Monday, March 29, 2010

Thank you all!

Thank you all for your support! Your comments are helping me cope. For my friends who have brought dinners, we truly appreciate them. Some days I don't feel like getting out of bed, yet going to the grocery and/or cooking so this has been a huge relief!

Many of you are asking if there is something you can do for us. In lieu of flowers or donating towards a memorial, I am requesting people give back to an organization that helped me get through this journey. The Nayeli Faith Foundation covered my stay in S.F. to help ensure I delivered at UCSF and they provided food. This really helped keep focus on baby and not the financial stress. Please send donations to:

Nayeli Faith Foundation
P.O Box 3192
Danville, CA 94526

Other organizations that have also provided us support are:

Your donations to any of these organizations, on behalf of A.J.,  would make me feel good knowing that I am able to pay it forward to another CDH family in need.

Austin was born 3/24 at 6:09pm and gone 3/26 @ 12:15am

How does a baby who has people from all over the world praying for him not survive? Not only that but he was a big boy...8lbs 13.5oz and 22in long! The biggest guy in the NICU, yet the sickest. He was suppose to be strong. I really thought he could fight all the odds. This wasn't suppose to be this way. I have all the post delivery pains but no baby! I want to understand why this has happened. I feel like I should have gone to Dr. Kays in Florida. I just feel like something went wrong because A.J. was suppose to make it. I want to feel his little hands and feet, his breath against my neck, his heartbeat against mine. I need him!

Thursday, March 25, 2010

AJ arrived 3/24 a little after 6pm

After 16 hours of labor, using cervical softeners, pitocin, and finally forceps to help get this little guy (actually big guy 8lbs 13.5oz) out, he finally made it. It was the hardest labor I've experienced but what else could I expect. This whole journey has been rough and I'd gladly suffer to bring my son into this world as safely as possible.

A.J. had a rough start from the beginning which was not a good sign. At first doctors didn't think he'd be strong enough to ventilate. After a few hours they did get him on a high frequency ventilator and Nitric Oxide. He took  a turn for the worse and they needed to give him blood. Things just kept getting worse so the doctors had spoke to me about letting him go. I had to make a decision after no sleep for 38 hours or food for 24. I told them I wanted them to put him on ECMO to buy us some time. I had really hoped these decisions wouldn't have needed to be made so quickly. The first ECMO machine they put him on had air bubbles, they caught it quickly and suctioned them out, however, it took approximately 40 minutes to get him transferred to a new machine. During this time he had to be revived with chest compressions and will likely suffer brain damage. The only good news so far is that he is on the new ECMO and all the numbers look great. However this was a temporary ECMO so sometime today they will need to transfer him to a permanent one. He is at high risk for bleeding in the brain so they will be doing ultra sounds regularly to check on that. This has been an hour by hour process with many bumps in the road. I still haven't slept much as one could imagine but I hope to have some one on one time with AJ today to connect with him spiritually. I want to do what is best for him and I still feel there is HOPE!

Here is a picture of Austin Josiah, my hero, before ECMO....

Here is our first picture together while he's hooked up to ECMO......

Tuesday, March 23, 2010

Settled in Hospital Room

All settled in the hospital room. The have me on the monitors, IV is in, and they inserted something in me called Cervidil that will soften up my cervix so that it will be ready for delivery. It takes about four hours to work so they'll come back and check on me. After this they may start pitocin, depending on the results.

We have a pretty big room with an AWESOME view of the city! I am starring at all the lights right now and can't sleep. I am excited, yet scared. Our nurse is great. She is so accommodating it almost makes me wanna move in here...he he he. We just met with the neonatalogist and asked a few questions about what they'll do with Austin once I deliver. He will be immediately intubated and sedated so they can stabilize him to get blood work, x-rays, etc needed to determine how much lung power he will have. I believe his lungs will be better than they expect. I just feel it!

Well I should try and get some rest now just in case I'm in for many hours of labor. Goodnight :)

Thursday, March 18, 2010

All settled in San Francisco

We are settled in S.F. now. I had an NST yesterday and another tour of the NICU. There was a baby girl with CDH there that we got to see. It'll be a total different experience seeing our baby there. It seemed kind of crowded this visit. Hopefully they'll make room for A.J. next week :). We met with the social worker and she keeps reminding us of the negative, URGH! I just want to say, "I KNOW but I am not willing to hear that right now"! Instead I stay calm and just focus on positive thoughts. I have no choice. Not even the doctors can predict how well Austin will do. It's so hard to see him so active in the ultra sounds making breathing motions as if he's perfectly fine. I know that won't be the case when he arrives but I strongly feel he's going to surprise many.

