Milk face

We've just gotta get this girl gaining weight, and we can go home! Send heavy thoughts. 

Dottie & Kit comparison

More similar than I initially thought. 

Moving into week three

Alright!  So hopefully we are looking at the homestretch. Kit has to meet several milestones before she can go home.  Breathing on her own, which she is doing; maintaining her blood pressure, which she is doing; eating full meals by mouth, which she is close to doing; and a few others I can't remember. What we are working on now is consistent weight gain, right now she is losing, not enough to be super concerned, but enough that she's sticking around the nicu for a while. 

Her other issue is that she's had a few tachycardia episodes. This is where she's having a fast heart rate or a few extra beats. So far this hasn't affected any if her other stats.... Oxygen, breathing rate, blood pressure.... And she has brought her heart rate down after a few seconds on her own. She's on meds for this, and it will hopefully resolve itself as her heart continues to heal. 

Here a a few pics from the last few days. 

Kit meets Dottie finally!

Two weeks old and still kicking ass!

She is certainly making more and more progress towards coming home. Shes not even in a fancy bed with a heater any more. We keep hearing days rather than weeks at this point. We are starting to talk about the discharge process. Soon Dot and Kit will overwhelm us - with love!

Post-Op: Day 9

Kit's eleven days old and things are looking great! The levels on her kidney labs continue to improve. At 4am her creatinine levels had decreased to 1.4 and the increased her fluids overnight, so maybe we will see even greater improvement today.   

She has a line that has been in her right femoral artery since her birthday that is finally coming out!  This is good news for a couple of reasons. If they feel like they don't need a direct line, they aren't worried about emergent things happening to her and it just looks terrible and now that spot on her leg can begin to heal. 

All good news!!!

Post Op: Day 8

So, a week ago at this time, Kit had just headed back for surgery, and look how far she's come. Breathing on her own, maintaining her blood pressure, and breastfeeding. 

Now we just have to figure out this kidney thing. The docs think she Is dry, so they started IV fluids over night and will probably put the feeding tube back in to give her a minimum number of calories and because she wears herself out eating. She still gets to breastfeed, so that's good.  Once all this is implemented, she will hopefully have some good numbers for her kidney labs. 

Kit's sleepy smile this morning. 

Last night before we left to get some sleep. 

9:18

So, it looks like we've made some improvement with Kit's kidneys. Her creatinine levels have gone from 1.8 to 1.6 as of 4:00 this afternoon. We want to be below .7 (I think that's right). So we have a ways to go, but we're moving in the right direction. Yippee!  Going to try to get a decent night sleep, so I miss rounds in the morning, but will update as soon as I can. 

Post-Op: Day 7

Beth here. Charles is in Lexington with Dottie, that's why there haven't been many updates. 

So the good news is Kit is breastfeeding. She's great at it, though she gets tired easily. Her feeding tube was removed this morning, and they are weaning her off the oxygen she gets through her nose. She looks great. 

The not so good news is that her kidneys are having issues. The doc said they are injured and that we need to get her outputs and intakes more balanced. This is pretty scary, but she's not at risk for dialysis, but that the kidneys are giving us warning signs that they need a little help. Hopefully I will know more later. 

6:41 pm - update

It looks like with any luck, Kit is just dehydrated. Will know more in the morning. 

Post-Op: Day 6

9:07 am - The nurse just called. The pacemaker wires are out. They are going to start breast feeding when Beth returns from signing papers at Central Baptist. The plan now is to return her to the NICU once a bed becomes available. 

Post-Op: Day 5

9:18 am - last night went great. They were able to turn off the last of her drip meds. The pacemaker wires are coming out today. The umbilical line is coming out tomorrow. She is probably going to NICU tomorrow or Tuesday so she can learn to be an infant. Her biggest problem is that she is starving. They are going start feeding her in her feeding tube today. When she gets to the NICU she will start breast feeding. 

Post-Op: Day 4

9:32 am - The breathing tube is certain coming out today as the ventilator is doing nearly no work. The pacemaker wires will probably come out tomorrow. She is looking a lot less puffy. 

5:01 pm - Tube is out. O2 is perfect. Heart rate is perfect. Respiratory rate is perfect. Temperature is perfect. Everything is perfect. They will "spiffy" her up after a bit. 

Post-Op: Day 3

5:48 am - The daily grind has really caught up with us finally and since Kits condition has done nothing but improve we are not going to rounds in person today though we will get an update from the nurse in the room. We just called to get an update and they said that they continue to wean her from the dopamine; the chest tube that drains blood and other fluids from the incision in her chest is empty so they will be coming off soon; the ventilator has been reduced from doing 20% of her breathing to 14% so she could be off that as soon as today; the diuretic is doing its job to help her pee. These are all good signs and we will call them to get another update near 8 am. I'm going to try to go back to sleep now. 

