our Miracle baby

I have been meaning to start a blog for a LONG time. A blog about The Thalman's life and more specifically our little man Jackson and all the trials he has been through. I know a lot of people are curious about Jackson and why he has all these little conditions and what exactly they all are. Don't be afraid to ask. We are pretty open to talking about any of it.

June 13, 2012 changed our life. We were blessed with a little baby boy named Jackson. After having a great and relatively easy pregnancy, I was so excited to have a healthy baby boy I could finally hold. We had no family history of anything and nothing had shown up on the ultrasounds that would make us think any different. In fact we had no idea anything was wrong with our little man until the morning after he was born.

I was having a hard time feeding Jackson the next morning and asked the nurse for help. The silly boy kept falling asleep while I would try to feed him. The nurse came over and got him latched on and told us to tickle his feet to keep him awake and it actually worked! So Scott sat beside me, tickling his feet while he ate. That is when Scott noticed his feet were blueish purple. I didn't think much of it because I had seen plenty of babies' feet or hands be blueish from lack of blood flow or being cold. They were out in the open so he must have been cold! Just then, in popped the pediatrician to give him his first check up. We decided we would just ask him real quick to see what he thought. While he was checking him out, he noticed a couple of things...

1. Hypospadias, an incomplete foreskin, and a chordae (will blog about this later)

2. Jackson was blueish purple from his diaphragm down. Not ok.

He took Jackson into the nursery to look at his pulse/oxygen levels which differed from his hands and feet (usually high 90's in both. His hands were high 90's, and his feet were low 80's). There wasn't a huge difference so there wasn't too much concern yet. They sent for an echocardiogram and thought Jackson had a coarction (narrowing of the aortic arch) so they sent his echo down to Children's hospital in Denver for their cardiologist to look at it. They decided that it would be best to send a team up to get him. Not a good thing for a mom who is 10 hours post birth to hear.
While the team was in Loveland (where Jackson was born) getting him ready to bring down to Denver, they noticed another special thing about our boy

3. Single Umbilical Artery (SUA)

affects 1 in 100 to 1 in 500 pregnancies. SUA does increase the risk of the baby having heart, skeletal, intestinal or kidney problems. Babies with SUA may have a higher likelihood of having other congenital abnormalities, especially of the heart.

Luckily, I was discharged from the hospital so I could go down to Denver with our little boy (12 hours post giving birth.... that wasn't a very comfortable car ride!)

We finally got down to Denver and met with the pediatric cardiologist who told us the news.

The short answer: his heart plumbing was messed up
The long answer: Jackson was born with an Interrupted aortic arch and an Aortopulmonary window with a patent ductus arteriosus and would need open heart surgery right away.

4. Interrupted aortic arch (IAA) is a

very rare heart defect in which the aorta is not completely developed. There is a gap between the ascending and descending thoracic aorta. Occurs in 3 per million births.

HERE is a good picture of an Interrupted Arch


5. Aortopulmonary window (APW) is a

rare heart defect in which there is a hole connecting the major artery taking blood from the heart to the body (the aorta) and the one taking blood from the heart to the lungs (pulmonary artery). Occurs in 0.1 % - 0.2 % of IAA

6. (Patent) Ductus Arteriosus (PDA) is a

blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth.

PDA leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.

3 heart defects all working TOGETHER to keep our little boy alive. What a blessing.

With just an IAA no oxygenated blood would be able get to anything below his heart. Because of the APW and the PDA, some oxygenated blood was able to sneak through the hole to get to his lower body.

Usually, an IAA is associated with DiGeorge's Syndrome:

DiGeorge syndrome (22q11.2 deletion syndrome), a disorder caused by a defect in chromosome 22, results in the poor development of several body systems.

Medical problems commonly associated with DiGeorge syndrome include heart defects, poor immune system function, a cleft palate, complications related to low levels of calcium in the blood and behavioral disorders.

