Breath In and Out

From the moment we found out Matteo was going to be born early, we knew he was going to be spending some time in the hospital. Just how much time was impossible to tell. If everything was OK with him health wise, he would need to spend time growing and learning how to feed before heading home. If he had any issues they of course would need to be solved first.

The last thing to develop in a baby is their lungs. Because of this I was given 5 steroid shots while in the hospital to help Matteo’s lungs develop quicker. It was basically implied that if you get these shots, your baby is pretty much good to go, so I never worried about it, especially since I was given 5 shots and mothers normally only get 2.

Once he was born, Matteo was on CPAP for 3 hours to help open up his airways. After that, he was on no breathing support and was doing great.

A few days later, while visiting him in the NICU at Surrey Memorial, his nurse informed me that through a series of events they had discovered Matteo had an infection in his lungs. This news scared the living daylights out of us. The doctor, however, reassured us that it was common for babies to contract infections if their mothers had ruptured their membranes early and that they were already treating him with a course of antibiotics to resolve the issue. At that point Matteo did not need any breathing support.

As the days went on Matteo’s oxygen saturation levels began to drop and he was placed on oxygen to help him out. Everything else with Matteo was progressing well and we were told he would eventually grow out of his need for oxygen.

Since Surrey Memorial was not our local hospital and since Matteo no longer needed the specialized care that Surrey Memorial provides, after 17 days there he was transferred to Burnaby General to continue growing. Royal Columbian was still closed because of the RSV outbreak so Burnaby was our closest option.

Our time in Burnaby was an interesting one. We were obviously new to the whole NICU experience but I could instantly tell there was a huge difference between Surrey and Burnaby. Had Matteo really just needed to grow, Burnaby General would have served us well, but since it was only a level 1 NICU (Surrey and Women’s are level 3 NICUs) they were not prepared for the inevitable needs Matteo had.

We spent Christmas and New Years in Burnaby with no signs of Matteo coming home. He was progressing beautiful with his feeding, able to switch easily from breast to bottle, but he was just not able to ween himself off of oxygen. Every day I would ask his doctor what the plan was and every day he would shrug his shoulders and say “he just needs time”.

Side note to this whole story, I am not good when it comes to confrontations. I avoid them at all costs. I also just blindly trust all doctors, because well, they are doctors and they know best, so I rarely question anything they have to say. Its this whole, “You’re an adult and I’m 12 years old” complex that I have. Therefore, when Dr. “Burnaby” said “Boh, I have no idea whats going on with your kid” I just sat there and said “OK”.

It wasn’t until Dr. “Burnaby” was away and his replacement saw Matteo that he started to question why he was still in the hospital and still on oxygen. It was this doctor who actually forwarded Matteo’s information to BC Women’s & Children’s Hospital and had him transferred there for more investigations.

Part of me was really worried that if we were being sent to the NICU at Womens then it must mean that something was seriously wrong with Matteo. But the other part of me knew what an amazing facility Women’s & Children’s was so I half expected them to cure Matteo of his oxyegn needs with in no time.

Our time at BC Women’s was a long and arduous journey, not at all what I was expecting. For the first time people were starting to talk about Matteo’s “Work of breathing” and not his “Oxygen needs”. This was the first time we had heard anyone spell out this concern. The night we went to visit him and found him on CPAP and no one could tell us what had happened or why he was on it was one of the worst nights of our life. We thought he was going backwards, that he was somehow getting worse, when the reality was the support he had been receiving up until that point was not the support he actually needed.

Matteo spent 3 months in the NICU at BC Women’s Hospital. While there doctors did their best to investigate what exactly was going on with Matteo’s lungs but were not able to actually diagnose him. They tried every non-invasive test they could. They altered his feeds, they switched his breathing support and they even did genetic testing. Nothing they did gave them a definite answer as to what was going on with his lungs. In the end they determined that he had some type of Interstital Lung Disease but the only way to find out the exact type would be to preform surgery and remove a piece of his lung and send it for tests. Thankfully they didn’t feel this options was worth it because whatever answers it would have provided it would not have altered the way they planned to treat him.

In the end the doctors agreed that Matteo was in fact going to grow out of whatever it was that was going on with his lungs. He was eating and growing and healthy in every other way. If the cause of his “work of breathing” had been something serious and life threatening, then they would have seen his health rapidly decline. The good news was the opposite was happening. He was able to gain weight and develop wonderfully despite this set back with his breathing. A plan was then put in place to find out what type of support he needed to be able to go home.

After 137 days in the hospital Matteo finally came home without any oxygen or other types of continuous breathing support. All that he needed was CPAP support while asleep (nights & naps) to help open his airways and allow him to breath easier while awake and playing. Since being home we have already had one follow up appointment with Respirology at Children’s Hospital and they were so impress with his progress they down graded his support to just at night.

While we are thrilled beyond words that Matteo is home and thriving, there is still a ways to go before his breathing is 100%. We are comforted, however, in the knowledge that while this may take a long time, he will in fact grow out of it.