Unsurprisingly, we made our way back to GHS on Saturday afternoon and we find our selves admitted once again. These respiratory issues are kicking my fanny. We are on the floor so I am having to stay all the time. I don't mind (I actually like the quiet), but I am desperately in need of sleep. I think the last time I slept all night was during my trip to Memphis in April.
Brinkley has had quite the work up today. He's had blood work to test for allergies, immune system issues, and some viral and infection screenings. We just returned from a chest x ray and are waiting to hear back from Sleep Medicine about home care for his newly diagnosed sleep apnea. Needless to say, he is worn out! We will continue to hang out here as his oxygen requirement is rather high right now.
As for Reese, we are working to regulate his new medication that is to treat his anxiety and behavior issues. So far the medicine is helping to keep him calmer, but it is making him extremely emotional. I am not sure what is worse bouncing off the walls or the constant crying. We'll keep working until we figure it out though.
I keep looking for my opportunities to love on people here while we wait. Today I have a box of cupcakes to share with the nurses. I hope they enjoy!
Please continue to pray for our boys. My biggest prayer right now is that we can get Brinkley healthy and out of here in a couple of days. Reese's birthday party is this weekend and I have so much to do to prepare. Please pray for me as I try to figure out how to balance it all.
Monday, June 10, 2013
Friday, June 7, 2013
Looking Back
Brinkley was discharged from the hospital on Wednesday morning. We left with no new information and on continuous oxygen. This means that we are, in a sense, worse than before. I would rather have my baby at home on 02 rather than living in the hospital though, so I guess it isn't so bad.
We did find out that he has severe sleep apnea. After a 2 1/2 hour visit with Dr Shippey yesterday we returned to the hospital last night to be observed in the sleep lab again. This time he wore the mask and used a cpap machine. The techs observed him all night and watched his numbers to see what settings work best for him. We will return to Dr Shippey next week to actually get our machine and start using it at home.
On a bright note, he turned 9 months yesterday and has finally hit twelve pounds. We saw Dr Everman, our genetic specialist, after leaving the hospital on Wednesday and he says that we are on the right track and covering our bases for now. Even better is that our Jeremy (my nephew) returned from his year long deployment on Tuesday. Last night Brinkley got to meet him for the first time!
We are being referred to an ENT at MUSC to continue working through Brinkley's breathing issues. We hear that a pediatric ENT is coming to Greenville soon, but right now we don't have one, so we'll be commuting for those visits.
The last year has been a wild ride that I could have never imagined. This week I looked back at my journal and wanted to share with you where we were a year ago today.
June 7, 2012
This journey has not been at all like I expected. I guess that is why I shouldn't be surprised by the latest news.
We were excited about our 20 week ultrasound. We would finally have a face and hopefully a name to put with this life growing inside me. Reese and Bryan were both anticipating a girl. I purposely chose not to dwell on it so that I wouldn't be disappointed either way.
Bryan kept saying it doesn't matter as long as it's healthy. But, I know he really wants a baby girl. It only took a few views on the ultrasound before she confirmed that we will be adding another boy to our family.
We went into the exam room to meet with Dr Frederick expecting to hear that I needed to continue to work on gaining weight (I've lost a fair amount) and that he looked good. That's what every family expects, right? Unfortunately, that was not the case for us. She did talk about my weight, but that was where the expected ended. His heart looks healthy and is working properly, but is not positioned correctly. On top of that, he has a thick fold on the back of the neck. Not really understanding what this may mean I am listening intently.
She would like us to get a second opinion and a blood test before making any assumptions or decisions. She referred us to a specialist and ordered her nurse to do lab work. We are to expect the lab work to take a week (this was last Tuesday). As with any lab work she has done, I expect a call from the nurse or a copy of the report mailed to me. When I had a message from Dr Frederick personally just two days later, I knew our journey had just taken a turn. I called her back and she immediately took my call. After fifteen minutes of explanation and questions we found out that we are at high risk (1 in 50) for Down Syndrome. She assured me that this is not a done deal. It is still one in fifty. The specialist will do a more in depth ultrasound and amniocentesis for more definitive answers.
