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Saturday, September 15, 2012

Seraphina

***This is an emotionally disturbing post. I do not recommend reading it with children.***

Our sweet and beautiful daughter was born on September 11th. The moment we saw her, we loved her. She was happy, healthy, and there were no medical complications of any kind. Laboring her was intense, by far the hardest of my three children, but the result made it all well worth it. We had our daughter- life was good!

My husband had chosen her name months and months before, but we had waited to announce it. Her name is Seraphina- she is named after the highest order of Christian angels. He loves to tell the story of how he named her: it was during our 20 week ultrasound. We had the anatomy scan, and then the ultrasound tech flipped a button and we saw a 4D image of our baby girl. We only caught a glimpse, because she quickly hid her little face in her hands, but we did see her- and he looked like an angel. Perfect, sweet, innocent, wonderful- our baby. Kurt knew that her name had to be Seraphina, there was no negotiation- he was sure that was meant to be her name. Seraphina, she is!

We hated staying in the hospital. My pregnant intuition on Seraphina's shy and quiet personality were correct. Every time someone outside our little family would speak, she would cry. She hated being taken for tests, she hated being examined- she was extremely stressed and anxious. As soon as the hour came that I was legally allowed to be discharged (9 am!), we were out the door with our healthy baby girl. Life was good!

Being home was perfect. Seraphina settled happily into our home life, and peace washed over her. She was an excellent little baby- she would only cry to be fed (and her timing was almost exact- every two hours!) and she loved cuddles and snuggles.

The morning of her third day of life came, and we were visited by a home care nurse. The nurse examined the two of us, and said things looked good. She was a bit concerned that Seraphina's diaper changes had changed so much since leaving the hospital (she had not passed a bowel movement since leaving), but said she was reassured because she seemed active, happy, and was eating so well. We got the clean bill of health- and our family celebrated with a picnic in the front yard. It was a beautiful sunny day, a bit cool, we roasted marshmallows over the grill. Life was good!

Seraphina missed a feeding. She slept through it. I tried to feed her, but she was so exhausted. I didn't push too hard. I thought I would give her a little time. I waited.

Time slowly ticked by. Kurt and I became a bit more serious about waking her to feed. We would undress her, tickle her, mess with her feet- she would wake for a bit, and then pass right out. I could get her to latch for a few sucks, but she would fall asleep within minutes. I couldn't get the home care nurse's words out of my head: she was not worried because Seraphina was active and eating. Just to be cautious, I called our family doctor to let his office know what was going on. I won't lie- I was expecting to hear "wait it out for a few hours" and was slightly surprised when they wanted me to come in, but it made sense they would want to see us today (being a Friday), just to rule out anything serious. I told them I would be in, in about an hour or so, and we took our time getting ready to go.

We arrived at the doctor's office. I love the layout because it is a large facility across the street from the hospital, and connected to the hospital by a sky walk. My once-pre-med-mind snaps into gear and thinks of how great it is to have an office so close to the hospital- for rounds and such. My mood is calm- we had packed our little diaper bag with just enough supplies to get us through a visit. We had a video rental we would return right after. We had our day planned out. We were ready to get moving.

The doctor examined Seraphina. He said he was uncomfortable with her lethargy and her lack of desire to eat. I tried to nurse her twice while there, and both times she would latch and then drop off into slumber just a few minutes later. Admitting he was being overly cautious, only because she was a newborn, he asked us to go upstairs to the pediatric clinic and see a doctor there for her thoughts.

We walk upstairs. Harrison has a breakdown over not getting a sticker he wanted. Our normally happy guy seems totally out of sorts and nearly inconsolable- not normal for him at all. At this point I send Kurt to go into the clinic and I walk slowly with Harrison, trying to clam him down with a little 1:1 time. He stops crying, but is extremely sensitive and just cannot seem to handle much of anything. We arrive at the pediatric clinic and are shown to the room where the rest of our little family is gathered. Harrison is happy- there is a Captain America sticker outside the door, and the nurse allowed him to have it. For a moment, life is good.

The boys nitpick one another and start to be generally obnoxious. The doctor comes in and talks about blood sugar and formula feeding, and I am frustrated. Kurt takes the boys to the lobby- where there are more toys and distractions. I was not there- but apparently Harrison had another meltdown. Kurt texted me that he wanted to take the boys to the video store, and then come back when they were done- he thought they needed a change of scene. I was fine with it, and texted him it would be okay. I was fine with being alone at the appointment.

