Thank You

When I first moved to PA I saw it simply as an opportunity to complete residency. Something I had to do so I could go back “home” to KS and really start my life. There was obviously a bigger plan to me moving here. Not only did I meet the man of my dreams, marry him and have kiddos but I also met so many amazing supportive people here, who became my friends.

I never thought when we found out about Owen and what we would be going through that so many people would rally around us. For all of you, thank you. I will never be able to say that enough. For all those of you who fed us when I couldn’t get off the couch or was in the hospital thank you. It was good to know that my family was properly fed even if I didn’t want to eat or couldn’t keep it down. For my unit for the ridiculously generous gift that will most definitely help with the medical bills that I am just waiting to roll in, thank you. I always knew neurology was the place for me and you all prove how great our department is. I am so honored to be able to work with all of you as an attending in the future. Everyone who has run into us, sent cards, flowers, emails or facebook messages thank you. The words of support mean more than you know. It definitely makes us feel so loved and cared for, which is truly helpful in a time like this. For my graduating high school class for feeding us and helping us keep our house clean when we were in the hospital and spending endless hours in the NICU thank you. You know you have true friends when you haven’t seen them in years and they still feel the desire to help when you need them. For everyone who came to Owen’s memorial service, it helped to see kind smiling faces that day, thank you. For our pastor who was  there to baptize Owen and has come to the NICU to pray for Olivia on a regular basis, thank you for your time and your prayers. For Josh’s family who has been there for us with everything we needed, watching the girls, bringing bunk beds, and simply support I thank you. When I am so far away from my entire family it is nice to know I have you around. For our doctors and nurses in the NICU and the MFM department for everyone who took care of me, Owen and Olivia I will never be able to thank you enough. Not only did you save my daughter’s life but you made it possible that I could be with my son before he passed. We had the absolute best care anyone could ask for and there is not another institution out there that I would want my family at.

My husband… there are no words for everything you have done. Thank you for your support both emotionally and physically. You never questioned my breakdowns or my crazy obsessions with things being certain ways. For always trying to take care of me when I didn’t take care of myself, for watching the girls and letting me have my time with Olivia in the NICU, for being my biggest support and my rock, thank you.

I have been beyond blessed to have so many wonderful people in my life. I cannot ask for more. If any of you need anything at any time, I am there.

Thank you all for everything you have done for me and my family. I am truly grateful.

Update on Olivia Paige

As of 11/4/12, Miss Olivia Paige is 3 weeks and 5 days old. She corrects to 31 3/7 weeks gestational age. We have now spent every day for the past 26 days in the NICU, most of those days we were there for the vast majority of the day. Yesterday was Josh’s first day back to work so I spent the day with the big girls and only spent a little over an hour with Olivia while Josh watched Ems. I already have the guilty, bad mama feeling because of how little time I spent there today. Logically I know that she will never know but I still feel like I am doing her an injustice when I am not there all day.  When Emma was in the NICU she was discharged on day 24. We are now 2 days past that duration with Olivia and fully expect her to spend another 7-8 weeks in the hospital prior to being discharged home. All in all I cannot complain about how her progress has been. A few bumps in the road here and there but she is definitely on the right path. For that I am truly grateful, and I know her brother is looking out for her.

 

I have been keeping notes about everything that has been going on so I wouldn’t forget. As the days are pretty much the same details tend to blur together. She was born 10/9/12 and immediately placed on nasal IMV which is a fancy way to ventilate a baby through their nose rather than them needing to be intubated. I am so happy she never needed intubated, that would have made things so much harder. She had 2 doses of surfactant on her day of birth which unfortunately didn’t seem to help her RDS as much as one would have hoped but she has done well regardless. She is currently still on the nasal IMV but on such low support she likely does not need it any more but they don’t want to force her off of it so she can get off all respiratory support as quickly as possible. She is actually doing very well for a 27 weeker from the respiratory status. She had a picc line placed and was started on tpn (total peripheral nutrition) along with tiny breast milk feeds through her OG tube 4 times a day. She was getting 1ml 4 times a day, 4mls… not much but it has been shown to greatly lower the risk of necrotizing enterocolitis (NEC, one of the most common complications of extremely low birth weight babies). So far her gut is doing awesome. Tolerating full feeds through her OG tube and pooping like a pro (amazing what you get excited about in the NICU, a poop is a wonderful thing). Her tpn was discontinued on 10/25 because she was doing so well with her feeds and her PICC was pulled on 10/30. She is currently without any IV which makes getting her out so much easier. Because she was so early she had an echocardiogram which showed a pda (patent ductus arteriosus). For those not in the medical field this is normal in fetuses, it shunts the blood from artery to artery to avoid the lungs because a fetus is not oxygenating blood by its lungs, it is preoxygenated by mom. This shunt typically closes within hours or a couple days after birth in full term babies. Olivia’s was pretty wide open so they decided to medically close it so we would not have to worry about it possibly causing problems a few weeks down the road. This was found on 10/15 and she had 3 doses of indomethacin every 8 hrs then was re-echoed. The indomethacin did it’s job and closed the pda and she was restarted on feeds on 10/17. On 10/23 she had her routine cranial ultrasound that all babies born before 30-32 weeks gestation get. Unfortunately this did show a small bleed in her ventricle on the right side. IVH grade 2 because there was a very small amount outside of the germinal matrix. These bleeds are very common in preemies and actually somewhat common in full term infants as well, but most babies aren’t scanned to look for them. Grade 1 and 2 typically have no effect on outcome of the baby for their development lifelong. Grades 3 and 4 are the ones you want to be concerned about. Olivia’s bleed is tiny, our NICU attending said that with the size of hers he believes she will do just as well as she would have done without it. Something that is there, but should not affect her at all. I do believe that he is correct and she will not have any change in outcome because of the bleed but I really felt at that moment that we will never catch a break with this pregnancy/these babies.  She has a repeat ultrasound on Nov 6^th to follow the bleed. So far she has required 2 blood transfusions which I am told is very normal for extremely low birth weight infants. She was found to have some desaturations and bradycardia episodes in relation to her feedings so her feeds were put on a pump so she gets her 24ml of breast milk pumped into her stomach over 45 minutes. This started on 10/31 and has really improved her episodes of desaturation. We have had 3 days now of her being almost a perfect baby in that regard (but don’t tell her or we will jinx it).