I've had a week now to think about this and all I know for sure is that God is in control and He will be beside us no matter what. Living with and raising a special needs children has come up multiple times in the last week from unexpected places. I don't know if this is a way of preparing me for what's to come or not. I won't know anything else until we see the specialist next Friday. Until then, I am going to enjoy the quality time that I have with my boys and ask God to give me peace.
We did find out that he has severe sleep apnea. After a 2 1/2 hour visit with Dr Shippey yesterday we returned to the hospital last night to be observed in the sleep lab again. This time he wore the mask and used a cpap machine. The techs observed him all night and watched his numbers to see what settings work best for him. We will return to Dr Shippey next week to actually get our machine and start using it at home.
On a bright note, he turned 9 months yesterday and has finally hit twelve pounds. We saw Dr Everman, our genetic specialist, after leaving the hospital on Wednesday and he says that we are on the right track and covering our bases for now. Even better is that our Jeremy (my nephew) returned from his year long deployment on Tuesday. Last night Brinkley got to meet him for the first time!
We are being referred to an ENT at MUSC to continue working through Brinkley's breathing issues. We hear that a pediatric ENT is coming to Greenville soon, but right now we don't have one, so we'll be commuting for those visits.
The last year has been a wild ride that I could have never imagined. This week I looked back at my journal and wanted to share with you where we were a year ago today.
June 7, 2012
This journey has not been at all like I expected. I guess that is why I shouldn't be surprised by the latest news.
We were excited about our 20 week ultrasound. We would finally have a face and hopefully a name to put with this life growing inside me. Reese and Bryan were both anticipating a girl. I purposely chose not to dwell on it so that I wouldn't be disappointed either way.
Bryan kept saying it doesn't matter as long as it's healthy. But, I know he really wants a baby girl. It only took a few views on the ultrasound before she confirmed that we will be adding another boy to our family.
We went into the exam room to meet with Dr Frederick expecting to hear that I needed to continue to work on gaining weight (I've lost a fair amount) and that he looked good. That's what every family expects, right? Unfortunately, that was not the case for us. She did talk about my weight, but that was where the expected ended. His heart looks healthy and is working properly, but is not positioned correctly. On top of that, he has a thick fold on the back of the neck. Not really understanding what this may mean I am listening intently.
She would like us to get a second opinion and a blood test before making any assumptions or decisions. She referred us to a specialist and ordered her nurse to do lab work. We are to expect the lab work to take a week (this was last Tuesday). As with any lab work she has done, I expect a call from the nurse or a copy of the report mailed to me. When I had a message from Dr Frederick personally just two days later, I knew our journey had just taken a turn. I called her back and she immediately took my call. After fifteen minutes of explanation and questions we found out that we are at high risk (1 in 50) for Down Syndrome. She assured me that this is not a done deal. It is still one in fifty. The specialist will do a more in depth ultrasound and amniocentesis for more definitive answers.
I've had a week now to think about this and all I know for sure is that God is in control and He will be beside us no matter what. Living with and raising a special needs children has come up multiple times in the last week from unexpected places. I don't know if this is a way of preparing me for what's to come or not. I won't know anything else until we see the specialist next Friday. Until then, I am going to enjoy the quality time that I have with my boys and ask God to give me peace.
Sunday, June 2, 2013
Attack of the Reese
Due to technical difficulties I had to take an unexpected break from blogging. (Technical difficulties= Reese attacked my computer with a sword and busted the screen.)
After a week and a half at home we are back at GHS. We had a few rough days at home that seemed to be triggered by environmental factors. It appears to me that he may be having allergic reactions. With me being asthmatic it is likely that Brinkley is also. At this point the doctors have referred to it as Reactive Airway Disease. I will be pursuing this with our Pulmonologist. Exposure to cats and smoke are two of the things that have set him off recently.
