3 Months Old (Corrected)

Yesterday the triplets turned 3 months old corrected. Although they have been with us for over 6 months, they are now 3 months past their due date. This means developmentally they are 3 months old. 

Liam: 

Our sweet easygoing munchkin is now 12lbs and 8oz! He is good at feeding and is always much quicker than Taylor at drinking his bottle. We have really noticed him thriving at home in the past few weeks and catching up to Taylor developmentally. For example, we see this in the way he responds to us (head turning, eye contact, smiles, etc.) and the way he plays (looks more at hanging toys and hits them, etc.). It's beautiful to see him thrive at home after spending so much time in the hospital. At the same time, it is hard not to think of our Malachi and how he could thrive better at home too. 

Liam still has his head circumference closely monitored 2 times a week. His eye exam this past week went very well and his followup is now in 3 months! Much better than weekly or every other week appointments. 

Taylor: 

Our sweet happy girl is continuing to do well too. There are some concerns with her weight gain being too slow and so she tags along to Liam's appointments and is weighed twice a week. She is now 11lbs 14oz. As parents of micro preemies, it's hard not to worry and over analyze every detail with our babies, especially when they are so closely monitored in every aspect for their whole life so far. 

Mother's Day 2017

Malachi:

Our sweet precious youngest has been having a rough last week or so again. He is just on the tail end of his antibiotics for pneumonia and we hope and pray that it is fully gone. Even though he is acting mostly recovered from the pneumonia, the healthcare team has been having difficulties when trying to get him comfortably breathing. To be fair, getting Malachi comfortably breathing has been a problem his whole life. However, ever since he got the trach surgery, the team has been trying to find settings that he is comfortable in as a "base line". They want to get him to a point where he can breathe easier and grow quicker. As it is, he is working hard to breathe: sweating all the time, burning lots of calories, having significant work of breathing in his chest, flaring his nostrils, etc. Because of all the difficulties in trying to find stable settings for Malachi, a number of tests were done last week Friday. This included a chest X-ray and a scope put down his trach tube into his trachea and top of the lungs. In this scope they saw that the trachea below the trach tube was collapsing. This is called tracheomalacia. It was immediately decided that Malachi needed a longer trach to try get past the collapse in the airway. However, the size he needed was custom, since the width of the longer trach was too wide for a little guy like Malachi (for you trach minded people out there: he was on a 5.5 cuffed trach and needed to go longer). We were quite worried over the weekend because all of the specialists and regular doctors went home for the weekend and we were sort of left in limbo over what the plans were moving forward. On Monday, the team reassessed and did another scope- this time leaving the breathing support on (instead of quickly taking it off for the scope) and did not see any tracheomalacia. This could mean one of two things: 1) he doesn't have it and Fridays scope was inaccurate without the breathing support or 2) he has it but the high pressure of air blowing into him keeps his airway open and free from the collapse. Either way, he does not need any type of intervention at this point. However, something still needed to be done to get Malachi on to comfortable settings. After some playing around with higher settings, the team decided to put Malachi on a special mode of ventilation called NIV NAVA. If you have read our previous blogs, Malachi has been on this before without his trach. The hospital does not technically support or fund this technology. It was being trialed a number of months ago and Malachi responded well to the trial. The hospital has allowed him to go back on this mode of ventilation and has ordered the special (expensive!) parts for him. We are so grateful! This ventilation involves an NG feeding tube down his nose which he doesn't need because he has the g-tube feeding him through his stomach. However, on the feeding tube are electrodes reading the electrical activity of Malachi's diaphragm and providing breathing support based off of that information. It's amazing technology! The last day and a bit that he has been on it have gone well. He seems more relaxed and is sleeping a lot. His oxygen support levels have come down significantly. It's still early but we hope and pray that this will help Malachi! The idea is that the NIV NAVA will give the healthcare team the data that they need to understand what Malachi needs to breathe comfortably. At the same time, it will also give Malachi some time to grow and relax... which is crucial to his improvement. 

As parents, we have mixed feelings about it all. On one hand we are thankful and hopeful that this will give Malachi what he needs. On the other hand, this mode of ventilation is not a step towards going home as he cannot go home on this machine. We had a big meeting this past week to discuss Malachi and in that meeting it was noted that a timeline is very hard to say at this point. In our previous blog we had mentioned August as a potential home date but this is once again pushed back. We are trying hard not to be excited for when we might go home but really try to "pretend" we are home and enjoy our babies as much as possible! Yes, we have a lot to figure out and learn and prepare for now so that we are prepared and ready to take Malachi home, but we cannot look forward to that all the time. 

Another new development with Malachi is that an ultrasound has shown he has gallstones. In the coming week, we will figure out what that might mean in terms of potential treatment but we hope and pray that nothing will need to be done. 

Aside from all the changes in ventilation, our little sweetie is starting to play with a hanging toy and give lots of big smiles at certain times of the day. He is now 12lbs and 15oz! 

The other half of Mother's Day 2017

With the NIV NAVA NG tube in his nose 

As we watch our little ones growing and developing, we stand in awe of God's awesome handiwork! He has brought these precious miracles so far... The well known text comes to mind from Psalm 139:13-16: "For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them..."