Wow, today was rough.

Last night, we continued to notice that Ella was having a hard time breathing. We could tell because her saturations were in the low to mid 90s and her heart rate was between 155 and 180 while she was sleeping. When she left the NICU last week, her saturations were 100 and her resting heart rate was 115 and even lower. When you looked at her, you could see that her breathing was more labored. When we thought about it harder, it explained a lot of her fussy behavior the past 2 days. Something told us that things were not right and heading in a direction that could be bad.

At 6:30am, I decided to call the NICU and talk to Nurse Michelle. She agreed that didn’t sound right and offered to come by our house to take a look at Ella. Plus, it gave her an excuse to see her and give her a squeeze! Once she saw her in person, she agreed that this was not the same baby that we took home last week. By that time, we had increased her oxygen to 1 liter.

As soon as the office for the pediatrician opened, we were on the phone with Dr. Sarantos. She opted to call Dr.Kays to see what he wanted to do, especially because she is just getting to know Ella. Dr. Kays decided it would be best if we went to the ER and had him paged.

All was moving along fine in the ER. They placed us in a room, away from the public waiting area and we had a chest x-ray. Ella did not like it but we managed to get through it. Dr. Kays was also looking for her blood lab work. If you remember, she just had her blood drawn yesterday at Dr. Sarantos’s office, but somehow there was a miscommunication and he ordered another set from the ER. We were told that a NICU nurse would be coming to do the prick since Ella is a tough one.

A few minutes later, two ER nurses showed up to draw the blood. They told us that the NICU was contacted but there was not a nurse available (we later found out that wasn’t true). Josh decided to stay outside the door and make a couple of calls. I knew Ella would not do well, so I tried to warn the nurses. They began to look for an area to get the line in. Then, I realized that they wanted to do an IV line, which has always been a tremendous challenge on Ella. I warned them that she was in the ER for respiratory distress and was already on 1 liter, but they should increase her oxygen during this time because she will likely get air starved.

The next 10 minutes were the longest 10 minutes of my life. The nurses both blew me off and did not heed anything I told them. Once they started, they were not having success and with each further prick, Ella was getting more and more upset and not able to catch her breath. I was helping to console her and hold her down (she gets so mad that she will throw her arms and legs around).

When my daughter was a bluish/purple color for an extended amount of time, could not catch her breath and had that look of fear in her eyes, it was so tough for me. I continued to vocalize that she needed more oxygen support to help her and the nurses completely ignored my input. This was the most horrifying experience for me. When I looked down the next time, Ella’s mouth was full of blood. I had no idea where or how it got there. She was so mad and fighting me so hard. I was having to hold her down, keep the limited oxygen she had in her nose and try to keep her from inadvertently scratching herself. I started to cry and raised my voice louder to the nurses to let them know that we needed to take a quick break so Ella could catch her breath. It is not good for her to go extended periods of time with limited oxygen supply. They patronized me and told me that “all babies get upset”. I was in tears when Josh burst through the door and asked, “What is going on here?” He noted everything and immediately ran to the oxygen meter on the wall and turned it up (sometimes it’s easier to ask for forgiveness than permission), ran back out in the hallway and yelled out that we needed help in the form of blow-by oxygen. Thank the good Lord that Josh walked in when he did.

As the nurses were leaving the room, I had to tell them my thoughts. Through my tears, I thanked them for the job they perform each day, but told them that I was really offended that they did not listen to me. As much as I respect their experience and position, I know my daughter way better than they do and that they should have listened to me. I felt like they completely blew me off.

Once we were able to calm Ella down, which took a solid 15 minutes of 3 liters of oxygen via the nose cannula plus blow-by oxygen, we realized that she scratched her nose, ears and lips (this is why there was blood in her mouth). Later the same nurse walked in while we were still stabilizing Ella and went to turn down the oxygen. Josh told her firmly to not touch the oxygen. She started to explain and he simply asked her to leave.

To top it off, we found out later that Dr.Kays did not even order the IV; he just wanted the blood drawn. So, all of it was unnecessary. Those 10 minutes are forever etched on my memory. I have never experienced anything so horrific. My daughter was not just crying because she was mad; she was being air-starved and had a look of fear on her face. The blood in her mouth did not help, since I was not sure of the cause while the incident was occurring. It was just a scary moment for me.

Josh and I have experienced Ella being air-starved before, but it has always been within the controlled environment of the NICU. I thought that was bad enough to experience it in that setting because it is so hard on Ella. Today has to have topped it off as the hardest experience with Ella. I couldn’t help but cry hard. I love my baby girl so much and they literally just tortured her for an unnecessary reason.

Once they admitted us to the hospital, we ended up on the fourth floor in the pediatric floor. Between the ER and the pediatric unit, everyone that was seeing Ella had never seen her before. They were just taking in the information and could not provide any insight since they have never seen her before. I advised that they look up her history from the NICU, and they informed me that none of the computers are networked together. That was frustrating.

It felt like we went to a hospital in Denver or somewhere that they had never seen Ella. I know we will have to face that scenario some day, but we were just released last Friday, 5 days ago. It just seemed unreal.

Once we were settled in our room, it was tough to get some of the comforts that we were used to having for Ella, such as a positioning aid. We were getting the runaround. Josh got frustrated and decided to walk down to the NICU and get them himself.
When he laid eyes on familiar faces, especially Nurse Marla, he just started crying. Nurse Marla took the time to make sure that we had what we needed and walked back up to see Ella. She was the first visitor, although throughout the rest of the day and night, more and more NICU staff came to see the three of us. It was so comforting to see the people that care about Ella and also understand her history. The pediatrics nurse joked to us that if she charged admission, she would be rich.

Dr. Kays did stop by in the room to examine her. The first thing he did though was just walked in and gave us both hugs. I think that says it all.

Ella’s hands on assessment was good. Her lungs sounded clear. After 15 minutes, he came back and noted that her chest x-ray is one of the best he has seen. Her blood lab work came back and all her levels look great. They ordered an echocardiogram for the morning and they expect that it will be fine. At this point, they think it is simply a fluid issue again, so they have decided to increase her diuretic dose of Bumex, starting tomorrow at 8am.

We agree that it is likely fluid related because her face looked more puffy today than normal. Also, all last week in the NICU she was losing weight (likely getting off the excess fluid and going towards a true weight). As of today, she gained a good amount of weight. Yet, the only change that we made was the food – they switched her to 100% formula. They made this change late last week and did not really have a chance to monitor her adequately before discharge.

So here we are spending the night in chairs next to Ella’s bedside. There is no way that we would leave our girl here unattended. It is definitely not safe like the NICU.

We are hopeful that the echo will go well, we can grab our new diuretics prescription and that we can go home again.

As you might imagine, we were already exhausted with the everything going on the past few days. Today’s events just added to it and we are beyond exhaustion.

Our physical bodies may be depleted, but our spirits remain steadfast in our Lord.

All we know is that everything that happens is part of His plan, but sometimes the plan can be incredibly painful.

Please pray that all three of us would be refreshed tonight, and that we would be discharged from the hospital tomorrow.