Seeking Advice

L.,
NOBODY wants to hear "bad news" about their unborn baby. I'm sorry for the pain it's causing you. But please leave room for hope in your heart! My husband and I have a six year old son with Down syndrome who is such a BRIGHT spot in our lives! My triple screen results showed increased risk for DS, and we decided to have the amnio done because I wanted to know for sure. I wasn't worried about miscarriage - I just had a reassuring feeling that would not happen. When we got the results of the amnio, we were devastated. World caved in. I won't lie - it was the single most painful event in my life. We did not want this baby. Where was the "perfect child" we deserved? We just did not want to be in that place. As my husband and I talked that night, called our parents, etc., I realized that the pain of terminating the pregnancy would FAR outweigh the pain of having a child with a disability. I read some accounts on a website from women who had terminated, and their grief and regret sounded unbearable and unquenchable. From the moment we decided to keep and love our son, our outlook improved. We were blessed to be in agreement - some couples disagree on termination vs. continuation and that can be a source of stress. Our son has been the most wonderful blessing in our lives. He is our brown-haired, mischievous, playful, naughty, dirt-loving boy! He's more alike other children than he is different! None of us can imagine life without him. Our family has become more accepting, insightful, and courageous because of his influence. Of course there have been challenges, and they will continue, I'm sure. But what child comes without challenges? The challenges just may be different. The "perfect child" is a myth! In many ways, my son with DS is easier than my 13 year old daughter or my 4 year old son.
I consider myself "pro right choice," if that makes sense. I would not rule out abortion in severe cases, like if the mom's health is at risk, or if the fetus is completely incapable of sustaining life. But I personally feel that far too many couples abort for the wrong reasons. Of course this is my opinion, and it may be offensive to some. Down syndrome is not a reason to abort. I've found it to be an amazing gift wrapped in a deceivingly doubtful package. My hope is that doctors will offer pregnant couples the support and hope they need, instead of just gloom and doom. A great example of a couple going through the heart-wrenching situation you are, is that of Greg and Tierney Fairchild. Their story is told in a book called, "Choosing Naia," by Mitchell Zuckoff. When the Fairchilds find out their unborn baby has Down syndrome and a heart defect, they really dig in and investigate before they make their decision. They interview doctors, geneticists, Down syndrome families, and even adoption services. It's a great read, if you're up to it. Also a great read is "Welcome to Holland," a short essay by Emily Perl Kingsley.
Sorry for the long post and for the very strong opinions. I don't mean to offend or worsen the situation. I just feel like I have a secret to share that many are hesitant to believe: life with a child with Down syndrome is not horrible! In fact, it's very rewarding!! Be brave, give the baby a chance to prove it to you. At least take the time to thoughtfully consider everything before making an irreversible decision.
If you don't hate me for what I've said, and would like to talk/write more, please reply, and I'll be happy to correspond with you privately. Lastly, I am not you. It's not my place to judge any decision you make. But, I do feel like I should share my story, so that's what I've done. Best wishes to you!!

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Sorry no advice. But I just want to say..., I'm sorry. I know there are no words anyone can speak right now that are of much comfort.

I had a partial molar pregnancy four years ago. That is different from your situation, but I do know the sadness.

Much love, strength and peace to you L.!

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My first pregnancy was at 41 and I too registered with very poor odds for chromasomal abnormalities. I stressed over it for almost 2 months before I could do an amniocentesis. The amnio showed that everything was just fine and I delivered a perfectly healthy daughter. She is now 3 and two years later at 44 had a healthy son.

If you're really worried, go ahead and do an amnio. It gives you peace of mind and if there happens to be a problem, it will allow you to get your doctors lined up for future care/concerns.

I chose not to do the earlier genetic tests the second time around because I didn't want to go through the stress levels again. However, my hubby really wanted the amnio the second time, so I gave in. It hurt a little more than the first, which was painless, but we didn't have to worry about anything after that. Baby boy was healthy.

