Surgery Update #2

Just thought that I would give everyone some more details on how the surgery went. As you can tell, Elli has a silo. It is pretty overwhelming to see at first, so we will post some pictures of that at a later date. Elli didn't have too much bleeding and is actually doing very well and has stabilized out, hopefully for the rest of the night. Her blood gases looked a little on the acidic side so they are giving her a normal saline bolus now, but her hemoglobin and hematacrit are looking good so far indicating that she is not actively bleeding anywhere. Her two drains, one in her left chest and one in her abdomen, are draining some blood but not too much so far. As far as lung tissue goes, unfortunately Elli basically has no left lung. The lung tissue that is there is very, very small also called a "nubbin" by the surgeon. So basically all oxygenation will have to be done by the right lung, which by the most recent chest x-ray after surgery, looks pretty good. Dr A. actually is very pleased with the size and said that in some cases, the right lung will grow to try to compensate for the lack of left lung. I guess this is the silver lining in this whole ordeal. The true test of it's functionability will be when the doctors start to wean her off the ECMO machine (24-48 hours from now) as long as Elli doesn't develop any bleeding issues. So basically we are back to the waiting game. As for right now Elli looks very stable, her blood pressure looks great as do the rest of her vital signs. The nurses are going to draw blood gases again at 1 to make sure that it was a fluid issue and not an oxygenation issue. So as of right she is stable and doing as well if not better than expected. Will post how she is doing in the morning. Thank you all so much for the continued support, just knowing that everyone was thinking of Elli and us was awesome. All the comments really made us feel so blessed that we have such a strong support system. Thanks again Brian, Cassi and Elli

Surgery Update

Elli made it through her surgery which lasted about 2 hours. The defect was very large as we knew it would be. They used a Alloderm patch to do the repair, and because of the amount of liver that had been in the chest, the surgeons had to create a silo to put Elli's stomach, intestines, and part of her spleen in. She looks pretty stable for now, will post more indepth later..going to see Elli now.

On the Move ~Videos

Brian took this video this morning while we were waiting for Elli to go to surgery.

It took a couple respiratory therapists and 3 nurses to move Elli literally 20 feet to the operating table. They had to make sure that none of her lines got kinked or crossed. Brian and I held our breath the whole time. We were so glad she didn't have to go to an actual OR.

Moving little Elli onto the operating table...more nervous mom moments.

It's started

Elli stretching out before her surgery, that girl's got some long legs!

All cozy on the surgery table after they but a BearHugger under her and warm blankets on top. After they moved her she was pretty cranky, but once those warm blankets hit her she was right back to sleep and looked so comfy cozy.

Elli in her "New Room" ~ the surgery suite. She will be staying in this room for a couple of days so the nurses won't have to move her to increase the risk of bleeding.

All ready for surgery....just waiting on the surgeons.

We stopped by to see if Elli had started her surgery, and at about 4:00 the anesthesiologist and surgeon walked in...we gave Elli our final kisses, told her how much we loved her, and said one last prayer. So as of now, 4:32 she should be well on her way to a repair. Brian and I are waiting in one of the Parent rooms that they use before babies get discharged. The parents stay the night with the kiddo and do all the cares to ensure the parents know what to expect when they are at home with their baby. It has a bed and a TV so Brian is resting on the bed and watching TV, just waiting for the surgeons to come in and let us know how our little lady did.

Playing the Waiting Game

So Elli has not started her surgery as of 3:25. She is in the room and everything is ready, just waiting on the surgeons to show up. I'm going to pump, will post when she goes, and we have some cute pictures and a video when I get back.

Game On

We have the green light, Elli will be having her surgery sometime after lunch, the plan between 1 and 2, there is a baby in the surgery suite right now, but he will be moved out and Elli will be moved in so she can get settled and stabilized on the OR table for about an hour before her surgery. She is going to get to stay in the surgery suite for a couple of days pending there are no emergency cases that need the room. This is a big relief to Mommy and Daddy since she will be so critical after surgery and any movement will increase the chance of bleeding. After much debate this morning, the doctors and nurses decided that they would wait until after Elli's surgery to put in a central line. As of right now Elli only has her ECMO cannulas and one small IV in her foot. When it is time to wean her off ECMO, all her meds will have to find another way and since the IV in her foot is so small, and also TPN (kind of like her food for now) cannot be given through a peripheral IV, she needs to have a central line placed. We were hoping that they would do it before surgery since afterwards, I don't want her to get worked up, but I guess the decided that they didn't want to do it while she was on so much Heparin.

As for last night, I called and talked to Elli's nurses around 2 after I got done pumping and Elli had to have her ECMO flow turned back up slightly. Her blood pressures were staying fine, it was her blood gases that didn't look as good as they were with the higher amount of support. Last night her gases were slightly acidotic meaning that she wasn't able to blow off enough CO2. The reason for this is that because Elli's vent settings are so low because they don't want to expand that right lung too much which would cause the heart to be compressed, her lungs were not doing enough of the work to get rid of the extra carbon dioxide. Dr. P did not seem to concerned with this since none of the vent settings were changed, he wouldn't expect her to be able to do the oxygen/carbon dioxide conversion herself. So we didn't really take it as a set back, more of a trial run before surgery.

Elli has been really sleepy all morning, even when they turned her at 8:00, she didn't even wake up, which usually makes her pretty cranky. The nurses have not given her any PRN meds since they changed her cannula site on Tuesday. I guess she is just getting her rest for the big afternoon. I hope that she wakes up just a little bit before the surgery so I can get one last peek at those beautiful blues before surgery. Don't worry we will keep posting throughout the day with updates on Elli! Thanks to everyone for the comments, it was so awesome to see how many people posted when we got to the hospital this morning. Check back later..... Brian, Cassi and Elli

Finally...Daddy's got a job

Since Elli has been sucking on her ET tube so much over the past few days, our day nurse decided that she might like to try a pacifier. The results are pretty evident.

This didn't really come to a surprise to Brian or I because Elli was constantly sucking her thumb in the ultrasounds, and I will admit; I too was a thumb sucker...for longer than I would like to say.

The only thing is, that with the ET tube, someone has to hold the pacifier in Elli's mouth because she can't get suction on it with everything else that is in her mouth. That is where Daddy comes in, he is now the OBH ~ Official Binki Holder!

The doctors made rounds this afternoon around 4 and the plan for Elli is to have her surgery around 1 tomorrow. Hopefully she will be able to have her surgery in the adjoining surgery suite, that is still up for debate since another kiddo may be returning to it after his surgery. Also they turned Elli's ECMO pump down more this afternoon too! It is now down to 300! Way to go Elli. Even the doctor that didn't give us much hope that first morning that Elli went on ECMO said that he is seeing some really positive things from this little lady and she is really holding her own. He said that he has renewed hope in her outcome, so coming from him, that is pretty amazing...but of course her mamma already knew she was resilient. The surgeon did say that Elli may come back from surgery with a silo. A silo is a bag that they will use to put in any extra intestines that don't fit back into her little tummy, so that might be an option we'll just have to wait and see.

Overall we are super excited and nervous. I think we have geared ourselves up for the surgery and are ready for Elli to get on with the healing process. We will be keeping everyone posted as soon as we know more news. As for now, we are going to spend a few hours with Elli tonight and try to get back to CMH good time in the morning to spend as much time with Elli before the surgery as possible. Hopefully no more switches in the surgery schedule!