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One Step Forward, Two Steps Back...

Updated: Nov 18, 2019

The past week Noah has made such great progress, we are in such awe with how strong he is. Each day we seemed to have made another goal, removing more wires, and getting to do more with our boy. The recovery process has been pretty smooth thus far. hThere were two blood clots found, one in the right leg and one in the upper extremity, which means Noah has started to get two lovenox shots a day. These burn really bad, and it breaks our heart when he has to get them.

It's too early in the AM for this!

Once Noah got extubated, we were able to wean him off of the pain meds. Due to this, Noah's heart rate was sitting in the 180s while sleeping, and over the 200s when he was getting poked and prodded, which in the ICU is very often. It took a couple days and some weaning due to withdrawals but he is now on no pain meds! Since he was extubated Monday, the following things were removed:

Central Line: A central line is an IV line that goes into a large blood vessel and typically goes all the way up to the center of the body in a baby. This IV line typically can have multiple medications hooked up to it at once. Central lines are used for giving medications, fluids, IV nutrition and drawing blood.

Nose Cannula: This is used for oxygen- and they are a pain in the A**. They are constantly falling out of his nose, and he just isn't a fan. So we were so happy Noah was ready to be a "room air" baby again!

2nd Arterial Line: This was the second art line her had and it is a cath that was inserted in to his left leg that went up to an artery. They can also draw blood from this and get samples of blood gas, and gives direct blood pressure and heart rate.

Dialysis: he was on kidney dialysis after surgery to help his kidneys and with post operative fluid output.

Pacing Wires: These were used once when Noah was having rhythm issues after surgery, which is common. But they are placed inside body and were taped on his tummy for "in case we need them" situations. It was much better to have them there if needed then to have to place them in an emergency situation.

This was a huge week for baby Noah, and for us! We got to hold him more, bathe hm, change his diapers, you know, the normal baby stuff, oh and he got to wear his first outfit!

He currently still has his chest tube which is a tube in is chest that collects all the fluid from his chest, this has been in since surgery. A NG Tube was also placed through his nose which runs down to him tummy, and this is how he started feeding (with my breast milk).

Noah got upgraded to a "California King" bed which has lots more room to stretch out in comparison to the little warmer bed. And we got a mama-roo in the hospital room that Noah is in love with!

With all the exciting things happening on the road to recovery, there were even some talks about us possibly getting out of the ICU later this week! Noah's body told us he wasn't ready.

Every day Occupation Therapy makes a visit to practice feeds and Noah had improved so much. He finally started taking his paci again, and by the next day he had taken down 12MLs from the bottle.

The next day, Friday, that Noah has chylous effusion. This is when the lymphatic system or flow has damage after trauma or in Noah's case, a very long open heart surgery.

This is a great definition of what Chylous is from NCBI.

"Chylothorax is a frequent and serious complication associated with congenital heart surgery, which occurs with an incidence between 0.5% to 6.5%. It may be caused either by injury of the thoracic duct, increased pressure in the systemic veins exceeding that in the thoracic duct, or a central vein thrombosis. The diagnosis is based on the milky or opalescent appearance of the fluid from the pleural spaces with high levels of triglycerides, proteins, and lymphocytes. These large losses of nutrients and immune cells put patients at risk of malnutrition, impair their immune system and may also lead to respiratory problems with the need of a pleural drain. "

This was found when the drainage from the chest tube was consisting of a milky substance. Immediately, we would need to have Noah on a low fat diet until this improved. This meant that his new feeding was half formula (no fat) and half my breast milk, skimmed. We tried this for two days and no improvement happened.

Saturday a new medication was started to help the fluid output of his chest, usually, this works pretty fast but in the next 24 hours there was an increase in the fluid output instead of a decrease. So now we are NPO (no feeds) for at least 7 days. Noah has been very hangry and it's the most difficult thing to watch him cry and root, looking for food, knowing I can't give him anything. Now his chest tube remains in and he will be going to get a cath on Wednesday, which he will be under anesthesia for, to confirm what is going on in his little body. He will also be getting another central line placed, as this is the best way to give TPN (the nutrition that he gets via IV while no feeding). Unfortunately, this doesn't cut the hunger so it'll be a long week trying to comfort Noahs hunger pains with sucrose and pacis.

This has been frustrating and felt like a huge step back.

We were told by so many HLHS parents, this is how the journey goes, it's a rollercoaster, there will be ups and then downs, but nothing can fully prepare you for what this journey entails. It's been hard for me to look at this perfect little boy, and not fear for the future. I stare at his screen, becoming obsessed with having it there and wondering if I will ever be okay when we go home, with not knowing his heart rate, pressures, and respiratory rates.. how will I know he's okay? But then I remind myself of something a lovely heart mom told me, we chose to give these babies a chance at life, but what's the point if we won't let them actually live it? I never knew how much I could love something until he came into our lives. I'm sure I will struggle with this when Noah wants to go be a boy and run around outside, but we have to let him.

3 weeks old!

We are trying our best to keep everyone updated, but it's emotionally draining talking about things we do not even fully understand ourselves so we hope our friends and family understand our silence at times.


Please keep Noah in your thoughts today and for this chylous to improve with no surgical intervention needed, and for us to be able to give this baby some food!
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Michael Spinler
Michael Spinler
Aug 26, 2019

We have been thinking about you guys and how you all were doing when I recalled seeing a blog post on Brandon FB feed. Just want to let you 3 to know positivity and prayers from Samantha and I. A very beautiful boy you both have created!


Aug 22, 2019

Our prayers continue on a daily basis and know that our Lord Jesus has His Hand on little Noah. Remember that God always makes the way and nothing is too difficult for Him. Continue in your faith and thank Him for His wonderful gift.

Ron & Maria


Patricia Anderson
Patricia Anderson
Aug 21, 2019

Prayers for him in Jesus mighty name Amen. Prayers for you and your husband to have faith and trust in the Lord for your strength and your joy. We have an amazing God.

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