So that is where we are in Miss Olivia’s short life. She is up to 2 lbs 12 oz, 11 oz above birthweight. All in all she is doing very well and we have had no major setbacks.  We continue to pray for her strength and growth as we never know what could happen over the next several weeks.

 

“Before I formed you in the womb I knew you, before you were born I set you apart.” –Jeremiah 1:5

Owen's memorial service

Just wanted to let everyone know, Owen's memorial service has been confirmed at 11am on Saturday, October 27th at St Peter Lutheran church in Middletown. Anyone who would like to attend is welcome.

Owen's Memorial Service

For everyone who has been following our story, we will be having a memorial service for Owen this coming Saturday, October 27th at 11 or 11:30 (Pastor is out of town and can't confirm time until Wednesday). The service will be held at St. Peter's Lutheran Church in Middletown, Spring &Union Streets, Middletown PA. Everyone is welcome to come celebrate our son's brief but memorable life. I feel like through his story he has touched many lives. I will confirm the time on Wednesday.

I plan to do a blog update on Miss Olivia soon.



"Each new life, no matter how fragile or brief, forever changes the world."

Delivery

I haven’t yet figured out how to cope with the incredible heartache I am feeling for Owen and the joy I am feeling for Olivia. Not entirely sure how to feel from one minute to the next.

From the last update we had decided on betamethasone injections Thursday and Friday 10/4 and 10/5 to help mature the babies lungs as I had been contracting so much. I know Josh posted of my admission to L&D on Sunday after contracting regularly all weekend. I know I should have presented and been admitted sooner but I was terrified that they would need to deliver the babies and I wanted Olivia to have as much time as possible before being forced into the world that she wasn’t yet prepared for. I also wasn’t emotionally ready to lose Owen. Dr. Michael, one of the neonatologists had said at our appointment on the 4^th that we will understand and know what to expect but we won’t feel it until it happens. He was completely on track with that statement. So we were admitted Sunday, I was contracting every 1-2 minutes with minimal cervical change. They decided to use magnesium to be aggressive in stopping the contractions. Also there have been studies on using magnesium for neuroprotection in babies delivered early so that was an additional plus to using that medication. I was given a 6g loading dose then placed on 2g/hr of magnesium thereafter. Anyone who has experienced this medication knows it is horrible. I had it with Allison as well. My face flushed, I was weak and bearly able to move. I had to have a catheter placed because of the inability to even try to get out of bed.  After the initial bolus my contractions spaced out to approximately 2-4 and hour for a few hours. They then returned overnight with a vengeance. Come Monday I was back to contracting every 2-3 min and had developed excruciating abdominal pain. The pain at that time was similar to when Emma was delivered because of the opening of my previous C-section scar. My scar not holding was one of the concerns of my doctors as well as the fact that Owen had turned head down and was likely pushing which was causing the labor. With the size of his head they were uncertain how long my scar would hold. The pain did not abate with any of the pain medications that were used so it was decided to do an MRI to make sure the scar had not already opened. The MRI was terrible. Even with 2 doses of stadol on board I could bearly stay still and had a terrible experience in that scanner. The final report on the MRI showed that my uterus was thin, but still intact at that point. They did however note that Owen had some blood noted in his tumor. It was decided to use around the clock medications and to try and control pain as best as possible overnight. It is just my thought at this point but I am fairly certain Owen was telling us something. He had had enough, his tumor was starting to bleed and he knew he was on his way out. He needed to be delivered and he certainly showed me that.  There was talk that day of the possibility of decompressing Owen’s head to relieve the pain caused by his head size on my scar. They don’t do that procedure at our hospital and I would have to be transferred to CHOP. It also had almost a 100% chance of being fatal to Owen during the procedure. I one, did not want to be transferred to a hospital with staff I was unfamiliar with and 2 was not going to kill one of my children for my benefit. I just couldn’t bring myself to even think of that as an option. The pain was never controlled Monday night and Dr. Pauli came back on service on Tuesday. We had a heart to heart that morning before Josh got there and she told me that there was something wrong and she really felt it would be best at this point to deliver but wanted us to have the option, no forcing us because we all knew Olivia would be so early and would have a long road in the NICU. I honestly am glad she came in just her and me at that time because I actually listened. Previous to that I had no intentions of letting them deliver me. I wanted Olivia to stay in as long as possible and I felt that as long as I could feel Owen moving I still had him and wasn’t going to lose him. I know you never are, but I was not ready at that time to lose him. Josh came in, she explained the situation to him then she left so Josh and I could discuss what we needed to do. It came down to risking mine and Olivia’s lives if my uterus ruptured. We both had our breakdowns, held each other and cried and made that horrible decision of delivering our babies knowing that this would be the day that our son would die.

