I haven’t given an update on the latest appointments for Noah and Barrett, but I figure it’s time to go ahead and let everyone know what is going on, although many of you have already heard.
The last week or so has been an interesting one. We have had several things come up unexpectedly, and we have had several very emotional days. Thankfully, we have a faithful God who draws us near to Himself during difficult times, so He has protected us and strengthened us this week more than we could have ever imagined. I can’t even begin to tell everything without first proclaiming how good and faithful He is, and how He has sustained us through it all!
Here’s what’s going on:
After my 28 week appointment, I received a call from my doctor saying that I had some abnormal results on my bloodwork. It turns out that my body is producing specific antibodies in very high amounts that it should not be producing, and these antibodies are posing a threat to the babies. Basically, my blood and their blood are not compatible, and my body is attempting to attack their blood. They don’t know what made me start producing these antibodies and they cannot stop it. The plan is to monitor the babies extremely closely to ensure that their blood is okay and that they are not developing anemia, which would require blood transfusions for the babies. This monitoring has to be done by a specialist with certain equipment that regular doctors dont have…so our doctor made us an appointment with the specialist for Friday morning. Since this could possibly cause us to have to deliver early due to complications, I was also scheduled to have steroid shots to boost their lung development, just in case. I had those shots on Wednesday and Thursday.
Friday morning, we went to our appointment with the perinatal specialist. We spent about 3 hours with him, and the appointment turned out very different than we ever anticipated. They spent an hour and a half or more looking at the babies with a special ultrasound and dopplar, checking every aspect of their growth and development, their organs, their blood, their movements…everything you could think of. They also could monitor their blood flow to see how much blood was going through their vessels and how quickly it was being processed. We were thrilled when the tests showed that the boys are not currently showing any signs of anemia, and that their blood is fine for now. Unfortunately, this can change in a matter of a few days or so, which means that we have to be monitored every few days. If it turns out that the babies’ blood starts being affected, then we may have to do an in-utero blood transfusion, or deliver them early and do a regular transfusion. Hopefully neither of those will have to happen. The good thing is that since the doctors caught the problem early enough and are monitoring it so closely, there will most likely be no lasting effects or damage, even if we do have to have the transfusions. In the mean time, I will see my doctors at least every Monday and Thursday, and they will decide where to go from here.
Overall, that part of the appointment was somewhat of a relief. We were not expecting the next part.
While they were doing all of the monitoring and measuring, the specialist found several “markers” that indicate that Barrett most likely has a chromosomal abnormality. It looks to be a form of skeletal dysplasia, which is a physical disorder that has many variations, but will most likely result in some form of Dwarfism for Barrett. It appears so far to be one of the milder versions, which would mean that although he would have some physical issues, he would not have mental complications or anything and will be fully functioning. Of course there are other health issues that come along with skeletal dysplasia as a result of disproportionate growth, and those issues would just have to be dealt with as they arose. There is no cure for skeletal dysplasia, and very little treatment other than just treating some of the side effects.
At this point, we cannot know 100% whether or not Barrett has this abnormality, and we won’t know until he is born. However, the specialist said that this is not a case of just letting us know the worst-case-scenario… based on what he found, it is extremely probable. He told us that we should expect it and prepare ourselves for it. Once Barrett is born, we can find out exactly what kind of abnormality it is and go from there. There is a slight chance that Barrett could be born without this abnormality, but its just that— a very slight chance.
Obviously, this news came as quite a shock to us. We were expecting to get news and details about the babies’ blood and everything, but the chromosomal issues hit us out of nowhere. Thankfully, the doctor knew that we were taken aback by the news, and he left the room for a little while to give us some time alone. Nate and I were able to sit there and pray for our little family for awhile and regain our composure before continuing our discussion with the doctor.
We came home after the appointment just spent some time sitting together before telling anyone, mostly because we were still trying to wrap our minds around everything. Eventually, both of us called our moms and found that the conversation was too difficult to have over and over again, so both our moms agreed to tell the rest of our families for us. We turned off our phones for the afternoon and spent the rest of the day just trying to process the news by talking, crying, praying, and reading scripture.
Through the course of the day, God really made His presence known to us. He comforted us and confirmed to us that He is good and faithful and knows what is best for us and for our children. He gave us the strength to be able to fully rest in His promises and know that He is in control, and we trust Him. Whether or not Barrett is born with this issue, we know that God has formed both of our boys’ little bodies in exactly the way that He designed them to be, and that they are according to His perfect will. We are amazed at the strength that God has poured into us over the past couple of days, and we know without a doubt that it is all from Him. We couldn’t have walked through these past few days if we hadn’t been completely carried by Him. Our Father loves us so much, and He has reminded us of that truth again and again this week.
We are also very thankful for the wonderful outpouring of support and encouragement that we have received from friends and family. We have lots of prayer warriors out there praying for the health of our little boys, and we can’t thank you enough. We hope you will continue praying for all 4 of us, particularly that the boys’ blood will stay clean and unaffected by my negative antibodies, and that transfusions will not be necessary. Please pray that my body will continue to be more of a safe environment for them than an unsafe one, but also pray that if things do take a turn for the worse, that our doctors will have wisdom to know when to deliver and how to handle the situation.
Of course, we pray as any parent would that Barrett would be born without a chromosomal abnormality. We know that Dwarfism would not be something that would be easy for any little boy to grow up with, and it would be hard knowing the struggles that would face him as he starts to grow and realizes that he looks different from his twin brother and the other little boys around him. But we also know that if he is born with skeletal dysplasia, he has a God who loves him dearly and promises to protect him and strengthen him, and never to give him more than he can handle. That fact doesn’t change, no matter what the results may be, and we will thank the Lord with our whole hearts either way.
So please join us in praying for our boys, but also join us in celebrating them and praising the Lord that they are exactly the way that He has designed them. We excitedly await the day when we will finally be able to hold them in our arms and kiss their sweet faces and tell Noah and Barrett exactly how much they are loved!