On December 7, 2010 our lives were jolted with news that would forever change us. Our Landon Wyatt was a mere 23 weeks in utero when diagnosed with oligohydramnios (low amniotic fluid), severe IUGR (intrauterine growth restriction), and cardiomegaly (enlarged heart). This is my journey as a mother of a 1 year old, a wife, a professional, a daughter, and a friend.
I'm emailing you to give you a quick update on what has been going on for the past few days. We went in for an regular dr. check up/ultrasound on Tuesday to check the progress of the baby. Throughout this pregnancy, the baby has been lagging slightly behind, however the concern was not great as I was still in a two week window which is deemed a safe zone. There was the possibility that my due date was off by a few days. As of Tuesday, the gap had widened by 3 weeks (20 days) and my amniotic fluid has dropped to very, very low levels (under the recommended normal range). With this information, our dr. sent us to a specialist to have a closer look with high level ultrasound equipment. We went to that specialist yesterday and also sought the advice from a second opinion in the afternoon. Both prognosis, were about the same.
The dr. has put me on indefinite bed rest so we can get as much blood flow/oxygen to the baby as possible, this bed rest may result in a hospitalized bed rest in January, depending on progress. At this time, there is not really an explanation as to what is going on except that there might be a problem with the placenta and the baby is not getting what he needs to move through the proper functions, necessary for survival. The goal, at this time, is to try and keep the baby in the womb as long as possible, however it is unknown what can transpire over the next few weeks. They would like for us to be checked again in a few weeks to determine if there is more growth and if my fluids levels have changed. One dr. did not give a very high percentage of survival and the other dr. is mostly concerned about when we might pull him and begin intervention.
We had plans of traveling to TX over the holidays and I will know more about whether or not we can make that trip today. I know it sounds crazy to travel at this time, but honestly I think it is the best place I can be right now so we are surrounded by friends and family and.. if something were to happen, we are in the best place possible - The Houston Medical Center is the best in the country! I will know more today after I speak to my regular dr. and I will keep each of you posted on the progress.
I have never experienced something like this and have been a fog for the past 48 hours.
Thank you for all your support and understanding at this time!
December 29, 2011
I apologize for taking so long to give an update. We are pretty exhausted and overwhelmed right now. As most of you know, we are in TX for the holidays per the recommendation of our dr. to go ahead w/our planned trip. While here, we were able to get into a dr. here in Houston thanks to a childhood friend. This dr. met with us and sent us over to see a specialist that same day. After meeting w/him, our outlook doesn't look any better.
Landon's heart is enlarged and he is pumping extra hard. When we went in to the ultrasound, the heart was pumping at 160 which is great, however throughout the ultrasound we saw it begin to decelerate to a point in which it almost stopped. This alone, caused great concern for him. The dr. feels this would be irreversible heart damage when born. The second issue he saw is the stomach measurements are showing at 21 weeks. I am currently 26+ weeks. In addition, the ultrasound shows the stomach to be very bright which indicates there must be blood in there which indicates there is stress going on in there. When born, this could cause short gut syndrome. Overall, Landon is now measuring about 24 days behind (we were at 20 days 2/3 weeks ago). All of this combined information, gives the dr. about a 10% chance of survival, both inside and outside of the womb.
Since we don't have a definitive diagnosis at this time, there is a lot that we don't know. One of the probable diagnosis the dr. has suggested is triploidy which means the baby is incompatible with life. The good news is that this is not genetic, but simply a chromosomal problem in which the baby acquired a 3rd set of chromosomes. This is a sporadic event that usually end in miscarriage. Only about 1-2% of babies actually make it past the first trimester OR we are still looking at a placental problem which we won't know until we actually have the placenta to biopsy.
Since the dr. can not confirm a diagnosis based solely on an ultrasound, we are doing an amnio tomorrow morning to hopefully acquire a definitive diagnosis so we can know what we are facing and begin to make decisions. At this point, we are/have been in a waiting game, so it will be nice to have some answers at least. This, of course, if we get some information back from the dr.
We will keep you posted. The tests from the amnio take 10 days, therefore it will be awhile before we know anything. At this time, Merrick and I are likely going to remain in TX (but, this is not a definite). We are in the process of making this decision. Part of me wants to get home to get back to his routine and schedule, while the other part of me wants us here for support and all the help w/Merrick we can get. Patrick has been amazing these past few weeks taking care of Merrick and me. I am a lucky woman!
Thanks so much for your thoughts, prayers, and concern.
Again, we will keep you posted on any new news.
Marlo, Patrick, and Merrick
January 11, 2011
I'm signing in with a new update for everyone.
I had my appointment w/the dr. this morning. We received the results from the amnio yesterday and everything was normal, meaning we ruled out any possible genetic/chromosonal issues that could be wrong with Landon. Though this is good news on one hand, it puts us back to square one (placenta problems), leaving us with many decisions we have to make in the next few weeks and increased chances of intervention. This also means that we will not have a definitive diagnosis or cause of problems until they are able to biopsy the placenta. The dr. was surprised/was at a loss for us that the amnio did not give us answers, but glad that it was not something that was incompatible w/life like the dr. had expected. So, today, we began making plans.
Today, I was to Labor and Delivery to begin steroid shots. These shots are given to expected premature babies to help w/the development of the lungs which is going to be crucial for Landon since his fluid has been so low (now at a level 3.8 - norm is 5-20). I took one shot today and will have one more tomorrow w/in a 24 hour period. I requested to begin monitoring his heart rate to check the decelerations that were seen at the previous dr. appointment to see how often they are occurring, however she does not want to do fetal monitoring at this very moment. Her reasoning is b/c it is usually done at the hospital and and I'm admitted for monitoring, I will not leave b/c they will pull the baby immediately if they see this. It would prompt immediate c-section and intervention. She, luckily, had a plan in mind.
She has already spoken with the head nurse of the NICU at the hospital who shared our "case" w/the neonatologist. They are all meeting tomorrow morning, the OB, NICU head nurse, neonatologist, and the perinatoligist so they can discuss/review our case. Believe it or not - we are now a 'medical 'case!' After their meeting, Patrick and I will meet w/them to create/make a plan of action. I do think that they may wait a little longer to deliver him b/c he needs to be a certain weight before they will begin intervention. The weight is crucial right now - I think they need for him to be at least 1 lb. 10/12 oz.
I received all of my records to take w/us to the hospital to get the shot and noticed that the specialist had indicated a heart problem called cardiomegaly which is the enlarged heart. I have not done much research on this yet, but I'm guessing it is the problem with the decelerations and the stress he may be experiencing in the womb to keep him pumping. I'll be googling soon to get more info soon!
We have a clear idea of where we are headed in the upcoming weeks as soon as we meet w/the team of drs. The steroid shots give us head start if we do decide to intervene. All they can do is help him at this point gain some lung strength.
His heart rate was good (145 per the regular fetal heart monitoring they do in the OB office) and dr. indicated he's a little fighter. For this, we have decided his middle name will be Wyatt (I wasn't keen on this name at first as it was Patrick's first choice for his first name), but it means Brave/strong/hardy war - and I think it is only fitting. So, he is now officially Landon Wyatt Franks!
As for my health, my blood pressure is good which is extremely important right now. They will continue to monitor me so I do not acquire pre-eclampsia which can happen in this situation. I a am to continue bed rest and will be tied to the bed/couch until further notice.
We can not thank each and every one of you enough for all of your help, support, patience, and encouragement. It has truly been a blessing to have each of you in our life during this time.
I will be glad when I don't have to post updates, but great news!!!!!