It’s been a couple weeks since we blogged. Obviously, we are exhausted with just the business of having a newborn at home and another in the hospital. However, we’ve had a bit more to deal with than we would have ever expected.
Michael Note: This post is a long time coming and covers a lot of detail. We’ve been through a lot and are just now getting back to our normal selves.
I was released on the 11th, as Michael indicated and we were resting at home by early afternoon. The next couple days were not very noteworthy. My pain meds got messed up (The on call doctor had illegible writing) and I quickly realized how much I needed the correct dosage. The nurses at the hospital helped us get that sorted out really quickly- even ribbing the doctor for (paraphrasing) “leaving a woman who just delivered twins by c-section with out the sufficient dose to even take the edge off!” That gave us a good laugh.
We took a few visits to NICU and had good reports on both babies each day. The nurses kept suggesting that Darcy Jane was close to going home but also warned that Declan would be there longer.
Grammie and Pappy come to visit
My parents arrived on Thursday (Oct 13th). Gillian was thrilled to see her Grammie and Pappy and thought is was especially great to have all of her grandparents around for a few days. We were grateful for her to have some “normal” time with all of us before any siblings came home. I was thankful to have my parents in my home. My mom helped me with some baby laundry and some last minute nursery preparation.
Michael and Pappy went to R2LV on Saturday (Oct 15th) and Gillian got to join them. It was a great photo opportunity and I think we all know what Gillian wants for Christmas.
Rooming in at NICU
While the others were at R2LV, Grammie, Bri and I went to visit the babies in NICU and had a rather frustrating time. Because of a couple of difficult feedings with Darcy, an issue was raised about whether or not Michael and I were prepared to care for her at home. In order to quickly put that matter to rest and to get her home quicker, Michael and I agreed to spend that night in NICU and take care of her with out the nurses’ help. Further discussion with the nursing staff clarified that my physical discomfort (c-section, blood transfusion, stiff neck) and fatigue and had been misinterpreted as an uncomfortableness with the babies. We were assigned a wonderful night nurse who was mystified that anyone would question our comfort or ability with our kids. After 4 consecutive successful feedings, we went home at 2:30 am to catch up on sleep with plans to bring home Darcy Jane the next day.
Darcy’s scheduled release day
Michael and I got to bed around 4am and decided to sleep in. However, I was too excited and was up for breakfast. Our friend Brittany was kind enough to take Gillian to a birthday party that afternoon. Michael and I took our parents to a celebration lunch and then we headed to the hospital to pick up our daughter. Our parents drove to our house to wait for us.
On the elevator ride up to the 3rd floor of the hospital, I commented to Michael that I felt better than I had in weeks. I was starting to get my energy back and had stopped taking some of the pain medication that morning.
When we got to NICU, I propped my legs up because they were still pretty swollen. Michael signed most of the discharge paperwork. I was feeling a little tired from lack of sleep and so I watched the scene while contemplating what it would be like to have our girl at home.
As I sat there, I thought about all I’d been through in recent weeks and then I felt compelled to pray: “Lord Jesus, if there is any reason that I am not well enough to take my daughter home today, please make that issue manifest now–before we leave the hospital with her.” The moment that I finished praying, I started feeling strange. I felt my blood pressure raise significantly, my chest tightened, my back felt constricted and both arms felt like they had blood pressure cuffs on them. I was terrified and couldn’t express myself. I told Michael “I need to have my blood pressure taken right now.” He gave me a quizzical look but I kept reiterating to him and the nurse, “I need to have it taken right now.” I was thinking, “I feel like I’m going to have a stroke or heart attack” but I couldn’t bring myself to say that for some reason. Perhaps, I felt like that would sound too dramatic but I really wasn’t thinking very clearly.
In later conversations that we had with the NICU staff, we learned that while NICU nurses customarily save the lives of infants, most have less experience with dealing with sick adults. The nurses did ask me a few questions to which I mostly answered “yes” and “no”. Yes, my chest was tight. No, I was not short of breath.
The charge nurse overheard the types of questions being asked and came over. She asked me, “Do you need to go to ER?” I just about pounced on her. “Yes!, Yes!” She took command of the situation and sent me to ER with two nurses. She told them the quickest route and also told them to make sure I was seen right away. It took about 20 minutes from the onset of symptoms until I was being diagnosed in ER. I was very scared but because of the prayer that I was compelled to pray before the episode started, I felt assured that I was in God’s hands. It was a very odd mix of feelings. I knew that my circumstances were in God’s control but I didn’t know the outcome.