Good luck and I hope you get some peace of mind, regardless of the outcome. All kids are precious and there is always a support group for your needs. Don't forget the New Moms Group at the hospitals. Ask your OB about them. D.

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I'm so sorry you have to deal with this difficult situation. My 1st baby was text book easy. Everything went perfect. My second ended in a miscarriage at week 13. I didn't naturally abort, so it was when I got an ultrasound that they discovered the baby had died. When the ultrasound lady told me I said that I knew something was wronge (while sobbing, of course). I just had a weird feeling that something was wronge. I even had a dream the baby died. I think our subconciouse mind knows what is going on and sends us subtle indicators. My third pregnancy felt good, but I had this blood test that said I tested high for down syndrome. I was a mess! I kept saying to myself, "this doesn't seem right...my gut tells me he's fine". I had the choice to do an amnio. and find out for sure and I did and he was fine..no downs. So, my advice is listen to your gut and make your decisions on what feels right. My prayers to you.

p.s. I wanted to add that if you do try again, make sure you are taking folic acid PRIOR to getting pregnant. The folic acid is crucial with the chromosomal development. Most women start taking it after they realize they are pregnant, which is still good, but it's most important at the VERY early stage of pregnancy.

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L., first I'm so sorry you are having these concerns and decisions during, what should be a time of great expectations, joy and promises. Ultra sounds are not foolproof. They are just one diagnostic that provide a piece of the puzzle. Your doctor is being frank and preparing you for the worse. I would get an amino and in the mean time make an appointment with a genetic counselor. Then with your husband and your doctor discuss your options and make a decision. It is your decision. The genetic counselor can also give you the information you may need to make the decision to 'try again'. What is going on now may not be aged related, it may not be genetic, it could be just one of those instances of nature. Be good to yourself, give yourself, your husband and your daughter time to cope and heal. My thoughts and prayers are with you. Peace.

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Hi L.,

No advice really, just want to send you my thoughts and prayers for you, your baby and family. As a fellow pregnant mom, I cannot fathom the heartache you are feeling. My heart is breaking for you right now. After reading all the posts, I agree getting as many opinions as you can is the best option, and then make a descision that is best for you and your family. It is your decision, not anybody else's. Bless your heart....... ~A. V

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I don't know how much actual advice I have for you, L., but I went through a very similar situation with my second child, so I know how you may be feeling. At 16 weeks I was told my son had too much fluid around his neck, so they did a more thorough ultrasound. He had fluid around his lung and his hear. You could see it on the ultrasound. He was diagnosed with a pleural effusion, not unheard of in adults but rare in fetuses. The prognosis is not great in fetuses and it's very difficult to treat. In some cases you can have a shunt put in (in utero) but that only helps in about 50% of cases. There is quite a bit of information about pleural effusion in fetuses online, but there is no conclusive evidence. Anyway, at 20 weeks I went in for another ultrasound to check his status. During that four week waiting period I felt every emotion possible: anger at the doctor for telling me, sadness that my baby might die (or if he survived, die within the first year), frustration about not being able to help, doubt about myself as a baby-making machine, guilt for maybe not being able to care for a baby with special needs, guild to entertaining the thought of terminating the pregnancy if he didn't get better, more sadness, more frustration, it just went on and on. I'm very fortuante to be able to say that at the 20 week ultrasound the pleural effusion had completely gone away. Now I have a happy, healthy and adorable 5 month old boy (my second one). I'm 38, so I understand the age concern.

What I want to say is that there are miracles that happen. I honestly believe that these things happen more regularly than doctors ever realized before because of the advances in technology. Doctors and medical practitioners can see so much more than they used to. Many times I believe these unusual/interesting body changes are just a part of babies developing. As with any living thing, there are standards and benchmarks, but everyone/thing still develops in their own way, at their own pace. The ultrasound of your fetus is much more advanced than the one you had with your daughter those 4 short years ago, I imagine. I know it is much more advanced than with my 3 1/2 year old son.

