Joel's story
As I told in the previous story, Joel was a good baby and everything seemed to be just fine the the first few days. He had his circumcision on Friday evening (March 23rd) and everything went well with the surgery. We had some trouble getting him to eat that night and did all we could to get him to wake up. He ate good once that night but again the next morning he didn't want to wake up to eat. Saturday morning was the morning I got my blood transfusion. As they were preparing everything for the transfusion, Derek was holding Joel and noticed that he turned blue. Fortunately there were many nurses in our room and they looked at him and said he needed to go to the nursery. Derek went along with Joel. At the nursery they looked him over and called in the NICU doctor who decided he needed to go the the NICU. (Derek has a more detailed account and hopefully he will add his version of the stories later) While in the NICU they realized he had low blood sugar and immediately hooked him up to IV fluids to correct the problem. Derek came back to our room noticeably upset and needed some time to process what was happening. I asked my nurse if she knew what was happening with Joel and she did not. God gave a me a peace about giving Derek the time he needed and was willing to wait on him. Before I knew it Derek was at my bedside and was able to tell me what had happened. (God was definately with both of us!!) We prayed for Joel and knew that he was in God's hands. My doctor came in and the nurse asked if I could go visit Joel after my first round of blood. The doctor gave me permission to go visit with Joel but only for a brief time. Derek decided it would be good to call someone to come and give him some support. He contacted the Bergson's who so graciously came in right away and even brought lunch! Little did we know that God was totally at work and Derek's grandparents came as well. It was such a blessing to have them there for support!! The NICU nurse came over during my transfusion to talk to me about what was happening with Joel. The NICU nurse also took some photos of Joel and Derek was able to bring them to the room since I coulnd't go and visit with him. That was so sweet and thoughtful!
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| NICU at Frederick Memorial Hospital |
My blood transfusion was finished up later in the afternoon and they had brought a pump so I could pump breast milk while Joel was in the NICU. I decided to wait until my blood transfusion was complete to pump. After I pumped, Derek walked my breast milk over to the NICU. He decided that he would visit with Joel for a few minutes while he was over there. While he was visiting with Joel he noticed that his hand was twitching ryhthmically. Joel's nurse was talking with someone else at the time. Then Derek noticed the twitching start again and this time his leg was twitching with his arm. Derek got his nurse then who came over and put her hands on Joel and stated he was having seizures. He got some medication then to control the seizures. Meanwhile I was back in the room and Derek's grandparents had returned from running an errand for us. God knew what He was doing and knew that we would benefit from their support. When Derek returned and told us what happened, his grandparents immediately began praying for us and Joel. Later that evening the NICU doctor came over to my room to let us know that Joel had been for an MRI and had an EEG and they did not have the expertise to interpret the results. He felt it would be best for Joel to go to Johns Hopkins NICU that night. We went to visit with Joel immediately after that and due to my weakness did not stay very long. We asked them to call us when the ambulance arrived so we could say goodbye to Joel. The ambulance came a little before midnight. I was able to hold Joel before he had to leave. They put in what looked like an incubator on wheels and had everything they needed right below it. We decided since it was so late, Derek would stay with my at the hospital since they would not be doing anything special that night at Hopkins. We were unsure what was going to happen the next day with my discharge so we decided to wait and see. I had to sign some papers giving permission for them to take Joel and for Hopkins to recieve him.
The next morning they redid my labs and my blood count was high enough to be relased. The doctor allowed us to be discharged early so we could go and be with Joel. My parents came down to help us go home from the hospital. It was very sad to be leaving the hopsital and going home without Joel but we knew that he was where he needed to be.
Throughout our hospital stay friends and family were sending encouraging messages and scripture. A friend had sent a scripture reference to a verse that states "my grace is sufficient" - in her text she stated she did not know why but God put it on her heart to share this scripture with me. In the car we have the newest Shane and Shane cd and there is a song titled "My grace is sufficient" so I decided to play this song on our way home. It was a song I had liked before having Joel but wasn't sure why. This song goes through many scenarios and is just a great reminder that God's grace is sufficient! We both cried during the song and just felt comforted by God's grace.
Because of the blood loss I had to take it easy and was instructed I could only make short visits to be with Joel. My parents came back to the house with us and helped us get settled in. We decided that it would be best for me to rest before going to visit with Joel but wanted someone to be there with him. We called friends and Derek went to Hopkins with Craig and I rested and traveled over later in the evening with Stacey. My parents also traveled over to visit with Joel. It was so hard to leave him there but we knew he was where he needed to be.
The next week we kept the same schedule thanks to lots of help from our friends and church family. Derek would go over in the morning and I would rest until the early afternoon and then travel over to see Joel. Rounds took place in the morning so Derek had lots of interaction with them and was able to update everyone on all the happenings. Towards the end of the week I was able to arrive a little earlier and was able to talk with some of the doctors.
I will write about what I remember of his stay there but Derek is much better with the details!
03/25/12
When he arrived he was on oxygen and on an IV receiving fluids. He had received a medication at Frederick for the seizures which sedated him some. He was also receiving an anitbiotic because there was concern about a possible infection. Joel was put on a continuous EEG to montior his brain activity so that if he had any more seizures it would be documented. He had little probes inserted under his skin on his head. That evening we were able to hold him and they wrapped his head so we wouldn't move the probes.
