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.