Update on my Cleft Cutie (termination mentioned)

spano41 · January 2014

So at my 20 wk A/S my baby was diagnosed with a unilateral cleft lip and palate, missing kidney, and echogenic focus in her heart. These things by themselves are manageable, but because she has three things wrong, it suggests that she has some sort of syndrome. I had an amnio done before Christmas and we have been anxiously awaiting results. The last week was really rough because our test results were not back yet and the doctors said that we needed to start having a conversation about whether we were going to terminate the pregnancy or not since last Friday would have been the last day we could do it. That is a conversation I would not wish on anyone. Not even my worst enemy. It was so hard, especially because we didn't even have the test results back so we had to talk about all of the possible scenarios and what we wanted to do in each situation. It is something that I don't think you can even comprehend until you are in that situation because it is easy to rationalize everything until it is ACTUALLY your baby and she ACTUALLY has something wrong with her. It becomes so much more emotional than I could ever explain. Luckily the test results did come back on Tuesday night and were all normal. This is a blessing and a curse. We are of course over joyed that she doesn't have some of the more severe syndromes we had feared, but we still don't know what is wrong so there is still so much uncertainty as to whether she will be healthy or not. With that information we are of course continuing on with the pregnancy and are very excited that she has made it to viability day. We are hoping that the rest of the pregnancy is uneventful and we go on to have a full term vaginal birth. I am so proud of my husband and myself for getting through this tough period together. These kinds of things really test a marriage and I know that there will be more tough decisions to come. It makes deciding on a name seem so superficial in comparison to these heavy issues! Now we are moving forward on dealing with the issues individually. The most daunting thing at this point is dealing with feeding issues. I have a ton of questions about breast pumps, exclusively pumping, and building up a supply so be prepared for a few threads on those!

pbandjmom · January 2014

I admire you for continuing with your pregnancy and working as a team with your husband. You are going to be wonderful parents to your LO, even before she is born. I hope the rest of your pregnancy is uneventful. Lots of hugs your way!

kseccomb17 · January 2014

((Hugs)) what a strong family you are. Please know you have my continued thoughts and prayers.

Linnea503 · January 2014

That sounds incredibly difficult. I'm glad you got some good news. hugs!

Laroo0220 · January 2014

Wow I don't even know what to say. I'm so happy to hear those test results came back as good as you could have hoped at least. I can't even imagine being in your shoes. I hope everything turns out for the best and the cleft palate is the only real thing you need to worry about. We are all thinking of you and baby and hoping for the best!

Rrrrrachel · January 2014

I'm so sorry you're going through this, and you're absolutely right it's one thing to consider it in the abstract and total different to be dealing with it in reality!

KatieGummow · January 2014

Wow, you are incredibly strong and I admire you so much. What great people you and your husband are. She is so lucky to have parents like you two. Thanks for the updates! Fingers crossed for an uneventful rest of the pregnancy!!!

rockstarlaw · January 2014

Thoughts & prayers to you & your family - hoping thins are much easier for you from here!

RocksInTheWater · January 2014

Wow, I can't imagine what you and your husband have been dealing with. You two are very strong and will be able to handle any challenges your little girl faces. As far as feeding issues, you will have specialists in the hospital, such as a speech-language pathologist and possibly occupational therapist, that will work with you that are trained specifically in feeding babies with cleft lip/palate. As far as pumping advice, you are in a good place to find plenty of that! Continued prayers for your daughter and your family.

ksulli · January 2014

What an awful string of conversations and decisions. I'm so happy to hear the amino results were clean and that you may/likely will be dealing 'only' with the three issues identified.

I wasn't an EPer, but do work full time which involves a lot of pumping. I'm happy to answer whatever questions I can when you start asking them.

rlmanning · January 2014

Im so sorry you had to go through that. But know you can always come here and talk/vent whatever you may need and we will listen!!