Michael Note: Of course my experience that day and hers was very different. When Shannon first said “I need someone to check my blood pressure!” I was confused. My thought was “you’re not a patient here any more – they’re not going to do that.” At that moment I didn’t realize she was having a medical emergency. The hospital has something called MERT: Medical Emergency Response Team. If you are with someone at the hospital (who is not admitted) and you realize they are having a medical emergency you can call MERT. Tell a nurse and they will call a team to come handle it. This is what should have happened, but for a while it was difficult to understand that this was serious and not just a panic attack. My initial thought was something along the lines of “oh great, now we’re going to be in ER for a while and won’t be able to take Darcy home.” I thought about what a hassle it was going to be and that our parents were at home waiting on us. Had I known then what I knew a few hours later (or came to terms with by the next day) I would have called a MERT and it would have been treated much more seriously. Instead we awkwardly looked for a wheelchair while Shannon sat there, worried for her life. At one point I went over to check on her and she did not look good. She was panicked and sweating. Finally a wheelchair got there, the charge nurse sent two nurses to help take her down to ER. They took it very seriously and helped her get admitted quickly. Then an ER Triage nurse came over to take Shannon back to get checked out. She said “my name is Darcy” and Shannon and I laughed. At that moment we knew that God was looking over us and that everything would be fine.
After she got settled and started feeling better they checked her blood pressure it was very high, like 185/95. During her attack it had to be in the 200’s.
What the HECK was THAT all about?
In the triage room, I sat up on a gurney and it was laid it back to a reclining position. I immediately felt the symptoms begin to subside. The ER staff took my blood pressure and it was about 180/98. My normal BP is 110/70. I had to wonder how high it was at its peak. The EKG appeared normal. The doctor asked several questions and then stated that he felt that I was not experiencing a cardiac incident. I was admitted to a room in ER. The doctor ordered an ultrasound of my legs to check for blood clots (I’d had an ultrasound on my right leg when I had edema during my first hospital admission), labs and a CT Scan. He also did an exam to rule out internal bleeding.
To me, it seemed like the tests all happened very quickly. Michael told me later that it took about 3 hours to complete them and get a diagnosis. The blood and urine lab results came back and the initial diagnosis was possible PIH (pregnancy induced hypertension also known as pre-eclampsia.) Although rare, it can onset after delivery. I was relieved at this possibility as I had PIH with Gillian and had an idea of what to expect.
Around 8 pm, the doctor came back with the CT results. I didn’t have PIH. I had experienced pulmonary embolism and thrown 2 or 3 tiny blood clots to my lungs. It was difficult to keep up with the next things he said as I tried to process “pulmonary embolism”. I remembered Googling that term when they did the ultrasound on my leg in August. I couldn’t remember the details. I didn’t want to remember them. It was enough to remember that it scared the snot out of me.
The doctor was still talking…He discussed the meds I would be given: A blood thinner, blood pressure medication, morphine (I had a migraine and stiff neck and could not have Ibuprofen) and something for nausea. (in case the morphine upset my now empty stomach). When he left the room, I think I cried a little bit and then asked Michael not to tell me about pulmonary embolisms.
Michael Note: While waiting for all the results I had researched online and figured out what they were testing her for. When the doctor came in I named it. But I knew better than to tell her anything else. I simply told her that she was past the ‘danger zone’ as it had been about 4 hours since the embolism.
Just when you think you are out….
Michael stepped out to call our parents, let them know what was happening and make arrangements for Gillian. That’s when I first started sobbing. The hardest part of everything I’ve been through is witnessing the impact to my family. I hated the thought of Gillian being told I was readmitted to the hospital. I hated that Michael had to call my parents because I couldn’t bring myself to do it. I hated to see him with his game face on for my benefit and knowing that we both felt like falling apart at this point. I couldn’t even think about how close we’d come to taking Darcy home and now we didn’t know how long I’d be back in the hospital.
I was definitely in shock. I imagine that Michael was too. The evening was surreal and it was like we were experiencing a time anomaly. My parents initially came to ER but we had since sent them home to be with Gillian. One of my primary concerns was that she would get to sleep in her own bed. Michael and his dad drove to my house to pick up things for another hospital stay (our overnight bag wasn’t even unpacked from the last discharge). Michael’s mom came to stay with me while I waited to be transferred to another room. When she came in to the room, the look on her face told me just how awful I looked. We both managed not to cry and settled in for a nice visit instead. I got to hear some new stories about her from when she was a kid.
