Madeline Gives Us a Reality Check

The past few days Jason and I have been living on cloud 9. We were so thrilled. Everything seemed to be going so well. The babies looked like healthy 6 (almost 7!) pound newborns. They both were off oxygen, off their feeding tubes, and taking bottles. Mason had his hernia repair surgery and came back from the operating room breathing on his own and hungry for a bottle like nothing even happened. We were told that as long as nothing crazy happened we would be bringing both of our babies home next Wednesday. There was finally a light at the end of this NICU tunnel (I say tunnel but what I really mean is exhausting, never-ending, stress filled, hell of a ride roller coaster). Then Madeline decided it was time to smack us back in to reality. Because although these babies may look like perfectly healthy little newborns, the reality is....they are still preemies. Preemies who were born wayyyyy to early, have overcome so many obstacles, and still are not as healthy as we wish them to be. Don't get me wrong, they are doing fabulous. However, we learned on Friday night things may not be as they appear. Especially in Madeline's case.

Madeline had come off oxygen this past Monday. The first few days weren't so easy for her. She had many dips in her oxygen levels throughout the day. However, they were always brief and she was able to recover on her own. They happened frequently but since she popped back up so quickly from them the doctors decided to let her stay off the oxygen and try and get the hang of it herself. By Thursday she seemed to be having a lot less of these "dips" in her oxygen. She was also taking almost all her feeds by bottle and not her feeding tube. So on Friday they removed her feeding tube as well. On Friday during the day while Jason and I were on the floor of the OR, waiting for Mason to get out of surgery, Madeline had one of these dips in her oxygen. The nurse had to use the oxygen mask to blow some oxygen on her face to help her recover. This was unusual for Madeline because she always recovers without anyone having to intervene. We didn't really think much of it, thinking that she may have gotten choked up on some milk or spit up. Late that evening Jason and I were sitting next to her crib while she was sleeping. She again had another dip in her oxygen level. I peeked in to her crib and she looked fine. I fully expected her to bounce her oxygen saturation back up to where it needed to be in a matter of a few seconds, as she usually does. This time though her alarms kept dinging and her color started to change. Her oxygen was much lower than she usually dips down to. Keep in mind she is fast asleep not making a peep through any of this. It took several minutes, the nurse paging the Nurse Practitioner, waking Madeline up, rubbing her back and chest, and again the use of the oxygen mask for her oxygen levels to return to normal. The Nurse Practitioner who was on for Madeline's team of doctors that night noticed she was sounding congested. Not in her lungs but more in her upper airways. Maddie always snorts a little when she breathes so this was not too unusual for her, but when you listened more closely it was apparent she sounded pretty congested. So they decided that before anything drastic was done (like draw blood for labs or place her back on oxygen) they would try flushing her nose with saline and suctioning it to try and help some of the congestion. As the nurse did this a HUGE wad of, well for lack of a better word, boogers came out of one nostril and another out of the side. You could literally hear this getting sucked out and into the suction tube from across the room. They were HUGE. Everyone seemed to be immediately relieved. It was obvious this was why she couldn't breathe efficiently. Immediately her oxygen rose to almost perfect, she stopped doing what they call pulling (which shows she is working hard to breathe), and everyone took a sigh of relief. I however was trying to hold back tears. This officially freaked me out!!! I mean this was such a small and stupid thing. Boogers?? Really?! How could something so stupid cause my baby to turn an unnatural shade of pale blue and have so much trouble breathing. What if this happened when we were home in the middle of the night. With her oxygen levels dropping that low, her heart rate would have eventually dropped as well and I shudder to think of what could have happened next. This was not OK. This was not an "oh no big deal just some boogers" situation. We were taking our babies home in less than a week. Something like this can not happen at home when we don't have alarms to alert us that our sweet baby was in such trouble. Needless to say Jason and I did not sleep well that night. I shed a lot of tears of panic and fear.

