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We made it! It’s time to find out just how Loghan’s diaphragmatic hernia was incidentally diagnosed and what led us to finally admit her to the Children’s Hospital (Castle). If you’re just joining me, please check out Loghan’s Story here to catch up!
January 23rd, 2019, I picked Loghan up from daycare and headed home but something felt “off”. She was acting lethargic and refused to nurse and I had decided to leave my breast pump at work. With Paul being out of town this week for work, I dialed up one of my best friends, Denise, to come hang out with Loghan while I ran to get my pump. If you are a nursing mama then you know what I’m talking about when I say, “I thought my boobs were going to explode!”
When I got back home, Denise also made the comment that Loghan seemed really tired and “out of it” but she didn’t have a fever or anything so I was wishy washy about bringing her to acute care. I was also leery about going in because of the multiple times I had gone in before for issues and getting the same canned response that I just had a fussy baby. However, my MOM tuition was telling me to go in, so off to the clinic we went. They checked her over and ran some tests and of course, everything came back normal and I was told to follow-up with Loghan’s pediatrician if I still had concerns.
Fast forward two days later and I still had concerns. I toted Loghan off to the clinic, yet again, and prepared myself for more fussy baby remarks and that is exactly what happened. Loghan’s pediatrician said she looked fine and that she was just a fussy baby. She then advised to bring up her eating concerns with the GI doctor (see my previous post about my feelings towards him) at our next visit.
I not so politely told her that I wasn’t going back to the GI doctor when he barely looked at her and didn’t run any tests the last time we were there. Since she could obviously tell I was upset, she offered to call the GI doctor and talk to him. After about a 10-minute conversation she came back in the room and told me that she and the GI doctor thought that I should admit Loghan to the hospital. What?!
How do you go from telling someone they have a fussy baby to now thinking they need to be admitted to the hospital? This didn’t make sense to me and I didn’t want to make the decision alone so I called Paul and put him on speaker phone with the pediatrician. Paul is now just as frustrated as I am because we have done so much back and forth with no answers that it is getting ridiculous. If we were going to admit her to the hospital then we wanted to know what the plan would be when we got there. She couldn’t tell us that. Inevitably, the decision was mine because I was the one there with her. With a million things running through my mind, I decided that I wanted to go home, think about it, and see if I could get her to nurse.
Before I left, her pediatrician decided to tell me that if I chose not to admit her and came back for a weight check on Monday and she hadn’t gained weight that she would pull the ‘medical necessity’ card and call child services. I bet you can all guess how well that went over – it didn’t. I was shocked to say the least, especially since I had been to see this particular pediatrician 10+ times with nothing but a fussy baby diagnosis. Frustrated, concerned and frankly, pissed off, I stormed out of the clinic.
As I left, I called my best friend Jessica and balled hysterically while cursing out the pediatrician and telling her what had just happened all at once. I bet it was a great ugly crying moment for anyone observing the rare spectacle! After she calmed me down and I got back home, I tried feeding Loghan and was relieved when she ate. Unfortunately, a few minutes later she had one of her projectile spit-up episodes and then was so tired she fell asleep in an instant. This is when reality set in – I needed to admit her.
I called the clinic and had her nurse (who I love) start the process to get her admitted to the castle. If the situation wasn’t already stressful enough, the two most important men in my life (my husband and my father) WERE NOT HOME. Not only was my husband in another state, but my dad was in another country. I decided to call my mother-in-law, also Loghan’s daycare and grandma. Of course Linda rushed over and helped me put together a bag and get the dogs settled (we have two huskies) and out the door we went.
When we checked in at the castle they sent in a couple of nurses and a resident to talk with us about what was going on with Loghan to try and figure out what was wrong and where to start. I’m now going to preface this next part of the story by saying I already felt like no one was listening to my concerns prior to arriving at the castle and it was no different at the castle. This day and the next couple days are some of the most frustrating and stressful moments of my life.
First things first, when the resident was talking about Loghan’s condition he used the term “Failure to Thrive”. I don’t know about you, but those are not easy words to hear whether you are a first time parent or not. The reason for that terminology, as I was told later, was because Loghan was having trouble gaining weight. On that same note, she had never lost weight either and she was following her own growth curve.
After talking over all of the symptoms with the castle staff, the decision was made to put in a feeding tube. This was not my decision. We sat in our room for at least two to three hours waiting for them to get Loghan ready for a feeding tube. This was their masterplan on what they thought they needed to do to figure out why she was having such difficulty gaining weight. Not only did they want to put in a feeding tube, they also wanted to take her completely off my breastmilk and on formula only. If you are a breastfeeding mama you are probably crying right now, like I was. It was one of the hardest things to hear and I made sure they knew I was against it. The formula they wanted to use was also one we had tried mixing with my breastmilk in the past to fortify it and she would not drink it. She then went on a bottle strike for a week after we tried to force her to drink it for a couple of days.
