We got some great news about Cora today. She is eating enough by mouth to switch to what they call on demand feedings. She has a minimum she has to eat in a 12 hour period. As long as she meets that amount for 48 hours straight, she can go home! So I am hopeful that she could come home Saturday. She also has to pass a carseat test before then. She has to sit in a carseat for 90min with a monitor on to make sure her heart rate and oxygen don't drop while she's in the seat. Way to go, Cora!!
Lily is making steps forward in her recovery after her heart surgery on Monday. They removed her chest tube and foley catheter yesterday morning. They removed her arterial line today and the nurse changed the dressing on her incision. It looked great. She has several stitiches in her chest that will need to come out next week. She is still intubated on the ventilator, but they stopped the sedation medication today and started weaning her down on the ventilator. We're hopeful she might come off the vent tomorrow. She may or may not need CPAP again when she does come off, but we'll see how she does. The cardiac team is pleased with how she's doing. Her pulses and vital signs all are great. They checked a chest x-ray and an ECHO this morning, and those both looked good.
Joe survived his first day back to work. He was able to leave a little early so that he could spend some time at the hospital last night. We are so grateful for all the messages, meals, lunch and coffee breaks, visits, calls, and prayers. We are blessed with so much love and support.
Cora has the hiccups
Sweet card the nurses made from Cora to send with Lily when she went to surgery
Joe and I arrived at the hospital at 6:30am this morning in anticipation that Lily would be going down for surgery shortly after 7am. The nurse gave us some scary news when we arrived. She said that some of her labs this morning, specifically kidney function, came back elevated. Surgery was on hold until the surgeon could come to evaluate her and make a decision. Dr. Haw arrived and assessed her, spoke with the NICU doctor, and ordered a chest x-ray. He believed her kidneys were being affected by poor circulation due to the excess blood flow to the lungs. Therefore, Dr. Haw said we should do the surgery and the kidneys would improve as a result. Phew! So she went to surgery a little later than planned, but she finally made it there!
The actual surgery only took about 30min, but she was in the OR for about 4 1/2 hours. They had to place a central line and an arterial line which took some time. Set up and clean up also took a long time. Dr. Haw came and spoke with us immediatley after the surgery. He said everything went well. He closed the PDA completely with no sign of coarctation, and he put the band on her pulmonary artery. He said he could already see the aorta bulging, which means blood is flowing to the rest of the body, where it should be going. So the surgery seems to have been a sucess! He did say that he will need to close her VSD earlier than we initially thought. Dr. Haw thinks around 2 or 3 months she will need to have the pulmonary band removed and the VSD closed. That will require open heart surgery and bypass.They did an ECHO today once she was in recovery on the cardiac unit, and that showed good improvement compared to the ECHO prior to surgery. Her kidney function was already improved following surgery and the rest of her labs looked pretty good as well. Thank you, Lord.
After she was settled in on the cardiac unit, we got to go see her. I'm struggling to think of the words to describe the experience. She was (and is) intubated and sedated. She has a chest tube and a foley catheter. She has a central line in her neck and an arterial line in her right arm. She has a peripheral IV in her left hand, a large dressing on her chest, and orange skin from solutions they use to clean her skin in the OR. She has 4 or 5 IV pumps with all of the medications and fluids she is receiving. And of course her feeding tube. It was painful to see her this way. But we know that she did well and is doing well in recovery, so we are thankful for that. There is a nurse with her 24/7 right now. There's a good chance she will come off the ventilator tomorrow sometime.
Thank you all so much for praying for Lily. I have not been able to really pray. When I try, my mind goes blank. So thank you for interceding for us. It means everything to me.
Cora had another great day. She gained a little bit of weight, and she is taking more and more milk by mouth instead of through her NG feeding tube. Her labs and vital signs all look great. Still not sure on a discharge date for her, but I'm hopeful that it will be by the end of the week, or early next week.
Please pray for us as Joe returns to work tomorrow. It will be tricky figuring out a new routine/schedule. Please pray for good rest after an exhausting first couple weeks, and for our hearts as well as we process the events and images of today and the last 2 weeks. They are 2 weeks old today! Crazy.
Cora loves to sleep
The nurses from this past weekend made these for the girls :)
After a stressful couple of days, Saturday and Sunday were relatively quiet which was nice.
Cora has started getting the hang of taking her milk by mouth which is great! She's currently getting 46ml of milk at mealtimes and just this afternoon she took 40ml from a bottle! She's been having longer stretches of being awake and alert which is very fun. Other than that she's her usual quiet, low maintenance, self.