We went through the usual C-section prep, spoke with Dr. Michael from the NICU and reiterated our wishes for Owen. We were blessed that day with the teams that were on in both L&D and in the NICU. Everything went very quickly from that point on. Quickly but also very smoothly. Spinal placed, prepped, NICU teams arrived, Josh came in and surgery was initiated. Because of the size of Owen’s head they were forced to do a classical C-section which meant they basically fileted my uterus open in an upside down T shape.  Even with that they still had difficulty getting him out, he was jammed very low in my pelvis in an attempt to get himself out. Owen was delivered at 12:25pm, was transferred over to one of the NICU teams and was stabilized. Olivia was an easier delivery, just up in my ribs and she was delivered at 12:26pm and was transferred to the second NICU team for stabilization.

Owen cried and Olivia came out screaming and throwing punches. Both were placed on nasal IMV and both did very well with such an early delivery. Olivia weighed in at 2lbs 1oz and 13 ½ in. Owen was bigger due to his head size and weighed in at 5lb 7oz and 15 ½ in. Owen was stable and doing well and was wrapped up and given to Josh while on his nasal IMV for support. Josh was able to hold him through the majority of the remainder of my surgery before they took him to the NICU. He was breathing and looked comfortable. He did not appear in any pain which was one of my big concerns as well. He seemed to respond when we spoke to him. He was just as we expected, big head due to the hydrocephalus but not significantly swollen elsewhere. He was beautiful. Olivia was stable and transferred to the NICU first but they gave me the opportunity to give her a kiss before she left. I was very happy about that since when Emma was born she was transferred without me ever seeing her. Owen stayed with us for longer. He then went up to the NICU to be watched until my surgery was finished. It took them significantly longer to close seeing as they had to do significantly more cutting to get the twins out. I was transferred to recovery and watched for about a half hour before we got the call from the NICU. Owen was declaring himself and they wanted us up there as soon as possible. I have never seen so many people rush into my room so quickly. I had attendings, residents and several nurses all getting me up and out of bed (still couldn’t move my legs much due to the spinal) and eventually the chief resident of OB/GYN pretty much picked me up and put me in the wheelchair. They were kind enough to go along with us to get us to the NICU as quickly as possible. We got there and knew we only had a little more time with Owen. It appeared his tumor had started bleeding and he was basically bleeding out into his head. He had a pulse and agonal respirations at that point. He was brought to me and I got to hold him for the first time. I will never forget how he looked and how he smelled. He was the most beautiful little boy I have ever seen.  His eyes fluttered when I spoke to him and I was able to tell him how much I loved him, his daddy and all his sisters loved him. I was able to hold him and cuddle him just like I wanted to. Our pastor arrived in time and we were able to baptize him prior to his passing and had two different pastors pray over him. That was the longest and the shortest hour of my life.

Owen Graham Adams was pronounced dead at 4:04pm on October 9, 2012. This is a day that will mean so much to me for so many different reasons.

The grief I feel because of losing Owen is almost overwhelming. Some days I have no idea how to even process it. I would never wish this kind of pain on anyone. On top of this unbearable pain I also have a ridiculous amount of joy for having our tiny Olivia. I think the hardest thing for me at this time is balancing these emotions for the good of Olivia and my sanity. Some days it is ok, some days the balance is definitely off and I just want to stay in bed.