The nurse checked weight and measurements, Seraphina seemed irritated and tired. The pediatrician ordered some blood work to be done, and requested the phlebotomist to come to the office instead of us going to the lab. Two phlebotomists came upstairs a few minutes later. They didn't know what they were drawing for and seemed annoyed with the nurse that they had been called up without knowing exactly what they were going to do. The nurse got the doctor, who came in and gave them a laundry list of medical acronyms, and then left the room. The phlebotomists started to look for veins. Seraphina was extremely angry, and cried a great deal. The phlebotomists asked for me to help, by holding Seraphina's hand, trying to soothe her, and generally offering support. I took my place opposite of the exam table while they poked at her.

I apologize... this is difficult to write, because it is so emotionally difficult to remember, and going into long details helps me compartmentalize this process a bit easier. However, the next portions cannot be compartmentalized in my mind just yet, so it is more emotional than the previous writing...

The phlebotomists found a vein. They asked me to soothe Seraphina- who was crying. I placed my hands gently on my baby, and I watched as they inserted a needle into her arm. They missed the vein, and they were backing the needle out and moving it around. Seraphina was crying so hard, I was trying to console her, and then she stopped. She stopped instantly. It was like mute had been hit. She didn't just stop crying. I looked at her face, she stopped everything. I looked at the phlebotomists, who looked at me. We just stared at Seraphina- it was as if they had hit some magical nerve that had shut her off completely. She looked like a doll. Nothing more. There was no sound, no movement. Her eyes had glazed over, there was nothing there. We all stood there... she started to change from pink to grey... she started to get cool almost instantly. They told me to poke her, to wake her. They asked one another if they thought she was alright. I poked, they poked. They removed the needle. Nothing. No reaction. I touched her cheeks, I rubbed her head... nothing. Laying... eyes empty...skin turning the lightest hue of a baby-blue, her lips grey... nothing. I grabbed her, and turned her to face down in my hands. Nothing. I crouched down to look into her still-open eyes. Nothing. The phlebotomists opened the door and shouted for a nurse. The nurse came in, saw Seraphina, touched her, and yelled for the doctor. On TV, you hear the word, "Stat" thrown around pretty often. I am not sure of how often it is used, but I assure you when the nurse said it the doctor was there immediately. She came in, took my baby calmly, and started to flip her around a bit. Seraphina cried. The doctor did more flipping and movement with her, the nurse put her arm around me and asked if I was alright and wanted to sit (I was alright, I did not want to sit). Everyone in the room gave huge breaths of relief. The doctor left, and told her nurse to keep Seraphina crying. The doctor and nurse were calm. The phlemotomists and myself were not so much. I cried- what had happened started to dawn on me, and I was scared and confused, but thankful- my baby was with us. Life was good.

The doctor came in and the nurse explained she was trying to keep Seraphina crying, but it wasn't working. Seraphina's eyes were open, and looking around, but she wasn't looking at any of us, and she was quiet despite their efforts to make her uncomfortable. The doctor calmly explained we were going to move to the ER to finish the examination, just because they are equipped for emergencies if anything like that happened again. She gently took my baby, wrapped her in her blanket, and told me to follow her to the ER. She walked us there herself, and told her nurse to clear her schedule for the rest of the day and give patients to other doctors. At this point, I realized things were more serious than I had imagined.

While walking I realized that I had completely forgotten Kurt and the kids. I know, it is horrible, but trust me, my mind was too busy processing to stop and think about telling anyone what had happened. I need to let Kurt know we were going to the ER, but I didn't want to scare him or the kids. I also didn't want to try and explain what happened- I didn't want to think about it ever again. While we walked I asked the doctor if I could call my husband, and she nervously smiled and said, "Can you please do it while walking?" and I did. I calmly told Kurt we were moving next door to the ER. He seemed a little surprised (he figured that it was a defensive medicine call, rather than an emergency) and said he would meet us there. As we walked, the doctor explained that she was avoiding elevators due to wait, and apologized for taking stairs. A red flag went up, but I figured that her rationale was because she didn't want my newborn to be exposed to hospital germs, and the stairs had a number lock that only allowed hospital staff to enter. We entered the ER through another side door, and were met by nurses who knew who we were, and told the doctor they rearranged other patients so we could get the room she requested. At this point my red flag really was flying high- she had requested a certain room, with certain equipment, in the emergency wing.... I texted Kurt and told him he needed to have his mother get the kids- it was no longer appropriate for them to be with us.