Tears and laughter
I did fall apart through out the day. I sobbed with out warning. I sobbed if I was alone for a minute. I sobbed when Michael came back in the room. I sobbed over the events of the day and the way the day was supposed to have gone. I sobbed at the thought of how much worse it could have gone. I couldn’t even tolerate the thought of my children losing their mother or my husband losing his wife. I felt a little sorry for myself for a change and sobbed about the last 10 weeks of my life. Oh what a headache I had after a few hours.
The Morphine made me giggle quite a bit, when I had first been injected. However, it hadn’t helped my stiff neck or the off the charts headache that I now had. After a few hours of lying on the hospital gurney with nothing to eat or drink, I felt pretty lousy and so I pressed my call button for my nurse. When she arrived, she was clearly flustered and really dismissive. She was also seemed unfamiliar with my diagnosis and which meds I’d been given. I decided that I’d rather hold off on taking any meds until I was transferred somewhere that was presumably less hectic than ER. At that point, I assumed, I’d be transferred very soon.
Waiting in limbo
When Michael got back from his trip to our house he was surprised that I was still in the same room. He wanted to call the nurse but I asked him to hold off. I didn’t want to deal with the flustered nurse and I was hoping he could find a charge nurse in the hall or something. That’s about the time that it occurred to us that I wasn’t being monitored. I had a pulse ox on my finger but hadn’t had my blood pressure taken since I was given meds at 8:00 pm. It was now well after midnight and my nurse had never come to take vitals or check in on me.
After another hour of waiting, fed up, Michael pushed the call button. When the nurse came in, she led with “What do you need?” We calmly questioned whether I should be monitored or have my vitals taken. The nurse proceeded to rant and melt down. When asked about being transferred to a room she informed us that we were there for the night as there were no rooms available in the ICU. She asserted that I was the “most stable patient she had right now” and that “there was always one that she couldn’t get to” or some such thing. At that point, I wanted her out of the room before Michael or I lost it. God gave me the grace to tell her to “go and look in on your other patients who clearly need you more than I do.” She left the room. I then asked Michael to go to the maternity ward and ask to speak with a charge nurse to see if she could advise how I might get some better care.
That’s what he did and I started praying. With in 10 minutes, Michael returned to the room. He told me that the maternity charge nurse had asked him to return to the room while she “took care of it”. In the mean time, the ER nurse returned with a whole new demeanor. We surmised that she saw the Maternity nurse speaking with her charge nurse. She came in to take my vitals and started asking the questions that should have been asked several hours before. When she asked if I was “thirsty”, I didn’t know whether to laugh or cry. Before I had time to decide, the Maternity charge nurse came in like a Mother Lion and started the grand inquisition with the ER nurse. After about 4 questions had been asked, the latter stated, “I am so sorry but I have not given this woman proper care tonight. I can not answer any of your questions.” To which Mama Lion replied, “She is being transferred to Maternity right now.”
The ER nurse pushed my gurney up to three. We took an elevator ride together and she was very teary and apologetic. It seemed that she didn’t know that I’d had the embolism and she was beginning to realize how she’d put me at risk. I could sense the heaviness and fear in her spirit and so I took the opportunity to tell her about how the Lord had compelled me to pray in NICU and how I knew I had been in His hands all day.
We’ll leave the light on for you
We got to the Maternity ward before they were ready for me. As a courtesy, Mama Lion wanted to put me in any room but the one in which I’d just spent two weeks. However, it was the only room available. We were very grateful to return to room 304. In a strange way, it felt like home. One of the nurses was instructed to go to the Post Partum unit to get a memory foam mattress to put over the tri-fold labor mattress and that’s when I knew that we’d finally been upgraded to first class.
The ER nurse gave report and I was officially transferred to the care of the Maternity ward. Vitals were taken. My doctor was contacted for the first time. Meds were given. Lortab fixed all that ailed me in about 10 minutes. (Take THAT! Morphine!!) I was given ice water and apple juice and Michael and I split a turkey sandwich. I think we both felt comforted.
Just forget about sleeping
Michael decided to look in on the babies. Our sweet NICU nurse from our “room in” the night before, came down to visit me and share her support. She told me that my babies were doing great and currently in good hands with Dad. We had a wonderful visit. I shared about God’s amazing grace that day and she “drew her fish in the sand” to let me know she was also a believer. She shared briefly about some personal trials in which she had learnt to cling to the Lord.