9:52 am - They really like where she is at in general. After removing the bandage and her chest tubes, the incision is hardly visible. They really want her to cone off the ventilator but want her to be a little more awake with a little less fluid. It could be as soon as tomorrow morning. As the bigger more obvious problems continue to improve, other smaller issues come into the spotlight. Her kidneys are haibg a bit of an issue but until she is weaned off of some of the other medicines it is not a full blown problem yet. 

4:47 pm - They continue to reduce her meds that are helping her pee and she is continuing to pee just fine. And her sedation meds and being lowered as well. When we came in her eyes were open!

Post-Op: Day 2

6:35 am - we are here for rounds which will start in the NICU a floor below us around 6:45. They will work their way up to us in the PICU. Kit really hasn't changed since we came and said goodnight to her. They only had to give her one bag of fluids to maintain her blood pressure which is good. The nurse said that they did repair the VSD as well yesterday. I will make  another update after rounds. The nurses put the KIT-ty that Tata got her in the bed with her last night. 

7:08 am - one of the nurses just told me that Kits procedure is Dr. Austin's keynote procedure. It's his favorite and he is really fast. What luck. 

7:28 am - Rounds were REALLY good. Since everything is going so well they are basically starting to diminish and remove all of the artificial supports to start to give her body the chance to take over again. 

9:10 am - the nurse taking care of kit right now just told us that once kit comes off the epinephrine and dopamine (I think) that we can start holding her again which could be as soon as this afternoon.

12:16 pm - just got a good call from the nurse staying with kit. They are continuing to wean her off of the various medications. But more importantly, she has opened her eyes a few times and was using one of her arms to try and swat the nurse away while she repositioned her breathing tube. She's a fighter. 

7:13 pm - Her blood pressure continues to improve and they are weaning her off of the epinephrine. They may have already done so by now. My mom and dad brought Dottie to Louisville to spend the night so they got to see Kit as well. Dottie didn't however. While I was away with Dottie and my parents, Beth gave Kit a "bath" of sorts which involved wiping her down with antibacterial wipes, and after she dried for 15 mins, putting on lotion. Beth also got to wash and comb Kit's luxurious locks, which we think may be curly. 

Post-Op

3:09 pm 7/17/13 - We have seen Kit. She is now hooked up to more machines that ever while a group of no less than five people are milling about her running tests and tweaking this that and the other constantly. She is still paralyzed from the surgery. This will wear off 15 - 18 hours at which time she could begin to open her eyes. This timeframe is critical in terms of her stats stabilizing. Right now her blood pressure (among other stats) is fluctuating but the medical staff is managing her as is to be expected after any major operation. Though Beth and I would stay by her side, we realize that we would only be in the way and we certainly need our rest. A phone call from the PICU is my worst nightmare at present. 

3:29 pm - Just spoke to another doctor. He said that Kits heart looks good and strong. Her O2 levels are 100%. Keep up the good fight Kit!

8:48 pm - we stopped by to say goodnight to Kit. Not much had changed. Her lactic acid is down which is a result of her improved O2 levels. Her blood pressure remains a little low which they are inflating with fluids. There is no set time table for when that goes from being normal to being a problem. But if after 12 hours she shows no improvement it will begin to raise some eyebrows. 

9:30 pm (non-medical update & certainly my last for the day) - Our wonderful midwife Alisha Morgan made this for your viewing pleasure:

Thanks Alisha! And another big thanks to all the support we've received from everyone in all the various forms it has taken. We couldn't do this without you. 

Into the roil - SUCCESS!

6:28 am - We are at the hospital. The nurses said she did great last night. Kit is now sleeping with her pacifier in her mouth bundled up tight. I believe she is already sedated though (edit: turns out i was wrong. No sedation yet) she wiggled around when I said hi to her. From what they told us yesterday they will come get her in the next 30 - 45 min. I will make regular updates here throughout the day. 

7:01 am - A team of nurses is here and they are unhooking the devices in order to move Kit upstairs where we will talk to the anesthesiologist and her team. Then they will take her away. 

7:14 - We are in a patient holding area on the surgery floor waiting on the team to speak with us. 

7:31 am - Kit has left for the procedure. 

7:51 am - the "room" that we will be staying is more akin a closet with no windows. This is easily the worst part of the hospital we have experienced. The regular updates will start around 9 am and should proceed about every hour. 

9:11 am - Just got our first update. The nurse said that everything has gone smoothly so far. She went under without a peep and that they have made the incision and have begun the actual procedure. She said she will be back in at most an hour and if anything major - positive or negative - changes she will let us know. So far, so good.

