Cuddling with my boy .. “kangarooing” they call it.. just lying skin to skin .. him tucked into my shirt. I can feel his little chest rise and fall faster than it should.. but the more we lay together the slower it gets. He is more relaxed when I am with him. I wish I could stay here forever. Its just us.. the nurse closed the curtain and the lights so we could have this time.. I missed him. I’m playing the NICU playlist I made at the advice of other moms from the hundreds of other pages on nicu advice I’ve read. The songs make me cry but bring comfort too.
Our doctor just left the room. We had some changes these past few days. Maurice has not progressed as quickly as we hoped. They have given his condition a name and treatment. We use words like chronic lung disease and no real “cure.” It’s terrifying but given what he has gone through .. how many doctors told me he would never get to this point.. the fact that he wasn’t even meant to be born yet.. or how he survived after full kidney and heart failure during his first week of life.. we are just so lucky he is here and has been so strong.
He is struggling to control his respiratory rate. He is intermittently tachypnic. It basically means he breathes very fast at times. He also is not able to “nipple” all of his food and still requires most of it to be given through the feeding tube. The two are closely related because if he is not able to catch his breath he can’t suck on a bottle. He can aspirate if his respiratory rate is too high. Over the past few weeks his blood pressure has also become problematic. It is too high. We checked everything .. his heart function including the structure and function.. the pressures inside of his heart.. multiple chest X-rays looking at his lungs.. countless blood tests for infections .. his last blood transfusion didn’t seem to help much either. He is being followed by cardiology as well as pulmonary.
He has been diagnosed with bronchopulmonary dysplasia or BPD. It is also known as chronic lung disease. Babies are not born with this. It develops when premature babies born with respiratory distress syndrome need help to breathe for an extended period of time. The forced pressure can cause scaring and inflammation. The inflammation causes excess fluid to build up. The increase in fluid changes the compliance in the lungs making it harder for them to “squeeze” the air out. Babies born at less than 1000 grams are at risk the most. Maurice was born at 780 grams. Respiratory distress syndrome is a very common problem in preemies and almost half of the babies born this small will developed it. It is called BPD when they continue to require oxygen and show signs of respiratory problems after 28 days of age or 36 weeks post conceptional age. Maurice is now 39 weeks and he is still having difficulty controlling his respiratory rate and keeping up his oxygen levels on his own.
BPD is one of the problems that come with with being a preemie. It happens to about 40% of extremely low birth weight preemies. People will always ask me if it is just a “regular preemie thing” and as far as RDS and BPD it typically is. But Maurice also has a number of other issues because of twin to twin transfusion syndrome. It is not only the “regular preemie things.”
There are other factors that contribute to the disruption of lung development .. particularly alveolar growth. Having growth restriction and a lack of nutrition can cause it. He had selective interuterine growth restriction or SIUGR which in itself is a two fold risk of developing BPD. He was also the donor twin giving all the nutrition to his brother through connecting vessels in the placenta. His umbilical cord also only had 2 vessels ( it should have 3 ) and was hanging off the placenta ..he wasn’t getting all the nutrients he needed.
My son also has lung disease secondary to having no fluid in utero. Pulmonary hypoplasia is a condition that develops in babies who have severe oligohydramnios ( low amniotic fluid). This condition affects donor babies in twin to twin transfusion syndrome. While in utero connecting blood vessels causes the donor twin to give all the blood and fluid to the recipient. In doing this the kidneys become so stressed that they are not able to work and no longer produce urine ( which makes up the majority of amniotic fluid.). The decreased fluid causes the pressures inside to be much less than normal. These babies also have increased spinal flexion causing compression of the abdominal contents .. elevation of the diaphragm and lung compression. Everything is squished together and the lungs cannot expand like they should. They can’t grow properly.
Basically his lungs didn’t develop properly because of twin to twin transfusion.. he had no fluid and was squished.. there was so space for them to grow.. also he didn’t get the nutrition he needed because he was giving everything to his brother. This led to pulmonary hypoplasia (hypoplasia is poor growth ). Add to it the scarring and inflammation from all the pressure and mechanical ventilation pushing oxygen into his tiny sensitive lungs … The cells grow abnormally and he developed bronchopulmonary dysplasia. ( dysplasia is abnormal growth)
So what does all this mean.. you have a tiny baby who breathes at a rate of about double what he should.. just trying to push air through weak damaged aveoli. His lungs have poor compliance or elasticity. The chronic inflammation leads to excess fluid build up making it even harder. The doctor explained it to me like having a sponge .. it’s much harder to squeeze out a sponge soaked with water. It is easier to squeeze it when it has only a little dampness to it.’ Right now the inflammatory process is making his lungs like a heavily soaked sponge.
We will try to fix it with diuretics. Diuretics help the body get rid of excess fluid. He is on medication now three times a day.. spironolactone and hydrochlorothiazide. Studies show it helps to improve lung function in babies with chronic lung disease. I didn’t understand why we needed a continuous regime and couldn’t just give a single dose of lasix but after the doctor explained the disease process and the issue of inflammation it makes sense. This condition is chronic and a single dose of lasix although would likely help for a few hours will do nothing long term. I’m still concerned about his blood pressure and by decreasing the volume it should get better. It will take about 72 hours to see the full effect of the medication. He will likely be on this for some time. We are also anticipating he will need to go home on oxygen. I’m praying the medications make him more comfortable so he is able to eat and doesn’t need to go home a feeding tube too.
In addition to some pulmonary issues he has an inguinal hernia but the surgeon and his team saw him today and said they didn’t think it requires surgery right now. Thank god.
It is almost time to feed him again.. he has had 2 full bottles in 24 hours which is a huge improvement. I don’t want to push him because his blood pressure is still High. He will get better hopefully with these medications and good nutrition. Everyone always stressed that growing is the main thing that will help him. He is 2550 grams today and has made such incredible progress.
Today I realized something… there really is no “fixing” this.. we are past the point where a dose of a miracle pill will make him all better.. there is no single thing that will cure this. It’s chronic meaning it will always be there. We can help it but not make it go away. I hope one day stem cells will be the cure. Hopefully by the time you read this my Maurice there will be more.. but for now.. we just try to give you support. I write these posts in detail to try to explain what is going on to my family and friends. It is also helps me understand it myself. I hope if there is a mom going through something similar it can help her understand. It’s so hard to navigate through all the medicine when you are heartbroken and scared. His lung disease will never be cured. He will have some element of asthma and we don’t know for sure how long he will require oxygen.
But he is perfect. He is as perfect as perfect could ever be. You will be able to do it all my love .. this will never define you.. any of this.. you are so strong .. you are so brave and you will overcome it all as you have since day one. You inspire me … you make me better .. and I love you .