Liam's Story

Trying to get pregnant
When we finally got pregnant with Liam it had already been over 2 years of trying. The first year just consisted of mainly stopping all birth control.  Well between trying to get my cycle and Derecks work schedule to work out we didn’t manage to get pregnant. We next decided to speak to my Ob Dr. and see what she had to say. The first thing she wanted to do was try and get my body on a normal cycle that would work with Derecks schedule. Well that sounded like the obvious way to go about things, but my body decided differently. One month it would cooperate and then the next it wouldn’t, stupid body. We also ended up trying a round of clomid, a fertility drug to see if that would help. Still nothing! So my doctor thought that maybe it’d be best to go see someone who specializes in infertility.  We ended up seeing this Nurse Practitioner who explained to us multiple different ways we could go about getting pregnant by using clomid again, an IUI, or IVF. She also had ran some blood tests on me and realized that I had high prolactin levels and put me on a pill to lower that. She says that the levels aren’t high enough to be concerned of having a tumor in my pituitary gland but that they are high enough that they could mess with ovulation. Okay scary, I don’t need to hear that. Dereck also had to get a sperm test done to see if maybe he was having issues with trying to get me pregnant. But as usual, his sperm are wonderful the nurse says, so yeah I'm the reason we can’t get pregnant. Both Dereck and I were also feeling like we weren’t getting the answers we had wanted from her and asked my original Ob Dr. if she would just work with us instead. After meeting with my Ob the next time she sent us to do a hysterosalpingogram to see if my fallopian tubes were blocked, but everything looked great there. She then decided that she needed to get me back on birth control for just a month to force my body to have a period, because at this time I had maybe 4 in the past year alone. My Dr. then informs me that my body was acting like it was in menopause, not what I want to hear at all, and that chances are I haven’t actually ovulated in years. Not liking my body at all now. Did a few on and off months of taking the pill and then getting a period with no pregnancy to follow and then no period again, so back to the pill again. This repeated about 3 times before we decided to do an IUI. This was rather scary to me because I also had to give my self a shot in the stomach around 12 hours before getting the IUI. Took the clomid, took the shot, and got the IUI, but again the following month still not pregnant. Body why can’t you work for me I thought. Oh and also at this time I had even tried acupuncture a few times because I heard that can help with getting pregnant.

Finally getting pregnant
On July 20, 2010 we went in for our second IUI, followed the same process as last time, except this time the shot went in butt. Yes, finally we got pregnant!  It was so exciting to finally see a positive pregnancy test after so many negative ones and so many let downs. Before we had gotten that second IUI I wasn’t even really feeling excited to do this stuff anymore because I was so sick of the constant let downs. Thank god I didn’t just give up hope.
We went in for our first ultrasound on August 3rd and saw the start of our growing little baby. My Dr. also talked to us about getting a prescreen done to check for down syndrome and a neural tube defect.  Of course we had to get it.  I am an information seeker, I need answers and I need them now.
Dereck and I also had wanted to tell family right away about our news but decided to wait and tell family when we came home to visit Labor Day week. We told family and of course they were excited for us and then after we got back home I finally told my friends. It seemed that once I starting telling people I was pregnant the less invites I was getting to do anything outdoors. It really hurt, I mean I know I was slower and could only go half as far as before, but felt like I wasn't good enough to even talk to if I could no longer keep up. That first month I had been pregnant I had felt great. I just remember how one day I did a 14 mile hike and then the next week through the next 2 months I barely had energy to get off the couch. Liam took it super easy on me though, I was tired a lot for about 2 months straight but at least I wasn’t sick all the time.