Olivia has done very well over the past 5 days. Hasn’t done anything foolish and according to Dr. Michael is right on track at this time. She is going to have a long stay in the NICU and barring any major setbacks my goal is to have her home by Christmas. It is difficult for me to sit in the NICU for extended periods of time. Because of her lines we are unable to hold Olivia and basically just sit by her side while we are there. As I sit my mind wanders and I start thinking that this is the place that I lost Owen. It just makes it hard to spend a lot of time up there. I have been visiting daily and occasionally helping with her care. She responds to me when I hold her hand and that always makes me smile.

We will be having a family graveside burial for Owen tomorrow. I know I am not prepared for that. We are also planning an open memorial service but have not set up a date/time as of yet for that.

I will never be able to express the gratitude I feel for everyone who cared for us at Hershey. They made things happen I never thought could. Drs. Pauli and Curtain provided me with the best care I could have asked for, were always there to answer questions and provide support and made sure everything ran as smoothly as possible so we could have the maximal time with our son. The labor and deliver nurses were fantastic. They did so much for me and provided more emotional support than I could have ever asked for. The entire staff working in L&D the day I delivered were amazing and I know God was looking over us when that schedule was put together. The same feelings go out to the wonderful NICU team and especially Dr. Michael. He made sure everything that needed to happen did so we were able to spend our time with Owen. The NICU team was very supportive and even made us a beautiful box of keepsakes to remember Owen by. I will forever be indebted to all of these wonderful individuals who helped us to have the most memorable time possible with our Owen before he passed.

This has been incredibly hard for me to write and I have been working on it off and on for several days now so if it seems disjointed I attribute it to that.

I will always remember my Owen. He was the most beautiful little boy a mother could ask for. I have no idea at this time why we were blessed with him but I know there is a reason. I look forward to holding him again one day and until that happens I will always hold him in my heart.

Columbus Day, 2012

So we're here at the hospital now. Admitted yesterday at 5:15 pm and as of right now, still pregnant with both twins. Cathy had a lot of pain over the weekend which is what led to me and her doctors forcing her to come here.

She was given magnesium as tocolysis (medication to stop contractions) and for a little while at least, it worked. By 3 am, she had gone from contractions q 2-3 minutes to only having 2-3 per hour. But then the contractions vengefully returned with new underlying, continuous lower abdominal pain.

Cathy got a few doses of pain medicine, but it really only succeeded at making her sleepy. The ultrasound and repeat exams didn't turn up anything concerning, but also haven't revealed the source and nature of the pain. Right now, Cathy is at MRI to evaluate the tissue of the uterine environment and determine whether it's safe to continue carrying the twins...

-Josh

Update

Today we are 27 1/7 weeks.

So we had a morning full of appointments yesterday. We started by meeting with neonatology, with Dr. Michaels who was the neonatologist who took care of Emma the week that she was discharged from the NICU. I have always really liked him as a physician, he is to the point, will tell it to you straight but empathetic as well. I am not a fan of people who don’t give you real answers. We discussed our wishes for how we would want to proceed when the twins are born and how aggressive we wanted to be with Owen.  Of course as I mentioned before my biggest fear has been for some reason needing general anesthesia or him being taken to the NICU as comfort care and then not being able to spend any time with him prior to him passing. This appointment really helped to calm those fears. Dr. Michaels said that if for some reason I cannot be with him right away they are more than willing to provide an airway to keep him going until we can all spend some time with him. They also told us about the “hummingbird program” that they use on the pediatric services. For me it would be the palliative care team on the adult side. They will be able to help us write down more specific goals for delivery and what we want to happen when Owen is born. Obviously there are many variables that come into play here and there will likely be decisions made on the fly but Josh and I are completely on the same page with our goals so I know if decisions need made I can’t participate in that he will do what is best (I can’t say enough about how amazing Josh is and everything he has done to support me and our pregnancy). Olivia will obviously have everything done that she may need depending on gestation at delivery, and will head directly to the NICU. We meet with one of the coordinators for the hummingbird program next Wednesday after our next MFM visit. I definitely felt more comfortable with the possible outcomes after our meeting yesterday and am grateful the NICU team was willing to meet with us at this time.

We then went to a repeat ultrasound in the MFM department. I have to say, our MFM department has treated our situation and us with more thoughtfulness than I would have expected. We have always had the same ultrasound tech so we don’t have to explain our situation and all the attendings we see sit down and spend the time to answer any questions we have. Our ultrasound was not unexpected. Owen’s head is bigger, measuring 43-44cm, which compares to a 44weeks gestation pregnancy. With the size and type of tumor he has he is at significant risk for hydrops fetalis which is basically him retaining fluid all over his body. At this time they said he doesn’t look like a typical hydrops baby. The vast majority of fluid he is retaining is inside his head rather than under his scalp or skin. He was noted to have a little bit of fluid around his heart on this ultrasound but the attending reading said it wasn’t enough for him to be concerned at all at this point. The rest of him has grown well and he continues to be active. The attending did say though, that there was basically no recognizable brain tissue on this scan. The more concerning part of the ultrasound was Olivia. She has slowed with her growth, most likely because she does not have the room that she would have had if Owen’s head wasn’t so big. She is measuring right at the 10^th percentile. To be classified as a growth restricted fetus you have to measure anywhere under the 10^th percentile. She is very much borderline growth wise but otherwise looks just fine.

