Day 1 - July 15
Francesca Jo was born at 6:26 a.m. and they did put her directly on my chest. I stared in awe, we took pictures, and for a few minutes things were perfect, we were right on track. Then things changed. Drastically. They were worried about her labored breathing and after calling additional people in the room to examine her, they took her to the nursery. She was put on oxygen, did a
chest x-ray and ran blood tests. The chest x-ray showed haziness, they said it could just be access fluid from birth but they would treat it as worst case scenario (pneumonia). And she had to stay in the nursery until her oxygen levels went up. The test results also showed she had low blood sugar. When they tried to feed her, she was unable to keep it down so they started gavage feedings. By the end of the day 1 our baby girl was hooked up to oxygen, had a "club" hand for the IV and had a tube down her nose for the gavage feedings. It was a rough day for all.
Day 2 - July 16
A new day, full of so much promise. They were removing the tube to try and breast/formula feed. If she kept the food down and her blood sugar levels stayed normal, she would be able to come in our room. If. If. If. They did a repeat chest x-ray and the fluid had cleared up. One step in the right
direction! But...white blood cell count was still low, so she would be on antibiotics for another 24 hours. Her blood sugar was also still low. Another night in the nursery.
Day 3 - July 17
One step forward, two steps back. That's what it started to seem like. Every time we would get one issue on the right track, something else would surface. On day 3 that something else was her bilirubin. Her blood sugar was good so they were going to start weaning her off the IV. But the elevated bilirubin meant she would need to go under the lights and could only come out for 30 minutes to eat. Considering we already had limited time with her since she couldn't be in my room, this was heartbreaking. And I was supposed to be discharged. How was I going to go home without my baby? Thankfully they had empty beds and said I could just stay in the room. There would be no more vital checks, no more free food, but I would have somewhere to stay so I didn't have to go home without Francesca, for now.
The good news was, with her being off the IV she could come to my room to eat. It was our first glimpse of freedom, but I knew I had to be quick because the lights were waiting. I felt hopeful but sad as I took her back to the nursery. Little did I know everything was about to change. As we entered the nursery one of the nurses was on the phone. It was Francesca's doctor, and he wanted to talk to me. "Everything is okay," he said, "Francesca is fine..." I wasn't sure I was believing that. Then he continued..."but the newborn screen test showed that she tested positive for something called galactosemia, her body does not have the enzyme necessary to break down the sugars in dairy." He explained that it was treatable by diet and we were very lucky to find out so early because many babies die before they ever know something is wrong. Then he said something that rocked me to the core, "stop breastfeeding immediately." I had just experienced so much joy from having her in my room and breastfeeding her. And then I realized an act I was so excited about and thought was giving my baby life was poisoning her. That was a lot to wrap my head around. I took some notes and headed back to my room to share the news with Chris.
Honestly, at this point I wasn't feeling terrible about it. The doctor made it seem like since we caught it so early, it would be fine. She just wouldn't be able to have dairy and other foods that contain galactose. Didn't seem so bad. Only, that was the simplified version. We soon found out there was much more to it. Damn Google. Chris started to relay the information to me, I didn't want to hear it. Things like "learning disabilities", "liver failure", "premature ovarian failure". At this point I pretty much went silent. Even my best friends weren't hearing from me. I felt bad but I wasn't ready to talk about it. It made me sick to think about. Why? Why was this happening? My mind started to race, and so did my heart. I started feeling like an anxiety attack was around the corner. Thankfully, I had not yet been discharged. The nurse brought me some meds to help me relax and sleep. It was still a pretty restless night.
Day 4 - July 18
This day is pretty much a blur to me. I cried a lot, I remember that. She was still under the lights for most of the day so I couldn't see her much. By that evening her bilirubin was better and her weight had went up a little bit. And I was finally ready to talk, my friends needed to know and I needed them- so I made some phone calls. Small steps.
Day 5 - July 19
It was never ending. The worst roller coaster ride of my life. Some of her blood tests came back concerning. Specifically her ATTP level which could indicate a clotting issue. Immediately I went back to what the doctor said when we found out about the galactosemia, "some babies bleed out and you never knew anything was wrong." This can't be happening. Thankfully, it wasn't. But they were concerned and did a scan of her head to rule out a brain bleed. They checked her liver panel and that was perfect. Her bilirubin had stabilized. But we weren't going home until they figured this out. What was this, set back 583?
I had to leave the hospital. As much as I appreciated the room, I had to get out. Thankfully the hospital has an "Ellison room" for moms to stay overnight when they had been discharged but their babies hadn't. I reserved one of the beds (two in a room, divided by a curtain) and Chris and I headed home for a little bit. Big.Mistake. It was awful. Walking into the house filled with Francesca's swing, Francesca's pack and play, Francesca's books. And no Francesca. I lost it. It wasn't right to be there without my baby. It wasn't the plan. And I started to fear I would never bring her home, that she would never experience any of the things waiting for her or the dreams I had for her. It was probably my darkest moment; all I could do was cry.