Thursday we were admitted after the albuterol treatment did not bring his oxygen numbers back up. We have been hanging out here working on weening him off the oxygen. They have also been treating him for his feeding tube being infected. This may be playing into him being slow to recover from the respiratory issue. We were also able to get some info back about the sleep study he had last week. He has severe sleep apnea and we will meet with the sleep specialist this coming Thursday to make a plan for treating this.
Brinkley is making great progress in therapy despite having to miss so many sessions due to hospital stays. This week we will start going twice a week to take advantage of the progress that he is making. Keep in mind that he was six weeks premature, has Trisomy 21, and has had two open heart surgeries. All of these bring some level of physical and developmental delays. Even though he is a few days shy of nine months old, he is just starting to have good head control and is working hard on rolling over and sitting up. He has started holding a small bottle on his own and he does well with handling toys. We are so proud of him and can't wait to see how he progresses.
Please pray for Reese as he is having a very hard time right now. We will be seeing the behavioral specialist again tomorrow. The last two weeks have been VERY VERY difficult with him. We are praying that the doctor will be able to help us start moving in the right direction.
Thank you for your continued prayers and support!
After a week and a half at home we are back at GHS. We had a few rough days at home that seemed to be triggered by environmental factors. It appears to me that he may be having allergic reactions. With me being asthmatic it is likely that Brinkley is also. At this point the doctors have referred to it as Reactive Airway Disease. I will be pursuing this with our Pulmonologist. Exposure to cats and smoke are two of the things that have set him off recently.
Thursday we were admitted after the albuterol treatment did not bring his oxygen numbers back up. We have been hanging out here working on weening him off the oxygen. They have also been treating him for his feeding tube being infected. This may be playing into him being slow to recover from the respiratory issue. We were also able to get some info back about the sleep study he had last week. He has severe sleep apnea and we will meet with the sleep specialist this coming Thursday to make a plan for treating this.
Brinkley is making great progress in therapy despite having to miss so many sessions due to hospital stays. This week we will start going twice a week to take advantage of the progress that he is making. Keep in mind that he was six weeks premature, has Trisomy 21, and has had two open heart surgeries. All of these bring some level of physical and developmental delays. Even though he is a few days shy of nine months old, he is just starting to have good head control and is working hard on rolling over and sitting up. He has started holding a small bottle on his own and he does well with handling toys. We are so proud of him and can't wait to see how he progresses.
Please pray for Reese as he is having a very hard time right now. We will be seeing the behavioral specialist again tomorrow. The last two weeks have been VERY VERY difficult with him. We are praying that the doctor will be able to help us start moving in the right direction.
Thank you for your continued prayers and support!
Monday, May 13, 2013
Tears and smiles
Overwhelmed, last night I left the hospital with tears in my eyes.
Yes, you read that right. We are back in the hospital. Saturday night Brinkley threw up a few times and then started having very loose bowel movements. He was restless all night and seemed to have a fever. Sunday morning I checked his temperature to see that he had a fever and his breathing had become very labored. We hurried to the ER to find that his fever was worse (102) and his breathing even more erratic. Dr Polley did some lab work and decided that we are dealing with a stomach virus.
Mary Beth was the RT on duty for both the ER and PICU yesterday and she promptly told the PICU team that we were back. Nurse Anne was soon by our ER bedside and let us know that the ladies upstairs were already discussing who got to have Brinkley this time. Soon we were wheeled upstairs and found several of the precious nurses waiting to greet us. Our day was full of visitors. One nurse after another came in to visit us, as well as a couple of the residents that have been so good to us.
After our experience at MUSC the last couple of weeks, I was reminded just how blessed we are to have this wonderful, loving, team taking care of our sweet baby boy. The nurses and doctors came in and hugged me and many of them reminded me that they were continuing to pray for our family. All along this journey my prayer has been for wisdom and peace as we build the team caring for Brinkley. Last night I was reminded and overwhelmed by how faithful the Lord has been to answer those prayers.