Lily...where to start. After her, essentially, emergency surgery to replace her G tube the NICU surgeon was cautious for her to go in for heart surgery since they had to give her blood thinners. The possibility of having the surgery become open heart surgery in the event of coarctation wouldn't be good if she had the blood thinners in her system. However, we just found out this morning that Lily's PDA has mostly closed itself in the last couple of days! That's really good news for several reasons. The PDA being mostly closed and not resulting in coarctation means the surgery will not be open heart, so they can proceed with surgery on Monday morning as planned.
(Side note, they are not concerned about any infection since all blood tests are still clean and she hasn't had any fever or heart rate issues since that one time.)
Since they don't have to worry about coarctation they will go through her chest for the pulmonary banding and fully close off the PDA, instead of going through her side which they would have done so that they could correct any coarctation that might occur. Sorry if that's all confusing, I'm not a medical professional so my explanation might not be on point, but the short version is - it's good news!
Lily's surgery is scheduled for 7:30am tomorrow. We will need to be at the hospital about an hour early so it's going to be a long day for Mom and Dad. Between pre-op, surgery, and post-op, we're figuring about three hours. Lily will be intubated and on a ventilator for the surgery. After surgery, she'll go to the cardiac floor for observation and care until they're confident her heart and lungs are functioning well and she can come off the ventilator. After that, however long it takes (days?), she will get moved back down to the NICU - *hopefully* to the same unit we are in now as we are rather attached to the nursing staff who have taken care of Cora and Lily these last two weeks.
Rosie is still very much attached to her baby doll, which only started after she met her baby sisters. Coincidence? I don't think so. It's very cute! It's amazing how big she seems after spending day after day with our premie twins. She's such a toddler, in all the most adorable ways. Talking, learning new words every day. Running back and forth across the house, with no end to the energy in sight. Growing into her big sister role by helping clean up "uckies" off the floor, practicing changing diapers on her baby dolls, closing doors for us, and providing us endless laughs at her antics.
Prayer Requests:
For Cora to continue to get the food-by-mouth process down so she can gain weight and go home!
For Lily's heart surgery to go well.
For Joe, as I'll be going back to work Tuesday and have to figure out how to fit work, hospital, Rosie, and sleep into one day.
For Heidi and Joe, as we try and wrap our heads around what our lives will be like for the next, potentially, 6 or so months.
For Rosie, as her formerly predictable little world is getting turned upside down right now.
We will put out an update as soon as we can tomorrow after the surgery.
Wrapping up, here's a cute little song that I stumbled across this afternoon that is sure to get stuck in your head.
Daddy and (some of) his girls
Cora in a food coma
Blurry picture of Lily, as feisty as ever
Rose passed out with baby after a fun afternoon with Oma and Papa
Yesterday was another eventful day. Lily's feeding tube came out accidentally. We're not sure how it happened, but it was not secured as much as a normal tube because Lily's stomach is still so small. It's so small that the balloon used to help keep it in place in her stomach could only be inflated with a very small amount of water. Regardless of how it happened, she had to go back to the OR to have a new one placed. Thankfully, we didn't have to wait long. The same surgeon that placed it last week was there and up to talk to us within an hour, and she was off to surgery shortly after that. The surgeon, Dr Elliot (Pennington, but he looks so much like an Elliot that Joe and I like to call him Dr. Elliot) was concerned about gastric contents potentially being spilled from her stomach, but he said it looked great and that he cleaned everything out very well. So hopefully no infection. They also gave some antibiotics during surgery. He secured the tube with 4 sutures instead of 2 this time, so hopefully we won't have to worry about this happening again! Later today they can start using the feeding tube, but they will bump her feedings down to 5ml at first and start working back up. She had been up to 9ml.
Lily is still on a ventilator right now, but she's starting to wake up and will most likely come off the vent sometime this morning or afternoon. Joe and the nurse kept a close eye on her overnight, and she seems pretty comfortable. It's possible that this will delay her heart surgery. We were on board for Monday surgery as all of her labs have come back negative for infection, but Dr. Elliot is worried about her having surgery that requires a blood thinner (heparin) so soon after having this surgery. He is going to talk to Dr. Haw (heart surgeon) on Sunday to discuss it, so we should know Sunday whether or not she will go to surgery on Monday for her heart.
Cora had a great night. She drank half of her feeding from a bottle this morning! The other half then goes through her NG feeding tube. She gained weight yesterday again :)
I was able to hold both girls at the same time for the first time yesterday. That was special.
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.
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.
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.