I pray for a heathly rest of your pregnancy!! Good luck momma~

Mustardseed2007 · January 2014

I'm glad the results came back without further problems identified and that you were able to come to a decision. I'm sorry you're having to go through all this.

thomas930 · January 2014

So happy to hear you got good results. I will continue to pray for you and your family and truly hope that everything works out and is very uneventful. Big ((hugs))

AcaAwkward · January 2014

So glad your amnio results were clear! What an absolute nightmare of a situation, but it sounds like y'all handled it with so much strength and grace. I truly hope the rest of your pregnancy is uneventful and your baby girl arrives as healthy as possible!

MamaFantastic · January 2014

you are an amazing mom already. what a blessed little girl to have such dedicated, inspiring, committed parents on her side from the get-go.

you are awesome. you can do this!

Mamamonzo · January 2014

Your baby is so lucky to have such strong amazing parents fighting for her! I'm so happy to hear the results came back with nothing more! DH and I will continue to pray for you and your LO!

*sparky* · January 2014

So sorry for everything you have been through so far and very happy for your good news. You LO has an amazing mom and dad already - what a lucky little baby! I do hope that the rest of your PG is uneventful - you have been through enough stress already. T&P's are with you!

ashcole28 · January 2014

More (((((hugs))))) and T&P's! I seriously just want to hug you! You and your husband are so strong and so is baby. I wish the best to come out of this situation for all of you. (((((Hugs)))))

kelley72 · January 2014

Continued thoughts and prayers for you and your lo!

Rogue237 · January 2014

I can't even fathom having to have that conversation, I'm so sorry! I'm happy to hear your test results were good - lots of thoughts and positive vibes to your family!

Serenla · January 2014

I'm happy to hear that the results are normal, I can only imagine being faced with that decision. So many ((hugs)) mama.

Holljade · January 2014

So happy to hear her result were good. What a heartbreaking discussion to have to have- you and your husband are truly wonderful parents already!

If you ever need to talk about EPing please feel free to let me know!

teachingmama11 · January 2014

So sorry you & your DH had to go through such a stressful time, but I'm glad you got good news! Sending T&Ps for an uneventful rest of your pregnancy!

baileymama3 · January 2014

I am so happy to hear that the results came out good. You and your husband are stronger than you ever imagined and your sweet baby is so blessed to have such loving parents- ready to welcome her!

Tcindric86 · January 2014

Glad to hear you got great news! Hope the rest of the pregnancy goes well!

hordol · January 2014

So happy to hear the good news!! I'm sorry you and your husband had to go through all of this, I know it's something that many of us cannot even fathom. You guys are strong! Congrats and I hope the rest of your pregnancy is uneventful!

Knufflebunny2 · January 2014

Sorry to hear that things have been scary and hard, but proud of you for making such a strong choice. Stay strong mama.

twinklemoon · January 2014

You guys are truly a testament of the meaning of being strong. Glad those test came back normal. And although you might not be out of the woods yet... That little girl already seems to have the perfect parents to tackle like along with her if need be.

feeling very proud of you guys. I know im a stranger...but that's how I feel.

cfthoct292011 · January 2014

I'm so happy that your results came back normal. I COMPLETELY understand what you had to go through. I had to make that very diffiicult decision unfortunately last january. It brought tears to my eyes just reading about your whole situation. I am so very sorry that you had to even embark on that journey and also overjoyed that your test results came back normal. I will keep your baby in my thoughts and prayers, remain strong and hold on to your faith.

snmetz7 · January 2014

I can't imagine the difficult conversations and hard choices that you have had to make. I am so glad that the amnio came back normal! Your little has two very strong, loving parents!

BiggerinRealLife · January 2014

I'm crying for you, sweetheart. For your courage, for your resilience, for your incredible marriage, and most of all, for the love you have for that sweet little baby. I wouldn't wish your situation on anyone, but how you have held up under all this strain is inspiring. You and your husband are amazing people, and you are already amazing parents to that awesome little one inside of you. I'll keep praying for you and your baby, and I hope you two have lots of people around you who can bolster you up and help you bear your burdens. If not, maybe a grief counselor? I know the strain this can put on people and a marriage, and even when you're doing well it can help to have someone to help you process what you're going through together. Hugs to you, my dear. Thank you for sharing, and I look forward to talking breast pumps with you!