The next morning Madeline again had another episode where her oxygen sats dropped and she needed a little boost of the oxygen mask to help her recover. So Jason and I sat down with the doctor and discussed what was happening. We came to the conclusion that maybe we are just expecting a little too much out of Madeline right now. As thrilled as we were to think that she will be going home next week at the same time as Mason, it was apparent that this may not be the case. Madeline had accomplished so much, so quickly, over the past week. The doctor had warned us that sometimes a preemie baby can do really great and then start to slowly show signs that maybe things are moving too fast for their little, immature bodies. Maybe taking her off oxygen and removing her feeding tube in the same week, even though she had been doing really well, was more than she could handle. The doctor explained she just didn't have the extra strength to overcome small obstacles (example: taking all of her feeds by bottle instead of just 3/4 of them and relying on a tube for the remaining or even overcoming breathing around or sneezing out large boogers and mucous!) that a full term or stronger baby could. We decided that if Madeline had another episode where it took a nurse to intervene to get her oxygen levels back up, then she would be placed back on a very small amount of oxygen again. A few days ago if you had told me Madeline might need to go back on oxygen I would have been very upset. Now I realize if she needs this little bit of oxygen for another week or so, then that's what we have to do for the time being. I know she will eventually come off of it. But this may be what she needs until her body adjusts to everything we are asking her to do.

We also discussed the possibility of her being discharged home with heart and oxygen saturation monitors. I was under the understanding that she could only have these monitors if she went home on oxygen. I explained to the doctor that I would NEVER sleep if these little events were possible at home and she was not on any monitors. I seriously was already beginning to figure out how Jason, I, and my mom could take shifts watching her in the night so that she always had a set of eyes on her and we would know if she stopped breathing. The doctor assured me that they would not release her home if she was still having these episodes and if they thought they were still a possibility when she was discharged home they could send us home with monitors for her to wear at night that would alert us if her oxygen levels or heart rate dropped. Hearing this took about ten million pounds of weight off my shoulders. I could have kissed that man. I'm not kidding when I say I would NOT sleep and would spend every minute of Madeline's sleep with me staring at her to make sure nothing happened. It was such a relief to know that if we needed these monitors at night, then he would order them for us at discharge.

The last thing we discussed was it was now possible for Mason to be discharged before Madeline. Again if you had told me this a few days ago I would have been devastated. Now I realize that if Madeline needs a little more time, then that is exactly what she will get. I know this will be hard for our family. If Mason goes home then I will go back to southern Illinois with him, and Jason and the rest of our family will have to take my place in St. Louis staying with Madeline. This breaks my heart, but I know it will only be for a short time. I have spent almost every single day all day with these babies at the hospital. I have been away only a few times when I came down with mastitis (twice, not fun) or when I went home for the day to do laundry and get their nursery together. I hated thinking I would be finally going home and not bringing both of my babies. But I know she will grow out of these episodes. I know our doctor will make sure we feel safe bringing them home (even if that means she comes home on a small amount of oxygen or uses a monitor at night to alert us of problems). And most importantly I know we will make it through this.

Another NICU twin mom who I message with frequently on Instagram told me that the last week or two were the hardest for her. Initially I thought yeah right nothing was harder than those first few scary weeks, but now I understand what she meant. The end of this NICU journey is soooo close but at the same time feels like it is taking forever. It is not only exciting to think we will all be home together, but also extremely frightening. Maybe I can talk one of the nurses into coming home with us. (Ali and Amanda I know you are reading this.....don't ya want to quit work for a week and stay with us....I'm kidding, I'm kidding. But not really. haha!) 

UPDATE: So I wrote this post on Saturday. It is now Sunday and they have not had to put Madeline back on oxygen. She has not had any more major episodes and seems to be doing really well (knock on wood). They will continue to keep a close eye on her. But as of now she is still off the oxygen and feeding tube. She is taking all her bottles as well. We are not sure when they will decide to discharge her. She still seems to be a little congested but other than that is doing great. As of now I'm thinking they will most likely be discharging Mason first and we will take it day by day until they decide Madeline is done giving us scares and can come home as well!