First sign of bad news
We first heard our baby could have Spina Bifida when we got back the results of the prescreen we had done. I believe that it was around 12 weeks. The results of the test showed that our baby had a 1 in 30 chance of having a neural tube defect. I instantly started crying, how could this be, why my baby?  After we left the doctor Dereck tried convincing me that these tests can have false positives and that it’s still a 1 in 30 chance. People at work and friends also all kept telling me that I shouldn’t have even taken that test because its just away of causing concern about something that you aren’t even a 100% sure of yet. Somehow I felt at this time I already new. I know it’s a very pessimistic way to look at things, but sometimes I feel like bad luck just follows me,. I tried to stay optimistic for Dereck, and really at this time the worrying wasn’t going to get me anywhere.
In October my energy was starting to come back so I was eager to be able to get out again and do the things I love with my friends. Unfortunately in that down time of sleeping all the time I lost all my endurance.  Three to 5 mile walks were pretty tiring and couldn’t handle anything with an incline. I did try to do light jogging with a friend a few nights a week for awhile and even starting lifting weights again. So things were definitely looking up.

Finding out the sex and more bad news

We were eager to find out about the sex of the baby but had to wait to go in and find out because Dereck was working and then also Thanksgiving got in the way. So on December 2nd we had our ultrasound. I had been saying all along that I had really wanted a girl and was actually upset when I heard it was a boy.  The Tech did all of the measuring saying that everything was the correct length and size for his gestation but said she was having a hard time getting good pictures of his spine and head. We then went and saw our Dr. after that who immediately says she has bad news. She then informs us that he has a large skull because his ventricles are huge and pushing on the back of his skull which was also causing the classic banana sign, all of these things are signs of having a baby with Spina Bifida.  I left the Dr.’s office crying again that day. What’s wrong with me, my only concern should have been just a healthy baby, I can't believe I was complaining about not having a girl. 
After we had found out the sex that day, even though we were so sad from the news we had heard we had to tell all our friends that we were expecting a baby boy. We also played a joke on our good friends Liz and Kevin and had told them we were having a girl. They also had invited us for dinner that night to celebrate. We weren't really feeling much like talking that night and had responded to them a few hours later that we wanted to stay at home. Well people can't keep secrets and someone sent me a text saying that they couldn't make it to our party. Apparently Liz and Kevin had decided they wanted throw us a party that night to celebrate the news.  So we decided we better go then, plus it'll be funny to see the look on Liz and Kevin's face when they find out from everyone else that we are really having a boy. So we went and it was funny that they were confused at first but assumed since they were the only ones who were told a girl that it was probably a boy. It was a lot of fun and definitely took our minds off of everything else that was going on.
We did have some good news that same week though. I finally felt Liam kick, I wasn't sure for the first week if I was just having bad indigestion or what, but the kicking alone made the bond that much stronger.

Learning about Moms study and the journey to get in it
A week later we had got an appointment with a Perinatologist. We had wanted to get in a lot sooner, I needed answers now, and also having to wait to get in meant I’d have to go to that appointment alone. The Perinatologist did her assessment pretty fast with a more high tech ultrasound machine. I didn’t really know what was going, and assumed things couldn’t have been to bad.  I also spoke to the genetic counselor that day. She asked about both Dereck and my family history and also brought up this MOMS study she had heard about that was a research study comparing results between babies having there spina bifida corrected inutero versus the normal way after birth. The next day I went to work and started researching the MOMS study online and it seemed like a great thing to be a part of. I informed Dereck about it and he immediately read about it and let me know that he thinks it would be great thing for us to. My Ob Dr. also called me that morning when I was at work and wanted to discuss the results she got back from the Perinatologist. I was devastated by the news she told me.  Here I didn’t think things were as bad as they were until she told that my baby had Myelomeningocele, the worst case of spina bifida.  I broke down at work right there, how could it be so bad. My Dr. also brought up the idea of having an abortion, but how could I do that to him, he might have had a problem but I loved him already way too much. I also told her about the MOMS study and she said if we wanted to do it that she would do what she could to help us get into it. I gave her the number and she said she would call. After talking to her I had to leave work, there was no way I could stay there, and I also needed to get calling around to see what I had to do get into this study.  Dereck had been at work but Liz had been off that day and I really needed someone with me after hearing all that news.  My Dr. called me back after speaking to the people running the study and said that the study had literally just ended the Friday before but that they were allowing 10 moms to electively chose to have the fetal surgery. I was so excited but this meant that I had to get an amniocentesis done that following Monday and if that went good then we would have to leave for San Francisco within a week or so. Dereck had came home from work to be with me that weekend, also be at the amino with me, and to figure all this stuff out in the short time we had.  If everything went good for us we could be gone for up to 4 months since the baby and I would have to be closely monitored after having the fetal surgery.
That same weekend Dereck had came home was also the weekend of our friends huge As Seen on TV Christmas party. We decided to still go even though we were emotionally drained. It was a lot of fun but also so hard. It figures that when your pregnant everyone assumes that everything is going great. I got asked so many questions about how the pregnancy was going, but does anyone really expect to hear you say that things aren't, my baby has a serious condition and we might be having fetal surgery in a few weeks. Not that I couldn't have said that but we really didn't know for sure we were going to be able to get the surgery yet and at a Christmas party isn't exactly the time to be talking about that. So I put on a good face like everything was great. That Monday morning we had the amino done. After the test I had to take it easy since there was a chance that I could go into labor. Liam apparently thought different because after that appointment he was kicking so hard, it was the first time that Dereck and I were able to see him kicking.