At our office visit after the ultrasound we discussed more fully what may be happening in the coming days/weeks. They are concerned about the slowing of Olivia’s growth and we may be looking at starting non stress tests in the next week or two to make sure there is nothing concerning with Olivia. If she tests poorly at any time though, they would recommend delivery at that time. They are also concerned with the frequency and consistency of my contractions even with bed rest. It appears my cervix has thinned to half of what it was 2 wks ago but is still closed at this point. Their concern with delivery in the imminent future is enough that we were recommended steroids at this time. We were given the choice but it came down to the fact that better to have them in than have to go to an urgent c-section and Olivia didn’t have the chance to have steroids to help mature her lungs. I had my first betamethasone injection yesterday, my second is today at noon. I did not get the sense that they expected me to be pregnant much longer. We have a follow up office visit next Wednesday when I will be 1 day shy of 28 weeks. We will readdress the need to start non-stress testing at that time and hope that everything continues to be stable.

Cathy

“Before I formed you in the womb I knew you, before you were born I set you apart” Jeremiah 1:5

Holding steady

Not a lot going on right now. Everything seems to be holding steady at the moment. Our next appointment is not until Thursday when we have an entire morning of appointments. We meet with neonatology, have yet another ultrasound and then have our MFM appointment. I think the meeting with neonatology is going to be the most helpful for me. I honestly just need reassurance from them that Owen will not be going anywhere, we will get him immediately and we will be able to spend as much time as possible with him. I would never forgive myself if I didn’t get the opportunity to hold him, tell him I love him and at least have one opportunity to cuddle with him.

Our MFM team feels it necessary to meet with peds neurosurgery prior to delivery, however they apparently don’t feel it is very important as they haven’t called to schedule an appointment yet. I’m not sure that they will provide much useful information. Being a neurologist I work very closely with the neurosurgeons and I know they are aggressive (much more so than neurologists). With everything I have read and how Owen’s scans look I don’t feel that this is the best time to be aggressive. That may sound odd to some people but I don’t want him to undergo several operations, shunt placement etc. just to live a life that no one would want (if he were to live through the procedures). There is no way with how destructive this tumor has been to date that he would lead a meaningful life.  I just cannot fathom putting my child through that. Others may not agree with this statement but I have seen these kids in all stages of their lives and it is not the life I can imagine for my child. My thought is that the palliative team might be an appropriate meeting. My main goal for Owen is that no matter how long he lives that he is comfortable and in no pain. I know hydrocephalus can be painful and at this time he has significant hydrocephalus.

On a brighter note, one of my friends who used to work on my floor in the hospital and now does a lot of photography offered to take some family and maternity photos this past Saturday. Nicole Bouch-Wheaton photography if you are interested. You can visit her website at www.nicolebouchwheaton.com or her page on facebook. She works in the OH and PA areas and is amazingly talented. The girls acted ridiculous like always, but Nikki managed to get some amazing pictures that I will always have to remember these babies and this pregnancy by. This was definitely the highlight of my week. I had such a good time and got to meet her beautiful family who I hadn’t had the opportunity to meet previously. It was a good day and I am forever grateful to her.

 

I continue to contract when I am up, and if it starts it is really difficult to stop them. I get so tired of laying around, feel so useless and get uncomfortable always being in the same position that it becomes difficult for me to just stay on the couch. My goal is really not to be admitted to the antepartum unit until absolutely necessarily so I do my best to stay put. I do not want to have 27,29 or even 30 weekers. If I can make it to 31-32 weeks I feel more comfortable about the NICU stay for Olivia. I want her to do as well as possible, just like her big sister Emma did.

I will continue to update as things happen. Right now we are waiting for the appointments on Thursday and to see if there are any concerning changes. I want to thank everyone for their thoughts and prayers, we greatly appreciate it.

Dad's initial perspective

I want to start by saying my posts will likely contain no more eloquence than Cathy's, though I'm flattered she thinks her husband is such a great writer. When she said "I think I want to blog about what's going on", I supported the idea for a few reasons: 1) I feel like it's going to provide a diversion for her during bedrest 2) I think it's good to let friends and family know what we're experiencing and how we're feeling and 3) Maybe someone reading about us will find something helpful.