After I lost the battle with the feeding tube and breastmilk, the time had come to put the feeding tube in. I went with Loghan and held her while they put it in. This was optional, but I wasn’t letting her out of my sight. Soon after that, they hooked her up to start pumping in the formula, but before each tube feeding they wanted me to try to bottle-feed her first.
Let me tell you what I told them was the problem with this plan. There were a few things actually. One, was the formula itself. I told them she wasn’t going to drink it. Second, they wanted ME to try to BOTTLE-feed her each time prior to using the feeding tube. I laughed at them and said she wasn’t going to take a bottle, especially from me and probably not from them either. Third, they wanted to feed her every three hours. She never ate every three hours for anyone nor did she act hungry in that amount of time.
As I lost more battles with the castle staff, the time came to feed her for the first time and I was dreading it. I tried the bottle and she wouldn’t drink it. The nurse tried the bottle and she wouldn’t drink it, so, on we went to starting the feeding tube. Within five minutes of the feeding tube being on I had to page the nurse because she started spitting up. They came in and adjusted the settings and tried again in another three hours and the same thing. Again, they adjusted the feeding tube and again she spit up. Finally, they decided to take an x-ray to ensure the feeding tube was in the right place. They moved the feeding tube up a bit after that and she still spit up after turning it on. I had to plead with the nurse to skip trying the bottle at 2am so we could all get some sleep. Loghan was exhausted and I was exhausted and upset that no one was listening to me and I’m sure her daddy was getting tired of my texting him all night long. He was still stuck out of town on business trip.
Below are some pictures from our first couple of days in the castle. From left to right: Loghan and me being sleepy taking a simu-yawn selfie, my sister Andrea with Loghan (after the feeding tube was in place) and Loghan just being cute.
After an exhausting night it was time to move on to plan B, which no one knew what would be until I mentioned to one of the doctors the same thing I had told the acute care nurse, pediatrician and GI doctor over a month ago – that I could feel gassy bubbles under her ribs. Cue the incidental diagnosis. That same x-ray they reviewed for the feeding tube placement was re-reviewed and then they came in and explained that they wanted to do an additional x-ray because they thought they saw something, but said it could just be something on the outfit she was wearing. I immediately thought something was wrong and then when they came to do the second x-ray they didn’t allow me to be in the room like they had before and I instantly started to worry. Then, when the x-ray was completed, I asked the nurse if we could feed Loghan (because I was trying to keep her on her schedule as much as I could) and she asked me if the x-ray team had been in to talk to me yet. I told her that they had not and she told me that they would be in shortly to explain. RED FLASHING LIGHTS started going off!
A few minutes later, a couple nurses entered the room and I knew something bad was coming. It still kind of feels like a dream but I remember it like it was yesterday. I was in the room with one of my best friends, Krista and Linda. One of the nurses proceeded to tell me that in the x-ray it was “cloudy” where it should be clear by Loghan’s left lung but they couldn’t tell me anything more than that and a doctor would be in to discuss it further. Of course, the minute the nurse leaves Krista is on her phone using Google to try to find out what the nurse was eluding to and we come up with a diaphragmatic hernia. I know, we should not self-diagnose, but the doctors were taking, what felt like forever, and I was super impatient and stressed out.
A while later an entourage of doctors gathered in my room to explain that Loghan had, none other than, a diaphragmatic hernia. If you have followed this story from the beginning, please excuse the explanation. The doctors explained that Loghan had a hole in her diaphragm and a majority of her intestines traveled up under her left lung making it hard for her to breath. I was horrified and relieved all at the same time. I was terrified because Loghan was going to have to have a major surgery but felt a bit of relief that someone had finally figured out what was wrong. Four and half months later and I finally had my answer, but now the hard part.
I had to call Paul – remember he is out of town on business. I called him up and he was just boarding his flight so I had like a minute to get out that Loghan had a hole in her diaphragm and had to have surgery and then he had to go. That’s it. That’s all the information I could get to him. I can’t imagine what was going through his head, especially when he proceeded to get stuck on the runway for an extra two hours.
After I called Paul, I called my dad, who was in Mexico. He tried reassuring me that everything would be okay and that he would be up to the hospital as soon as they got home. After that, my Aunt Betty Jo and Sister, Andrea came up to the hospital for additional support. I didn’t want Loghan to get the feeling that something was wrong – I needed to be strong and happy for her.
Finally, what seemed like forever, Paul walked into the hospital room. The minute he walked in the door the three of us held each other and cried, cried…and cried some more. Well, Paul and I cried, Loghan probably thought we were crazy, but the only thing that mattered was that he was there with us.
That night we hung out as a family. There were more tears and questions we wanted answers to, but, there were also some laughs and lots of napping! Loghan was snuggly with her daddy and my nerves were finally starting to settle a bit. My mommy heart had taken a beating but I was just thankful we were all together.
After that, it was time to prepare for surgery, which I will talk about in the next post of this series.