I guess my advice is to be strong and do what you can to take care of yourself and your daughter. Eat healthy, exercise and take care of your fetus as you would if the fluid retention was normal. And know that there is a possibility of a good outcome. If the outcome is not good, it's ok and you'll make it through. And you should absolutely try for another one--39 is the new 29! You're a spring chicken! :-)

Good luck and best wishes.
~J.

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L., I didn't read any of the responses so I don't know if others have said something similar and you didn't say how far along you are, but I have a friend who had some type of ultrasound at 13 weeks that diagnosed the exact same thing and they told her at that point that her baby would either die in utero or be stillborn. She was freaking out and wanted to have an abortion but her husband was strongly against it. At 20 weeks another series of tests and a deep scan U/S were done and they showed that the fluid was completely gone from his neck and his spinal column. I have heard lots of other stories since then with the same outcome and I do believe that it is probable that LOTS of our healthy babies have those 'abnormalities' it is just that until fairly recently we weren't looking or testing as early as we are now. JMO

My heart goes out to you and your family in this very hard time.

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My heart goes out to you.

Just over two years ago we lost our son. We were at 21 weeks at our 2nd ultrasound when we learned that he had Trisomy-13 + alobar holoprosencephaly. 1% chance he would make it to term alive, with a median survival of less that 3 days (and this was not with both conditions factored together, which would make the situation more dire). After a significant amount of research we chose to induce birth at 22 weeks, knowing he could not survive. It was surprising how difficult it was to obtain the information to make this wrenching decision. Our care providers offered little in the way of guidance (fear of liability?) and it was a bit of a logistical struggle to convince the hospital that we wanted to take control over our path in terminating the pregnancy. They wanted us to have a D&E abortion and that did not meet my personal needs. My unsolicited advice to you is it is not up to anyone but you what you do from here, whether that is to continue with the pregnancy, to abort, or to induce birth early. Inducing birth is less of a physiological option if you are at less than 20 weeks. Get as much information from as many sources as you can, including parents (if there are any) of children with your situation. Downs children can do well, trisomy 13 and 18 less so. Don't make a hasty decision. The Amnio could go a long way in shedding light on your situation.

My heart goes out to you.

I am now 36 years old and 7 months pregnant with what appears to be a healthy boy. Our midwife had suggested that we wait before trying to get pregnant, for both psychological and physical reasons. We waited a little over a year past what would have been his full term birthday. His name is Tyne, and this may sound odd, but I still celebrate him.

What we were told was...
Our chances of a chromosomal disorder occurring in another pregnancy increased by 1%. This factored for my age and the fact that this occurrence was not a 'mosaic' chromosomal defect. Your physician and or genetic counselor should be able to speak to you about your situation.

My heart goes out to you and your loved ones.

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I would agree with some of the other gals here about seeking a second opinion just to be sure. It will help you to make the difficult decision you are being forced to deal with in deciding whether to try again. My thoughts are with you.

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I will pray for you and your baby. All love and peace to you, L..
C.

I wanted to add that with my first baby, the doctors had some grave news about her first ultrasound because of some spots around her bowel. I also had a blood filled sack in the womb which was abnormal and they were overflowing with gloom and doom stories. I was a nervous wreck through that pregnancy, but still determined to have the baby. Three different doctors offered to schedule an abortion for me and "try again" as they said (presumably for more normal test results), I finally had to tell them that admit that I was willing to have my baby, special needs or not, CF or not, and they left me alone, but those were hard words to say outloud, but it was what I said to get the docs to get off my back. Anyway, she is now 8 and perfect and gifted academically and healthy and beautiful. I cannot imagine a more perfect child, so there you go. I know it doesn't always turn out this way, but life can be what you make of it anyway.

With my second child, I pretty much stayed away from all diagnostics because I didn't want to be a nervous wreck like the first time. It was a good move. Though I was 38 and they wanted to give me lots of diagnostics, I said no and had a nice calm pregnancy and another healthy baby.

