Pray for Miracles!

I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go.

-Abraham Lincoln

We had a good, although very difficult, trip to Boston last week.

The Red Sox game was a blast! (Even though they lost. :( ) Will had a great time at his first MLB baseball game & I can't wait to post the pictures! It may take me awhile to do so, however, I've got a lot on my mind & on my to do list this week. We enjoyed 2 full days of being tourists - it was great & a much needed escape. We had great weather thankfully & really enjoyed the city.

Then it was Friday.

We spent an agonizing 10 hours at Children's Hospital Boston on Friday. Will did great. He spent 3 hours there seeing his various doctors and a therapist. The appointments cut into his naptime and he literally fell asleep in my mom's arms in the lobby while they waited for their taxi to go back to the hotel. (We flew my mom in to take care of him on Friday while we were in baby appointments.) He remained potty trained throughout the trip & I am so proud of him - he has gone in all kinds of strange, new places (airplanes, baseball fields, random hotels and restaurants) & no accidents on our trip at all!!! (Sorry - proud (& relieved) mommy sidenote. :) )

We returned yesterday from our trip to Boston and Children's Hospital Boston. Once again, we are humbly seeking your prayers for each of our children. (Both Will & Reagan have a stomach bug now & I am exhausted - I need these boys well so I can do laundry & feel "normal.")

Will - apparently he is not off the narrow airway list. The Boston doctors feel like he will require a tonsilectomy very soon. We will begin looking into this soon & are not sure at this point if it will need to happen in Dallas due to his narrow airway or not. Apparently, the tonsils are blocking his airway. The doctors were very pleased with his progress overall so that was encouraging. We also have a very difficult decision to be made in the next 6 months or so regarding a possible hand surgery - which we would have done in Boston. Please pray for our wisdom and discernment (& ability to focus on this decision among so many other impending ones in our lives at this time.) Will did excellent through 3 hours of doctors which extended into his nap time. We are so proud of our little guy.

The Baby- During our ultrasound at the Advanced Fetal Care Center, the doctor noticed some heart issues so we ended up having a fetal echochardiogram along with our ultrasound and fetal mri. It was a grueling day. During our final consultation after all of the doctors had met & studied the images to piece together the puzzle, the geneticist commented, "Apparently lightning strikes twice." They are baffled at the fact that our children can each have such rare issues that are completely unrelated. I suppose we have totally defied the odds. I can only cling to the fact that I know the Creator of the lightning and He created each of my children. I am also so humbly aware that I do not understand His ways or His plan.

The baby has 2 main issues (possibly unrelated) & both need prayer:

1. heart & intestines - It appears that the intestines ruptured or twisted at some point during development causing there to be small calcification masses throughout the abdomen of the baby. Normally, these are no big deal (I think.) However, two masses have lodged themselves in the lining of the heart. They are not impeeding blood flow. The structure & functioning ability of the heart is great. However, we will need to continue having fetal echos done throughout the remainder of the pregancy to monitor that they do not grow into the heart & begin to impeed blood flow. Please pray that they disappear and that we do not need any sort of cardiac intervention at birth. We will also need to continue monitoring the intestines to see if they have in fact ruptured and if it occurs again. The Boston doctors feel like the baby will very likely require surgery shortly after birth. The prayer is that they have healed themselves and that the baby will not require surgery or a central IV line & NG tube for feeding.

2. The baby has a tendon/muscle issue (disease possibly - although non-progressive) in the wrists and ankles. It is not related in any way to Will's syndrome. It is not genetic or chromosomal. It occurs in about 1 in 3000 live births.
This has caused the hands and feet to not be functioning correctly due to issues in the tendons at the wrists and ankles. We do not know at this time if the other joints (elbows/knees/hips/shoulders/jaw) are affected as well. The doctors were adamant that this is a condition (or disease) - not a diagnosis. This may require multiple surgeries and will definitely require intensive therapies & a variety of therapies. I thought I knew the "limb difference world" but this is a whole new aspect to it - new therapies I am unfamiliar with, new vocabulary, new set of specialists. I am very, very overwhelmed at this point as to what life will be like for this baby. (And as to what life will be like with two children in separate therapies/separate doctors/ vastly different needs, etc) Some babies with this "condition" are unable to survive past their first birthday as their central nervous system is affected. It is impossible to tell prenatally if our baby's CNS if affected. I am terrified of this prospect & terrified that I can't know what to prepare for.
I met with my ob this morning to do some blood work to rule out an infection causing this and also to consult about the Boston findings. Thankfully, he hasn't fired me yet for complicating his life & practice. He worked very quickly & I go tomorrow at 1pm to meet with the local perinatalogist. However, parts of our conversation today were extremely difficult as we discussed the possibility of the baby not surviving until term. There are so many unknowns at this point and my heart seems to hang in some sort of limbo - I don't know if I should be grieving & preparing to love and enjoy my baby for whatever minutes and days I may get or if I should be preparing for surgeries and therapies and who knows what else. I desperately want to fight for life. I'm terrifed of how to survive otherwise.

Our baby is "medically fragile" in multiple areas. We are overwhelmed and trying to process all of this. God has not yet given me the grace for the future. Sometimes I feel like I just barely have enough for the moment. Today it has literally been moment by moment & I don't always feel enough to get through a moment. We don't expect you to have the "right words" to say to us - your prayers in investing in the lives of our children are what we need. Knowing that you are alongside us brings us great comfort - especially as we prepare to meet this baby and whatever their needs are. We are so thankful for the offers of meals - I know we will need that later on & don't want to use up our meal allowance yet! Most needed right now are your prayers & hugs & shoulders to cry on- I just need to know that our friends are loving us & beside us.

As a final note, we are not telling Will anything at this point. He is very sensitive and observant and has anxiety about doctors. (He was nervous for the baby on Friday as he knew I had to see a doctor and he was afraid the doctor would be checking the baby's ears for infection. Bless his sweet heart.) Anyway, at some point, closer to delivery, we will try to prepare Will for the baby's hospitalization in a very simple manner. For now, we don't want him to worry so we are trying to guard our emotions and words in front of him. I say this to ask you to do the same, please. We want your hugs & you can communicate so much to us simply with a hug or handshake. If Will is with us, please be cautious with words that might lead him to be anxious. Thank you for being sensitive to him.

Thank you for praying for a miracle alongside us and loving us. I don't know how many miracles I get in life- I am so thankful for the "walking miracle" that Will is. I long to know and hold & watch this baby be a miracle as well. I also know from Will's life that a miracle can come in a way I don't expect or plan for.


There are only 2 ways to look at life… one is as though nothing is a miracle & the other is as though everything is.

– Albert Einstein