January 14, 2017

The triplets will be 35 weeks gestation on Monday and are currently 9 and a half weeks old. Time has gone very fast and very slow all at the same time!

Liam: 

Our Liam's recovery from surgery has been incredible. We praise God for the huge improvement we have seen in our little man! In the first few days following surgery, his heart rate was quite low and a cause for concern. However, on Sunday night it returned to normal and the cardiologist was no longer needed to assess Liam. It's possible that the pain medication was the culprit and it took a while for the medication to leave his body. On Monday afternoon, Liam's breathing tube was pulled out and he was put on CPAP! The respiratory team usually tries to start with the lowest type of CPAP before moving up to higher support levels and different types of settings. We were so happy when Liam was able to stay on the lowest form of CPAP (which is what Taylor is on)! This means he is breathing on his own while the machine gives a constant pressure to keep his lungs open a bit, so as to reduce his workload. The constant pressure he was receiving was a little higher than Taylor's but still very impressive for a little boy who had been intubated for so long. On Friday, they were able to wean the pressure down a little and he again responded well. He is steadily moving towards breathing in room air but still needs some extra oxygen for now. We are so incredibly thankful that the surgery has helped Liam so much and that his recovery has gone so well! Our God has answered many prayers! 

One concern that has been ongoing in the last couple of weeks is that Liam has some jaundice. This is not the same kind of jaundice that can be fixed under phototherapy lights. Instead, it has to do with the functioning of his liver, kidneys, and gall bladder. The doctors believe that it could be from all the infections Liam has had and the surgery on top of everything. They expect it to clear up soon. However, if it hasn't cleared up by Monday, then he will start some testing to check that everything is working as it should.

We are back to enjoying snuggles with Liam since he can come out of his incubator again. After the surgery, he did not gain weight, but has started to gain again in the last few weeks. 

Taylor:

Not much has changed with our baby girl. She is still on the same CPAP settings as last week. The respiratory team did try to wean her settings a bit lower this past week but her breathing started becoming much quicker and so they put her settings back to where they were. She is still doing very well, though, and is usually breathing room air without extra oxygen support. Sometimes she needs a bit extra for various reasons. 

In conjunction with her reflux, Taylor has quite a bit of air in her belly which causes her to spit up and feel uncomfortable. Air in the belly is quite common for babies on CPAP since they are getting air pushed through their nose all the time. However, Taylor's belly was measuring even bigger this past week and so they have been keeping a close eye to make sure that nothing else is going on with her (such as an infection). So far it seems to only be air from the CPAP. 

Taylor has been growing well. She also has come out of her incubator a number of times again this past week to snuggle with her Mom or Dad and sometimes with Malachi. Both siblings do very well when they come out together.

Malachi:

Last week and weekend, Malachi was just extubated and put on CPAP. This was due to a round of steroids, which he finished on Tuesday.  For a number of days after he was put on CPAP, he was just hovering around the point where he would need to have the breathing tube put back in. We were constantly worrying and waiting for the phone call. The doctors explained that the steroids seemed to have helped but not as much as they could have. It seemed that Malachi would have gotten much worse if he hadn't had the round of steroids... they had only been preventing him from getting worse rather than helping him get much better. Finally on Thursday, it seemed Malachi would need to go back on the breathing tube. His oxygen levels were very high and his settings were also very high. The healthcare team tried so many different options such as changing the position that he was laying in, trying different size masks and nose prongs, changing his settings... We met with the neonatologist on Thursday afternoon and he told us that they were trying one last option before putting the tube back in. They also wanted to try a type of steroids that are inhaled. These steroids are similar to an asthma puffer and have very low risks compared to the steroids he was on before. The doctors explained that if our little man would be intubated again, it would likely mean months before he might eventually be well enough for CPAP- not to mention the months of CPAP after that. In the meantime, an echocardiogram was done to check Malachi's PDA and make sure that wasn't an issue that had reappeared. Malachi was by no means stable enough for surgery, yet the doctors wanted to know in case we had to resort to surgery if Malachi's breathing got bad enough and there were no more options. Thankfully, the results showed that his PDA was still almost closed. As we stood by Malachi's bedside with the team who were doing their best to keep our baby extubated, a respiratory therapist suggested to try a breathing machine that had literally just been approved that same afternoon by the hospital to be used in the NICU. Praise the LORD that this was the answer at that time for our Malachi! His oxygen support levels started coming down, the carbon dioxide levels in his blood started dropping (they had been too high for a long time), and his breathing became a lot more stable. On this form of CPAP, Malachi is breathing on his own with a set pressure in his lungs to keep them inflated. This pressure is very high, especially compared to Liam and Taylor. In addition, the CPAP detects when Malachi takes a breath and adds extra pressure to help him inflate his lungs further. He needs a chinstrap to keep his mouth closed to try and keep all the air pressure from leaking out of his mouth. We were so relieved and thankful after such a close call, although it was hard to stop holding our breaths after all that. We were still concerned that Malachi would tire from breathing on his own and need more support again. The respiratory therapists were confident, however, that they had more options now that Malachi was stable. Malachi was also able to go back to a machine he was already on before, now that the team knew what worked for him. The timing of how everything worked out was truly miraculous and we praise God for it! If Malachi is able to stay on CPAP, it will still be a long road and he will likely stay in the hospital much longer than his siblings. However, it is a shorter road than going back on the breathing tube and having his lungs continue to be damaged. 

All of this has also led us to questions about Malachi's future. We know that he has chronic lung disease which means his lungs are very sick. These lungs won't heal anymore, as the damage is permanent. However, new lung tissue will continue to grow as he gets bigger until around age 8-12. No one knows how his damaged lungs will affect him in the future. It could mean asthma, lots of respiratory sicknesses like pneumonia, or being unable to run without getting winded... but it could also not bother him at all. Time will tell. However, we do know that with Malachi especially (but also very much the same with his siblings) we must do our very best to help him avoid getting sick in the first number of years of his life. Even a common cold could affect our triplets way worse than a normal healthy baby. This obviously means that as parents we are doing our best to avoid getting sick ourselves and also being careful with having visitors.

Our nurses made these posters- one for each triplet!

At the end of another long week, we praise God that we have three beautiful triplets who are all 4 pounds each and on CPAP of some form! We have still got months in the hospital and we are way behind a lot of other babies at the same gestation as our triplets, yet we have lots of reasons to be thankful. "Bless the LORD, O my soul, and all that is within me, bless his holy name!" (Psalm 103:1).