Kurt and the kids arrived. Kurt saw me and knew something was wrong, and there were people looking over Seraphina and working on tests and tubes, and he left them alone. He came over and quietly asked me what happened and I couldn't tell him, I just shook my head and looked at the boys. Carter and Harrison were oblivious to any thoughts of danger or emergency. The boys have seen hospitals and their rationale is that of the innocent children they are: hospitals are for when people really need help, and doctors help, and then you go home. I was not about to shatter that, at all, especially when I had no idea of what was going on. As far as the incident in the office- there was no way I was going to tell my 5 and 7 year old about that- no way. The doctor entered and started to explain things to Kurt. She looked at the boys, looked at me, and I shook my head. She said she would discuss things later. Kurt understood. We waited on pins and needles for his mother to arrive to take the kids, while Seraphina's health and ability to respond seemed to slowly decline.

The kids just couldn't understand. Kurt and I, although not discussing it, were now very aware that things were not okay. The ER IV and blood tests wouldn't wake her. Glucose tests didn't startle her. She just laid there. The kids were happily checking out all the machines and gadgets in the ER, and chatting with staff asking questions about what they were doing. Kurt seemed so lost and confused, so I stepped into the hallway and explained what happened. He was stunned, but slipped into his ultra-rational mode: we were at the ER, where we needed to be. Seraphina is in expert hands, all we can do is wait and pray. Knowing what dangers were there and seeing our baby slowly become less and less responsive, I couldn't handle it, and neither could Kurt- so I sent them to the lobby. Kurt's mother arrived just a few minutes later and took the boys. Kurt came back and we both cried. He tried to get her to wake. He talked to her. She would slip in and out of consciousness, but it was way past the "Awww, she is just sleepy" stage.

The doctor came in and discussed all the tests she was running, and her thoughts. She explained that she felt it was the safest for Seraphina to be admitted to the hospital's ICU. We agreed. We waited while they called for more staff.

The last time we heard Seraphina cry was on our way to the ICU. They had taken her blanket off to weigh her. That was over 10 hours ago. She hasn't made a sound since, and they do not know the exact cause as to why. She has been sleeping and no one has been able to wake her since.


I will update as things change. Right now we humbly ask for prayers for our baby, and for our family. My husband has bravely agreed to stay with our boys during this time- we are attempting to soften the impact of this process as much as we are able. I am with Seraphina at the ICU of the local hospital, where she is receiving excellent care.

_________________September 17th__________________

First of all, we want to thank EVERYONE for the positive thoughts and prayers they have sent our way- we know that Seraphina is in good hands, and that God is listening!!!


Seraphina woke up during a needle-poke early the morning of September 15th! I was *so* happy to see her eyes and hear her cry! The nurses at the ICU all came in and we were all so happy- crying was wonderful to hear! It was really wonderful to be surrounded by nurses who showed such care and concern and support.

I called Kurt's phone (he was home with the boys sleeping- it was around 5:30am) and let him hear her- it was a wonderful moment to share!!! She was so alert, but bothered by lights, we kept the lights dim and I was able to nurse her! While burping her, she gazed at me and I couldn't stop smiling- my heart was so filled with joy!!! She was awake for just over a half hour- it was bliss!!! (sorry for the poor quality of the picture- I didn't want to risk a flash or bright lights to make her eyes close again!!!!)


She slept for most of the next day, with us all unable to wake her, and her pediatricians looked at her and decided to make consult calls to Iowa City's University of Iowa doctors. It was decided that Iowa City would be the best place to treat her. Kurt drove over and his dad and brother stopped by too. The moment Kurt came into the room and tried to wake her, she woke up! Kurt spent almost two hours with her!!! She was awake and alert! We all joked that Seraphina must be a Cyclones fan, because she seemed to snap out of it the moment it had been decided she was headed to Iowa City!



Kurt and I watched as the transfer team from the UI NICU arrived and took our baby. Seraphina fell asleep almost instantly, and stayed asleep the entire trip.


With heavy hearts and tears in our eyes, we drove behind the ambulance to Iowa City. (Dear University of Iowa- really? The stadium directly across the street from the hospital, and you allow *anyone* to park in hospital parking? Really? Poor planning on someone's part...)