I had been writing privately about my feelings since the ultrasound at 23 weeks when we found out something was wrong. Here's a summary of what I've written up to now:

September 7th - 23 and 1/7 weeks
Though it's too early to tell right now, today could be one of the saddest days of our lives coupled with a life changing day. During a routine ultrasound of the twins, the sonographer spent far more time looking at Owen's head than usual. She went out and came back in with Dr. Pauli who confirmed our worst fears. She was matter of fact, but compassionate as well. "There's a finding on twin A, and it's serious." She then went through some of the images with us. There was a large "echo dense" region in Owen's brain signifying old blood. Nothing at all of this nature and certainly not this magnitude was apparent on the last ultrasound three weeks ago. Even though we are both healthcare professionals, that gave us no protection or added insight. At that moment, we were just two expectant parents who were being told that one of our babies will have major brain damage if he survives at all.

One of Cathy's main concerns is how to tell Allison, our 4 year old. I really think kids see limitations and differences far better than we do. We were waiting at the lab for our blood draw, and I pointed out how a little black kid had started playing peek a boo with another little white boy, about his same age, but breathing through a tracheostomy and in a stroller accompanied by his ventilator. Neither of them took any notice of how the other was different. I know that's how our kids will treat Owen.

September 10th - 23 and 4/7 weeks
I worked 12 hour days Saturday and Sunday, which was somewhat helpful because I was able to take my mind off the situation for a while. But then invariably I would encounter someone else in the hospital who had just found out we were expecting and ask lots of questions and be congratulatory. We've limited who we've told about the ultrasound so far; Cathy told her residency coordinator, a friend/fellow resident, and today plans to tell her chair and fellowship director. The only person I've told is my mom, who has informed my dad, brother, grandma, and aunt.

Because the girls' behavior lately has been off the charts, I asked my mother to come stay the weekend and help Cathy control them. I think the girls enjoyed it. They got to spend more time outside then they probably would have, and they went to Hershey Gardens to see a butterfly exhibit. I’m told that though my mom did witness a few of their classic meltdowns, they were well behaved mostly. Emma peed on the potty a total of 5 times in two days - a new record for her. I think the primary motivator is that she gets a Dum Dum lollipop every time she goes.
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I had bought this book awhile ago, before Cathy got pregnant, but never had the chance to read it and then once we found out she was expecting, I thought it might be bad mojo so I just put it aside. It’s called “Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU” and the author was an OB-GYN resident when his third child was born unexpectedly at 26 weeks. I decided to start reading it today, and found this passage that sums up pretty well how I feel right now: “Knowledgeable enough to understand that disaster was unfolding but lacking the skills or standing to do anything about it...”

September 12th - 23 and 6/7 weeks
Well, today is my 31st birthday. Spent it getting Emma up & ready for school, and then at an appointment for pediatric neurology. The pediatric neurologist will basically be involved with following Owen’s neurodevelopmental progress and any issues along the way including CP or seizures.

Ben Folds’ birthday is also September 12, which led me to listen to the song “Gracie” about his daughter. “You can’t fool me, I saw you when you came out. You’ve got your mama’s taste but you’ve got my mouth. You will always have a part of me nobody else is ever gonna see, Gracie girl...Life flies by in seconds. You’re not a baby Gracie, you’re my friend. You’ll be a lady soon but until then you gotta do what I say. You nodded off in my arms watching TV. I won’t move you an inch even though my arm’s asleep. One day you’re gonna wanna go hope we taught you everything you need to know, Gracie girl. You will always have a part of me nobody else is every gonna see but you and me, my little girl, my Gracie girl.” Reminds me a lot of Emma & Allison and my very different love for both of them, and the love that I will have for Olivia and her brother Owen.

September 15th - 24 and 2/7 weeks
Well, yesterday we had the fetal MRI. I wasn’t even aware Hershey did fetal MRI, but apparently they do 4-5 per month. The purpose of the fetal MRI was to differentiate the mass - hemorrhage vs. tumor. You don’t have to be a radiologist or even a medical professional to realize that these terms in any kind of radiology report are not good: “Tenacious...large...expansile...aggressive... significant.” So Owen has a brain tumor, and its growth, like many tumors, is exponential. It is likely a teratoma, but the type of tumor is irrelevant at this point. There are no words...

September 23 - 25 and 3/7 weeks
Not much has changed in a week. A few other people have learned of our situation and I'm thankful for that right now. It's hard to keep things bottled inside. Cathy is so tired and in so much pain I try to do as much as possible at home in terms of preparing meals & cleaning, but unfortunately this was my weekend to work so she spent two very long days alone with Alli & Emma. Our next OB appointment is October 4, and we meet neonatology and neurosurgery on the same day.

The worst day of my life...