All the best to you. I really hope you can find some peace and don't get freaked out by doctors too much.

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Hi L., I am so sorry to hear that you have to go through this at such a time in your life that should be all joy and no worry. I have been there. I have an 18 yr old daughter, a 9 yr old daughter, and a 7 year old son. In between my 9 and 7 year old, I was pregnant and went into labor at 17 weeks along. I delivered my son at that point because we could not stop the contractions. They told me at that point that it happened due to chromasonal abnormalities. I was devastated but we decided to try again. I got pregnant 6 months later and again went into labor early, at 13 weeks. We stitched my cervix shut and I delivered my son at 37 weeks after the stitch was removed. All seemed great with him over the years except for ear infections and a little speech problem, until May of last year. He was diagnosed with Hunter Syndrome. It is a rare syndrome that only 198 people in the whole united states have. It is passed on through me, but we didn't know it was even in our family. He now has to have infusions every week for the rest of his life to replace the enzyme that is not working correctly in his body. Now you may think why am I telling you all this? Because even if I only have another week or another 30 years with him, I am glad we tried again and I knew him and loved him for the time I have with him. I feel my body went into labor early with him because it knew something was wrong. Yet due to our intervention, he is here with us. I don't know how long he will be with us, but if I had to do it all over again knowing this is what I am in for, I would do it in a heartbeat. so I say if you are up to taking care of a child no matter what the problem is, go ahead and try again. If taking care of a special needs child may be hard for you, then I say don't try again. You may have a perfectly healthy child with the next one, as my other two children are perfectly healthy. You will know in your heart what you want to do. Big hugs to you! I also made a pregnancy loss website that you may look at if you would like. It is at http://www.geocities.com/garrispc2/Nicholas.html
If there is anything more I can do or if you would like someone to talk to, don't hesitate to email me anytime.

Hugs, C.

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Hi L.,

I am so sorry for you and your family. I imagine this must be a very difficult time. I don't know anyone that has been in your situation, so I can't give advice on on future children; however, I'm sure a gentic counselor can give you all the pertinent ifnormation to make a decision.

I'm 41 years old and I just found out that I'm pregnant also. Though we were very excited we were also concerned because of my age and the increased chance of chromosonal abnormalities. I did a lot of reading and one thing that became very clear was that those tests are often false positives and that a later test will reveal that all is okay. My husband and I deciced to forgo all the preliminary testing for that reason and went straight to a CVS, which was performed last week. At our genetic counseling session, the counselor, once again, reiterated the high incidnece of false positives. We are currently awaiting the results.

You sound like you have a good outlook and I wish you luck. Keep us posted and I will keep you in my prayers.

P.

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Hi,
To be sure the fetus has an abormality, a amniocentesis or a chorionic villi study needs to be performed, otherwise you are guessing.
Deb, R.N.

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L.,
I"m not sure how much this will help but when I went in for my 20 week ultrasound with the specialist as I was also over 35 and at high risk. I was told that my child would be born with club feet and that they could not get a clear view of her heart and that there might be other complications as club feet is usually in combination with some other genetic disorder, could be down's could be a bunch of other problems. I got mad and told them I did not care and that I was going to have my baby and no they were not going to do an amnio to tell me what else might be wrong. Too much risk to my baby for me to have a needle poking anywher neer. I dont know what your beliefs are but I knew that my baby was a gift from God (we went through 10 yrs of infertility before she was concieved), and that I was going to have that baby no matter what. All of that to let you know that my beautiful baby girl was indeed born with bilateral club feet but none of the other problems that they told me might happen. Be sure and talk to more than one Dr and be aware of all of your options before you make a decision. Then do what your heart tells you is the right thing and once you make up your mind, remember that you dont have to justify your decsions with anyone. Its your life you are the one who has to live it.
Good Luck and God Bless.