Seraphina was checked into the UI NICU and assessed by the neonatologist on call. It was decided that they would do a spinal tap to check her for meningitis. They attemted the spinal tap twice, but were unable to get fluids. (9/16 update: they will retry the spinal tap tomorrow).


Seraphina was awake and alert until the feeding after Kurt left at 7pm. I was able to nurse her- what bliss!!! She slept through the night with us unable to fully wake her, and we had to bottle feed her breastmilk a few times, because she was too lethargic to latch. Because her overall behavior has improved, I was not overly worried- I just looked forward to the next time she would be awake! The staff would do blood work, redid her IV, and did heel sticks without her fussing- she would just sleep. It is hard to see... but again, I was very hopeful.

My hope was rewarded when they decided to give her a bath, and she woke up! She loved her little bath, and she nursed! She has been more alert every day, and much more active. With this activity comes great relief for us!!! She was able to maintain her body temperature so they moved her to a crib!!!



9/17 Update: It has been hard to try and write an update because the doctors keep changing their minds! The GREAT news is that Seraphina is now waking up more easily! The doctors are still debating on what to do- and Kurt and I ask for prayers that they figure out the best treatment and care. Thus far *most* doctors who have seen her think this:

Seraphina's large gestational weight (almost 9 lbs) caused her to have blood sugar issues- which were documented when she was born and her first days at the hospital, but weren't severe enough to flag anything. Seraphina's blood sugar, combined with an infection of some kind (still unknown- spinal tap will reveal if it is possibly meningitis) most likely caused her to act lethargic and stopped her desire to eat. Her blood sugar and infection, in addition to the stresses of the blood-work taken on the day we took her to the doctor, caused her system to shut down for a short period of time. Antibiotics are the treatment plan, doctors are currently in disagreement on length of time (it has been suggested 2-17 days more) but most seem to agree that 7-10 day treatment should be safe.  UPDATE: they later tossed this as the reason...

We are very happy that our daughter is doing so much better- and we thank everyone for their efforts!!!!




_______________September 30_________________

We were overjoyed to bring Seraphina home from the UI NICU on the 19th. Happy wouldn't begin to describe it! Although the doctors were still unsure of what caused her "spell," they were fairly confident it would not happen again. We made an appointment to see her pediatrician when we got home, and had a plan in place: if she didn't start waking on her own we would work with a geneticist and investigate further.

Then- miracles happened! Our baby woke up all by herself! That was the best way to start a day!!! Then, after her nap, she woke again!!! The rest of that day, we woke her- but TWICE she woke on her own! The next day she woke even more- we only had to wake her at night! Every day got better- every day got sweeter!


She had a pediatrician appointment on the 26th, and she was acting like a normal little two week old baby! We were overjoyed! Our family started to feel a little more calm. I even wrote three papers last week for my school! The kids did a whole week of homeschool! Our boys started to act more like their happy little selves, and Seraphina was happy to snuggle and cuddle her family members!





Our excitement multiplied when Kurt was asked for a second interview with a company in Salt Lake City. We were so excited- it was the job Kurt had wanted back in May, but didn't seem to pan out. Well- they had delays in their lease agreements, but now that it was settled they wanted to talk to Kurt! We prayed about it and booked him a round trip ticket to SLC, and a hotel room! We took the kids to see Hotel Transylvania, all of our kids! We sat in a little row, had popcorn in hand, and we looked at one another and smiled- THIS was life! Life was good!!!

Saturday evening Seraphina was fussy. She isn't normally fussy- but we attributed it to her second attempt at vitamin drops from that morning (she spit them out and cried, and had spit up a few times after that). I thought I would nurse her, just to soothe her, even though she had eaten just 90 minutes before. I sat down and started to feed her, but after a few minutes she stopped suckling. I went to unlatch her, but met no resistance, she had no suction. I looked down at her, and she wasn't moving, and it took just a moment to realize she wasn't breathing. She started to turn light grey- her lips grey lined with blue. I sat her up and started to pat her back- thinking that perhaps she had choked. Her color went from grey to a light blue to super light purple, she did not move or respond, and I yelled for Kurt. Kurt came in just as I was rolling Seraphina between my hands (think of making a dough rope, as I had remembered the doctor doing), and she let out a coughing cry and started to move. Her color slowly went back to normal.

I was convinced it was choking. I didn't want to go to the ER, I didn't want to call the doctor. It was choking- choking can happen. This is normal... right?