We have a chance, off to California for more tests

Three days later the amino results came back which meant one week from today we would be in San Fran getting numerous more tests and then hopefully by January 3rd have fetal surgery since we had to have it done before 25 weeks and 6 days gestation. Luckily we have great friends that were willing to help us out as much as we needed. Brooke, one of my best friends was willing to stay at our house, get the mail and also watch our dogs for us. We didn’t want to leave our dogs behind but had hoped that after the first month we’d be able to have them come to wherever we'd be.  I also sent out a mass text to all other friends about what was finally going on and that Dereck and I will hopefully back in around 4 months with our little baby Liam.  Dereck had to go back to work so I got everything taken care of at home and flew to Minnesota for a few days. I had planned to be there for a week but with having to leave early to go to San Fran it turned into 3 days. The 3 days worked out well though since it was Christmas weekend.  The 26th we had also planned a baby shower for Liam, so it was nice to have been able to spend time with lots of family and friends that I didn’t get to see very often.  Liam got tons of great things, clothes, toys, books, etc. Also at the baby shower I had to inform people there about Liam's Spina Bifida and our journey to San Francisco.

More testing, meetings, and a little sightseeing
We both arrived in San Francisco that Monday the 27th. I had arrived at around 3pm that day and Dereck wasn’t coming in till about 11pm so I decided to go for a walk by our hotel. Apparently I didn’t pick a very good location for our hotel because not even a block from the hotel some guys had walked past and yelled, “Nice A$$”, and then when he turns the corner looks back and says “thanks”. I decided maybe I should turn around and go the other direction instead. Then about a block into walking the other way someone else whistles at me, so I decided maybe I need to just go back to the hotel and wait for Dereck before I do any more walking.
The next morning we had to get up early because our first appointment was at 7:30am and we had no idea where we were going.  We arrived at our appointment way to early so we checked out the area around the building. Once we went back inside and checked in we had a bunch of paperwork and waited about a half hour until we got called back. The MRI tech informs me that it should take about 2 hours to do both scans. They had needed to do a scan of his head and also of his spine. I wasn’t supposed to eat that morning which I didn’t, but little Liam was already up and moving around. Time seemed like it was going so slow. When the tech finally came in and pulled me out of the machine I guess it had been almost 2 hours already. I had asked if we were done and she informed that we still had to do the 2nd scan. Apparently Liam had decided that just before they were finished with the first scan that he was going to flip around and they had to do the entire scan over. I went to the bathroom and also told Dereck what happened and that it would be a little longer and went back and finished the next scan. That scan went a lot faster but now we were late for our next appointment. The tech said they would call over to the ultrasound place, which was at UCSF and let them now. We arrived at our ultrasound a little late but ended up having to wait for over a half hour to get in anyway. The ultrasound went good, the tech did all the same measurements as the other ultrasounds I have had, but this time we were told that Liam’s Spina Bifida was from L5-S4 not L4-S4. I guess not a huge difference but happy it was lower than higher on his spine. A doctor also came in after that and talked about the results with us. Our next test, an echo-cardiogram, we were even later for. The tech was really nice and we talked about San Fran throughout the scan. Another doctor came in after that and talked to us about the scan. He said Liam’s heart looked great, just what we wanted to hear. After a busy morning we finally got to take a break and have lunch before we had to meet with the rest of the fetal surgery staff for a consult. After lunch we went to the Fetal Treatment Center and met with a few of the nurses that were in charge of setting up all of the tests and meetings we were having and talked to us about the surgery and that if we went through with it what I would need to expect afterward. They also informed us that they hadn’t heard back from our insurance company yet so we would have to come back tomorrow to hear if insurance was going to pay or not. We also met with another doctor who was working on another research study and asked us about being part of that. Then we met with one of the main surgeons in the operating room and asked him all sorts of questions and concerns that we were having. By this time it was about 6pm and we still had to meet with the Perinatologist. He told us that he would be in the operating room with the ultrasound machine monitoring Liam through the whole operation. He also informed us that all of the risks are on me, not Liam, and that if something went wrong in surgery that they would save me before Liam. He then went over all of the different issues that could arise for me during the surgery. He then recommended to me that I should get these steroid shots so that if Liam had to be delivered early that they would help him develop a little faster.