I won't get more into that because he doesn't have it. Jackson had 2 genetic tests done and both came back NEGATIVE for ANYTHING genetic anomalies with him. The only reason why I bring it up because we had a horrible experience with this cardiologist. She was SURE Jackson had it even though his calcium levels were fine, he didn't have cleft palate, he had a thymus, his kidney's were where they were supposed to be etc. She even went as far to tell my sister in law (who was pregnant at the time) to get another ultrasound and that her baby would most likely have it.... moving on. I'm getting fired up about this.So you may be asking yourself, if there is nothing genetically "wrong" with him, why does he have all these little conditions?  We wonder that too.  You may notice they all have something in common.  They are all on the midline of the body; head, heart, boy parts.  ALL these things form at the same time during development (about 5 weeks about the time I found out I was pregnant) so something during that time "went wrong" causing these small things to happen.

When the cardiovascular surgeon (LOVED him) came and told us what would happen Scott and I took a minute to ourselves and just cried it out. We had about 15 minutes of time to grieve. We didn't know what was going to happen to our little boy. We hadn't held him enough and we hadn't even seen what color his eyes were!

The next day right before surgery. He opened his eyes and just stared at me for a good 15 min. It was magical! Here he is puffy from the fluids they were giving him to keep him hydrated

Once we cried it out we had to make the tough, but only, choice we had, let them do the surgery. Jackson's surgery took 5 hours and was successful! I look back and think, I should've been more upset, more scared, more worried. But then I think, 1. I was probably in shock 2. I was surrounded by loving family and my amazing husband 3. We didn't have time to be that way. 4. The dear Lord was holding us. He was holding us tight and watching over us. He knew Jackson would be fine and in my heart I knew he would be fine too. But it felt so good to hear it come out of Dr. Jagger's mouth that everything was fine.

I'm so thankful for parents and family that have taught me to lean on the Lord in times likes these. I could have easily been dark and gloomy, depressed, locked myself in a room. But I didn't have time for that, Jackson didn't have time for that. He needed me to be there. He knew me and knew when I was near. His heart rate would increase a little when I would start talking. He would move his head toward me when I would walk in the room. Even if he hadn't really seen me, he knew his Mama. What an inspiration this little boy has been to us and those around him. Such an important purpose he must have in this life to be go through this and the things to come.

Jackson had no complications and got better day by day. Unfortunately, As a result from the surgery, Jackson has had 2 other health issues added to the list

7. Paralyzed vocal chord

One of the vocal chord nerves wraps around the aortic arch and in heart repairs like his, there is a chance that it can be stunned or paralyzed. Initially, they just thought it was stunned. Further doctor's appointments have shown otherwise. However, the other one is making up for it and you shouldn't be able to tell at all. He had no issues with feeding or gaining weight which is the biggest concern.

8. Right pulmonary artery stenosis (Over-scarring of the repair has led to a narrowing of his artery. Will blog later about this)

One more special thing about our boy that we noticed when he was born but got worse as he got older

9. Metopic Craniosynostosis (ridge down the front of his forehead. Will blog later)

Having to deal with this has had its hard times. Every time we found something new that he would have to deal with, our hearts would just ache. Ache for him. Not knowing how these things would change his life or put limits on him. Now we know (at least for now) that he shouldn't have any limits physically or mentally. He should be just a regular boy. Super CUTE boy I might add! Just some scars to show how tough he is!

This boy has been so blessed already. He has received countless thoughts and prayers around the country and has so much love surrounding him it makes our hearts full! I have no doubt that he has countless amounts of angels watching over him and the doctors that have and will take care of him. I'm pretty sure most of those angels would have to be the nurses and staff at Denver Children's hospital.  Round the clock checking, giving us meal cards, a room to sleep in, and ANYTHING we needed. Also, getting us out of there 5 days after having open heart surgery! If and when Scott is a rich doctor, many donations will be made there!

I can't even imagine what Heavenly Father has in store for him. So much to go through in such a short amount of time and such a little guy. Heavenly Father has big plans for him and I am so excited to see what those are!