Bluebird2318 · January 2014

My heart skipped a beat when I read the title! I am so sorry that you and your DH had to have that conversation at all, but so very happy for the both of you that your amino came back clear! Still hoping for all the best for you two and your daughter!

bootsiebabe · January 2014

Wow. It sounds like you and your H have gracefully navigated an impossible situation. I'm so glad that your results were good and I hope that your little girl continues to grow strong and healthy uneventfully!

spano41 · January 2014

Thank you again for all of the support you ladies continue to show for me and my family. You really don't know how much it has helped me through this!

eme520 It's good to hear that there are lots of moms that have uneventful deliveries who are in situations like mine.

poru Thanks for the advice about the lactation consultant. We have already met with a nurse that specializes in feeding babies with a cleft but I may also look into a lactation consultant who can help as far as milk production. I know the cleft will not be something that will hold our daughter back, but it is always reassuring to hear stories about well adjusted successful adults who have had a cleft.

jenniferb123006 I'm sorry you are in a similar situation. All we can do at this point is attempt to enjoy the rest of our pregnancies while continuing to do what's best for LO. (((hugs)))

cfthoct292011 I'm so sorry you had to go through that. I truly feel for you. You must be one strong momma to do what is best for your baby. Hoping this pregnancy is completely boring for you and that your experience will make having a healthy baby even that much sweeter.

BiggerinRealLife Thanks for the advice. So far we have been doing pretty well but I think we are still getting over the shock of this whole experience. We haven't talked to many people about this because we didn't want to worry anyone before we had all of the information. The bump has been amazing for me to be able to vent and I can't tell you how much all of the support has meant to me. We are slowly starting to tell people about the cleft and educate them as to what it will mean for our baby. I think we will have a lot of support to get us through this but will seek help if we need it!

Bluebird2318 Sorry!! I didn't mean for the title to be misleading but I wanted to warn people because termination is obviously a touchy subject so I didn't want anyone to get offended or upset!

meg.eliz1 I'm sorry to hear about your friend. Some of the syndromes they were predicting for our daughter had a similar prognosis so we were very worried. I hope your friend can find strength to get her though this tough time and her next pregnancy results in a healthy, happy, baby.

BR · January 2014

I'm sorry you had to go through this. It's hard to even imagine the feelings you must be going through. I'm happy for your good news and hope the rest of your pregnancy/delivery go well. You and your husband are very strong.

I found out my insurance covers three lactation consults when I called to find out about a breast pump. You may want to check into that. I really wish I had with my first. It can be very overwhelming and I wish I had the guidance of an expert after leaving the hospital.

zazu13 · January 2014

So happy for some good news for you. I understand there are lot of uncertainties still, but the certain thing is this little one is very much loved and wanted and will be in great hands when she arrives. Hope everything turns out best case scenario for you!

liztheus · January 2014

Hoping that your baby girl will be as healthy as much as she is loved. My thoughts and prayers are with y'all!

CalinAZ · January 2014

I am so glad that you've been able to move forward and that the test results came back without anything else to worry about!

Just wanted to share that my niece also has a cleft lip and palate. She just had her first of the 3 surgeries to correct this, which has closed up her cleft lip. There is some scarring, but otherwise, you wouldn't even know she had anything missing

. She still has 2 more surgeries scheduled before everything is fixed, but has made so much progress already. She is such a beautiful little girl, even before any of the surgeries, as I'm sure yours will be! She eats through a feeding tube in her tummy, which obviously isn't ideal, but is definitely best for her. Your willingness to pump for her is so great - you'll be providing her with so many good benefits!

Sending much love and well wishes towards your little one

tushjhav · January 2014

I admire u and ur baby is blessed to hav u guys as parents!

aml+japan · January 2014

I'm not religious but it seems like someone or something is looking out for your little one! I'm so glad this is a happy post and kudos to you and your DH for making it through such a tough decision.