Each day there was rounds where there would be a group of doctors and they would come to the bedside and discuss Joel's case and check him out. Derek really enjoyed rounds and always asked good questions!! Joel was a nurse practitioner baby so all questions went through a nurse practitioner. He was also followed by a neurology team. The neurologist in charge the first week he was there reminded us of Albert Einstein. All the doctors had great bed side manner and were more than willing to answer questions. The nurses Joel had were also great and took really good care of him :)
03/26/12
The continuous EEG was taken out and the results came back with no visible seizure activity. In this picture you can see the blue dye they used to place the probes. They also took him off the oxygen :) At some point during the week they repeated an EEG which is where they attach a bunch of probes and it looks like spaghetti coming off his head. This test also came back normal.
At some point early in the week we met with someone from genetics as they were running several tests to see if Joel had a genetic disorder. All the doctors started broad with their testing and continued to get more specific with their testing and many of the tests run were for rare conditions.
03/27/12
Joel got to eat today! Around lunch time I got a phone call from Derek saying they decided at rounds he could eat. I had been pumping all along and taking in my breast milk so he was able to have breast milk through a bottle. This was a big moment because he was still on the IV but they wanted to see if he could maintain his blood sugar levels. They put him on a three hour eating schedule. When I arrived that afternoon he was due to eat. I was suprised when the nurse asked me if I wanted to nurse him. He didn't have any problems nursing and it was such a special moment! He was still receiving the IV fluids at this time.
03/28/12
Joel is IV free! He was able to maintain his blood sugar levels on his own. He only had one dip in his blood sugar level after he started eating and he was crying to let the nurses know he was hungry. He was one happy baby :) In the evenings we would often eat a late dinner when we got home. When we got home this evening we had a package at the front door from Hillcrest. It was a gift of snacks and gas cards to help us out while we were traveling back and forth. We were so blessed by this gift and were amazed at everyone's generosity.
03/29/12
Joel was recommended for a repeat MRI one day this week. The MRI from FMH was difficult to read. They also told us they would be sharing the MRI and Joel's case at their Neurology conference they have on Fridays as Johns Hopkins. They had also put him back on the continuous EEG one of the nights but had decided to stop the study before I arrived because it wasn't giving them any new information. We had some difficulties with Joel's nurse this day. She had a negative attitude and she took a while to take his blood sugar which made him very upset because we had to stop nursing so she could do the test and he was very hungry! God was definitely testing our patience this day! Right before we were leaving that night the nurse practitioner came in and his oxygen saturation was going below the level they would like to see it and decided to put him back on oxygen. The oxygen never seemed very helpful because most of the time the canula wasn't even in his nose :) When we got home this evening we had a meal delivered by Derek's co-workers and it was very tasty!!
No new tests and no new ideas came from the Neurology conference. They let us know that they would just be watching him over the weekend and wouldn't do anything new.
03/31/12
Throughout the week, Joel was having difficulty maintaining his body temperature. They were having trouble with their heating unit and it would get quite cold in there at night the nurses told us. They would wrap him up with lots of blankets but he would still be below what they would like to see. We would take his temperature before each feeding. Over the weekend we found out from a nurse that he was right under a vent and the cool air was blowing on him. She felt like they hadn't given him a fair chance.
We started staying at Johns Hopkins Children's House which was right across the street from the hospital. Derek needed to return to work and this would allow me to be close enough to be with Joel during the day. It was a wonderful place and we were very blessed to have found out about it. We were able to have the nurses call us when Joel needed to nurse. It was still hard to say goodbye at night but comforting to know we were so close.
04/02/12
Joel got a new neurologist and it was now my turn to be their during rounds. She didn't have much to new information to share. They wanted to repeat the EEG now that the seizure medication was out of the theraputic levels to make sure they didn't miss anything. She also told me that if all went well he would be able to go home tuesday or wednesday unless someone changed her mind. That was exciting to hear! That night their was pizza provided at the Children's House - another blessing that we didn't have to worry about dinner :)
04/03/12
Joel got moved to a bassinet because he was able to hold his body temperature!! Derek decided to wait to go into work in case Joel was sent home. We talked with the nurse and she couldn't tell us for sure so Derek waited for rounds. We were anxious as we waited and they ended up coming to Joel last. She told us that she was going to discharge him and let us know that he would need to have a follow up with the family doctor as well as an outpatient check-up with the neurology department. Danielle had come to visit the day before and stayed overnight which was a huge blessing because in order to check out of the Children's House you need to complete a list of cleaning tasks. Danielle was a huge help to checking out!!
Throughout the process the doctors seemed very concerned about Joel and I think some are still convinced there is something. It seemed as though they were a little hyper analytical of some of his symptoms and at times told us it was common for full term babies to have similar symptoms. We were very pleased with his care at Hopkins and are so thankful that he is healthy and home with us! We are so greatful for all the prayers and support everyone provided us during this time. We pray that God will bless all of you as you have blessed us :)
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