I had a nagging feeling that maybe it wasn't normal, so I went onto my Facebook Birth Group (the ones who threw me that amazing baby shower) and described what happened to them. Message after message was to go to the ER or at least call the doctor. I didn't want to go to the ER, but figured a call to the doctor would be a safe bet. Luckily our pediatrician was on call, and called me right back- she told me we should go to the ER immediately, and that she would call ahead and tell them we were on our way, she told me she would be working out if we should go to Blank Children's Hospital in Des Moines, or back to Iowa City. I hung up the phone and cried as I packed. I called Kurt's mother- and she and Kurt's father were there within minutes. They helped us so much- neither of us could think out a straight plan for what to do:

Seraphina was just gone... she was here, and then gone... and now, she is back... but for how long?
We had to get Seraphina to the hospital- but someone would have to drive, and the doctor told us someone would need to sit in the back and watch Seraphina...
We had two sleeping children downstairs...
We had two suitcases- one for me, and one for Kurt...
Kurt's flight was out of Des Moines at 6:30...
We had no idea if Seraphina would be in Des Moines or Iowa City...

While Kurt and I attempted to compute this (our emotionally frazzled brains were not working, at all- our hearts and minds were focused on our baby), his parents sprang to action and helped us plan. Kurt drove, I sat with Seraphina in back, Kurt's mother followed in another vehicle behind. Kurt's father stayed home with the boys.

She was seen at the local ER, and they arranged for her to be transported via ambulance to Blank Children's Hospital in Des Moines. They offered us a choice, and we decided to go there thinking it would be closer to where Kurt needed to be for his flight, and a shorter drive from our home. Kurt and his mother stayed for awhile, and made sure Seraphina was stable and okay. They went home and sent Kurt's dad home for some sleep (it is harvest and his dad and cousin farm something like 2500 acres or so...) and Kurt and his mother stayed at our house (Kurt needed to be up at 4am to make his flight).

The ambulance team needed Seraphina's car seat... problem- our seat isn't one of those you just toss a seat belt over. The nurses asked around and found an OB nurse with a car seat that would be easier to use. She came to the ER- re-belted the seat to fit Seraphina, and wished us all the best for good health and outcomes. (Only in a small town hospital would someone give their OWN car seat to a patient...). My mind didn't work, I was no help to anyone, all I could think about was my baby.

I watched as my sweet, squishy, little baby was loaded onto an ambulance and I followed behind. It was the middle of the night. I was tired. I was crying. I felt so terrible. I prayed most of the way there.


We got to the hospital and settled in. The nurses redid all of Seraphina's tubes and tape. They helped her get situated and comfortable. I followed behind, crying, and in disbelief that this was all happening.

When I finally pulled myself together, and Seraphina was resting comfortably, I took a look around.

This is a very nice place for families. Meals are provided for nursing moms, a kitchen is here with juices/cocoas/tea, there is a shower in our room, and there is a pull out bed and TV. I know it sounds really silly to list these things in a post that includes my daughter turning light blue, going non-responsive, and no one can figure it out- but I have to say, it is these really small creature comforts that can make situations like this more bearable- at this time I was completely unable to care for me, and the hospital's job was to care for my baby- but they took care of me too. The nurses took such good care of her, and then would offer to assist me, or remind me to eat. It was important to have someone there to guide me- because I couldn't get past obsessing about my baby. Would this be the last time I would see her? Would this happen again? What if I had not been there? I would start to think and spiral into tears, and the nurses were there to offer me some herbal tea and towels for a shower.

I texted Kurt a list of things we needed (Iowa City asked us not to use our own baby clothing, they wanted us to use theirs and their blankets- so we had no baby clothing or blankets packed, so we needed some. And, in my haste, I forgot my textbook for an exam I have from Monday to Tuesday... I might need that... but let's be honest, how in the world am I supposed to concentrate?) and Seraphina and I went to sleep.

I woke up at 6:20. I looked at my phone and didn't see a text back from Kurt, regarding my items.... I knew instantly he had missed his flight and was still sleeping. I called him. Oh, I forgot to mention my phone broke last night, and I can only call people on speaker phone. When it rains, it pours...

Kurt missed his flight, and was SO upset about it he didn't read my texts, he just got dressed and threw his suitcase in his truck and drove here. He called Orbitz and tried to rearrange his flight- Orbitz was really kind and marked him down so he was not a "no show" and offered him standby- everything else was booked. He went to the airport and was told that his airline's staff wouldn't be back until 11:30am- he would need to come back then. With a heavy heart, he drove to the hospital to see Seraphina and me. He held his baby, who would not wake, talked to the nurses, and took a shower, then went back to the airport. He prayed hard about leaving- his mind thinking it was the wrong move, but his promptings telling him he needed to go to Salt Lake.


