Big Changes - Day 34

Stuffed elephant week 4

Stuffed monkey week 4 

Ellie's CPAP mask

Rex's CPAP mask 

 Ellie's binky

Rex's face without masks! 

Rex 

Rex 

 Ellie's face without masks!

 Pretty Ellie

We have some BIG news from the Young babies this week! Both Rex and Ellie have now been extubated. That means that they both now have their breathing tubes out. Now, before you go on to think that they are just breathing on their own and quickly on their way to walking out the door I have to explain a little more. This is definitely great news and it feels like progress, but just like everything along this journey it comes with its own set of challenges and risks. I'm going to do my best to keep this post short and sweet because I know that I tend to do the opposite if I don't watch myself. So here is the condensed version.

Dr. McGill Vargas was in charge of our babies for a few days last week and felt like she was getting familiar with Rex and Eleanor enough to start trying some new things. The doctors don't usually like to make big changes just before another doctor comes on duty because it seems like they think it would be unfair to make a big change and leave the new doctor to deal with the potential fallout. Dr. McGill Vargas had been talking to us for a couple of days about trying to switch Ellie to a Drager ventilator. On Wednesday June 28th she decided to finally try to "bag" Ellie to try to see whether or not Ellie was ready to be switched to the next type of ventilator. They had an RT (Respiratory Therapist) in the room with the doctor and our nurse. They got everything ready and turned off the oscillator and began bagging Ellie. They went on and did it for about 30 seconds, but Ellie's heart rate dropped quickly and her oxygen saturation levels did the same thing. Eventually Dr. McGill Vargas told them to switch the oscillator back on. Ellie immediately came back to her normal levels. We were pretty bummed because the doctors had been very optimistic that she might be ready to make the switch. Dr. McGill Vargas said that she definitely wasn't ready, but decided that it would be a good time to start a round of steroids for her to try to make a push toward getting ready. They had been waiting for two weeks to pass from when she was given the indomethacin to attempt to close her PDA. It had finally been two weeks so the doctor decided that it was the perfect time to try to give Ellie a round of steroids to help her lungs to develop. I'll spare all of the details about the history of steroid use in neonates, but there is some debate about when to use them, whether to use them, and how large of doses to use. Dr. McGill Vargas went over all of these things with us and we all felt like the right thing to do was to give her the steroids. Unfortunately, Rex was still too sick with the fungal infection to receive steroids. Ellie's lungs were looking a little more "socked in" and cloudy than Rex's though, so they wanted to move ahead with her.

On June 29th Ellie started her round of steroids. She is being given a steroid called dexamethasone. It can slow growth but boost maturation, so the doctors have been closely monitoring her growth. She is still receiving frequent feeds with fortified breast milk and seems to be digesting everything without any issues. On June 30th Ellie got another tryout being bagged and passed after one day of steroids. They decided to move forward and extubate her quickly. Kaitlin and I came into the room and were able to see Ellie off of the oscillator and on the bubble CPAP ventilator. It seemed so quiet on her side of the room without the oscillator on making all of the vibrating sounds that we've become accustomed to over the last few weeks. It was really fun to be able to see her top lip without a tube taped to it. But, on the flip side she now has a CPAP mask on that covers her nose and part of her face. The CPAP masks look like this:

Ellie was on the bubble CPAP for about 5 hours, but was just not quite able to keep her saturation levels up where they should be. She would go through episodes of apnea where she would just stop breathing altogether. Rex and Ellie are so premature that they simply aren't neurologically developed enough to always remember to breathe. Sometimes they will get upset or tired and just stop breathing. They did a blood gas test and decided that they should perhaps go back to NIPPV on the Drager ventilator for Ellie to give her a little bit more support. NIPPV stands for non invasive positive pressure ventilator. Basically it gives the baby a breath every few seconds or so through the tubes that are connected to their CPAP mask that goes over their nose. That way if they forget to breathe it does it for them. In fact it pushes air in whether they forget to or not. They both also have been getting caffeine which stimulates neurological development so that they can remember to breathe. She has been on the NIPPV for the last several days and this was a big deal because it means that it is much easier for us to hold the babies.

As for Rex, he began steroids on June 30th when the blood culture from the 25th came back as negative final. With that news they felt comfortable enough to begin the dexamethasone with him as well. They took an x-ray and tried lowering his settings on the oscillator to see how he would do. The next thing we knew we came in on Sunday July 2nd and he was on the Drager ventilator with it set to NIPPV just like Ellie. We learned that early in the morning they had extubated him and that he was on the bubble CPAP for about an hour before they decided that he needed a little bit more support like Ellie had. So, when we walked in they were just finishing up the changes and he was on the NIPPV to match his sister. Now it is really quiet in their room!

It has been a little bit strange to feel like every time we get to the hospital in the last few days there are big changes that about to happen or already have happened. In some ways Kaitlin and I feel like we are a little bit disconnected from what is going on because things were changing so fast. At the same time we understand that the doctors want to make a little push while Rex and Ellie are on the steroids to try to move them towards being able to breathe on their own. In the end all of the changes feel like progress and that is obviously an awesome feeling. They are still so small and weak and sick, but any little steps in the right direction will be celebrated.

Their biggest challenge for now is just to grow and to mature and gain strength. The biggest issues would be any type of infection. So, we are washing our hands more than ever. We are probably using more hand sanitizer than is needed, but better safe than sorry right? All in all we just feel so overwhelmingly grateful that things are moving in the direction that they are. I will let Kaitlin fill you in more about being able to hold the babies. We honestly feel that there have been so many miracles that have happened since this whole experience began. All of the nurses and doctors keep telling us how different things don't usually happen and how they are beating the odds. In fact, today we saw the doctor who was here when Rex and Ellie and I arrived on the life flights. Dr. Lewis was the one who admitted them and she left the next day to go to a different hospital. The group of doctors here rotate hospitals and she had not seen them until she returned here to Sacred Heart today. She came in to speak to us and to introduce herself to Kaitlin since Kaitlin was still in Grangeville at the hospital when Dr. Lewis left. She said that when she got here again she had to ask if these were the same twins that she had admitted over a month ago. She said that she was really happy to see that they are both here, and to us she seemed a little surprised even if she didn't say it.

We're so grateful to all of you for praying for us and more importantly for Rex and Ellie and for their health. We believe that those prayers have a lot to do with why Rex and Ellie are still here. We feel so blessed to have such great nurses and doctors who are so skilled and attentive to the needs of our babies even with all of the other sick babies that surround us here in the NICU. I have learned more in the last month or so than I ever imagined I could. I've learned all sorts of medical terms and procedures and explanations to go along with the growth of my testimony. For all of that I am thankful. But most of all I am thankful for Rex and Ellie and for their fighting spirits. They've gone through so much more than anyone should have to go through, but they are still fighting. That also teaches me a lot.