A Giant Leap for Mom-Kind

For the past several days mommy has been absolutely exhausted both physically and mentally. Physically in the fact that for about 62 days I have been going through the same routine of getting up and getting dressed every morning in order to feed and hold my little boys while continuing to pump in between care times. I generally live off of 1 to 2 large meals a day because I hardly have enough time to eat with everything that is going on. The nurses keep encouraging me to be better about eating and taking breaks but it is a little difficult when you are the only one with the proper equipment to breastfeed the boys and they are also encouraging me to breastfeed Braylon almost all of the care times that I can go to and Kaden about two of his care times. It takes about an hour for each baby, and that is if things go smoothly, and by the time you are done with both it is time for the next set of cares. I know it will get easier at home because all we will have to do is feed them and change their diapers, not take their temperature, change the probe on their foot, wait for the nurse to do their assessment, wait for the nurse to get the milk out of the fridge and warm it, etc.
Now, for the mentally exhausting part. So for about a month I have been questioning to myself if Kaden would benefit from steroid therapy. The doctors and I all agree that Braylon probably got the entire dose of the one steroid injection I received before delivering and that is why he has fared so much better in the respiratory department. So I have been thinking to myself, why can’t we give Kaden steroids now to help his lungs. I am not the type to go raising an issue unless I have gathered some information first. Plus, I have been trying to keep the mommy side of me and the nurse side of me separate and just let the doctors do their jobs. But, lately I have been feeling really, really, frustrated with how little progress we have been making, especially with Kaden’s respiratory status. He has remained on high-flow cannula and although we have been able to turn the flow down he has needed more oxygen to maintain his saturation. Not to mention that his respiratory rate has continued to creep back up and he has to work to breath, so much that he has been too exhausted to eat from a bottle and has needed to have them through his tube. So with my frustration I finally mustered up enough courage to bring the idea up to Dr. Egger, who nicely but immediately shot it down. While in the mist of our conversation, in which he shot my idea down, he mentioned that another doctor is more likely to use steroids. So when that doctor was the one to make rounds on the boys the following day I thought I would take the opportunity to ask him his opinion.
At first it sounded like he agreed with Dr. Egger but after he gave me the opportunity to explain my thoughts we were both on the same page. He said that it is not a common practice to use steroids on term babies but he did not see why not, since Kaden is no longer too small to be at risk for some of the side effects. He told me that he did not want to step on Dr. Egger’s toes because he was the boys’ primary doctor but he felt that my points were valid and worth discussion.
Yesterday, Dr. Egger was back and rounded on the boys. I could tell that things were a little tense and I felt almost as though he was avoiding rounding on the boys while I was in the room. Finally he did make his way in and he said, “So I hear you and Carl had a discussion about steroids for Kaden.” I explained that I wanted to know his opinion. He asked me why it was so important to me and I explained my thoughts. He again shot my idea down by saying, “I’m not going to do it but I am going to be off for the next six days so if another doctor wants to write the order….” I was a little shocked by his response and when he left the room the tears started to well up in my eyes out of frustration. All I wanted was for him to give me a good reason why he would not consider it.
Usually when the doctors round they leave the room and then come back after reviewing the charts. This time took longer than normal so I thought he wasn’t going to come back. Eventually he did come back and as he walked in the room he said, “Can I reserve the right to change my mind?” and I responded “Yes.” He said, “I do want to try a course of steroids and in fact I would like to take it one step further and use steroid breathing treatments also.” He explained that he did not realize that although we were turning the liter flow down we were needing to turn the oxygen up which really is not progress. He warned me about getting my hopes up because it was a guarantee that Kaden would improve while on the steroids but may rebound once the course is completed. I told him that was fine and that the worst thing would to be right back where we were that day.
That brings us to today. Kaden had had a total of two doses of the steroid by the time we showed up this morning. In that time they were able to turn his oxygen levels from 50% to room air and his liter flow from 1.5 liters to 1 liter and could have gone down further if the equipment had allowed it. At that time Carl, the doctor who had agreed with me, stopped by just to chat. He asked how things were going and I told him great but that I knew it might only be temporary. He said, “I don’t thinks so. You usually don’t see this big of a change this soon if it’s not going to work.” He also said, “I think this is what he needed. We are headed in the right direction.” This made me feel so much better about my decision. I had been feeling unsure about whether or not I had done the right thing.
The doctor that rounded today, who is usually against steroid use, came in and assessed Kaden and was amazed and also agreed that it was the right move and did not feel that even if there were a rebound effect that it wouldn’t be without progress.
During our afternoon care rounds there was some trouble with Kaden’s high-flow because they had turned to liter flow down so far. Because there was not enough air flowing through the tubing condensation kept building up and squirting in Kaden’s nose, so the nurse took it off to fix it. While she was fixing it she watched Kaden’s monitor and could not believe it when she noticed no change. We let him be without any cannula for several hours and he continued to do better and better.
When I came back after report the nurse from day shift stopped me on the way in. She said they had decided to put Kaden back on a cannula only because he had been grunting and holding his breathe so much trying to make a poop that he kept setting the alarms off. They decided to put him on a regular cannula so they could continue to turn the flow down without getting water up his nose. Basically he is on room air with a little bit of air blowing at him.
At this point he is where he would need to be, oxygen wise, to be able to go home. The doctors think that it may have even been enough of a step in the right direction he may not need to go home on oxygen. All he would have left to do is the nipple all of his feeds, which has also been better since he does not have to use all of his energy to breath. We are keeping our fingers crossed that this was the solution and there won’t be a big rebound. We will know in about four days if it is going to work.
In the mean time Braylon has been put back on the caffeine to help him breathe through the reflux and he has been put on straight breast milk. He has gone over 24 hours without a brady spell and the doctor today said that they won’t be doing anything right now because it’s the weekend but that he will have the home monitor people come work with us on Monday and for us to be prepared to room-in with Braylon Tuesday night, assuming he doesn’t have any brady spells for a total of five days and he passes his car seat test.
I am afraid to say it, but, I think we may be on the home stretch.