The next day we picked up a rental car and did a little sightseeing to start off the day. We went and walked around Lombard Street and also went and saw the Painted Ladies-you might remember those from Full House. Back at UCSF we met with the neurosurgeon that’d be working on Liam’s back. We got our questions answered about that and then met with the nurses again about our insurance. It figures that insurance would deny our surgery since it was still technically in a research study that has no results posted. The nurses talked to us about the appeal process and that we would have to file one after the surgery and include the MOMS results so that they can see that the surgery is beneficial. We then had to discuss paying for the surgery. Since we were at the point that we would have to pay for the surgery out of pocket, unless we won the appeal, the hospital worked out a deal with us that if we would pay X number of dollars by Friday then they would write off the rest of the amount. That was awesome that they were willing to work with us but it was a holiday weekend and who has that kind of money sitting around. They told us just to think about everything that we heard these couple days before we make our decision and if we decide to go ahead with everything to make sure we pay that money by Friday and then check into the hospital on Sunday night and then we would be having the first surgery of the New Year, Monday morning January 3rd.
That night we were heading down to Palo Alto to stay for the rest of the week at a friends place until we would be admitted into the hospital. Palo Alto was about a ½ hour to 45 min drive from San Fran but we were happy to get out town, not to mention everyone we met with that day had asked us where we were staying and when we told them all what hotel we'd been at we got a lot of “Oh, sorry” and “Yeah, that’s not a very good side of town”. We also decided that since we didn’t have to be back in San Fran until Friday that we would take Thursday off and just hang out around Palo Alto.
Friday morning before heading to San Francisco we decided to head to San Jose and check out the Winchester Mansion. Afterwards we drove to Oakland so that we could take the Bay Bridge over to San Fran. Back at UCSF it was time to pay for the surgery. It was a lot of money and had to use a lot of credit cards but this was for Liam and he meant everything to us. After making that payment we had to run up to Labor and Delivery to get my steroid shot in the butt. It was also New Years Eve but we decided to just go have dinner in Palo Alto and just take it easy. We were both so exhausted from trying to find our way around San Fran. I felt so bad for Dereck because there is no way I could have driven in that city. Yeah, Happy New Years to us!
New Years Day we headed right back to San Fran to get that 2nd steroid shot. Today we also decided to drive north across the Golden Gate Bridge and check out Sausalito and Muir Woods. All of our days had been so nice so far and now today it’s very rainy and foggy. I had really wanted to get out and do some walking today since I’d be in the hospital for the next week but we barely even got out of the car, but the drive was still fun.
Sunday morning Jan. 2nd, we hung out with our friends for awhile, after all it was there house we were staying at and they had just gotten home from being on vacation. Today was my last day before being in the hospital for a week and then after that pretty minimal activity until my babies born, so what should we do. Since the weather was really gloomy and rainy again we decided just to stick around San Fran and ended up going to the Wharf. Mainly just did a lot of walking around, but it was nice to get all that fresh air. It was getting close to supper time and the nurses said that it would be my last big meal for awhile and I should make it a good one. I had no idea what I wanted to eat though and it seemed like every place that looked good to us we either couldn’t find a parking spot or they ended up being closed. I was pregnant, hungry, and had to go to the bathroom so when we finally found a parking spot somewhere we just got out and walked till we found a place that looked good. We ended up going into this cute little Mexican restaurant, I wasn’t really craving Mexican but they had a bathroom and I was really hungry and thirsty. We just ordered an appetizer and had some chips and salsa to tie us over till we found some place else to go. I still had no idea where I wanted to go and now it was getting late and not quite hungry enough to eat a huge meal anymore. We ended up just pulling into this dinner and having a milkshake. So my last big meal with my baby before surgery turned out to be an espresso chocolate milkshake.