As the attending doctor just came into our room, he said, "we have to stop meeting like this." He then commented that he didn't know why I was smiling, he wouldn't be if he were in my shoes. All I can say is that these shoes are firmly planted in the knowledge that the Lord has a purpose for all of this. As in everything else in this life, He has promised that since He brought me to it He will lead me through it. I'm determined to make the best of this and take advantage of every moment that I have here to love my baby and show love and appreciation to the staff here. It's not always smiles. As a matter of fact, there are many tears. However, those tears last night were tears of joy. I was simply overwhelmed at the goodness of my God.
Yes, you read that right. We are back in the hospital. Saturday night Brinkley threw up a few times and then started having very loose bowel movements. He was restless all night and seemed to have a fever. Sunday morning I checked his temperature to see that he had a fever and his breathing had become very labored. We hurried to the ER to find that his fever was worse (102) and his breathing even more erratic. Dr Polley did some lab work and decided that we are dealing with a stomach virus.
Mary Beth was the RT on duty for both the ER and PICU yesterday and she promptly told the PICU team that we were back. Nurse Anne was soon by our ER bedside and let us know that the ladies upstairs were already discussing who got to have Brinkley this time. Soon we were wheeled upstairs and found several of the precious nurses waiting to greet us. Our day was full of visitors. One nurse after another came in to visit us, as well as a couple of the residents that have been so good to us.
After our experience at MUSC the last couple of weeks, I was reminded just how blessed we are to have this wonderful, loving, team taking care of our sweet baby boy. The nurses and doctors came in and hugged me and many of them reminded me that they were continuing to pray for our family. All along this journey my prayer has been for wisdom and peace as we build the team caring for Brinkley. Last night I was reminded and overwhelmed by how faithful the Lord has been to answer those prayers.
As the attending doctor just came into our room, he said, "we have to stop meeting like this." He then commented that he didn't know why I was smiling, he wouldn't be if he were in my shoes. All I can say is that these shoes are firmly planted in the knowledge that the Lord has a purpose for all of this. As in everything else in this life, He has promised that since He brought me to it He will lead me through it. I'm determined to make the best of this and take advantage of every moment that I have here to love my baby and show love and appreciation to the staff here. It's not always smiles. As a matter of fact, there are many tears. However, those tears last night were tears of joy. I was simply overwhelmed at the goodness of my God.
Wednesday, May 8, 2013
Waiting
Yesterday Brinkley had an EGD and a Bronchoscopy. Both the GI and Pulmonologist took biopsies of the areas that they looked at. It will take a few days to get the results back from those, but we expect to have them tomorrow or Friday. So, in the meantime, we wait.
The GI, Dr. Carter-Kent, found two ulcers in his small intestine. She said that these are most likely caused by reflux. The biopsy of the tissue around it will determine more about the source. The biopsy of the lungs will help to determine if he has been accumulating formula or secretions in his lungs.
He had an "episode" during one of his feedings with the nurses. His breathing became erratic and his 02 levels began fluctuating. She alerted the attending doctors and they are beginning to see what keeps happening at home that is sending us to the ER. I hate that this is happening to him, but I am glad that the nurses have seen it since it is often hard to describe very well. This afternoon, however, he ate well! He couldn't get enough and would have finished the whole feed by mouth, but he fell asleep.
We will continue to wait for the biopsy results. The GI and Pulmonologist will then work with us to make a plan for how to proceed from here. If a procedure is necessary, we will schedule that and return home until then. I am looking forward to being home soon and having all of my boys in one place. I am really missing Bryan and Reese. Thankfully when we return home we will have in home nursing. If it works out well, it will be a HUGE blessing and will allow me some time to focus on Reese and tackling his current issues.
Reese has been referred to a program for the summer that will help us keep him in a structured setting until school starts. We are hoping that it will work out and that it will be something that we can do financially.
In the midst of this hospital stay my little wonder has hit a couple of milestones: 1. He is grabbing onto his feet and ankles and waving them. 2. He's 8 months old!
The GI, Dr. Carter-Kent, found two ulcers in his small intestine. She said that these are most likely caused by reflux. The biopsy of the tissue around it will determine more about the source. The biopsy of the lungs will help to determine if he has been accumulating formula or secretions in his lungs.
