Meet Baby Maner
He looks like a perfect, active little guy. We love him already. He has a cute little nose, perfect little hands and feet, and is properly sized. He likes to kick and do somersaults.
However, there are some problems.
Our lives have become more complicated this week with the bad news of an ultrasound with a specialist. Originally the problems added up to 4. They switched our care to Swedish Medical Center in Seattle because of the complexity of the issues. Justin and I headed up for the day today (thank you to our ward family here who took care of the kids and dinner for us) to get an ECHO (for baby's heart) and then another ultrasound and consultation with our new perinatal doctor. Things have definitely moved toward the high-risk end of the spectrum. The day on the whole was more positive than we expected it to be, but we have a long road ahead of us.
Now the list of serious problems are down to 2.
Our little guy has Tetralogy of Fallot, TOF, or Tet. For more info on what this means, click here. The short answer is that there is a hole in his heart, along with 3 other problems inside his heart. This will require open heart surgery at probably 3-6 months of age, unless the problems get worse and they have to do it sooner. The success rate of the surgery is pretty high, which gives us quite a bit of hope.
The second issue is Hydrocephalus, or too much fluid in the baby's brain. This is more of an unknown at this point. It could decrease, or it could increase. The damage from it could range from little to none up to pretty severe brain damage. They will be monitoring both of these conditions very closely between now and February.
The biggest unknown at this point is if these are isolated defects or if the root cause is from a chromosome abnormality, in which case he may face many more issues that they can't see from the ultrasound.
The biggest unknown at this point is if these are isolated defects or if the root cause is from a chromosome abnormality, in which case he may face many more issues that they can't see from the ultrasound.
At this point, we have to wait and see how our little guy handles these things. We feel more optimistic today than we did two days ago however, despite all of the unknowns. But one thing is certain. We know that God is real and that He has a plan for us and for this special boy. We pray for strength to endure what is to come and for the Spirit to guide our decision making on behalf of our baby.
This little baby has so many people that love him already. We are hoping for the best!
19 comments:
I'm so sorry to hear about the complications. We will be praying for you and especially for your little one.
You are all in our prayers. We love you guys! Lashelle
Jennifer, I am so sorry for this tough news. You and Justin and your children will be in my prayers. Getting through a pregnancy that has lots of question marks is hard, but you will get through it because of your faith and the Comforter. Please call me any, any time.
Also, we have a baby in our ward who has tet. She is 6-7 weeks old and just had her surgery at Childrens Mercy. Her recovery was a little slower than hoped, but she is now doing well. Again, please call me if you want to talk.
Much love,
Tracie
We're also sorry to hear about your little guy. But what a lucky boy to wind up in your family! You are amazing and we look up to you. You'll be in our prayer and we'll be anxiously awaiting updates.
Love,
Sam & Gina Owens
Oh, Jen, we're so sorry to hear this news! You're in our prayers--it's amazing how much medical experts can help...and yet how little they can know! THanks for sharing this news--it's always good to be able to be there for people (if only through prayer!).
Just wanted to let you know we're thinking of you and your little one, and you'll be in our prayers. He's lucky to be coming to your family where he will have all the love any kid could ever ask for. I'll be anxious to hear when you learn more about what's going on.
I love the beautiful ultrasound picture of baby boy. Such a sweet little guy. My oldest brother was born with some similiar heart complications and it was 100% successful. Little baby boy is so blessed to come to your family. I felt so inspired and grateful to read your testimony and feel your positive attitude. I, too, believe Heavenly Father has a plan for you guys and your little guy. You and your family will be in our thoughts and prayers constantly. Please be sure to post updates. I am anxious to hear more as you learn more.
Love and miss you guys!
Jen, I am so sorry to hear abour your babies complications. I will keep him in my prayers. I am sure that you are so worried. Please keep us posted and let us know if there is anything we can do. Maybe we could all fast for him on the same day. Please let us know!
We'll be praying for you and thinking often of you and your already very handsome little guy! I was born with a VSD and several other complications and nobody even knew I had anything wrong until I was a month or two old and not gaining weight well. I am so grateful that there has been so much advancement since 1980 and that these things can be planned and prepared for so that your little guy has so much better chances of doing the best possible! They can do so much early on now that they couldn't do before. Shane's little brother was born with a similar problem as me, just about 15 years later. He had open-heart surgery as a newborn and lives a completely normal life now (he's 13) as if it never happened. I know it's scary, especially when you can't do anything tangible to "fix" it all, which is exactly what we want to be able to do for our children. My mom has told me how hard it was to feel so helpless about my heart problems. Thank goodness you know the Lord will carry you and the Spirit can bring peace. I really feel hopeful for you because so much can be done to help your son. Sorry if I've rambled on, but we will be praying that all will be well.
We will keep him and your family in our prayers. We wish you all the best!
Oh Jen, I'm so sorry to hear about the complications. I'm grateful, at least, that they were able to catch it so you can moniter it and be prepared, medically and emotionally. I hope that everything goes as well as possible and that little one is so lucky to have you! You will be in our prayers and we will watch for the updates. Love you.
I'll be praying for you and your little guy. Lots of love!
You have such a cute family and another handsome guy on the way. The longer I live the more grateful I am for a kind and loving Heavenly Father who gave His Son to not only help us overcome our sins but to give us comfort in the trials and challenges of mortality. Our prayers are with you, Jen & Justin, during this difficult time. A. Nancy
It truly is a MIRACLE each time a baby is born. We'll be thinking about you guys & praying for you and your little guy.
We will keep your family in our prayers. We understand how stressful it can be when faced with the unknown of a baby that has complications. We hope you all will be able to feel at peace with what comes. Come what may, you will always have a Father to hear and comfort you, as well as family and friends! We love you guys!
Thanks! I can't wait to catch up you you guys! I hope you're feeling a little more settled about the huge news you received about your sweet baby boy. Sounds like you've got an adventure ahead, and there's no luckier baby out there than this little guy to have such amazing and wonderful parents. It will work out one day at a time. I wish I could help out taking your kids or something - you seem to handle pregnancy and moving and unpacking and then this with such ease and grace, but I'm certain some good playdates would still be nice. If only so I could take some lessons. :-)
Seeing pictures of your family made me miss you guys! I hope Justin loves his job and you're enjoying Seattle!
Laura
We'll keep you and your little one in our prayers.
Justin-we know a dentist from your home town that practices in Denver - Nic Porter-what a small world.
Your house is looking beautiful!
I haven't checked your blog in awhile, so I am sorry I didn't know about your concerns about Baby sooner. Special babies seem to come to special families who can love them and handle the challenges they bring. You and Justin have one of those special families. This little spirit will be so blessed in your family. We will be praying for you and for him.
Jen, I just have to say I find your strength incredible. Also, I cannot believe there is another mother who could love, soothe, support, and nurture a special miracle than you.
You have my love and thoughts!
Post a Comment