us  in care and keeping us updated. 

Thank you so much  for all your love and support!