He had an "episode" during one of his feedings with the nurses. His breathing became erratic and his 02 levels began fluctuating. She alerted the attending doctors and they are beginning to see what keeps happening at home that is sending us to the ER. I hate that this is happening to him, but I am glad that the nurses have seen it since it is often hard to describe very well. This afternoon, however, he ate well! He couldn't get enough and would have finished the whole feed by mouth, but he fell asleep.
We will continue to wait for the biopsy results. The GI and Pulmonologist will then work with us to make a plan for how to proceed from here. If a procedure is necessary, we will schedule that and return home until then. I am looking forward to being home soon and having all of my boys in one place. I am really missing Bryan and Reese. Thankfully when we return home we will have in home nursing. If it works out well, it will be a HUGE blessing and will allow me some time to focus on Reese and tackling his current issues.
Reese has been referred to a program for the summer that will help us keep him in a structured setting until school starts. We are hoping that it will work out and that it will be something that we can do financially.
In the midst of this hospital stay my little wonder has hit a couple of milestones: 1. He is grabbing onto his feet and ankles and waving them. 2. He's 8 months old!
Somebody is happy about being 8 months!
Here's a little sweetness to leave you with:
Sunday, May 5, 2013
Fools give full vent
Bryan and I often disagree on the way to approach situations. He is quite emotional and wants to jump on things immediately. I, on the other hand, like to mull things over in my mind and formulate a plan. I like to make sure that everything, including the timing, is thought through. With that in mind these two scriptures kept coming to my mind today:
A gentle answer will calm a person’s anger,
but an unkind answer will cause more anger.
Proverbs 15:1
Foolish people lose their tempers,
but wise people control theirs.
but wise people control theirs.
Proverbs 29:11
In the NIV Proverbs 29 reads, "Fools give full vent to their anger." Anger has been a recurring theme for me over the last four days. I have had to remember these wise words and heed them.
Monday we were sent here to MUSC to further pursue Brinkley's respiratory issues. Thursday, despite my pleas otherwise, we were discharged. We were discharged with no further information, with no new tests or procedures. We did not see the specialists that I asked for. We didn't get the care that I felt Brinkley deserved and I wasn't heard when I pleaded for help.
I was so irate that I lost it and cried as I was pleading with the attending doctor to hear me out and not send us home. Not knowing where else to turn I called Dr Raunikar for advice and help. The doctors here did not appreciate that I called him and did not want to wait for me to speak to him before sending us home.
Word spread quickly through the GHS PICU about our situation and soon my phone was buzzing. The incredible staff were doing their best to try to help me and point me in the right direction to get Brinkley the help he needs. I can not tell you how big a blessing the doctors and nurses there have been to us. I know that they love my boy.
I told the attending doctor that I was not leaving town because Brinkley would flair up again and we need help. Just as I suspected, around 5 am Friday morning he woke up gagging on his formula. He soon started breathing erratically and his 02 numbers got low. I took him to the ER at MUSC and told the ER doctor everything that had happened. He was WONDERFUL, incredibly helpful and caring.
We were readmitted and placed with the same group of doctors. I was a bit disheartened and concerned about how much progress we would make. Things quickly started going downhill again. Fortunately, a Pulmonologist came in that was great and refused to back down to the attending doctor. She had Brinkley in for a CT scan of the chest within a couple of hours. More issues arose with the intern and my anger levels increased. Saturday the Pulmonologist came back and told me the scan showed that both of Brinkley's lung were partially collapsed. (This created even more anger for the lack of care the attending doctor and intern were giving us.) Later in the afternoon I finally got the GI consult that I had been begging for. The ER doctor and the Pulmonologist both agreed that we needed it and requested it for us. (Somehow it didn't seem important to the attending doctor to call in a GI when we are dealing with reflux aspiration.) Both of these specialists were wonderful and very helpful. These two doctors wanted to do the scopes that GHS had suggested. We will start these scopes tomorrow and should have some information on Wednesday or Thursday.