At our 23 week ultrasound there was an “abnormality” noted. Dr. Pauli was reading that day and came in and tried her best to explain an incredibly difficult situation to explain. Baby A, our little boy appeared to have a mass in his brain. They couldn’t tell for sure exactly what it was. It had multiple densities on the ultrasound and appeared somewhat cystic.  Their best guess was blood. They thought he had an intraventricular hemorrhage at some point over the past 3 weeks. I had no trauma so it made a bleed rare, but possible. They also introduced the idea of something called neonatal alloimmune thrombocytopenia which is basically my body making antibodies against the baby’s platelets. Again extremely rare especially since baby B was perfectly fine. Although with the research I did with the babies being fraternal it is possible just again ridiculously rare. They also introduced the idea of tumor, however felt it was less likely as it was large and typically tumors do not grow that quickly. They scheduled me for a fetal MRI(I had never heard of this prior) on 9/14/12.

I am a doctor… this means I deal with pretty much everything differently than lay people when it comes to anything medical. I looked at the pictures, I knew it wasn’t good but being a neurologist I knew that early injury can still do well. It was big, took up most of the right side of his brain and pushed some onto the left. His head was measuring big, 26 weeks instead of the 23 it should have been.  There wasn’t any definite hydrocephalus at that point but I felt like I couldn’t let myself be optimistic at that time. I wanted to, wanted to hope and believe that everything would just go away in the week prior to the MRI, but I see the worst of the worst. Most physicians you meet are pessimists, I am no exception.  I was pretty much in a daze through the next week. Managed to celebrate Josh’s birthday with a smile, although it was definitely forced. I know I went to work, didn’t kill anyone and managed to make it to Friday the 14^th. I can’t tell you how many prayers I said for strength and peace for that week but I will be completely honest. I was angry. I know why something like this would happen to us. We love our children and would do anything for them.  Then I prayed that God would heal him, that everything would be fine when I went for them MRI. I tried to tell myself he isn’t going to give me something I can’t handle. I wasn’t sure I could handle something like this though.

The MRI was at 10:30am. We talked with Dr. Hulse, a pediatric radiologist who explained the procedure and what they would be looking for. He said that they would do 3 scans on each baby to evaluate everything they could while they had me in the scanner. He estimated it to take approximately 30 min. Anyone who has had an MRI knows how uncomfortable those MRI beds are. I must say, they are much more uncomfortable to someone with a gravid uterus with two babies compressing your major vessels taking blood back to your lungs. They did many more than 6 scans, I assumed it was because they were moving. As I was  on the table for almost an hour I assumed the worst.

I walked out and Dr. Hulse asked me if I wanted to go over the pictures with him. I of course did, who would give up the opportunity to discuss with the person who knows the most about these type of scans. He pulled up the first one of baby A and I knew it was bad. He scrolled through sagittal and axial cuts of the MRI and showed me all the aspects of what we were looking at. It definitely was not a bleed. I could tell that immediately and didn’t need him to explain that. It was bigger than on the ultrasound a week prior and had more involvement of the left side. It appeared to be a tumor. Massive and very highly aggressive to have grown this large in only a month. Looked like it originated from the third ventricle but he could not be certain. He said that the most likely tumor that appeared like this was a malignant teratoma. The other option he mentioned was a glioblastoma. Neither one was better than the other.

We had a meeting with the pediatric neurologist right after our MRI. She is a dear woman. Someone I greatly look up to and was glad she was the one we would be seeing. She walked into the room and knew we knew. Unfortunately she had nothing to offer us. She had sent a message to the pediatric neurosurgeons but with how everything looked no one thought that there would be a neonatal surgeon out there that would touch him. The tumor was too big, too aggressive. I left stunned, devastated and unsure of how to process this information.

We then went directly to a meeting with our MFM  doctor. He went over the process we would likely be going through over the next few weeks. Right now it would be a waiting game. Frequent ultrasounds to follow head size and make sure he was still functioning. If he were to develop hydrops or polyhydramios then he could put his sister at risk and we would be talking about urgent delivery. Right now he looked like he was still doing everything he needed to do. Baby girl looked great. MRI showed every part of her looked perfect and she was still growing well despite him having a big head.

Mark 9/14/12 as the new worst day of my life.

I still didn’t know how to process this information. I was completely devastated. Our little boy was just given a death sentence and I could do nothing about it. I am supposed to be the person that fixes these things, not the one that has to personally deal with them. I had several breakdowns, although I tried to keep them to myself as best as possible, as I still hadn’t figured out how to even approach this with Allison and Emma. I had a thousand things going through my mind. How long do we think they will stay in before we deliver? No idea, take it one week at a time. How do you contemplate losing a child before you have ever even met them? Still haven’t come up with an answer to this one. Do we need to start planning funeral services now? Still haven’t delved into that one… besides picking out some music I would like to use. Will I be able to hold him even though we know I will be having a c-section? We meet with neonatology next week but they apparently deal with this sort of situation frequently and we will have as much time as possible with him after delivery. One of my coping techniques I guess was to research the tumor he has. Incidence is approximately 0.3/1 million births. One of the most rare things you can see. Of the very few babies born with a malignant teratoma 97% pass away within 1 week of delivery. 30% of those are stillborn. The later they are diagnosed the better chance they have at survival but the survival rate is still only 3%. It is almost unheard of to find one as early as we found Owen’s. Typical diagnosis happens between 28-34 weeks. Hydrocephalus is inevitable as it is a 3^rd ventricle tumor and will most definitely block CSF flow. We have to hope his head doesn’t get too big too fast so we can give Olivia as much time as possible prior to delivery. I sort of stopped with research there. It was not comforting.

