Honeymoon

Shirley is doing very well so far and we are very thankful for this time to rest and be close to our daughter! The nurses call it the "honeymoon" because post surgery everything gets more intense. We have been able to hold Shirley for hours and hours the past two days and although she is all wired up it is still an amazing experience. Once Shirley is out of surgery we won't be able to hold her for a few days (3-5). The chest won't be closed until they are confident that fluids won't build up around the heart. This requires drainage tubes to be placed allowing these fluids to runoff freely. The "honeymoon" will be over. It is, however, a very real step towards recovery and being discharged! 

Shirley has needed little intervention in her first few days of life but that will change very soon. She is still not able to digest anything and is being given liquid nutrients directly into her blood. Throughout our stay they have been monitoring her respiration rate as a sign to identify distress or just being over-worked. This is because the pressure chang in her lungs after birth. While in the womb Shirley's lung pressure was high and blood flow minimal because the lungs don't have a role in oxygenating the body. Once she is born, however, the pressure drops and blood begins to fill the lungs as they work to feed the heart, fresh, oxygenated blood. Because of Shirley's heart anatomy the lungs can be stressed due to having increased blood flow beyond the normal ranges. The lungs provide an easy, low pressure, environment for blood to flow relative to the higher pressure environment of the body. Recall Shirley has one major trunk that's doing the job of both the aorta and pulmonary vessels that would provide blood to the body and the lungs respectively. All that to say her respiration rate has increased significantly and may begin to stress the heart. In order to mitigate that they are going to start Lasix. This is not a great concern and something that almost every child with truncus deals with because the nature of the deformation.This drug will also help to ensure adequate oxygenated blood is getting to other vital organs such as the kidneys.

Brianna is recovering very well and ditched the wheelchair today and has walked, albeit rather slowly, all over the hospital. Three hours in the OR post birth will do that! She is so tough and doesn't feel the need to take the oxycodone they prescribed for pain management. Recovering whilst dealing with the inevitable stress of hospital life is difficult but Brianna doesn't seem to be fazed!

Some people have asked about providing meals for us but it can be difficult to get up to Seattle just to drop off a meal. During this time before surgery we are keeping visitors at arms length in order to make sure Shirley is as healthy as possible going into surgery. That being said, there is a way to purchase "nutrition gift cards" for use at the cafeteria. It's kind of a strange process but you can call a number to purchase gift cards on our behalf.  Wish I could provide more information. Here it is: 206-987-2094

Ok, ok, here are some more pictures.

-Joseph

She is here!!!

Shirley arrived on her due date (2/23/17) at 7:29 in the evening! 7.5lbs and 18.5 inches long! We love her. She is at SCH in the cardiac intensive care unit (CICU) and doing splendidly. She is beautiful! Photos at the bottom if you want to skip to the good part!  ;)

Immediately after she was born she was whisked away for an initial assessment. Brianna and Shirley were able to snuggle for only a couple minutes before she went to the NICU. I was able to accompany her to the NICU where she was monitored and had an IV placed in preparation for transport to SCH. After being poked and prodded, Shirley was taken back to see Brianna for a few kisses before she was transported. I was able to accompany her in the ambulance to SCH. Upon arrival they order her first echocardiogram and confirmed here truncus arteriosus diagnoses.

Shirley had a relatively uneventful first night in the CICU. I was able to spend the entire day with little Shirley among a myriad of tests. The little girl is hooked up to all kinds of monitors and holding her can be a feel like you're on a leash but it was an amazing experience. The staff at SCH that we have met to-date are amazing and we feel very well cared for. Shirley is doing well but faces some challenges currently. Due to her specific condition and anatomy Shirley isn't able to have any food pass through her stomach until after surgery. The easiest way to explain why she can't feed is because her digestive system has poor blood flow.

Due to some issues that arose after the birth Brianna had to be monitored at UW and was finally able to join us at SCH nearly 24 hours later. She was able to spend some real quality skin-to-skin time with Shirley promptly upon arrival. On Tuesday they plan to have a very large conference discussing Shirley's surgical plan. Please keep our little girl  in your prayers. There is so much more to say but I think that's enough for now!

-Joseph

The following photos are chronological. More to come!

This is where we will be posting all the updates on Shirley's condition.

Hello,

     Thank you for taking interest in our daughter's life! We appreciate your support and prayers. We created this site and blog in order to keep you informed. Many people asked us for personal updates and we hope that you understand that we cannot update everyone individually. Instead we are utilizing this tool as a means to keep you in the loop.

     It will be any day now, Shirley will soon be on the scene. Brianna's due date is the 23rd of February 2017 and if Shirley attempts to arrive late to the party Brianna will be induced on the 26th of February. We are very excited to meet our little girl and begin this wonderful adventure.

     We would like to thank you again for your prayers and support. Brianna and I have felt very comforted by the amount of love poured out on us and it has gone a long way in settling our nerves about the future. So, thank you.

Joseph