January 3, 2011 the day I’ll never forget
We arrived at UCSF at about 9pm that Sunday night January 2nd and went up to Labor and Delivery. We checked in and got assigned to our room where we would be for the next week. That night I wasn’t able to get much sleep. Our nurse came in on and off all night with paperwork, checking my blood pressure, pulse, and temp., and at about 3am she also got the IV in my hand started. At about 5am she let me take a shower since it might be a few days till I could take another. Liam was also already wide awake at this time, probably starving, and was kicking like crazy. Anesthesia was the next to come in and visit me before going to surgery. They introduced themselves and proceeded with putting an epidural in my back. It is now 7 am and time to wheel me down to surgery. We ended up sitting outside of the operating room for about another 45 minutes, just enough time to let me get even more nervous. We then met a few more of the surgeons and nurses that would be helping with the surgery and they answered any last minute questions we had. My little Liam was still kicking like crazy as they finally wheeled me into the operating room. The last thing I remember was telling Dereck I love him and telling Liam he needs to settle down now so we can have surgery.
While I was in surgery Dereck had to return our rental car quick and then he would be waiting in our room for word from the doctors on how things are going. I was in surgery for roughly 4 hours and woke up in recovery. I can remember the doctors telling me the surgery went well but we had to deliver your baby, but he didn’t make it. At about that time Dereck had finally made it down to recovery and came to my side. The doctors also brought Liam over to us all wrapped in a blanket. I was devastated and numb all at the same time that this wasn’t supposed to happen. Dereck immediately asked if we could get the Chaplin down here, and right there in recovery our baby Liam was baptized. 

I don’t remember much after that until we got back to our room. Many doctors and nurses came in on and off that afternoon telling us how sorry they were and they just don’t know what happened and hoping an autopsy could give us and them some answers on why his heart decided to stop as they were putting the last stitch in me. We agreed to the autopsy but the doctors even said there was only about a 40% that we would even get any answers. We had our Perinatologist and the head surgeon for the fetal surgery write us up a timeline of exactly what happened during the surgery. According to the timeline the surgery started at 8:08am and by 8:22 anesthesia was completed and Liam was getting monitored by the ultrasound. By 10:35 my uterine incision was made, Liam positioned in the correct spot for the neurosurgeon to repair and close the defect, and the incision is starting to be reclosed. All this time Liam’s heart rate is steady and then it slowly starts dropping. The doctors finish closing the uterus and place it back in my abdomen hoping that’ll help, but it doesn’t and now his heart rate has nearly come to a stop. By 10:38 the fetal echo and NICU teams are called and Liam starts getting in-utero fetal resuscitation along with epinephrine. Liam did not respond so they reopened the uteral incision, put an IV in his hand, and continued CPR. More epinephrine administered and still no response from Liam, so they decided he had to be delivered. He immediately got intubated while still receiving CPR and when the cord was cut was handed over to the NICU team. During the time of 10:47-12:24 NICU, pediatric anesthesia, and the pediatric surgery team worked on trying to resuscitate him and at the same time the surgery team delivered the placenta and closed my uterus and abdomen. By 12:24pm, nearly an hour and a half after starting CPR on Liam, he was pronounced dead.