I find myself a little emotional since I've arrived. I had planned to do some tourist stuff but just haven't been up to it, kind of spacey lately. Tomorrow I have another NST and an OB appointment. I am trying to gather up any last minute questions I may have. With my forgetfulness lately, I can't seem to remember what I wanted to ask and, of course, haven't wrote any of it down.

Next Tuesday evening at 8pm, 3/23, I will be admitted. I can't believe how quickly this date is approaching! I really appreciate everyone's support and PRAYERS. Please please keep them coming! We went to a little burrito spot for lunch today and the lady behind the counter asked about my baby and I briefly explained the situation. She was so sweet and said a prayer with me right there at the cash register. I've never been a big religious person but this experience has definitely brought me closer to God.

Friday, March 12, 2010

Last of my appointments in my town, Tracy, CA

Today was my last NST and Ultra Sound at the hospital in my city. I think the nurses are glad to be done with my little guy. He is ALWAYS a struggle to get a NST because he moves A LOT. It's never a quick visit for me. I am usually there for 2 or more hours trying to get a good reading for the doctor. It's going to be weird not delivering here because I have got to know the nurses and my OB/GYN and really like them! Next week I'll have two NSTs at UCSF and my first OB appointment with the doctor who will deliver Austin. Hopefully they'll make me feel just as comfortable as the staff here in town.

During my ultra sound today the tech took a picture that looks like Austin praying. It is precious! That is one great thing about all these appointments, I get tons of ultra sound pictures :).

Wednesday, March 10, 2010


Until Austin arrives, boy how time has flown by! The other day I received some sad news about another CDH baby, Baylee Grace, that was born last month who didn't survive or as they say "grew her wings." I cry and pray for her family. I am very aware of the reality of this severe defect, yet I still can't imagine going through what her family must be going through. I have managed to stay mostly positive this whole time and I don't want to lose that.

On a happier note, I now have a place to stay in San Francisco next week. Thanks to "Nayeli's Faith" foundation, we will be able to stay locally the week prior to my induction in case I go into early labor. I am very appreciative of the support I am receiving through this foundation as well as other CDH foundations such as Breath of Hope, CHERUBS, and Global CDH. I have learned so much from them and the members. We are truly blessed to have so many people praying for us.

Thank you all! I will post another update once I get settled in S.F.

Wednesday, March 3, 2010

Baby Shower was GREAT!

I had my babyshower Saturday and it was nice. I got some great things for A.J. and it made me get excited for him to be here. I even got a little teary eyed when I saw all the wonderful presents from so many people who care about us. Still trying to figure out where I will stay the week prior to my induction. I only have two weeks before I leave to S.F. Time is flying by.

Saturday, February 20, 2010

Latest Ultra Sound Picture of Austin Josiah

A.J. is starting to look more and more like a baby in his pictures. I can't wait to see and hold him :).

Wednesday, February 10, 2010

Ready for Maternity Leave

Well I guess I spoke too soon in my previous post about my fluid levels being great. The last two NSTs show my fluid levels are high. This usually means the baby has abnormalities, which we know he does, so there really isn't much they will do about it for now. I guess it just means I get to feel even more like a whale and AJ has more liquid to play in (which he loves to do). So far I have managed to only gain 12lbs this whole pregnancy, 4 of the pounds in just these last two weeks (its the fluid & baby, right? ha ha). Anyway, these 4lbs have made a world of difference. I can hardly tie my shoes or get up out of our recliner. I'm starting to feel tired more and losing energy. I am so happy that next week is my last week of work. It will be nice to sleep in and only have doctor appointments to attend. I have to try and take advantage of this time before all the chaos begins ;). My mom joked with me and said "watch, you'll go into labor a week after leave." NOT FUNNY MOM!

Monday, February 1, 2010

Wonderful video that made me cry yet gives me hope

Sofia had the same CDH as my baby. Left Sided with 90% of diaphragm missing with stomach, intestines, and part of liver up. I pray that Austin Josiah will be a fighter like her!

Sofia's CDH Story from Jen Miller on Vimeo.

Twice a week NST

For two weeks or so now I have been going to the hospital in town to have a Fetal Non-Stress test (NST) done twice a week. NST is a non-invasive test performed in pregnancies over 28 weeks gestation. The test is named “non-stress” because no stress is placed on the fetus during the test.