10:01 am - we just got another update. Kit has been in bypass for about 25 min. Everything is fine so far. Here is a picture of her in the operating room. 

10:41 am - Another update. Everything is still fine. 

11:42 am - Nurse stopped by. They have finished the aorta and are working on the pulmonary side. The coronaries are done. Everything is looking great she said. For a surgery such as this they lower the body temperature and then begin to bring it back up as they reach the end. They are already bringing her body temperature back up which means they are nearing the end. About another hour of surgery and then probably another hour of closing everything up. 

12:10 pm - She came off bypass about 11:50. The only thing left for them to do is to put in the temporary pacemaker wires and a tube to her heart. Then the doctor will make a decision about whether he will close her up or not given the amount of swelling and fluids. So far so good. 

12:57 pm - The procedure is complete. Her sternum is closed. Though we still need to talk to the doctor, it was a total success! HOORAY!

1:27 pm - Talked to the doctor. All is well. This was the first major hurdle. Tonight is the second. This is the last update I will post here. Once we know more about the post-opertation expectations I will make a new post on Kits blog. 

Kit's Birthday (Update 6 -FINAL UPDATE - 8:20 pm 7/16/13)

Kit was born this morning at ~8:43 am this morning (7/14/13). She weighed 7 lbs 15 oz and was 20 in long. However, it was immediate that something was not right. Turns out she has a couple of heart defects. You can read about them, in full confidence, here:

http://www.chop.edu/service/cardiac-center/heart-conditions/transposition-of-the-great-arteries.html

http://www.chop.edu/service/cardiac-center/heart-conditions/ventricular-septal-defect-vsd.html

They have taken her to Louisville to use a catheter in conjunction with the VSD to allow more of the oxygenated blood into the veins going to her lungs. Once this takes place the doctors will decide what to do next, but surgery is surely coming the only question is how soon. I will post more information on her condition and her prospective treatment as it develops and my time permits. 

Update 1 - 6:45 pm 

The catheter procedure went well. Kit's O2 levels have improved as has her blood pressure. So much so that they have taken her off of one of the medicines they were using to stabilize her blood pressure. While she has improved she is not yet where she needs to be for the bigger surgery. The first plans for that will be discussed early tomorrow morning. I think we will get to see her soon. 

Update 2 - 8:35 pm

We got to sit with Kit for a little. They have 24 visiting hours for parents and everyone is really nice and really helpful. She is still in a ventilator. So they are still breathing for her. But her O2 levels were at 85% which is really good. We are going to go home and try to get some rest so we can be back bright and early at 6:45 an for rounds and we can get a clearer idea of where this is all going. After everything we've heard I imagine the surgery will happen before weeks end. 

Update 3: 7:50 am 7/15/13

Got to see Kit again. She is doing well. Her hands are free and she will hold your finger. The doctors came by for rounds. It all seemed quite positive. They are going to try to take her off the ventilator soon - maybe even late today - as she is doing most of the work of breathing on her own. They want to explore her low blood pressure issue more but the Dr said, while this is a major operation, we had every reason to feel optimistic about the eventual outcome. 

Update 5 - 5:00 pm 7/15/13

Kit is now off the ventilator and breathing under her own power. She is opening her eyes and moving around even though she is sore. The surgery will either be Wednesday or Thursday morning early. It will take at least 4 to 6 hours. While rare in a general sense, KOSAIR does this procedure regularly and have a +90% success rate. They expect her to stay at the hospital for a minimum of 1 to 2 weeks afterward. All things considered, things are about as good as they can be. 

Update 5 - 12:00 pm 7/16/13

Kit has been moved to the pediatric icu rather than the neonatal icu. They tried to change her over from the larger IV used during the first procedure in favor of a smaller and more standard iv line but were unsuccessful. This is no real setback save us getting to hold her. As you can see below she has taken to sucking on a pacifier. She is surrounded by family at present. Thank you to all for your thoughts, well-wishes, and prayers. 

Update 6 - 8:20 pm 7/16/13

After Beth and I both got to hold Kit a luxuriously long time, we spoke with Dr. Austin, who will be doing the procedure tomorrow. They are already taking steps to get her read tonight. She will be taken to the 8th floor around 7:00 to 7:15 am tomorrow morning. Beth and I will stay in a private room during the operation so they can update us every hour. As such this will be the last update I will make in this particular blog post. I will put any new info in a new post tomorrow. Dr. Austin also said he puts the chance for success tomorrow at above 95% and the chance of any serious complication (such as the need for a permanent pacemaker) at less than 2% - nothing short of miraculous.