Updates on Carolena

With everything going on and all the places I am having to put update posts, my poor lonely blog seems to always get the shaft. So, in the interest of fairness I am putting the updates I sent out as emails here in a blog post. Hope blogger will let me put that much in one post...

#1 - Carolena is in OR (December 9 - 8:20am)

Of course we were late to the hospital (got in at 6:15am). Go figure. But all is good since we did preop yesterday. Nothing to make C cry this morning. All the lines and ivs will be done after she is sedated. Thank goodness. We met with anesthesiologist and doctor before they took her back. The surgeon informed us that he may in fact go ahead and do her Glenn surgery today as well. He is going to repair the pulmonary veins first and then see what her pressures look like. He will decide from there whether to proceed with Glenn or not. Other than being surprised with this info this morning, Kevin and I are on board with doing her Glenn today as well. Keeps her from doing two surgeries before her 1st birthday and of course the fewer times they have to open her up the better. The surgeon did tell us that he thinks doing the Glenn today would not be an agressive approach and feels very comfortable proceeding if he is okay with her pressures. He thinks she will tolerate both procedures very well and should have no increased risk for bad complications. C went back to OR at 7:30am and the nurse told us it would be at least an hour before they even started surgery. C has to be sedated, lines placed, intubated, the echo done, switched to bypass and then surgery started. Nurse said she will do best to update us approx every hour.

#2 - Update from OR (December 9 - 11am)

Just got an update from the OR. Nurse says C is doing really well and that the surgeon is moving ahead and doing her Glenn procedure today. Great news in that she will only have one open heart surgery now (not the two we were being told).

#3 - Out of Surgery (December 9 - 1pm)

C is out of surgery and in recovery. She is doing well. We met with the surgeron about 20mins ago and he thinks she will do fine with recovery. She will have a swollen head for awhile. She may develop plural effusions, fluid in and around the lungs, which require drainage through caths until her body stops producing the fluid. She needs to eat as well or they will insert a feeding tube. Clots and strokes are still a risk as well. Please, please keep the prayers coming as they are working. C is a ROCK STAR!

#4 - Picture Soon After Surgery (December 9 - 5pm)

Still doing well. Little fluid around heart they are watching but overall, so far so good. Thank you all for prayers and keep them coming, still rough road ahead, especially next 24hrs.

#5 - Almost 24 Hours Post Surgery (December 10 -12:30pm)

And C is still rocking along! She does have pain but it is much better controlled now with a constant drip instead of the more traditional method of loading her up then wearing off. She is trying to be awake but can't quite get her little eyes all the way open. We did she her sweet little eyes a few times last night. I have a feeling when she really comes to she is going to be giving me the total stink eye. But, I will take what I can get. The doctors are starting to slowly remove some of her lines. She no longer had the oxygen reading thing on her head and back. The nurse is getting ready to take out the line in her neck. Each time a line comes out and nothing new goes in, we are one step closer to home. She does still have her chest tube, folio catheter, 2 regular ivs, 1 arterial line,1 central line and a nasal canuala (for small bit of oxygen). So, as you can see we still a have a very long way ahead of us. Hoping the oxygen can go soon and the nasal cannula can be removed. She really hates that thing blowing in her nose. Doctors are still very closely monitoring C. Her atria is still not quite firing correctly but they think only because she was disrupted yesterday. So, to help her out until her heart is 100% she is getting a little help from an external pacer. As the doctor said this morning, she can do fine without the pacer but it is helping so lets leave it for now and help her out. There is still a little fluid around her heart but the chest tube is still draining so it is not too concerning. Still watching her urine output and want to see more but where she is right now is too be expected. Also very closely watching her temperature. We do not want to have an infection set in and delay her recovery. Her breathing is still a little heavier than we have seen it but again, nothing out of the normal and too be expected at this point. Surprisingly her head is not as big and swollen and we were told to expect. I understand she could still swell a little more through the next 24 hours but after that she will have hit max swelling and start to recede. The swelling and the change in pressure in her head does cause her some pain and headaches but she is getting tylenol round the clock to help with that. Overall the doctors are happy with where she is. The intensivist said this morning that "her body is self-regulating. Pretty neat that she is doing on her own exactly what we want and what we would do manually with machines if she was not." Amazing. We may get to try and feed her later today, if not today, then tomorrow. I know she will be sooo happy to eat again. Talk to using a ng feeding tube at first but we are not exactly on board with that plan but we will see. I am very grateful to all our family and friends who are saying prayers for us. Even if I do not respond directly back to you, please know that I read EVERY comment sent back to us. If you have offered help, we will absolutely take you up on it when we need it. If you have said special prayers for us, we do see it. I am awed by the ones from the little ones who are praying for us. For such little kiddos they really seem to know exactly what to say. Like Carly's precious daughter Georgia who with no prompting prayed for God to "bless her heart." Thank you all soooo much. We are not out of the woods yet but keep taking baby steps forward.