Since I go into the hospital every Tuesday and Friday after work, I've been getting to know the nurses very well (too bad I won't be delivering there). When I arrive I try to peak around to see if any new babies have arrived. I just love newborns! The nurses weigh me (YUK) and then take me to a delivery room where they attach two belts to my abdomen. One to measure fetal heart rate and another to measure contractions. Movement, heart rate and “reactivity” of heart rate to movement is measured for 20-30 minutes, however, it's been taking longer since my baby moves a lot and its hard to get a full 20-30 minutes of constant heart rate. Last Friday I was there for 2 1/2 hours because they did an ultrasound in addition to the NST to check my amniotic fluid level. I was getting impatient and wanting out of there....can only imagine how bad it's going to be when I'm actually having AJ and having to be in the hospital with him for a very long time. Good news is my fluid level and NSTs have been great.

I am getting eager to start maternity leave. As I push week 32, I am noticing my energy level has dropped. I love to cook, however, I haven't even desired to do that lately. I also wonder if it's depression because I am not having a typical pregnancy. Usually at this time in a pregnancy, one would be decorating the nursery, picking out strollers, etc. I am doing some of that but there is so much more focus on the CDH that it's hard to maintain the "normal" excitement.

AJ 34 Weeks

Friday, January 22, 2010

2nd UCSF Appointment - NICU tour

Today we went to UCSF for my follow up appointment. I had another ultra sound and AJ is approximately 3.7lbs now. He is growing quickly! After the ultra sound we met with a social worker and a neonatal specialist to discuss the care for AJ after birth. I guess they have to be very upfront but it sure does sound hopeless sometimes when they talk. I realize my baby has a very severe CDH but it would be nice to hear just a little bit of hope. Towards the end of the conversation the social worker started to come around and sound more positive. I think they finally got the picture that I'm not trying to hear the negative. I know the odds and have mentally prepared myself. I now want to focus on what can be done to save my child!

When we toured the NICU, we were surprised. It wasn't as bad as we thought. I have spent so much time reading about CDH babies that are real sick so I was prepared to see them in person. There were two babies with CDH in the NICU today. One baby was on the ECMO. He was lying there lifeless because while on the ECMO, they give the baby medicine that basically paralyzes him so the lungs can rest. The other baby had been there for 10 weeks. He was born premature and only weighed 3.5lbs at birth. Today he was 7lb 4oz. and had a nasal cannula and feeding tube. He looked great! I was shocked that a CDH baby born so soon would look so good. I'm not sure the severity of either baby as the parents weren't present to ask questions.

After the tour I met with one of the fetal team members. Unfortunately they had two emergency fetal surgeries today so I didn't get to meet more of the team. We discussed the date I would come in to be induced, March 23rd at 8pm. Hopefully all goes well and I will be delivering March 24th. I will be 39 weeks at this point. I hope to stay in S.F. the week prior just in case I go into early labor. The social worker said I wouldn't check into the Ronald McDonald house until after delivery. I have to check with her again to see if there is any way I can stay the week before as well so I don't have to pay for a hotel. I'm sure it'll depend on availability.

 Here's a video clip of AJ yawning.


CDH - Congenital Diaphragmatic Hernia

LCDH - Left Sided Congenital Diaphragmatic Hernia

LHR - Lung to Head Ratio

NICU - Neonatal Intensive Care Unit

ECMO - Extracorporeal Membrane Oxygenation - A heart-lung by-pass machine that takes over the work of the heart and lungs.

NASAL CANNULA - A special tubing that is used to give oxygen through the nose, making holding and feeding easier.

NG-TUBE - Nasogastric Tube(aka feeding tube) - A plastic tube inserted through the nose into the stomach or intestines to aid in digestion when baby cannot eat by mouth.

Thursday, January 21, 2010

30 weeks - baby shower planning

30 weeks now...WOW!

I remember with my other two children, my pregnancy seemed to last forever. Much different experience with this little guy. Time is just flying by! I assume that is because I know he is safe inside me and a part of me doesn't want him to come out because I know that is when all the scary stuff comes. Well I can't think about that. I need to enjoy these last two months. I've decided to have a baby shower next month, Feb. 27th. Even though I have family members willing to put it together, I can't help to get involved since I enjoy planning events. Plus, this will be my first baby shower where I know the sex of the baby. It's going to be a lot of fun!