Seraphina has been seen by three doctors so far, and they are going to start by giving her an EEG for the rest of today, and through the evening. They will be giving her an MRI tomorrow. None of the doctors have any ideas as to why this is happening, and the specifics of her case (no twitching, she looks at you when she is awake, she moves her limbs, etc) are like nothing they have seen in a full term baby- so they agreed to just run tests until they can try and figure it out. She has pulse oximetry on at all times, but other than that she is free to move around as she pleases. This is the latest update as of 2:30pm 9/30/12

As far as knowing we are not alone... I will let Kurt tell his story:

Due to an extremely late night, I overslept my alarm and missed my morning flight to SLC through Denver. Our beautiful daughter, Seraphina had gone unresponsive the night before and turned blue for the second time in her short 3 week life. Mellissa had driven behind the transport to Blank Children's Hospital in Des Moines while I went home to catch a few Z's in the early morning hours leading up to my unintentional sleep-in.
I had never missed a flight before. The only other flight on that airline was overbooked but I was hoping to get on standby anyway. Mellissa had advised me to tell my sob story in hopes of striking a deal with the airline or airport, but I'm not much for crying... especially in public. I had 5 hours before the next flight so I visited Mellissa and Seraphina at the hospital. They gave me a neon green armband to signify I was a parent of a patient. I told them I was leaving town soon, but the nurse insisted I wear one.
I explored other options to get to SLC which included a later flight that day and one the next morning. Both resulted in a sizeable extra expense on top of the cancellation/voucher fees from my current airline.
As I stood near the ticket counter many families and couples checked in. I was texting to Mellissa when a girl, about 10 or 11 asked why I was wearing a green wristband. I explained that my baby girl was sick in the hospital and that I had just visited her. One of the older girls asked if I was on the flight with them to which I stated that I missed my earlier flight but was hoping to be.
As I carried on a guarded conversation with the family I discovered they lived in SLC and the father had attended a convention in Des Moines. Suddenly the lady at the ticket counter called my name. She informed me that even if I got a standby flight to Denver, the flight from there to SLC was overbooked also and I'd be stuck there for a day or two. My heart sank even farther but the family took time to carry on a conversation with me. About 10 minutes later, the mother of the family asked me if I liked Chicago. Confused, I stated that I loved it and told them of my love for the Cubs. The mother, who I soon learned was Gail, handed me a voucher from Southwest Airlines, and stated, "Good because you have a 3 1/2 hour layover there."
I was stunned. I had to keep composed as I walked what seemed like a mile down to the southwest counter to claim my ticket. I said, "Thank you" about 10x but nothing else came to mind. I texted my wife asking,"How do I thank them..."
We walked through security together and the father spoke the only words I have heard him say. "You should get some new pants without holes in them. I can see your garment."
...speechless...and now, finally, crying...
I did so well to keep my emotions in check up until now. 100 people going through security watched me bawl as I stumbled to put my shoes back on and walk down the corridor.
As I type this, the girl who asked about my green wristband keeps staring at me and smiling. I find it appropriate to smile back each and every time as I still do not feel I have thanked them enough.
I suppose all I can do is share the story of their generosity and hope it brings joy to others as well. I look forward to the day I can pass this good deed on to someone else.
Thank you Gail. You and your husband are perfect role models to your 4 children. May God continue to bless you and your family as you most certainly have blessed my family and I.
Kurt and I know we are blessed. We know God is watching over our family, and we have faith that all of this is happening for a reason. Our faith does not shelter us from fear- the genuine terror coming from the threat of losing a child. Our faith provides us with the knowledge that there is a purpose to this, even if we never understand it. I know that the prayers that have been said on Seraphina's behalf have made a difference. I do not want to think of what would have happened had I not been holding her- if we had just placed her in a bassinet and left the room... her doctors agree, if she had been alone, she may not be here now. Is there anything more horrifying than having a doctor say that? Probably, but I have not heard it. That thought is something parents shouldn't have to think- but here we are, living it. So yes, YOUR prayers help us- they help our daughter physically, and help us too- they provide promptings for what needs to be done on Seraphina's behalf, they put people in our lives that can help us in our efforts (like that family from Salt Lake, or the women in my Birth Group, and Kurt's parents), they give Kurt and I the strength and courage to get up, keep a stiff upper lip, and face each day and each challenge. So we appreciate your prayers, positive energies, and thoughts more than we can express. We also cannot say thank you enough for the notes we have gotten- notes of encouragement, concern, well-wishing, sharing, and reaching out. We have been overcome with our situation and may not be able to answer each one- but KNOW that we DO READ them, and they truly do TOUCH OUR HEARTS
Thank you for your continued support. We really do need it, and we know it is working.

