First official appointment at CHOP

Since we've transferred our care to CHOP we've started our regular appointments there starting yesterday. Luckily Riq was off yesterday and made the 2 hour drive down to Philly with me. We were scheduled for a routine appointment (weight, urine, bp, etc) with an ultrasound. I was really looking forward to seeing our baby girl again. She looks good (considering) and was super, super active. We even got to see her hiccup for a bit which was really cute. She's weighting in at about 2 pounds, 2 ounces which is a good weight. Her chest and abdomen look the same, nothing has worsen and nothing has improved.

Then we got to talk to the nurse practitioner about things to keep in mind for the rest of the pregnancy which answered a lot of questions that were running through my mind. First, in case of any kind of emergency they want me to get to my home hospital first and then call CHOP to see if I have to drive down there. I also asked whether I should continue to see my regular OB at home. They encourage me to continue seeing her on the off weeks that I don't go to CHOP just so that I'm constantly being monitored. She also provided us with info on child birth classes which we'll probably do online. I just don't want to go to a traditional child birth class and be surrounded by couples who are gushing over their perfectly normal pregnancies. We're going through enough, we don't need that pain as well. I then asked about when they would like me to permanently stay in Philly. She stated normally they would want me to stay nearby at around 34-36 weeks. The nurse practitioner then scheduled our next appointment in four weeks during which I'll have another ultrasound, routine check-up, as well as meetings with the neonatologist (to talk more in detail about Luna's care once she arrives) and a social worker (to talk about housing options for my stay in Philly).

I was emotionally, mentally, and physically wiped out by the time we got home last night. The appointment, more specifically the planning for what is to come, was much more overwhelming than I expected it to be. I'm scared and I'm exhausted. Like I've said before I'm pulling all my strength from Riq...as well as the Lord...I just hope he's listening.

Our Journey to Here...

At what should have been a regular 20 week anatomy scan in November, the MFM specialist found something wrong with our baby's chest and sent us for a week's worth of tests (i.e., fetal echo, MRI, etc.) after which we received a diagnosis of a right-sided CDH. All the doctors we’ve seen believe it’s a severe case of R-CDH with some liver and bowel up.

This news has completely broken me. This is our second pregnancy. We do not have any living children. Earlier this year we were pregnant with our first child, a baby boy who we lost to Trisomy 13 at 23 weeks gestation. Up to that point, I felt that was the most difficult, heartbreaking experience of my life. That was six months ago. I still feel the pain of his loss, yet we were so excited to learn we were pregnant again in August and had a CVS done at 11 weeks which came back normal. We also had countless ultrasounds including an early anatomy scan at 16 weeks which all looked perfect.

And yet here we are. I can’t believe we're here. All the joy we had is now gone and is replaced with an incredible amount of fear at the unknown. What’s going to happen to our baby girl? Will she make it? I wish I had an answer now but i don’t. I’m not sure I’m strong enough to deal with all that is to come.

I get what little strength I have from my husband who believes we have to give our baby girl the best possible chance at life that we can afford her. After meeting and consulting with several fetal care teams in various different hospitals, we’ve decided to transfer our care to the Fetal Diagnosis and Treatment Center at the Children’s Hospital in Philadelphia. Delivering at CHOP will allow us to be by Luna’s side as she receives the best immediate NICU care possible.

Doing everything we can to prepare for her safe arrival is the only thing that keeps me going. I keep wishing someone will come up to me and wake me up from this nightmare but that hasn’t happened. This is our new reality. I have good days and then I have horrible days. I’m scared out of my mind. We love our daughter more than words can say and want the best for her. We want her to fight the CDH battle and come out the winner. I dream of bringing her home and spending the rest of my life being the best mom I could possibly be. I pray every single day that God grants me that blessing.