Hospital stay

After the surgery, back in our room, the nurse brought in Liam. She laid him on my chest all wrapped up in a blanket with an adorable blue knit hat on his beautiful little head. We did take a little time and looked him over. His back was completely closed up from the surgery; I was so happy that at least his back was fixed. We also checked out his little hands and feet, just so tiny and he also already had a full head of dark brown curly hair. The nurse kept asking us if we wanted professional pictures from Now I Lay Me Down to Sleep or even just getting pictures from a disposable camera that they had for us. We declined them both; we even had our own camera along and should have gotten some really good pictures of him. Liam slept in our room that first night. I was up most of the night crying and mad at the world. I should have bonded with him a little more since I didn’t have that much time left before he would be taken from us. Neither Dereck nor I were thinking very clearly, we were both still in so much shock. The next day we ended up finally letting the nurses take Liam for pictures and she dressed him in a little outfit they had provided. She also got his hand and footprints, took a lock of his hair for us, and provided us with a little memory box with some other stuff for us to remember him with. We did however have the nurse take 2 pictures of the 3 of us and then Dereck took 2 more of just Liam and me. When she was finished with that stuff she asked us for the last time to spend a little more time with Liam because she was going to have to take him soon for his autopsy. I held him on my chest one last time. It really sucked that I was so weak from my surgery and so mentally drained from everything that was going on that I couldn’t even bond with him the way I should have. As soon as Liam was taken from our room I wanted more than anything to have him back with me. I asked the nurse and she said it wasn’t possible now that they brought him to the morgue for his autopsy. I immediately made Dereck run down to Walgreen's down the road and develop the pictures that the nurse had taken. How thankful I was to have those pictures and to be able to see his precious little face again.  That night we also had to call family and friends because they were all patiently waiting to here how surgery went. I was way to out of it to want to talk to anyone so Dereck did all of the calling.