________________October 1_________________
Seraphina had an EEG. It was 26 hours long- and she hated every single moment. I have never heard her cry that much, that hard, for that long. The poor child was totally exhausted, but couldn't get comfortable! The only way she could sleep was if she slept on me. The nurses were really helpful- they tried different props, positions, made nests, would hold her, sing to her, and nothing soothed her. I was very happy when the probes came off- but I think Seraphina was even happier! **I hit the point where I had to ask for help from the nurses, and they were great. Yes, Seraphina was screaming, but knowing she was being held helped me immensely. One nurse walked her around the room, singing lullabies  for over an hour. Seraphina was really fussy, but I managed to get a nap- excellent because then I could get back to caring for her. I would take hearing her cry over seeing her lay still for hours any day- but a mother's heart still breaks when her baby cries =(

Seraphina didn't mind when the probes were first put on her. She enjoyed having someone stroke her hair and tell her she was pretty!

She is my little baby butterfly- in her cocoon!

 She could only manage to sleep if I was holding her, doesn't she look peaceful?

 Awake... she would end up being awake for 17 of the 26 hours... she cried for 16 of those... it was a long night. =( Here, she was awake and not screaming!

She had FINALLY screamed herself to sleep. I hated every single moment, and often cried along with her. 

When the probes came off the first thing she did was take a GOOD LONG NAP!

The hospital staff attempted an un-sedated MRI this evening, but Seraphina screamed and kicked. I have to admit... it caused me a great deal of anxiety- seeing my tiny baby bundled up and then covered in that thing was pretty freaky. I don't know how I will manage her being drugged and then doing it again... I am going to have to pray REALLY hard about it, and maybe cry to Kurt on the phone through the entire process! 

So- as of 10/1/12 at 9:18 pm- the EEG was done, but has not yet been read. A sedated MRI is scheduled for tomorrow. If both tests look good they are going to send us home- they are currently debating on sending us home with a monitor - they feel like the monitors falsely alarm too much and frustrate parents. 

You now know what we know!

**RSV has been ruled out, and so has reflux.


_________October 2_____________
Today was Seraphina's sedated MRI, and the readings of both the MRI and EEG.

Last night they took her and did an IV- she did so well, she didn't even cry! She is such a brave little munchkin!!!

They had me nurse her at 4:00 this morning, and we were told she wouldn't be allowed to eat again until after the MRI was finished. Her MRI was scheduled for 8:30 this morning, and they transported her down at 8:15.

I am very thankful that I had already met the doctor who administered her sedative. He was the pediatrician who worked with us on Sunday, and had been kind enough to stop in and check on us a few times- so I felt a little bit more at ease about the process. That said, I don't know that it would ever be easy to see your own child drugged to sleep... =(


They put the medicine in her IV, and she cried for a few seconds, and then promptly fell asleep. I kissed her, and they wheeled her away. It was hard to watch- her tiny little swaddled body wheeled away on a giant bed. She had a nurse and the doctor with her during the entire process. I wish I could say that I was at ease- but I wasn't! I said a prayer, tried to watch TV, tried to read- and I gave up and called Kurt for some support. I did yoga. Downward dog in her little private waiting room. I prayed as I pushed into the submissive pose.

Her MRI went well. Her blood-oxygen fell during the sedation so they had her on oxygen, but they told me that is normal. The transport lady pushed little Seraphina while the doctor walked with me and chatted. He said that if the MRI came back normal (he had a feeling it would) then, although he didn't generally recommend them, he felt a home monitor would be a good idea. He asked me more questions, and admitted he was stumped as to what has caused these episodes.


After a bit the neurologist came and told us that Seraphina's MRI and EEG both looked normal. She also admitted she had no idea what was causing Seraphina to have had the problems. She also recommended a home monitor.

Seraphina took longer than normal to wake up. I attribute this to my own family's sensitivity to medication. During rounds the attending physician agreed that it would be a good idea to have a monitor when we went home- and they were going to discuss the type that would be best. They decided to try and get a CPR trainer to come and work with me (apparently our "Captain Sparrow" -as Harrison named it- CPR doll from the Iowa City NICU isn't as good as an actual private class), and we will be here another night for some additional observation.

Kurt's brother, John, visited Seraphina and offered to let Kurt stay at his home tonight (it is nearby). Kurt's mom has been watching the boys since Saturday night, and she texts me about their shenanigans (goodness do I miss them!!!). Kurt will be flying back to Iowa this evening, his job interview went really well and we will see what happens!


Seraphina is waving to you! (No, really, she was waving her little arm around, which is why it was blurry!)

These are all the updates as of 2:40pm 10/2



May 28, 2013
Seraphina used a home monitor until February. It was helpful to have, and went off only a few times. She has never had another full-on episode, but it is not something we can ever forget. We check on her often, around the clock, regardless of her sleep pattern, and we continue to thank God for her (and each of our family members) every single day. The times her monitor went off- it registered both her lungs and heart had stopped- we regret not turning the lights on to look at her (and we were lectured for not doing so)- but our instincts were to rush at her in the dark (she was beside our bed) and roll her around until she cried and the monitor stopped.

No one knows what happened to her, why it happened, or what went on. The medical doctors were wonderful about exploring just about every avenue available, and we appreciate their time, knowledge, and concern for our daughter. 

Thank you to everyone who prayed for our angel. She is a joy to us, and we do not remember what it was like before she was in our little family. She is such a blessing, and we adore her.

10 comments:

  1. I sit here with tears rolling down my face for you. I know there are no words of comfort I can give that will make this OK, only the return of health for your sweet baby girl. Please know I am fervently praying for God to heal Seraphina completely. I am praying He give you and Kurt strength during this hard, gut-wrenching time and for you guys to stay strong as a team and not turn your fears, pain, panic on each other as is so easy to do. Cry out to God as you know He hears you. I will ask Him to hold you in His hands. So much love to you Mellissa (and family).

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  2. Oh I mu gosh honey. I cant imagine going through that with your baby girl. I have tears running down my face from reading that. I know nothing I can do or say will help things. But i will definately have you and your family in my thoughts and prayers!!!!!!! hugs

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  3. My family's prayer to your family! XOXOXO The Lowery's
    Stafford, Va

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  4. Prayers are being said by everyone I know. We pray that God gives you the strength He knows you need to get through all of this.

    The Knears, Rockledge, FL

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  5. Praying and crying right along with you!!

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  6. Tonight, my tears are for all of you! I am here if you need anything! Seraphina, I wish you a fast recovery, your family can't wait to have you back at home, and your "aunt" Cari has a special little surprise I've been meaning to send to you. xoxox

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  7. I am praying for you and your family!

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  8. Melissa, Your trial is more scary than mine as it seems it has lasted much longer and your beloved baby has exhibited far more serious symptoms, but I would like to share with you an experience I had with my first child. He was two weeks old. I woke up to nurse him and he wouldn't nurse. He had always been so happy to nurse so I took his temperature and it was above the 100.4 that his pediatrician mentioned could be dangerous (possibly meningitis). So, we called the doctor, who told us to come in for a checkup.
    My story is very similar to yours. I'll try to make it short.
    I rocked him all morning to the music of a CD that a friend had gotten us. Of particular impact during the time was Kumbaya..."someone's hurting Lord, Kumbaya." "someone's crying Lord, Kumbaya". My husband and I delayed taking him to the doctor. We called our minister who came right over and prayed over him anointing him with oil. Very shortly after he left, my firstborn baby began to nurse again. His fever started to go down. I knew he had been healed...but the doctors didn't. They harrassed us to come in, which we did. My baby was almost fine when he got checked. The pediatrician threatened to call DCF if we didn't take him to the ER, where they poked and prodded for the blood test and the rest is just craziness, since we wouldn't let them do what they wanted, since we knew our baby had been healed. He's five years old now and is a very healthy little guy! I hope and pray that what God has in store for your little baby girl is an even greater miracle than he performed for us. Beatiful little, Seraphina, my heart yearns for your health!

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  9. I am thinking about you nonstop! I know how much you have waited for Seraphina to join your family. God is in control, never lose faith in His ultimate plan. I'm SO glad to hear things are improving with her, please keep us posted! Loves to you all!

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