When Michael came back, he made up his bed and we settled to sleep. Literally, 2 seconds later, my doctor walked in the door. It was just before 5:00 am. He’d been gathering my test results since he’d received the call a couple hours earlier. He drove in as soon as he could. The look of compassion in his eyes, made me love him. We’d been through a lot during this pregnancy and moreover since delivery. I realized that he genuinely cared for me and in that moment, it meant the world. I shared about God’s grace with him and almost every other person who walked through my door that day.
Having spent 3 weeks with the Maternity staff and 10 days with NICU, I’d made a lot of friends at the hospital. The hemorrhaging incident and blood transfusion made me sort of infamous but now I was the poster child of high risk pregnancy. If anyone asked me, “what happened?” I usually started by telling them, “I need to give credit to where it is due…” and went on to explain how this latest episode started with a prayer.
Between labs and visits from the patient’s rights advocate, two department heads and just about every scheduled nurse who’d ever been assigned to me during my stay at “Hotel Siena”, I didn’t get much sleep. I shared time and again about my Lord’s grace and mercy I also spoke about how the last 10 weeks had changed me as a person and how I knew that the Lord was working on my character. I began to realize that I was actually grateful for all that I had experienced.
Oh yeah, the kid…
After a bit of rest, we pondered what to do about Darcy. She was supposed to be released but NICU graciously agreed to keep her for us. They were seriously over crowded so she was moved to an overflow room a couple doors down from 304. I asked Michael to check into whether she might be able to room with us.
As soon as we received confirmation that she could come to our room, we called our parents and arranged for them to come to the hospital around the time she’d be discharged. This would be the first time Gillian would meet her sister. I started to feel really excited.
My parents arrived first. Michael was down the hall making arrangements for Darcy Jane. It was the first time I’d seen my parents since we were sitting at our celebration lunch the day before. I was exhausted, hormonal and an emotional mess. It was painful to see the fear and concern in their eyes. I sobbed a lot and laughed a lot and apologized for sobbing … a lot.
The Hematologist came in during their visit. He explained that I’d be on a blood thinner called Lovenox for the next year. (woah!) It’s an injectable, most commonly given in the abdomen. I’d have two shots a day to the stomach. (bummer) He was matter of fact about the clots and emphasized that it was good that they were so tiny. At some point he mentioned that this was a life threatening concern that we were hoping to avoid in the future. That made the three of us wince and I wished they hadn’t heard it.
Michael Note: A pulmonary embolism is a very serious life threatening event. I realized it that night in the ER and knew to keep it to myself even before Shannon asked me to not tell her about it. My non-medically-accurate explanation is that it’s like having a heart attack in your lungs. The biggest risk is within the first couple of hours. We thank God that Shannon was at the hospital when it happened and that the blood clots were small. The Lovenox should keep Shannon safe and there should be no long term effects.
Waiting for Darcy Jane
The Hematologist left. My parents and I made silly chit chat and waited for Michael to open the door. We had a few false alarms with dinner delivery and meds. Eventually, the door opened and Michael pushed Darcy Jane’s bassinet in to the room. He was followed by one of our favorite nurses from NICU. Immediately, I started sobbing. These were great big, loud, ridiculous sobs. (Like the sobs I let out as I walked down the stairwell on my wedding day.) The nurse stared at me with a bit of concern and I assured her that these were tears of joy. She helped Michael settle in to the room and I just kept crying. I don’t know what anyone else in the room was doing at that moment but I was locked on to the face of my beautiful daughter. It had only been about 26 hours since we were supposed to take her home but it felt so much longer. I was overwhelmed with gratitude for this moment and the lifetime ahead of me.
I was released the next day (October 18th) and we took our girl home. And that’s when the reality of all we had been through since August, really hit home. I had a slideshow of really scary images in my head that kept replaying. The shock and wonder was wearing off and we were left with fear and exhaustion. Hormones were still coursing through my body and I was an emotional wreck. Michael was as weary as I was and we wondered how we were going to take care of a newborn while we were this tired. I think we were both grateful that one of our twins was still being looked after by a staff of professionals.
Thank heaven for family, church and good friends. We have received so much prayer and support. And I mean real support. We are so grateful to everyone who has helped us get through a really rough time.
It’s been a couple weeks now and we’ve managed to pick ourselves up off the floor. I haven’t cried for a few days and the fear seems to have subsided. I’m excited that my boy is almost ready to come home and I feel ready for him. (As ready as you can be with twins) We are very blessed that Darcy is a mellow kid on a good routine. We hope that we can get both schedules in sync pretty quickly.
Here’s hoping that this next season is a sitcom because we’ve had about all the drama we can take.