Wednesday, January 20, 2010

A night in pain - not related to pregnancy

Last night was a rough night. My stomach started burning and then the pain moved into my back. I couldn't sit or stand comfortably. All I could do was pace and take deep breaths. I took some Tylenol and tried to relax but my body just wouldn't let me so I decided to go to the ER. Being pregnant does have it's perks! In the ER I was seen right away, nothing I've ever experience before! I was given some pain meds which eventually kicked in and calmed me down. Then the OB nurse came in to check on baby. I've had this severe stomach pain twice prior two being pregnant but in the last week, it's happened twice! Before I was given meds for an ulcer and then had an Upper GI but by the time I had the Upper GI, either the meds worked and got rid of the ulcer or there wasn't ever one and they just contributed it to Acid Reflux. They've even checked my gallbladder in the past and it wasn't that either. This time the pain was worse, maybe because baby is pushing on things, I don't know but it was unbearable and I never want to feel it again. The doctor came in and basically said stomach pain could be a variety of things and gave me some mylanta......typical ER experience for me! The burning was still present even though the pain meds helped the severity of the pain, especially the back pain. He then gave me a pill that prevents stomach spasms and another dose of mylanta, this time coated with some numbing substance. These seemed to help and I was able to rest. Good news is baby was okay through all of this. His heart rate was normal and I wasn't having contractions :). I knew it wasn't the baby but didn't know if the severity of the pain I was in could effect the baby. Guess I'll add this problem to the list of appointments I need to make. Fun never ends.....

Thursday, January 14, 2010

Where to deliver? Who to trust with my baby's life?

This week has been rough for me as I'm trying to decide where I want to deliver. Earlier in the week I called UCSF and Stanford to get stats for their 2009 CDH deliveries. The nurse at UCSF was able to give me stats right away. She said last year they delivered 20 CDH babies, 11 survived and out of the 11 only 1 had an LHR of less than 1.0. This information was not very uplifting. The nurse at Stanford said she would get back to me and it's been two days and still not response :(. I am also trying to get into Stanford to meet with the pediatric surgeons, however, they said they are waiting for approval from my insurance. My insurance covers me at both hospitals so I'm not sure what the hold up is but this is definitely swaying me away from going to them.

I also emailed a doctor I read great things about, Dr. Kays, who is the Chief Pediatric Surgeon at Shands Children's Hospital in Gainesville, FL. I know this is VERY FAR from where I live but his stats show a 92% survival rate for CDH babies. He emailed me back stating he was in the process of bringing all of their data up-to-date (over 200 cases) but gave me the following info:

Last death in Aug '09, a child with chromosomal defect who was not repaired and had support withdrawn. Death before that was a 32 week preemie with CDH. Of their last 34 consecutive cases, 30 patients survived to discharge. These patients had the full gamut of severity from mild to very severe. He also stated he does NOT select his cases. 95% of his patients are prenatally diagnosed, and they take everyone who wants to come, mild, severe, whatever. Therefore their survival data are not biased by selection.

Now who could not look into this? It makes it so hard having this information on my shoulders. On one hand I feel like going to Dr. Kays will give my baby the best chance at life, on the other hand, UCSF is a wonderful hospital and is capable of making sure my baby has the best care. Going to Florida would mean coming up with money to go now for an initial consultation and then going back in a couple weeks to live for however many months it'll take to get my baby healthy enough to travel home. I also have my other two kids to think about and who need me and family/friends I will need for support as well.

What does a mother do? I'm so afraid that if I choose UCSF and baby doesn't survive, I will be thinking I could have saved him by going to Florida.

Tuesday, January 12, 2010

Appointment with my regular OB/GYN & the High Risk OB/GYN

It had been a month since I last saw my regular ob/gyn. She went over my records from Stanford and said, "I'm so sorry Nichole" and she started to get teary eyed. Of course this set me off and we were both sobbing. She listened to the baby's heartbeat and went over some lab results I had. My Vitamin A and protein levels were low. She ordered some more blood work to check my glucose levels again.

I will continue to see her monthly until I fully transfer to Stanford and/or UCSF. I still need to tour the NICU facilities at both hospitals and meet with the pediatric surgeons at Stanford.

At the High Risk OB/GYN's office, they did another growth ultrasound. Baby is growing at normal rate, he's approximately 2 1/2 lbs now. I can't believe in just two months he'll be a full size baby! My stomach is going to really be popping out soon.

So far I've only told a couple close friends/co-workers at work (besides my boss) that I'm pregnant. It will be interesting to see how long I can go before it's just obvious. Who knows, I might be out on maternity leave before anyone finds out :). With everything that's going on, I haven't been enthusiastic about telling others. I try to stay buried in my work to prevent myself from crying. God knows I do enough of that at home. It's sad that I'm feeling this way but it's just still to hard to deal with.