I still occasionally get angry about dealing with this, but am trying my best to at least stay optimistic for certain things. I pray he is born alive and I can spend at least a few minutes with him. I pray he stays healthy enough to keep his sister in long enough to where she has an uncomplicated NICU stay. I specifically pray several times a day for strength and peace. To know we were blessed with Owen for a reason and someday I will know why.

Right how his head is big… really big and it has made my uterus very irritable. I am basically on bed rest from here until delivery so I thought it would be a good time to start letting people know what we are experiencing.  Both Owen and Olivia are very active and are good at keeping me up at night. I feel blessed to feel them inside of me.

We have another appointment and ultrasound next week when we hit 27 weeks. Pray that everything continues to look stable at that time.

Cathy

Our Journey from the beginnng...

Bear with me… I am not a writer by any means. Josh’s entries will most likely sound much more eloquent than mine, but I think this will be a means for us to share our story and relieve some bottled emotions.

Our journey started back in April of 2012. As many know Josh posted an April fool’s joke saying we were expecting twins. I’m not entirely sure how many comments there were about karma. At the end of April we found out we were expecting again. We knew we wanted another baby and were excited that it happened so easily. At 6 weeks pregnant I started having severe left lower quadrant pain. Being a doctor and always expecting the worst I assumed I must have an ectopic pregnancy. I made a couple of phone calls, called in a favor and had an appointment to have a quick ultrasound that afternoon (instead of going to the ED… which I avoid at all costs.) I happened to be seen by the chair of the department for OB/GYN at the hospital, who is amazing I must add, and as she was doing the ultrasound she had the screen pointed towards her. All she said was… huh, that’s not what I expected. That of course freaked me out and she spun the screen around for me to see. She asked me what I saw… All I could think then was seriously I am in this position, afraid of the worst and you are pimping me? Really? Then I looked and it was grossly obvious that there were two sacs… both intrauterine. We found a heartbeat on one and a good looking yolk sac on the second. She was very optimistic at that time and had us follow up for another visit in two week with an in office ultrasound at that time as well.

Our appointment two weeks later was with another of my favorite physicians, Dr. Jaimey Pauli. She was an MFM fellow and delivered Emma. She was just finishing her fellowship at the time of our appointment and was staying on as an MFM attending. She did the usual workup for our first visit and did a quick ultrasound. We saw both babies heartbeats at that appointment but one was measuring significantly smaller than the other so we were sent for a higher level ultrasound at the MFM office the next week.

The next ultrasound was much more reassuring. Everything looked good at that time. Babies were measuring just a couple days apart which is totally normal and they looked like di-di twins (diamniotic, dichorionic) or fraternal. This was a huge relief for me as I knew we would not need to worry about twin to twin transfusion syndrome. At that point because of my history of preterm delivery of both Allison and Emma we transferred care to maternal fetal medicine and started seeing them every 3 weeks.

The next several weeks were pretty similar to my previous pregnancies. Horrible nausea and vomiting, feeling ridiculously tired and still trying my best to get through the last couple months of residency. I do feel like I started showing earlier with this pregnancy (I blame it on the fact that there were 2, it may have just been bloating.) I also got over my nausea at about 16 weeks which was completely new for me. My pregnancies with both the girls I was puking until the day I delivered so I felt very blessed and had this gut feeling that at least one of these kiddos was a boy.

We introduced the idea of new brothers or sisters to the girls. Emma wasn’t terribly interested at that point but Allison was so excited. She told me we were going to have a girl and a boy and was completely set on this from the beginning.

After several reassuring ultrasounds we felt safe to start telling people of our amazing news. I knew twins would be difficult but knew we could always have family and friends we could turn to and could not help but be excited about the thought of having two babies.

We had our standard anatomy screening ultrasound at 20 weeks to the day. It was a great day. Both babies looked perfect. They both weighed in well and were growing right on track. We found out that we were expecting our first boy (baby A) and another little girl (baby B). I left that appointment feeling great and went out and bought our first little boy outfit that week. Because of my history of preterm labor and difficulty with Emma’s delivery they wanted to monitor me closely so we were brought back in 3 weeks for another ultrasound to monitor growth and for a follow up appointment. That appointment was 9/7/12 and probably ranked as one of the worst days of my life.