Hunters Journey Update 4/3/2020 and Covid Update

So with all of this Covid craziness going on, I am sure some people are wondering how things are going. I am first going to give an update as to how our little guy is doing, then go into some of the challenges that we are starting to face with the disease hitting and potentially giving birth during a pandemic.

Hunter had a good week! On Monday, March 30^th, 2020 we received a phone call letting us know that the full amnio results finally came in. I have been waiting for this call for over a week! The week prior, Children’s Hospital scheduled us to meet with a genetics specialist at their facility. Due to this I knew the results had most likely came in and were not good, potentially saying that he had DiGeorge Syndrome. On Monday when I finally received the call, everything was normal! They could not find any reason for his Tetralogy, but are very hopeful now that once he overcomes the Tetralogy he will thrive! Children’s preemptively assumed that the test would come back as possible and schedule the appointment with the specialist.

On Friday, April 3^rd, we had several appointments. Our first was a standard ultrasound to check his growth and make sure that the rest of him looked like it was still developing correctly, and then a follow up Echocardiogram so Children’s Hospital can keep planning on how they are going to handle everything when he is born.

At our first appointment, during the ultrasound, everything looked great! He has his dad’s head which Travis is very proud of, but I am kind of dreading. Overall Hunter weighs 2 pounds 3 ounces and is in the 19^th percentile. His head I think is half of his entire weight and they said his head size is in the 50^th percentile. Anyone who knows Travis, knows he has a huge head. We have issues finding hats that fit him, so his baby boy defiantly takes after him! The doctors are very happy with his weight and development. For those wondering, they did reassure me that in Colorado due to our altitude, we typically see smaller babies, so even though the 19^th percent seems smaller, they feel this is completely normal and are very happy with his size. They think he will be around 6 pounds when he is born.

Our Echocardiogram was next. We had been praying and praying that we would get some good news at this appointment. During the echo, our little guy was being his usually self and not wanting to cooperate. The tech stopped once and gave me some juice and had me walk around to try to get him into a better position, but he decided he really didn’t want to move much for this appointment. They were still able to get most of the images they needed to see how his heart is developing. After the test we meet with the cardiologist again to go over the results. The first thing she did say was he is a miracle baby in her opinion. Based on everything they were seeing, they were all positive that he would test positive for either Down Syndrome or for DiGeorge Syndrome. She honestly couldn’t believe the results but were very happy for us. She went on to say that the Tetralogy of Fallot is still there and hasn’t really changed which is good. She did say that it is a pretty “textbook” case of Tetralogy and doesn’t present any issues that they have not dealt with before. One thing that we took as good news and will keep praying is that he still has forward flow on his own. As long as this forward flow continues, he will only have to have one surgery at a few months after he is born, instead of two surgeries, one right after birth, and the one a few months down the line. She did say that the forward flow appears to be decreasing, so the possibility of the two surgeries is not off the table, but it could have also been his position during the echocardiogram making it appear less than it was 4 weeks ago.

She went over our plan over the course of the next few months as well. We will return in 4 weeks for another Echocardiogram, as well as planning with their Labor and Delivery team, meet with the surgeons that will be preforming Hunters operations, and several other appointments. She did mention that unless he decides on his own to come early, they will be inducing him on June 23^rd! They are still asking for us to relocating around June 9^th. Ultimately depending on if he has to have the surgery after birth will determine how long we are there this round. If he doesn’t have to have surgery, we will be able to leave the hospital within a few days and return home and wait for his big open heart surgery, making our stay round 3 weeks total. If he does have to have surgery, they believe he will be in the hospital for around 3 weeks making our total say 5 to 6 weeks. The second big open heart surgery they are still planning on us being there for about a month total.  

Now I will get into some of the issues we are running into with having a pregnancy during this pandemic. I am fortunate and able to continue working from home. Travis works in oil and gas and with the oil industry going though hardships, he has been stressed how that will affect his job. The medical bills keep pouring in from all the different tests, and I know we have it fortunate right now since we are both still bringing in a paycheck, but it feels like we are unable to save money for the coming months when I will not receive a full paycheck and if things continue the way they are, we are uncertain how long Travis will also have a job.

Covid has defiantly made this pregnancy more challenging. Where Hunter is very high risk, I am unable to completely stay at home and keep myself from exposure. These tests can only be done in a hospital or doctor’s office, so I have no choice but to possibly expose myself. Most offices and hospitals are taking every precaution necessary to ensure that anyone that is healthy that has to come in will remain safe, but I won’t lie, I was worried at every appointment last week. They are also changing visitor policies which means that my support system during this is being restricted. My husband wasn’t able to come with me into the first ultrasound so was unable to see his little boy. At Children’s my husband was allowed, however he is the only guest that is allowed. Children’s Hospital did let us know that unfortunately as of right now, when Hunter is born, Travis will be the only one allowed to visit and be there, our families will not be able to see him until he gets out of the hospital.

All normalcy of a first pregnancy has also been called off due to Covid from a baby shower, to even being able to go to the store and buy items that we will need for him. All items are higher priced and in higher demand. I haven’t seen a single item on sale since this all started, not what we were hoping for knowing that we will have crazy medical bills in just a few months. I was hoping just to have one or two normal joyful experiences that most women get in their first pregnancy, and due to this virus, it seems like even those things will not be able to happen.

We have had some many people tell us to look into staying at the Ronald McDonald house while we are having to stay in Denver, however due to Covid, they are not accepting any new families leaving us to potentially have to pay for a hotel or air b&b to follow what the hospital is asking us to do, not sure if we can feasibly do this so any prayers to make things fall in place and financially feasible are greatly appreciated.

Ultimately going through the issues Hunter has is hard enough on families, but then throwing in all of these issues and limitations with Covid, and it is one of the most stressful situations that we have had to go through and I am praying every day that it will all work out, even though I currently have no idea how it will.

We are kind of in a waiting game now until our next appointment May 8^th. Hopefully by May this Covid craziness will be coming to an end and things will start going back to normal making some of these stress items we are trying to plan for easier and more manageable. Anyone else going through a similar situation, my heart is with you!