That second day the doctors wanted me to start moving. They had planned for me to be in the hospital for 4 days, with Jan. 4th being day 1 of recovery.  Dereck and I both thought really, were only on day one. We weren’t exactly excited at the thought of having to be there three more days. We could just here babies crying down the hall; after all we were on the Labor and Delivery floor. The first thing on the list for today was to get me out of bed and remove the catheter. It hurt like hell trying to sit up and then to have to walk to the bathroom, it took me forever just to walk those few steps. The nurse also took out my IV lines today and I started to take my meds orally. Also on the list for today was to try and eat more. I had eaten a little fruit the night before but that was about it. There weren’t any problems there though, because this girl likes to eat. The hospital food wasn’t too bad actually.
Recovery day two had now come, it was Wednesday, and I still had barely slept since the night before the surgery. I didn’t want to sleep; sleep meant I had to at one point wake up to another morning without Liam. Plus, how do you get any sleep when the nurses come in every 2 -4 hours to check vitals and give me more pain killers. I was at the point that I would just fall asleep at random times of the day from being so overtired. Today on the list was to do a little more walking, like down the hall, as long as I had a wheelchair along in case I needed to sit. The nurse even allowed us to go to the cafeteria and told us about this patio so we could get some fresh air. By that night Dereck and I were starting to get pretty accustomed to our little routine and feeling like maybe now we don’t want to leave the hospital. My friend Mary had came and visited us tonight since Palo Alto wasn’t a very far drive away for her.  She brought us some chocolates and also a stuffed dog. It was good to have company outside of the regular hospital staff since we had no family here.
Recovery day three is here, it’s Thursday. Doctors had to make sure that by today I had a bowel movement. Check, we’re good there. Again I didn’t sleep well. The doctors had even given me an Ambien and I was still up most of the night. Today was the day also that my breasts started to really engorge. I had heard it was painful and people were right. One of the nurses had told me that when that happens to ask for a Benadryl and that will help dry me up since obviously they weren’t going to be getting used. The first time we asked for a Bendaryl a different nurse came in to give us one that was not our normal nurse. She had asked why I had wanted one and when I told her to dry me up because my breasts hurt, she looked confused and asked when the last time I had breastfeed was. I had told her never and then she immediately walked out of our room and said she’d be right back. We assumed she didn’t read our chart first and wasn’t aware of our loss and we were right because when she came back in she felt so bad and couldn’t stop apologizing. I think we might have felt worse for her.
It’s Friday and we have to leave today, we are so sad. We don’t want to leave, we love our little routine. Oh the little joys of showering, eating, going for our daily walks to the cafeteria and patio, and the daily visits from the doctors, nurses, social worker, etc. The doctors say I am doing excellent and there is no reason to keep me another day. The doctors had arranged for us to stay at the Family House down the road for the night before our flight on Saturday. I guess we will still be in San Fran for one more night but leaving the hospital means I am leaving the place that I had my last memories of being with my baby. All I kept thinking was if Liam would be following me to the Family House and from there back to Minnesota and eventually back to Alaska.
Throughout these few days between all of the doctors and nurses coming in everyone kept telling me what a hero I was, trying to do everything for my son that I could. I was told that I did the most selfless and greatest act that anyone could do for their child.  Our Perinatologist said the only thing the least bit comparable is when someone donates an organ. He said that there may be many emotional benefits to me for doing it but there is no physical benefit. I guess he’s right on that since all of the risks were on me not Liam, and his well being meant everything to me. Yet, I still don’t feel like a hero, a hero saves the day, and everyone lives happily ever after.  Isn’t that how it’s supposed to work at least?

Family house
After getting my prescriptions and signing the last check out papers we got in our cab to go the Family House. We got to the Family House and met one of the workers, she seemed sweet. Apparently no one filled them in on the fact that we no longer had our baby though. Most of the MOMS study people had stayed there through the remainder of their pregnancies. One of the first things she had asked us was when we were due. She felt horrible for saying that when we had to tell her that our baby died the other day. She showed us to our room, gave us the grand tour of the place, and the rundown of how it works. We settled in and then hoped to take a stroll down to a nearby restaurant. Unfortunately they did not have any wheelchairs there so we had to stay inside. We felt so uncomfortable there. We did see one other girl there in the dining room and she had a little boy who was in a wheelchair. We wanted so badly to ask if her son had Spina Bifida and if she had been part of the MOMS study, but didn’t quite know how to ask that or if that was even appropriate to ask. That night it was really cold in our room but luckily there were plenty of blankets to keep us warm, and I actually slept really well, first time all week. The next morning we ate, showered, packed and cleaned up, and headed to the airport to go back to Minnesota to see family and plan a funeral. Again, like when leaving UCSF, I had those same feelings of not wanting to leave. I had hated San Fran so badly when we first arrived, just not fond of all the traffic, people, everything being so crowded, but now the city had meaning to me. This is where I went to help my son have a better life, this is place we had surgery, the last place I felt him kick, the place he died, and the last place I ever got to be with him.

Info about Spina Bifida
MOMS study
MOMS study results
and an article about it from msnbc


  1. Thank you for sharing your story. You are a hero to Liam. Trust me. You are. And to those of us inspired by your story.