We stayed long enough to take showers, have some food and pack new clothes and then headed back to the hospital. There was nowhere else I wanted to be. And once I had Francesca in my arms, I felt better. The only time I really felt at peace was when I was holding her. It was hard to look at her and think she was anything other than a perfectly healthy baby girl.
Day 6 - July 20
Her bilirubin was back up, so back under the lights she went. They came to take her blood to recheck the ATTP and couldn't get it. She was screaming. And they were talking about repoking. Tears
streamed down my face, I had to walk away. Finally they called a nurse from the NICU. I couldn't help but be concerned when she came in. She had to be 75. My mom reassured me that meant she had lots of practice and here's where I apologize. She was great and got it on the first try. But the results still came back elevated. They had the hospital hematologist come and evaluate Francesca. She told me she was concerned about the level but didn't see any signs of internal bleeding. She also told me that the results can be skewed by a hard blood draw. HELLO, that is all they have had. She mentioned an artial stick but they don't recommend using that method with someone who might have a clotting disorder. I was losing my patience. The kid's blood is clotting before they can get it out. Doesn't really seem to have a clotting problem to me!
I went back and forth about going home for the night. I decided to stay. I wanted to go back to the room and have a good cry. But when I got there someone else was staying in the other bed. I felt uncomfortable and called Chris, I decided to go home for the night, or so I thought. In tears I met him in the lobby and walked out to the car. We had not even gotten on the highway when I told him to turn around. I couldn't leave her, even if it meant sharing a room with a stranger. I think Chris was somewhat relieved. And I was so thankful to have an understanding husband who immediately turned around, no judgement about my 46 mind changes in 20 minutes.
Day 7 - July 21
Her bilirubin was down after spending the night under the lights. Since they couldn't get a free flow for the ATTP test they ended up doing an artial stick; she clotted fine and the results came back normal. Liver panel was good. (Liver function is a concern with galactosemia) The doctor came in to see her and after looking over the test results and talking to the hematologist and the specialists at Detroit, everyone was in agreement. It was time for Francesca to go home. I couldn't believe it. The last few days had been so frustrating and filled with so much uncertainty and false hope and now - we were going home! I called Chris and told him he should come soon. When he asked why I replied, "because we need a car seat to take our baby home." We walked out of the hospital about a week to the minute Chris and I had arrived after my water broke. Jesus had answered Francesca's prayer (and ours)! But we knew this wasn't the end of the roller coaster journey. With a condition like Galactosemia, it was likely just the beginning.
Francesca Jo was born at 6:26 a.m. and they did put her directly on my chest. I stared in awe, we took pictures, and for a few minutes things were perfect, we were right on track. Then things changed. Drastically. They were worried about her labored breathing and after calling additional people in the room to examine her, they took her to the nursery. She was put on oxygen, did a
chest x-ray and ran blood tests. The chest x-ray showed haziness, they said it could just be access fluid from birth but they would treat it as worst case scenario (pneumonia). And she had to stay in the nursery until her oxygen levels went up. The test results also showed she had low blood sugar. When they tried to feed her, she was unable to keep it down so they started gavage feedings. By the end of the day 1 our baby girl was hooked up to oxygen, had a "club" hand for the IV and had a tube down her nose for the gavage feedings. It was a rough day for all.Day 2 - July 16
A new day, full of so much promise. They were removing the tube to try and breast/formula feed. If she kept the food down and her blood sugar levels stayed normal, she would be able to come in our room. If. If. If. They did a repeat chest x-ray and the fluid had cleared up. One step in the right
direction! But...white blood cell count was still low, so she would be on antibiotics for another 24 hours. Her blood sugar was also still low. Another night in the nursery.
Day 3 - July 17
One step forward, two steps back. That's what it started to seem like. Every time we would get one issue on the right track, something else would surface. On day 3 that something else was her bilirubin. Her blood sugar was good so they were going to start weaning her off the IV. But the elevated bilirubin meant she would need to go under the lights and could only come out for 30 minutes to eat. Considering we already had limited time with her since she couldn't be in my room, this was heartbreaking. And I was supposed to be discharged. How was I going to go home without my baby? Thankfully they had empty beds and said I could just stay in the room. There would be no more vital checks, no more free food, but I would have somewhere to stay so I didn't have to go home without Francesca, for now.