#6 - 48 Hours Post Surgery, A Few Hours Ago (December 11 - 5pm)

C decided to keep things interesting this morning. Around 7am the nurses came in and started to remove things. C had her chest tube removed and her foley cath removed. In addition, her fentynol (pain meds) were stopped. Now, C does not like to be messed with. She gets upset when people are messing with her when she does not want to be messed with. Especially in the morning when she would rather sleep. She IS NOT a morning person :) So, she freaked out. Poor Kevin was here by himself when this happened. I was still at the RMH. C had terrible mottling. Mottling looks like a spider web over your skin, you can see all the veins clearly. And she started turning a horrible shade of purple. Her one arm was really, really bad. The doctors and nurses rushed in and started attending to her. The thought was she may have a blockage (or worse a clot) in her arm from where the anesthesiologist tried to put an arterial line. Or even much worse, that the heart repairs were not working and her heart was failing. So very scary for all of us especially Kevin because he was in here watching it. Doctors did an echo immediately. Her heart is fine. Repairs are good and her function is good. Did an ultrasound on her arm to check for the clot or blockage. Even without the official report from radiology the doc did tell us that there is flow to her arm so it is good. Did a chest x-ray to make sure her lungs are good. She was coughing and throwing up mucous this morning. But her x-ray came back fine. No pneumonia or fluid in/or around her lungs (plural effusions). Her blood pressure is still a little elevated but I have not seen any of the doctors in her room since I have been here. When you do not see the doctors you know you are doing pretty good. And, very good news is that she is still not running any kind of fever. Infections are a big complication so we are very happy to see that there is no fever. So. The short of it is that C is still doing pretty good. She has had her chest tube removed, her foley cath removed, her nasal cannula removed. She still has two iv's (one in each foot), her central line and her pacing wires. Even though she still has her pacing wires she has been off of the pacer since yesterday. Her heart is not 100% in perfect sinus rhythm but is very very close. Very good news. (The central line is kind of like an iv but the line goes through her chest directly into her heart. The pacing wires also go through her chest directly into her heart). She is now just on a diaper and is urinating fine. She has also had a poopie diaper which is a good indicator for letting her eat....which is the BIG news of the minute. I was finally able to feed C at 4pm today. She took 3 ounces of formula in 15 mins. I know that does not seem like a big accomplishment but, for a heart baby who just underwent open heart repairs that is AWESOME. We are still closely watching and monitoring C. She can still have complications arise but we are slowly getting to the other side. All of our prayers are working so keep them coming! Thank you, thank you. thank you...

#7 - So Much for Carolena Eating (December 11 - 11pm)

I was really hoping she would be eating much better. Oh how wrong I was. When the doctor finally gave the go ahead for her to eat and I gave her a bottle she took the whole thing down like a champ. I was really encouraged. Now two more bottles later and she is sucking...and not the formula. All we have heard from the doctors is that she will be such a different eater once she has her heart repaired, Even with just doing the Glenn (which is not the full repair) was really supposed to help. When we thought we were just having the vein repair surgery I was not too hopeful better eating. But having the Glenn is supposed to make a real difference. So far that has not been the case. Crap. I guess what is most frustrating is that we were actually making small improvements in her eating right before she came in for her surgery. Not all the feedings were great but we were definitely making progress. Now I feel as though not only are we not moving forward with better eating but we are actually moving backwards. Grrrrr. Have I mentioned how much I dislike trying to feed my ridiculously picky child in the hospital. She just won't eat and I cannot reason with her that if she does not eat then she will get a feeding tube. Which I know she will hate. With a passion. Really don't understand why I cannot just reason with her...;) The doctor did say that she would not eat any worse than she has been. Well, really? Because right now she is not doing it and that has just not been the way she has been eating lately. To me. that means her eating is worse than before. Maybe tomorrow will be better. Maybe she just needs time to adjust. Maybe if C understands just how many people are wanting her to eat then she will just magically start doing it. So. Please send lots of happy eating thought our way. C really needs to start putting the bottles down.