In the process of all of this happening I was conferring with a friend who is familiar with the way the hospital works and asking for the proper channels to voice my concerns to. As the friend suggested I tried to start with the nurses but that didn't go quite the way expected. Things got further out of control with the intern and I could not deal with any more. I had remained quite calm and composed, but was not willing to deal with it anymore. This morning I came for rounds and then headed out to speak to a supervisor. I was able to speak to the Children's Hospital Supervisor and she was very helpful and understanding. The doctor and intern will no longer be treating Brinkley or dealing with our family.
There is much more to the story that I will spare you for the sake of time, but things were horrible. I truly feel like I have been living a nightmare. I never imagined that things could have gotten this far out of control. This has been one of the worst experiences of my life. It would have been easy to let the frustration and anger take over, but as the scriptures above reminded me, we get a lot further when we control our tempers.
Though Bryan and I did not completely agree about how to handle this situation, I feel like my anger and temper were under control. I was able to peacefully talk to the proper people to have my concerns heard and addressed. To further remind me of how to handle this situation, these two scriptures showed us as my verses of the day:
Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus. Philippians 4:6-7 HCSB
Do your best to present yourself to God as one approved, a worker who does not need to be ashamed and who correctly handles the word of truth. 2 Timothy 2:15
Wednesday, May 1, 2013
Providence is an incredible thing
Here I am again, looking at the all too familiar walls of the Children's Hospital at MUSC. Last night I realized how ironic it is for us to be here looking for answers. Last May we did the very same thing. I will never forget the excitement as we rolled into Dr Frederick's office for our 20 week ultrasound. We couldn't wait to find out if our little blessing was a boy or a girl. What we didn't expect was to leave the ultrasound room and sit down in the exam room to be told that some concerns had arisen from the ultrasound. Something appeared abnormal with the heart and the thickness of the neck seemed abnormal.
Dr Frederick told us that this could be nothing, but it could also be a sign of a problem with the baby. She recommended that we go back and do the testing that we had opted out of previously that would show us our risk for things such as Downs. The ultrasound tech had also recommended another ultrasound at Maternal Fetal Medicine where the scan could be more precise. Dr Frederick told me that the lab work should be back in a week and not to worry. An appointment was made at MFM.
When I received a call from Dr Frederick personally only two days later I knew something wasn't right. Bryan and I stood by the phone in his office with her on the speaker phone to hear her tell us that the lab work showed we were at a much higher risk of downs than normal. She spent 30 or more minutes explaining things to us and just caring for us. At my age, a normal risk would have been 1 in 300, ours was 1 in 50. She told us over and over again, "that's 49 chances that he doesn't have Downs." Unlike what I have heard from many parents of children with Downs, what followed was, "don't worry, we will make sure you have every resource you need. Downs is something that can be managed and there are many resources available to help." Never once did she insinuate that we should consider anything besides continuing the pregnancy and preparing him to thrive in life.
This was a lot to take in and it was followed by many fears and tears from Bryan and I both. We kept the information to ourselves. We wanted to know for sure and educate ourselves before anyone else knew and started questioning us. The next week we started seeing the doctors at MFM. Our first visit didn't show any concerns on the ultrasound, but the doctor told us that he couldn't argue with the lab work and suggested an amniocentesis. Dr Frederick had discussed this possibility with us. We knew there were risks, but we also needed to know. The Lord had brought us this far and I felt certain that He was going to protect my baby through this.
We spoke with a genetic counselor and she told us that she would get in touch with us with the results. She gave us some general info on Downs and let us know about resources she could connect us with if he indeed had Downs. She also mentioned in passing the option to terminate. I felt sick to my stomach that someone would think we would even consider this. I realize by law she had to tell us this and I appreciate the fact that she told us everything available to help us before that was even mentioned.
With all of this weighing on our hearts and minds we knew that this could very well be the last "normal" summer of our lives. We wanted to get away with Reese and enjoy focusing on him for a while and just have fun with him. At this point we still had not told anyone what was going on. I desperately needed to get away and clear my head. Where better to do that than my favorite beach, Isle of Palms. A friend, who didn't have a clue what was going on in our lives, had reserved a house in IOP for her family and was not going to be able come. She offered us the house for a week and off we were.