The good news was, with her being off the IV she could come to my room to eat. It was our first glimpse of freedom, but I knew I had to be quick because the lights were waiting. I felt hopeful but sad as I took her back to the nursery. Little did I know everything was about to change. As we entered the nursery one of the nurses was on the phone. It was Francesca's doctor, and he wanted to talk to me. "Everything is okay," he said, "Francesca is fine..." I wasn't sure I was believing that. Then he continued..."but the newborn screen test showed that she tested positive for something called galactosemia, her body does not have the enzyme necessary to break down the sugars in dairy." He explained that it was treatable by diet and we were very lucky to find out so early because many babies die before they ever know something is wrong. Then he said something that rocked me to the core, "stop breastfeeding immediately." I had just experienced so much joy from having her in my room and breastfeeding her. And then I realized an act I was so excited about and thought was giving my baby life was poisoning her. That was a lot to wrap my head around. I took some notes and headed back to my room to share the news with Chris.
Honestly, at this point I wasn't feeling terrible about it. The doctor made it seem like since we caught it so early, it would be fine. She just wouldn't be able to have dairy and other foods that contain galactose. Didn't seem so bad. Only, that was the simplified version. We soon found out there was much more to it. Damn Google. Chris started to relay the information to me, I didn't want to hear it. Things like "learning disabilities", "liver failure", "premature ovarian failure". At this point I pretty much went silent. Even my best friends weren't hearing from me. I felt bad but I wasn't ready to talk about it. It made me sick to think about. Why? Why was this happening? My mind started to race, and so did my heart. I started feeling like an anxiety attack was around the corner. Thankfully, I had not yet been discharged. The nurse brought me some meds to help me relax and sleep. It was still a pretty restless night.
Day 4 - July 18
This day is pretty much a blur to me. I cried a lot, I remember that. She was still under the lights for most of the day so I couldn't see her much. By that evening her bilirubin was better and her weight had went up a little bit. And I was finally ready to talk, my friends needed to know and I needed them- so I made some phone calls. Small steps.
Day 5 - July 19
It was never ending. The worst roller coaster ride of my life. Some of her blood tests came back concerning. Specifically her ATTP level which could indicate a clotting issue. Immediately I went back to what the doctor said when we found out about the galactosemia, "some babies bleed out and you never knew anything was wrong." This can't be happening. Thankfully, it wasn't. But they were concerned and did a scan of her head to rule out a brain bleed. They checked her liver panel and that was perfect. Her bilirubin had stabilized. But we weren't going home until they figured this out. What was this, set back 583?
I had to leave the hospital. As much as I appreciated the room, I had to get out. Thankfully the hospital has an "Ellison room" for moms to stay overnight when they had been discharged but their babies hadn't. I reserved one of the beds (two in a room, divided by a curtain) and Chris and I headed home for a little bit. Big.Mistake. It was awful. Walking into the house filled with Francesca's swing, Francesca's pack and play, Francesca's books. And no Francesca. I lost it. It wasn't right to be there without my baby. It wasn't the plan. And I started to fear I would never bring her home, that she would never experience any of the things waiting for her or the dreams I had for her. It was probably my darkest moment; all I could do was cry.
We stayed long enough to take showers, have some food and pack new clothes and then headed back to the hospital. There was nowhere else I wanted to be. And once I had Francesca in my arms, I felt better. The only time I really felt at peace was when I was holding her. It was hard to look at her and think she was anything other than a perfectly healthy baby girl.
Day 6 - July 20
Her bilirubin was back up, so back under the lights she went. They came to take her blood to recheck the ATTP and couldn't get it. She was screaming. And they were talking about repoking. Tears
 |
| Dear Jesus, I'm ready to go home from the hospital now. Praying you can make it happen. Love, Francesca |
I went back and forth about going home for the night. I decided to stay. I wanted to go back to the room and have a good cry. But when I got there someone else was staying in the other bed. I felt uncomfortable and called Chris, I decided to go home for the night, or so I thought. In tears I met him in the lobby and walked out to the car. We had not even gotten on the highway when I told him to turn around. I couldn't leave her, even if it meant sharing a room with a stranger. I think Chris was somewhat relieved. And I was so thankful to have an understanding husband who immediately turned around, no judgement about my 46 mind changes in 20 minutes.
Day 7 - July 21
Her bilirubin was down after spending the night under the lights. Since they couldn't get a free flow for the ATTP test they ended up doing an artial stick; she clotted fine and the results came back normal. Liver panel was good. (Liver function is a concern with galactosemia) The doctor came in to see her and after looking over the test results and talking to the hematologist and the specialists at Detroit, everyone was in agreement. It was time for Francesca to go home. I couldn't believe it. The last few days had been so frustrating and filled with so much uncertainty and false hope and now - we were going home! I called Chris and told him he should come soon. When he asked why I replied, "because we need a car seat to take our baby home." We walked out of the hospital about a week to the minute Chris and I had arrived after my water broke. Jesus had answered Francesca's prayer (and ours)! But we knew this wasn't the end of the roller coaster journey. With a condition like Galactosemia, it was likely just the beginning.
