Shortly after creating our Caring Bridge webpage we were being contacted if there was a place that donations could be made directly to the family. We are typically not the type of people who would ever ask or even accept such offers but in Ezra's case we would be forever grateful. We by all means are not asking or pressuring anybody to feel obligated to donate. This was just set up for those who wish to support Ezra and his recovery.
Funds will be used to help support our family to say together during this time of need. Again, we have no expectations that people donate.
Any surplus funds will be donated back to the U of M NICU or CVICU to help other family's in need. We have so many family members and friends that are willing to help regardless the request and for that we are grateful maybe even blind to that blessing. But there are many here who are not in that same place, so it would be nice to give back to the community that gave us everything even if its not much.
Here is the first and most important posting from our Caring Bridge wepage that will give you more information on Ezra and his condition:
On November 30th at 1:35 Ezra Maisyn Burgess joined us in this world weighing a whopping 8 lbs 2 oz and 21 1/4" long. Ezra had a known condition of cleft lip and pallet, this labeled him a 'high risk pregnancy', with further ultrasounds no further issues were discovered. Having no other signs and meeting all growth milestones the doctors at the U of M felt comfortable delivering at the Mankato Clinic. Like any other healthy baby he craved for moms attention and didn't seem to mind when dad stepped in to give mom a break. Ezra was taken into the NICU at the Mankato Clinic shortly after delivery to be more closely monitored as the cleft lip and pallet can cause feeding issues. At first Ezra was having difficulty feeding with the lip and pallet impairment but with further trial and error we were able to get some good feedings in. Ezra also had some issues keeping his O2 stats up, when asked about potential reasons for this we were told not to worry, they didn't want to share potential issues that would cause concern. During the evenings he had struggled to maintain stats so we knew earlier on that we would likely be in the hospital for a few days longer than anticipated.
Saturday morning at 2:30 Am the the pediatrician on call woke us and informed us that Ezra had some blood tests that were not good and that he would be transported to the U of M NICU. Little did we know how bad they actually were. Upon rushing into see him the first thing we noticed was his skin color, gray and blue. We had the nursing staff and pediatrician all working on him to recover and maintain until the U of M came with the transport. Once the neonatal care unit arrived they began aggressively working on him starting iv's, pushing doses of medicine, and preparing to take one last x-ray of his lungs prior to travel. At one point the talk of blood transfusion was brought up and I think that's when we realized how critical he was. After getting directions and signing authorization forms we were off to meet Ez at the U of M.
We arrived at the U of M around 6:45 beating Ezra by about 15 minutes. We dropped our stuff in a room they had ready for us and waited eagerly to see our baby boy not knowing what to expect. when moving him from transport to his warming bed we noticed how much better he looked. It was an amazing feeling when we were able to see the improvement. At this point we still had no idea what was going on and why it was happening. We talked to the nurses tending to him and discussed what they were all working on. Ezra was started on all sorts of different medicines to cover potential causes such as infection, lack of nutrition, dehydration and several other things. We hung out with him until our team met for rounds. Around 9:00 we were briefed by our team about his current blood test results, he had acute damage to his lower organs, large amounts of lactic acid built up in his blood stream and most of his other stats looked poor.
Prior to rounds beginning they were preforming an echocardiogram to look at his heart closer, this would help check off potential reasons he crashed. When we left for rounds they were waiting on cardiology to review and see if anymore photos needed to be taken. Once rounds were over we headed back to bedside and see if cardiology had found anything. Right away when walking in we saw a crowed around Ezra. When getting closer we noticed the amount of photos, before leaving for rounds they had taken 80-ish and were now over 190, this was a red flag but alone didn't prepare us for the news we were about to receive.
Our poor baby was much sicker than I would venture to guess, anybody previously thought. He was diagnosed with a vary rare heart defect, a Aortopulmonary Window or APW (AP Window) for short and a Interrupted Aortic Arch. We didn't understand what the heck the doc was saying other than its very bad and will need surgery to fix the complex issue. Basically our brains shut off and all we could do was look at Ezra with an udder sense of disbelief and the feeling of complete helplessness. As you can guess the news was absolutely devastating. Not even 48 hours ago we had a happy health baby and now he was barley hanging on. We made it back to our room before completely breaking down. This was the hardest thing that we have ever experienced and it was absolutely soul crushing.
Here is a little information on what those mean (I will copy and past a lot of this information as its quite complex:
Aortopulmonary Window (AP Window)- AP Window is a rare congenital heart defect in which there is a connection (window) between the aorta and the main pulmonary artery. This opening allows oxygenated blood to pass, or shunt, from the aorta into the pulmonary artery at high pressure.
Now what dose this mean for Ezra?
It means that during the formation of aorta and artery there was a fusion (window or hole if you will) where the two intersect. This is incredibly rare but in itself is not enough to cause him to stay in the hospital. Typically when this type of defect is found, the baby's would be sent home on a series of medications that would keep them well till they could plan a surgery. Of course buying time for them to grow a bit more and gain strength would be preferable to operating on such a susceptible individual.
What are some of the common effects?
Varying on the size of the window, it can cause excessive flow to the lungs causing high blood pressure, enlargement of the left ventricle and or heart failure from continuous heart murmurs, cyanosis (blueness caused from oxygen poor arterial blood) across the whole body, pulmonary hypertension as well as other various issues.
More inforamtions about the AP Window as well as photos to help visualize the defect can be found here:
Interruption in Aortic Arch- for this, I highly encourage you all to follow this link and watch the 2 minute video that will help to explain the defect. It also explains the different types and what typically goes with it :
Trying to help understand Ezra's case
This is the reason he crashed and is whats preventing us from leaving. When a baby is in the womb, they don't require the lungs to function and transport newly oxygenated blood, they depend on the umbilical cord to provide that. So in week 4-7 the heart is develepoed and form an additional 'bypass valve' known as the Ductus Ateriosus or as we have been refuting to it the Ductus. This valve bypasse's part of the aortic arch to supply blood to the lower half of the body. When in the womb, the baby relies solely on this to transport oxygenated blood. Shortly after birth, typically days to weeks after, the ductus closes and the aortic arch take full capacity of the blood flow distributing it throughout the body. In Ezra's case the interruption of the aortic arch did not allow flow to the lower portion of his body, so when the ductus began to close he had little to no blood flow from his chest down. The result of this was acute organ failure resulting in acute organ damage. Shortly after he started to crash they started an IV with APE, this causes the ductus to re-dilate (reopen) and resume blood flow to his lower body. Without this medication being administered he would have gone into complete organ failure and passed. It's a good thing mom did her best and gave Ezra a good fighting chance being as big as he is.
The rest of the day was full of resting and stabilizing Ezra while trying to learn as much about his condition as possible. One of the things that the cardiologist had mentioned was a syndrome that typically causes this type of birth defect that also commonly forms cleft lip and pallet, its commonly referred to as DIGeorge Syndrome or 22q11.2 deletion syndrome. After a few hours, the blood testes started to show improvements and he was making slow but steady progress. When first arriving his Lactic acid level was 16+, the typical level is around .05-1.5. They did a blood transfusion to help boost the red platelet levels, hemoglobin level, help even out the PH and help to dissipate the amount of lactic acid in his blood. The transfusion is not one you would typically think, they didn't take any blood out of him as they were pulling blood every 2-4 hours for progress tests.
Everyday we will be posting updates for those wishing to track his progress and well being: