Life in the NICU

Calvin spent the first 6 weeks of his life stuck on a hospital bed being poked and prodded and treated like a test dummy. His norm became the sound of alarms going off 24/7, babies crying, people rushing about and very little loving contact. The doctors and specialists ran a whole battery of tests on him to try and figure out what was going on with him; they did sodium channel testing, lumbar punctures to check the neurotransmitters in his spinal fluid, biopsies, multiple blood tests, ultrasounds, sonograms, x-rays, MRIs and EEGs, among other tests, all of which came back normal (except for the EEGs.) He became basically their little pet project. It seemed like everyone from all these different departments wanted to get their hands on him because they wanted to be the one to find out what was wrong with him and be able to claim it as their discovery. The neurologists struggled to control his seizures; they started and stopped several different anti-epileptic drugs (Keppra, Fosphenytoin and B6, in addition to the Phenobarbital and the Topamax he was already on.) He metabolized the medications so quickly that they have to keep his levels WAY above the "normal" rate for a baby his age just to keep the seizures somewhat under control. There were days when he had 20-30 seizures a day (which we thought was terrible at the time) and days that he had 60+. It seemed like every time they started to get the seizures under control, he would have a set back and we would have to start all over again. We went back to square one multiple times. It was so frustrating because the neurologists would start multiple drugs at the same time, so we never knew which drug was working and which wasn't  so it was all trial and error in playing with his medications (which is still the case with him now.) He was hooked up to the EEG monitoring for a week or so at a time. After about a week or so, his scalp would start to irritate and/or deteriorate, so we had to take the leads and all the wraps off to give his head a break before we put it back on. Calvin was a difficult case because we never really knew exactly when he was having a seizure based on looking at him. Some of the movements he was making that we *thought* were seizures, turned out to be nothing (based on what the EEG showed) and things that we didn't consider seizures, indeed were. Sometimes the EEG showed that he was seizing sub-clinically (in his brain), but he was not moving or twitching or making any kinds of movements at all.

In the middle of November, the neurologists suggested a special formula, Ketocal, that has been proven to reduce or eliminate seizures in epileptic children and they thought it was worth a shot. We of course, agreed. So I was instructed to keep pumping for a few days and they would store it for him just in case the formula didn't work, but he was switched to this formula exclusively;  no breast milk. The goal of this diet (The Ketogenic Diet) was to get him into a ketotic state, which basically means his body is basically tricked into starvation so it burns fat. The formula was a high fat, low carbohydrate (no sugars allowed) diet that was nutritionally incomplete. They struggled to get the sugar/dextrose out of the medications he was on, so after about a week, he was still not producing ketones (the goal was to have 50+), so they stopped the diet thinking it was not working. Unfortunately for me, my milk supply had dropped and I wasn't producing enough to keep up with him after they put him back on the breast milk. They had to supplement with formula, which made it worse, so I eventually had to quit breastfeeding/pumping altogether.

The time we spent in the NICU was admittedly a dark time for me. I felt like I turned into a different person than I had been previously. It was all I could do just to keep my head down and try and come out of there in one piece. I felt like all I wanted or was able to do was focus my energy on my sons and getting Calvin out of there. I was extra irritable, I didn't want to talk to anyone, answer any questions or have to explain what was going on with Calvin. I think I was still trying to wrap my head around what we were all going through, so it was hard for me to have to try and explain things to anyone else. Not to mention the fact that I was still physically healing from having just given birth and all the hormones that come along with that. I was a complete mess. I struggled with finding a balance between being there for Calvin yet still trying to be a good mom to Paul. I felt like what was happening with Calvin wasn't fair to Paul; he was just in limbo. He was thrown into this new environment, away from his home and his mom and dad and it was hard for him to adjust. Luckily he's a resilient little boy and adapted as best as he could. My heart broke a little more everyday when Paul would say "Mommy, go see Calvin today?" I hated that we had to GO see Calvin at the hospital; that's no environment for a not-yet 2 year old to be in for hours at a time. I wanted to spend as much time with Calvin as possible but I still had a responsibility to Paul, so we got into a routine of going over to the hospital in the morning and spending a few hours with Calvin then going back to the Ronald McDonald House and trying to find some sense of normalcy for Paul with a dinner/bedtime routine. I was torn between my devotion for my two children and was being pulled in so many different directions and I didn't know how to handle it. I had to be a mom to Paul, and an advocate for Calvin. I wanted and needed to be at the hospital as much as I could because there was so much that was going on medically with Calvin, I felt like I needed to be kept up to date and get as much information and details as I could. I had dozens of meetings with different doctors, nurses, specialists etc and some of the decisions I had to make for Calvin were significant. I wanted to do everything we could to help Calvin, but at the same time, I didn't want Calvin to be their guinea pig or their tool for learning- he was still my child. I cried more during these 6 weeks than I think I had in my entire life. I lost some of myself and I'll never be the same. This baby has changed me to the core, as all babies do.

The doctors got to a point where they were at a complete loss. They could not figure out what was going on with him; every test they did came back normal. They suggested he may have Microcephaly Capillary Malformation Syndrome (Mic-Cap.) The last resort was to have whole genome sequencing (where they look at every single gene he has to try and isolate any that are mutated or have additions or deletions to them.) They told us this was a VERY expensive test, but since he was in the NICU and it was basically medically necessary, that the hospital would pay for it. So, we agreed  and they took a blood sample from Calvin, Ryan and me and sent it off to the lab in Seattle. They told us it would take about 4 or 5 months to hear back from that, and as of April 24th, 2013 we don't have results yet.

Long story short, after a while, we got Calvin to a point where they found the "sweet spot" with his medication and for the last week we were at the hospital, he was completely seizure FREE. He was having ZERO seizures. He was however, in a more zombie-like state- sleepy and just kind of out of it. We didn't really love that, but I was happier with him like that than with him seizing 60+ times a day, so we accepted it. They told us that eventually he would acclimate to the medication and be more awake and alert for longer periods of time.

The day we were being discharged, November 29, 2012, the nurse came over to me and said that the doctors were suggesting taking him down and getting an x-ray of his hips to confirm that they're not dislocated from being born breech. She said she didn't think he needed it because his hips seem fine and she never heard any clicking or grinding like one would normally hear when a hip is dislocated. I pushed to go ahead and have it checked because we were going to need to do it in a couple weeks anyway (as suggested by the pediatrician when he was born.) Sure enough, they came back and told me that his left hip is dislocated. They sent up the orthopedic specialist, who checked him out and just told us to make a follow up appointment at his office in a week or two and they would likely put him into a harness to try and push it back into place.

Calvin was in the NICU from October 21, 2012 until November 29, 2012 (just under 40 days). We stayed at the Ronald McDonald house through Calvin's first Halloween, through hurricane Sandy (and fared just fine) and his first Thanksgiving as well: just my mom, Ryan, Paul and I along with a few other people who were staying at the house from out of state.

The outpouring of love and support we received, emotionally, financially and physically from all over was overwhelming. Ryan and I are both very prideful so it was hard to accept help, even though we desperately needed it. We will never be able to adequately thank everyone for the support and love....it's just not possible. We are forever indebted to you all-- thank you for being there for my family in our time of need.

Taking the EEG leads off

His poor scalp was breaking down from the EEG leads

Thanksgiving in the NICU

finally going home!

Halloween in the NICU

This is the special formula they put him on

What is Microcephaly Capillary Malformation Syndrome (Mic-Cap)?

When Calvin was in the NICU, in mid-November 2012, one of the resident physicians found a paper written about Mic-Cap on the internet and thought that some of the symptoms that they described sounded familiar to what Calvin has. The geneticist at Georgetown University Hospital contacted the researchers who had written that paper and asked if they wanted to, or would include Calvin in their research and they agreed. Blood samples were taken from Calvin, Ryan and I and were sent off to the research facility in Canada. We were told we would get results from that in about 15 weeks. On March 4, 2013, at 4 1/2 months old, the geneticist got confirmation that Calvin has mutations in two genes that have been isolated for Microcephaly Capillary Malformation Syndrome, confirming that he does indeed have that syndrome. The researchers told us that it is an autosomal recessive gene, which means that I carry one of the genes, and Ryan carries the other and we passed both of them to Calvin, and they were mutated, which is what led to the Mic-Cap. This also means that all of our children (Paul as well as any other future children) have a 25% of being born with the same mutations, and they likely carry one of the genes themselves.

As far as I know, Calvin is the 11th confirmed case in the world, so to say it's rare is an understatement. However, there could numerous unconfirmed cases out there and parents who are just at a loss as to what's going on with their child.

Here is a paper written by NIH describing this syndrome: Mic-Cap Syndrome

These are Calvin's symptoms:

• Microcephaly (small head)
• uncontrollable seizures (he is currently having 150+ seizures a day)
• Capillary malformations (spots all over his body)
• short toes/nails and hypoplatic toe nails with nail aplasia (his toes and a couple fingers are a little malformed)
• poor muscle tone, little head control
• severe global developmental delay
• mohawk
• hair whorls/cowlicks

Microcephaly (small head)

Capillary Malformations on his body

More capillary malformations (this is the one they did a biopsy on)

short toes/nails and hypoplatic toe nails with nail aplasia

his pointer fingers are the ones most affected

Admitted to the NICU- October/November 2012

I'm sorry if this post is all over the place...like I said, some of the details are hazy and mixed up in my head. This is not all of his NICU experience, I will post more later.

Calvin was admitted to the NICU at Georgetown on Sunday October 21, 2012. When my dad and I finally got to the hospital, we were told that he was down getting an MRI and should be back before too long. We sat there in that waiting room for what felt like HOURS. I remember it just feeling so surreal. That cold, dirty waiting room outside the nurseries felt like the depths of hell. There were pictures of "NICU graduates" on the walls, and all I could do was stare at those pictures and hope that we wouldn't be here long enough to make it on the wall. I could hear babies crying and see doctors and nurses coming and going from the unit. Every time the security doors to the unit opened my heart jumped a little hoping it was my son, and time and time again it was not him. Finally, I think about an hour or so after we got there, the doors opened and he was rolled in, still in his little traveling box. I jumped up and the nurse that was pushing him asked if I was his mom and I said yes. She let me look at him for a minute before she took him back inside the nursery. About 30 minutes later, they brought him back out and told me they needed to take him back down to have another MRI done, this time with contrast, because there was something that was "concerning" to them. Eventually Ryan and his dad got there and we waited some more. I told Ryan they had just brought him back from MRI and he was back there now, but we couldn't see him yet.

One of the nurses showed us the room he was in (we could see into a window at the back corner of the unit that he was in) and she opened the blinds so we could get a glimpse of him. I don't remember what she told me they were doing to him, but we weren't allowed to get to him or see him yet. She did tell us that they had to put him in contact isolation due to the spots on his skin and because they didn't know what they were or if they were infectious. The details of that night are hazy, but at some point they let Ryan and I back to see him. We had to wash our hands before we went into the unit (that's the normal protocol for the NICU) and we had to put on these yellow paper gowns and gloves before we entered the room and we were told we couldn't kiss him or hold him. They had him hooked to all sorts of machines, monitors, on oxygen and he just looked so frail and worn out. The doctor came and talked with us a bit and told us that there was nothing definitive back from the MRI but they think he may have had a mini stroke because there is a dead spot on the left side of his brain, which they said he could bounce back from. They also told us that the front of his brain looks slightly underdeveloped in comparison to the back of his brain.

They took some blood to do some blood cultures among other lab work. They let us sit with him for a bit before they told us we had to leave because they needed to do a lumbar puncture to check his spinal fluid. They weren't able to get any spinal fluid on the first try, so they ended up doing several (I think about 6 or 7) before we told them they needed to stop, that they could not poke him any more unless something drastically changes and they have good reason to.

His nurse for the day, Margaret, asked me if I would be breastfeeding or pumping and she got me some pump supplies and whisked me away to a mother's pumping room and showed me how to use the pump and basically left me to it, which was daunting because I had never pumped before. Luckily I was able to figure it out. Before she left, Margaret told us there is a parents room at the hospital that we might be able to stay at if its available. My dad checked into it, and that room was full, so he went over and reserved us a room at the hotel located on the campus of the hospital for the first night we were there.

The next day, they hooked Calvin up to an EEG to watch his brain waves and see if he was still having seizures. They started him on a round of antibiotics in case he had any infections or anything. They also did an ultrasound of Calvin's heart to see if there was anything wrong, which showed a small secundum with left to right shunting and a mildly dilated right ventricle.

Over the next several days, they continued to watch him on the EEG and noted no more seizures. Dermatology came and did a biopsy on one of the spots on his leg to check and see if it was infectious or if they could tell what it was. It came back a few days later as non-infectious, so they took him out of contact isolation. He saw a whole slew of doctors, medical students and specialists from several different departments in the first few days, including dermatology, infectious diseases, genetics, neurology, physical therapy, speech pathology, ophthalmology, and EEG (among others, I'm sure.) He had an eye exam which he passed and a hearing exam that he failed initially.

The next morning we were able to reserve the parents room, aka "The Nesting Place" for 3 nights so we were able to stay there for free (well, I'm sure they billed our insurance company.) Starting the 4th night, the social worker Allison got us a referral to the Ronald McDonald house across town, which was a lifesaver. It was a 30 minute drive across downtown D.C. in no traffic and sometimes took over an hour to get to the hospital, but it was better than being 2 hours away.

I continued to pump every 3-ish hours and take the breast milk to the NICU and that's what Calvin was eating exclusively once they took him off the IV fluids. They had put him on IV fluids when he got there because they didn't know if he was still having seizures and they were afraid of him aspirating.  After 2 days, I was finally able to hold him and slowly start giving him a bottle.

On Thursday October 25th, they told us that Calvin was not having any seizure activity and we would be able to go home tomorrow, Friday the 26th. Yay! Unfortunately, at 7:30am on Friday, they called me and told me that they noted some seizures clinically and we were not going to be able to take him home yet. They told us that the dose of Phenobarbital they had given him back at our local hospital before he was flown to the NICU was just wearing off and that's why he wasn't having seizures up until this point. They gave him some more Phenobarb and hooked him back up to the EEG.

I went back to my house for a few hours on the 4th day to pick up some clothes and rent a breast pump from my local hospital that I could use when I was not at the hospital. I went back up to the hospital that night and spent the remainder of Calvin's time in the NICU at the Ronald McDonald house. I literally did not go home for the whole rest of the time he was there- 6 weeks. Ryan had to go back to work, so he would stay at home during the week and come up and stay with us on the weekends.

My mom was an absolute lifesaver during this time. She took a leave of absence from work back home in California and stayed with me and Paul at the Ronald McDonald house while Calvin was in the NICU. The rest of my family had to go home a few days after he was admitted, but mom stayed to help me for 6 weeks.

Here are some pictures from his first few days in the NICU.

After his MRI, the night he was admitted 

getting an ultrasound of his heart

Hooked up to the EEG, with nasal cannula/oxygen

The first 24 hours...

The first 24 hours after Calvin's birth almost seem a blur to me now. I don't remember exactly everything that happened...or maybe I've tried to shut that part out of my brain...I'm not sure. This post might be rough, and I apologize for that. This is still SO emotional for me and it's hard for me to recall and re-live this again...but here it is.

The day of and the night following Calvin's birth were largely uneventful. My in-laws visited for a bit then took my older son Paul home with them for the night (since he obviously couldn't stay at the hospital). My family all got on a plane from California, as planned, to see us. I spent the rest of the day just relaxing in the hospital bed (is that possible?) with Calvin, working on breastfeeding him, taking care of him and walking around the room trying to get myself back in the swing of things. Nurses came in and out all day long to check on him and me and make sure everything was okay. A different OB doctor came to check on us and told me that everything looked good, and we would most likely be able to go home the next day (Friday.) Ryan went back home to do some homework and get some things ready at the house for us to come home. He ended up staying at home for the night, while Calvin and I spent the night at the hospital. Through the night, Calvin slept exceptionally well. Looking back now, he slept almost too well. He had a little trouble latching on to breastfeed- there were a couple instances where I felt like I had to try and force him to me to get him to latch. There were more "attempts" than actual feeds.

The next morning, my in-laws brought my son to visit us and spend some time with his brother. This was the first night I had ever spent away from my son since he was born (he was 21 months old at the time) so I was more than excited to see him. The nurse came and took Calvin to do his final check  up before we were discharged and give him his immunization shots and whatever else she needed to do before we went home. She told me she would bring him right back, in about 15-20 minutes or so. About 30-45 minutes later, my family made it to the hospital (their flight had landed the night before but they didn't get in to town until late night). Ryan took Paul and went looking for Calvin, to see if they could see him in the nursery window. I think at this point, my mother in law was sitting in the room with me. Ryan came walking quickly back into the room, dropped Paul and said "I'll be back." About 5 minutes later, Ryan came back in the room and looked at me and said something to the effect of "The doctor says he's having seizures. They need to take him to another part of the hospital." My heart sank and I felt the blood drain from my face. I looked over at my mother-in-law then back at Ryan and said "What? What do you mean he's having seizures?" He told me he didn't know any more than that, that the doctor had called him over to see what Calvin was doing, and that he had seen him making some jerking movements that the doctor said was seizures. He said the doctor was making some phone calls and would come in to talk to us soon. Ryan then went back to the nursery to check on things. Meantime, my mother in law left the room, so my mom could come in with my 5 year old nephew. I don't think I told my mom what was happening at this point, as I couldn't process it yet. The doctor came in a few minutes later, and I asked my mom to take my nephew out of the room, and she did. The doctor told us that the nurse had seen Calvin make some unusual jerking movements that she was concerned about, so she called him over to watch. He noted the movements and said they were seizures. He told us that Calvin needed to be flown via helicopter to Georgetown University Medical Center in Washington DC. We asked if he needed to be flown or if he could go via ambulance, basically trying to gauge how severe this problem was. He told us it was serious enough that he felt he needed to be life-flighted up to the hospital.

The next few hours were the absolute worst of my life, by far. The time seemed to crawl, but at the same time felt like a blur...this could NOT be happening. This is where it all melts together and I don't remember everything that happened. I went to the nursery where Calvin was...they had him under a warming bed with an IV in his arm and all sorts of cords and monitors on him. They had apparently give him a dose of Phenobarbital to try and stop the seizures, so he was pretty knocked out. The nurses and doctors were on the phone talking about him and explaining what was going on to whomever was on the other line trying to schedule a flight out. Finally they arranged for the helicopter to come, they said in 45 minutes. Ryan went out and told my family what was happening. At some point I remember going out to the waiting room to talk to my family, but I don't remember what was said or what happened. I remember taking my mom (and maybe my dad?) back to nursery to see him, since they hadn't even seen him yet. They were able to spend a few minutes there while we were waiting before the nurse told us she was so sorry, but family members weren't really allowed to be there.

I remember seeing the maternity ward doors open and a bunch of people in flight suits walk in with this big box and all this medical equipment. At this point, I felt like I was going to puke. Ryan put his arm around me and basically held me up. The helicopter doctor talked with Calvin's nurse and the doctor that had called her, then came over to Calvin to do an initial assessment of him. I recall her saying "Ohhh....what are all these spots he has? I hadn't heard about these..." I could tell by the look on her face that she was concerned about them being infectious or something. I told her that they were there when he was born and that the pediatrician that had checked him called them "cafe au lait" spots and he said they would just fade and go away on their own. Then the nurses and doctors and flight team spent the next however long getting him ready and hooked up to their little box cart thing to go on the airplane. We were able to say goodbye to him and they explained that he would be going to the NICU, where it was located and how we could see him. We rushed back to my room, collected our things and got ready to go. We told the flight team we would be right behind them and then they took him away. As they wheeled him away, I just remember burying my face in Ryan's chest and sobbing uncontrollably. It felt so surreal..I felt like my heart was being ripped from my chest. My newborn baby, that I just had in my belly 24 hours ago is now inside a tiny box being ripped away from me so dramatically. I can honestly say that I would not have been able to make it through those hours without Ryan's love and support.

We went downstairs and stood in the parking lot waiting for the helicopter to take off. We could hear it fire up and were just waiting to watch. I was standing in the parking lot behind my car holding Paul when the helicopter started to take off. We were waving at the helicopter and Paul was saying "bye bye brudder! I love you brudder!" and I almost collapsed at that point- if I had not been holding Paul, I would have been a puddle on the floor. I just hugged Paul as tight as I could and broke down. I tried to explain to him that Calvin was just going for a helicopter ride and we would see him soon. He didn't understand...he just waved and said goodbye as the helicopter flew away. Watching my newborn fly away in a helicopter as his brother waved and said he loved him was too much for me.

Everyone loaded up in the cars and got ready to leave. My mom and the rest of my siblings took Paul back with them, dropped Ryan off at our house to get some clothes and his car, and Ryan would head up to the hospital with his dad later. I had my dad drive my car (since I had just given birth 24 hours earlier, I couldn't drive myself) and we immediately drove right to the hospital (2 hour drive one-way with no traffic.) Leaving Paul again was heart-wrenching. He just cried and kept saying "no, no!! Mommy!" and it broke my heart all over again. I felt like SUCH a horrible mom. I had NEVER left him overnight before Calvin's birth and now we were headed into such an unknown...I had no idea how this was going to affect him or myself, or any of us for that matter or how often I would be forced to be away from him. Life as we knew it had changed DRASTICALLY in a few short hours and would never be the same.

Here is the one and only picture we have of all this, taken as they were wheeling him away in his box.

More to come...

Calvin's birth story

On Tuesday October 16, 2012, I was sitting on the couch at home and felt baby's (that we didn't have a name for yet) hiccups that seemed to be up by my ribs instead of down low near my pelvis where they should be. Two days later, I had my 39 week checkup with my midwife (Brooke). She said I was 1cm dilated and I mentioned to her that I thought the baby might be breech because I felt the hiccups up really high. She said he's probably not, based on how he felt in my stomach from the outside, but agreed to do a quick ultrasound to confirm. We walked over to the ultrasound room, and a few minutes later, she confirmed that baby was indeed breech. She told me that we HAVE to get him to turn; otherwise they will be forced to do a C-section, which was the absolute LAST thing I wanted. I asked if I could deliver him breech, and she said absolutely not, that the risks of him getting stuck were too great. She recommended that I see a chiropractor that specializes in turning breech babies and some acupuncture. I went and saw the chiropractor she recommended twice on the 18th and again on the 19th, in hopes of turning the baby. I also saw an acupuncturist on the 18th that did some Moxibustion, also in hopes of turning the baby. 

During the evening of Friday October 19, 2012, I did some inversion and cat/cow stretching as recommended by my midwife and the chiropractor. I went to bed that night around 10pm feeling fine. Starting at around 2:30am on the 20th, painful contractions woke me up. I spent the next hour lying in bed breathing through them the best I could, without waking up Ryan. I started timing my contractions at 3:17am and they were lasting about a minute and a half and were 4-5 minutes apart. I took a shower around 4am to see if the contractions would go away, or if this was *really* labor and Ryan woke up about 5:15am (I guess my breathing got a little louder.) He asked me, half-jokingly, "Is it time?" and I replied "I think so", to which he sat straight up and said "Really? Are you serious?" Um yes. I am serious. I told him how closely they were coming (he thought I said 45 minutes apart, instead of 4 to 5) He took a shower and was taking his time. He finally took notice that I was having very little down time between contractions and he jumped into action.  I called my midwife at 5:55am and she said it sounded like labor and I should go to the hospital, she would meet me there at 7. She warned me that if the baby is still breech, it would be a C-section, so I need to prepare myself for that. I got dressed and Ryan grabbed some clothes and threw them in a bag (since it wasn't even my due date yet, we were NOT ready), woke Paul up and got him in the car as I fought contractions and got in the car myself. He called his parents on the way to the hospital and nonchalantly told them I was in labor, that we were on our way to the hospital and asked them to come get Paul. Then I called my parents in California (it was around 3 am or so) and told my mom that I was in labor and the baby would be here soon. We pulled up to the hospital at 6:50 and Ryan got a wheelchair and took me inside to the ER and left me there while he got Paul from the car. A security guard took me up to the maternity ward. Contractions were back to back and very intense. 

Once I got into the delivery room, my midwife was there waiting for me, and the nurse told me to go to the bathroom, put on a gown and give a urine sample. I went to the bathroom and felt like I needed to push while I was sitting on the toilet. When I wiped, there was bloody discharge (mucous plug.) I went back to the bed and told my midwife that I had just lost my mucous plug and as I lay there, she asked me if I was ready to be checked. I told her not yet as I fought through a big contraction. When it calmed down a little, I told her to go ahead. She checked me and said I was at least 8cm dilated and my bag of water was bulging. Her face was almost alarming- she looked worried. She then did quick ultrasound and confirmed baby was still breech, so she told me I needed an emergency C-section. She called for the OB doctor and got up to get something (maybe find the doctor and my water broke/exploded, went gushing everywhere. Ryan was standing there with Paul (his parents hadn't arrived yet) and I said "oh shit, my water just broke." I knew the baby was coming, and he was coming FAST. Ryan went running out of the room yelling "her water just broke" and then dozens of people/nurses came running in. They were saying "get the Dr., she needs to be in here NOW, get any nurses that are out there; get everyone!" Everyone seemed to be almost panicking- they were totally unprepared for how quickly he was coming. My midwife came running in, and some nurses were trying to hold my legs up as I was pushing. I was in so much pain, I kept trying to break my legs free from their grip because I felt like I needed to be up crouching or something rather than on my back. The nurses were telling me to grab onto my thighs and pull back and I just kept saying "I can't, I can't" There were 2 nurses on each side holding my legs back. At one point a nurse tried to get an IV in my arm, but for some reason she didn't or wasn't able to.

Brooke was telling me not to push, to try and hold it in, breathe it out, and then she whispered to another nurse, "This is not going to be a C-section. His foot is right here." I was yelling "I need to push, get him out, I can't do it. He's coming NOW." So I just pushed as I felt the need to. I could feel him almost crowning when the OB finally came running in. She literally threw a gown over her arms and slid some gloves on and she was able to help glide him out, feet and butt first. She set the baby on top of me and at that point, Ryan came running back in just after he was delivered and he was able to cut the cord. She then delivered the placenta. Baby was covered in meconium (poop) but checked out fine. One of the nurses asked me what his name was, and I said "I don't know. Ryan, what is his name?" And he looked at me and said "His name is Calvin Oliver." I called my mom back about 30 minutes later and said "Hi mom. He's here." And she said "What? Really? Already?! OK...well, we'll be there late tonight." 

Calvin Oliver Emmart was born butt and feet first, completely natural/un-medicated on Saturday October 20, 2012 at 7:23am, 7 lbs. 1 oz., 19 1/2" (33 minutes after we got to the hospital, and only 5 hours after I started having contractions.) His original due date was 10/23/12. 

The on-call pediatrician came and checked him out and said he looks fine. His soft spot on his head is a little larger than normal but it will close itself. Calvin had some spots on his skin that the Dr said will go away- he called them "Cafe Au Lait" spots but didn't say what they were otherwise. He told us to have a sonogram on his hips at done at 8 weeks because sometime breech babies can have hip dislocations.  His circumcision was done around 11 am and went well. His foreskin was swollen but the Dr. said it would heal up fine. The pediatrician also noted that he had a smaller head, but again, didn't seem to concerned about it. He said it was probably because he was breech and didn't have room to grow like it would have normally. Calvin also had two soft spots, one at the very back of his head and one at the top. The Dr said they would close up and be fine. 

Here are some pictures from the day/night he was born. I sent the second picture to my family in a text message saying "look how little his head is! His poor noggin didn't have any room to grow. Ha." Who knew that it was really an indicator of what was to come...

Welcome!

Welcome to our blog! I decided to start writing down the journey we have been on with my son Calvin since his birth, both for my own memory and for those of you who are interested in keeping up with us. My goal is to raise awareness and knowledge of the super rare syndrome he has been diagnosed with and hopefully help find some solace for us with the support we have been blessed with.

I'm pretty far behind in writing down his story right now (he is currently 6 months old) but I will try and catch up slowly but surely. I'm sure this will be an emotional journey for me, so bear with me. There may be some gaps, due to the fact that some of what we've gone through is a blur and I'm not 100% positive how we made it through this far.