To us this was a place to come for time to focus on our family, seek the Lord for answers, and clear our heads. In God's providence, that was a pattern we had no idea He was setting for us. Just like our December and February stays, we are here in Charleston again for answers and I am clearing my head with plenty of time to focus on the Lord.
My first trip here was in August of 2001 when Bryan and I arrived on IOP for our honeymoon. Who would have ever guessed what a significant role this place would continue to play in our lives. It's amazing to see how God weaves things into our lives. Things that can seem so insignificant become so amazing when you look back at His providential hand.
I'm praying that this stay brings us the answers we need just like it has so many times before. God is faithful and I trust that He is going to provide. After typing all of this, I just read the verse of the day that was emailed to me and yet again, the Lord provides:
And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. Hebrews 11:6 NIV
Join me in earnestly seeking Him for Brinkley's answer!
Dr Frederick told us that this could be nothing, but it could also be a sign of a problem with the baby. She recommended that we go back and do the testing that we had opted out of previously that would show us our risk for things such as Downs. The ultrasound tech had also recommended another ultrasound at Maternal Fetal Medicine where the scan could be more precise. Dr Frederick told me that the lab work should be back in a week and not to worry. An appointment was made at MFM.
When I received a call from Dr Frederick personally only two days later I knew something wasn't right. Bryan and I stood by the phone in his office with her on the speaker phone to hear her tell us that the lab work showed we were at a much higher risk of downs than normal. She spent 30 or more minutes explaining things to us and just caring for us. At my age, a normal risk would have been 1 in 300, ours was 1 in 50. She told us over and over again, "that's 49 chances that he doesn't have Downs." Unlike what I have heard from many parents of children with Downs, what followed was, "don't worry, we will make sure you have every resource you need. Downs is something that can be managed and there are many resources available to help." Never once did she insinuate that we should consider anything besides continuing the pregnancy and preparing him to thrive in life.
This was a lot to take in and it was followed by many fears and tears from Bryan and I both. We kept the information to ourselves. We wanted to know for sure and educate ourselves before anyone else knew and started questioning us. The next week we started seeing the doctors at MFM. Our first visit didn't show any concerns on the ultrasound, but the doctor told us that he couldn't argue with the lab work and suggested an amniocentesis. Dr Frederick had discussed this possibility with us. We knew there were risks, but we also needed to know. The Lord had brought us this far and I felt certain that He was going to protect my baby through this.
We spoke with a genetic counselor and she told us that she would get in touch with us with the results. She gave us some general info on Downs and let us know about resources she could connect us with if he indeed had Downs. She also mentioned in passing the option to terminate. I felt sick to my stomach that someone would think we would even consider this. I realize by law she had to tell us this and I appreciate the fact that she told us everything available to help us before that was even mentioned.
With all of this weighing on our hearts and minds we knew that this could very well be the last "normal" summer of our lives. We wanted to get away with Reese and enjoy focusing on him for a while and just have fun with him. At this point we still had not told anyone what was going on. I desperately needed to get away and clear my head. Where better to do that than my favorite beach, Isle of Palms. A friend, who didn't have a clue what was going on in our lives, had reserved a house in IOP for her family and was not going to be able come. She offered us the house for a week and off we were.
To us this was a place to come for time to focus on our family, seek the Lord for answers, and clear our heads. In God's providence, that was a pattern we had no idea He was setting for us. Just like our December and February stays, we are here in Charleston again for answers and I am clearing my head with plenty of time to focus on the Lord.
My first trip here was in August of 2001 when Bryan and I arrived on IOP for our honeymoon. Who would have ever guessed what a significant role this place would continue to play in our lives. It's amazing to see how God weaves things into our lives. Things that can seem so insignificant become so amazing when you look back at His providential hand.
I'm praying that this stay brings us the answers we need just like it has so many times before. God is faithful and I trust that He is going to provide. After typing all of this, I just read the verse of the day that was emailed to me and yet again, the Lord provides:
And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. Hebrews 11:6 NIV
Join me in earnestly seeking Him for Brinkley's answer!
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