recovery update

Sorry that we have not kept up - the last few days have been busy. Christopher and I are alternating shifts so that Sophia isn't ever without one of us. She is recovering well although the last couple of days have been hard.
Thursday they closed her chest and then were able to take her off a couple of medications (her IV poles, three of them, were laden with all the various medicines she needed). They were going to close on Wed but Dr. Hanley said to wait one more day to get more fluid out of her system. On Th she finally started looking like our lanky little one again.
Friday they removed another line, this one went into her left atrium and was there to monitor the pressure. They also decreased (e.g. dopamine) or stopped (e.g. epinephrine) some of the other medications and stopped her morphine drip. Friday night was when things became more difficult, Sophia, especially for a new born is very alert. Without the heavy medication she now realizes that she, besides being in a lot of pain, has a breathing tube and so she has been trying to fight it. We are doing our best to calm her. They don't want to give her any sedatives or morphine because that will depress her respiratory system and that is what we need to stimulate to get the tube out.
Yesterday they had planned to take out the breathing tube but when they turned the ventilator down to zero she had some apnea which is common for new borns esp ones that have been sedated. So, they decided to wait another day.
This morning we had the scare that there was some air in her chest cavity. It turns out was a small bubble and they were able to remove most of it through one of her chest tubes (she has three tubes still in her chest to keep draining excess fluid from). So now we are waiting and watching to see how she does when the turn the ventilator down...hopefully there will be no problems and they can take the breathing tube out. It is really hard to watch her struggle against it. Christopher and I are amazed at Sophia's strength and resiliency plus she is still the sweetest baby. I will try and post again to say if they were able to get her breathing tube out...

first 36 hours

Sophia is recovering well. Christopher and I are taking shifts to sit with her around the clock. She is sometimes reactive and will open her eyes so we try to talk to her and hold her hand. The first night they expected her to be fairly unstable since the surgery was so major and she was on the heart-lung machine so long, but she showed them. She stabilized quickly and many of her stats (e.g. lactic acid and blood gases) have come back to normal. They were able to take her off some of the medications yesterday and also start her on a diuretic. She is very swollen so this will help remove excess fluid. Her heart is still beating on its own, has a good rhythm and conduction signals. She also has good blood flow to all her extremities showing that the arch repair went well. They were considering closing her chest this afternoon but Dr. Hanley wants to wait till tomorrow to avoid any problems compressing her heart. We will post how the chest closure goes tomorrow.

surgery went well

Dr. Hanley just finished talking to us. He said that the surgery was major but went well. They were able to do the arterial switch and patch the VSD. Fixing the coarctation in the aorta was much more difficult than anticipated and they had to put a patch in along the entire aortic arch. Besides this, they removed some sub-aortic conus muscle, removed the PDA and fixed a small hole between the atriums. Overall, everything looks good and he said Sophia has a good strong heart muscle. The next few days will be critical - she will need to stabilize and some of the swelling will have to go down. She will likely stay on a ventilator for the next week and will be kept heavily sedated the entire time.
Christopher and I can both honestly say this has been the hardest and longest day of our lives. We thank all of you who have been sending your thoughts and prayers to us. We hope to finally put a long posting about how the last few days have gone that is more detailed, in the mean times, we (or one of Kenia's sisters) will continue to post a daily update on how Sophia is recovering.

Her face is changing so quick...

Pictures, Pictures

Here are a few of pictures of Sophia from the last couple days. Enjoy!!

All is going well ...

Baby girl Krembs finally has a name!! We are pleased to introduce Sophia Luz Krembs! Sofia is doing well in the NICU. She is stable, active, and blowing bubbles to her visitors. She is eating well, and even gaining a little weight. Her surgery is scheduled for Monday, April 2nd. The surgery will last for about 8 hours and more information will be posted as that day unfolds.

Kenia and Christopher are doing well, now that they got some sleep. Kenia was released today from the hospital and both are enjoying every moment with their daughter. Kenia was able to hold Sophia yesterday for a while and will be able to continue doing that all weekend long. All three of them appreciate you well wishes and prayers.

Baby Krembs Is Here!

We are happy to announce that the baby came early this morning, March 29th, at approximately 12:52 AM! She is beautiful, with dark hair and dark grey eyes! We are also happy that she is a healthy weight and size: 6 pounds, 1 ounce, and 46 cm. (about 19 inches) long. Kenia put up a hard fight for almost 20 hours, and now we are settling into recovery rooms. The baby is currently in the NICU. More news to come! Thanks everyone for all your support and phone calls.