  2. I am so sorry for your loss. Liam is a gorgeous little boy and very lucky to have you for a mom.

  3. Your story just breaks my heart. I'm so sorry that you had to go through this. I pray that you find some peace and are able to get your rainbow baby soon. Take care & God bless. *hugs*

  4. I am so sorry about your sweet Liam, he is just beautiful. Your story breaks my heart, thank you for sharing. I hope that you have been able to find a little comfort and peace in the last couple of months. ((hugs))

  5. Thank you for the beautiful story about your son. My nephews birthday (2) would have been tomorrow but he recieved his angel wings after 58 minutes. He had anencephaly which is in the same class as spina bifida. My sister went on to have a healthy little girl who just turned one and is expecting another little boy (we found out today). Sending blessings your way.

  6. I dont think I have ever commented on your story. It is an amazing story of such courage and love. Your son is so very lucky to have you as his Mommy!

  7. I am so sorry for your loss. I just found your blog. We had fetal surgery through the MOMS trial last summer in San Francisco. I know there are no words, but I pray you find peace.

  8. He had a beautiful head of hair.He was very handsome. I am so sorry for your loss as well. Well and fertility wishes

  9. I'm sorry for your loss. I lost my identical twin daughters 12-20-2010 (about the same time frame as you) I want you to know everything is going to be okay and you will find happiness again. Best wishes!

  10. Liam is a beautiful boy. I hope you don't mind me saying, but I think he looks just like you :)

  11. I'm so sorry things happened the way they did. It sounds like the medical team went to great lengths to try to bring him back. He is such a beautiful baby. I'm glad you have some photos of him dressed so adorably. One of my sadnesses is that my son was too small to dress.

  12. Thanks for sharing your story. I am so sorry for your family's loss of baby Liam, but he will always be your beautiful little boy and a loved member of your family.

    I had the same fetal surgery for SB at Vanderbilt on 8/2/2011, and may I be so bold as to say I know almost *exactly* how you feel. My daughter, Evangeline Amelia, was at 22w5d gestation that day. As they were closing up my uterus, her heart rate dropped, and the interventions did not work. She was my first baby, and she passed away.

    I don't have a blog, but if you ever want to talk please don't hesitate to email me. I think we're only two of a handful of people out there going through this.

    All the best to you always,

  13. Hello, my name is Nicki and I just wanted to say I am so sorry for your loss. Your little man is so handsome! My husband and I lost our baby girl, Ellersley, in August. She passed away soon after birth due to lack of oxygen and blood due to a placenta abruption. The ache feels like it will never leave...I will be praying for you and your family...

  14. Becky, i'm so sorry for the loss of your Liam.. he was so beautiful. We have photos of our Liam in a similar knitted baby blue hat too, photos that I look at every single day. Your Liam was a fighter, and so are you. I'm sorry that he's not in your arms today. xx

  15. oh little Liam! my heart just aches. I am a MOMS mom and I cant imagine what you have endured. Please know your in my heart and prayers!

  16. You guys are so brave. We lost our first baby to spina bifida and have yet not completely recovered from the shock.Little Liam will be proud of you whereever he is in the angel world.

    Amit ,India

  17. Liam was beautiful. Thank you for sharing him with the world. <3

  18. I also lost my last born to a heart disease that was the only one that was inoperable at the time. What helped me get through this was to think of my Jamie every day with a smile. He was 2 days old when he got his wings. 16 yrs later, my daughter was diagnosed with stage 4 skin cancer and she was 22 when she got her wings. They are now buried together and again not a day goes by that I don't smile or laugh about something I remember about them. You will get through this if you do like I told you. My prayers are with you and Dereck. Liam was such a beautiful little boy and you are so fortunate to have had him the short time you did and to have gotten the pictures you did. We only got 1 of our son. You + Dereck are so strong. May God bless you with happy, healthy babies in your future.

  19. took a lot for me to tell you all but I want to express it so that other parents are aware of SIDS and for those that lost there child to sids to know that YOU'RE NOT ALONE in this. God Bless. ♥ - Jen A Grieving Mother -

  20. What a beautiful, perfect, baby boy.


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