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My beautiful baby brother. My mom had him at 45 and declined the usual tests due to age because she wanted the baby, but an ultrasound showed "water in the brain" and an amniocentisis confirmed down syndrom. The thing about Downs is that you can have anything from baby for life to fully functional able to live on their own and a test cant tell you that. Well, my brother was one of the quietest happiest babies I know. You had to remember to feed him because he rarely asked. At 5 he is spelling! He knows his letters but only says a few words. He can spell his name and things like cat and dog. He is such a blessing to our family with his cheerfulness and love.
I know this isnt what you were looking for but I wanted you to know our families success story.
Prayers, Jen

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Have you had an amniocentesis? That will clear up everything. It will tell you exactly if anything is wrong with your baby.

My first child was born with anancephlia. Basically she had a brain stem but no brain. When she was born her head was the size of her fist. Obviously she was still born.

Two years later I had a wonderful perfect daughter, now 27 with 6 wonderful perfect children of her own. Twelve years later at the age of 38 I had another daughter who is fine and 2 years later I had a son who is just fine. I did have amnio's with all three of them. The heart break of carrying a child to term and not bringing that child home was just more than I could bear a second time. Good luck with this child and others.

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My sis got a bad amniocentesis (sp) & her doctors recommended abortion. That is against her conscious, so she carried the baby expecting some level of retardation, & would take what ever came. Rachel was born with a birth mark on her head. That's it. Otherwise, perfectly normal, happy child, now 12. Testing is good, to give you indicators of what you might expect, but don't let doctors talk you into something that is against your own heart. My other sis has a down syndrome girl who is now 24, & living on her own. Yes abnormalities have their challenges, but you will grow through them. If you let him the Heavenly Father will walk with you through this.
hang in there, A.

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Dear L. S,
A friend of mine, a lovely young woman though slightly DD, was pregnant a couple of years ago. First the doctors told her that her baby was Down's syndrome, later they told her that it was going to be dwarfed, each time encouraging her to abort. She held on and has a beautiful, charming two year old son, who is perfectly normal. They may be right in your case, but they might not.
My ex-mother-in-law had a Down's baby and had the courage to keep him when it was not the thing to do and there was very little help. She already had other, normal children, that kept her very busy. He has been an important part of the family, and loved by all. They learned a great deal from him and by standing with and for him. If she had it to do over, she would do it again.
You will have to decide if you have the courage to stand with a disabled child, if that is what comes (and there is a lot of help out there), or not to take the risk. Only you can make that very tough decision. Good luck!
L.

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I had exactly the same thing happen to me, and all I can suggest is what I did. I prayed for my baby every day from the tests on out that he would be healthy, and I put my trust in God, knowing that He would either give me a healthy baby boy, or He would give me the strength to deal with whatever came, and I am so glad to tell you, that even though my doctor was 100% convinced that I was giving birth to a Down's baby, my little boy is completely 100% normal, and is bouncing up and down on my lap right at this moment. I'll keep you and your little sweetheart in my prayers.

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I hope the ultrasound is wrong - and this does happen. My twins appeared to have indicators of down syndrome by ultrasound but they were actually two perfectly healthy babies now 6 months old! I wish you the best .. D.

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Hi L., Had a similar situation, the only thing you can do is believe that everything happens for a reason! I lost my son at 5 months gestation, his heart just stopped, as hysterical as I was I thanked God that if he had to take one of my children, he took one I hadn't gotten to know yet (2 older daughters). When we have no control, we can only believe. Yes, you can have a normal pregnancy after something like this, but always make sure your doctor is aware of this pregnancy. I will be praying for you and your family, and one more thing, believe in miracles, they happen every day! R.

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I had an AFP test at week 16 that showed I was high risk for downs, 1 in 110. Then, the ultra sound showed that my risk was better, but only to 1 in 220. So, still what they considered high. My daughter is just fine. Perfect and beautiful.

Rachel

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I know that this pregnancy must be causing you much emotional pain.

My cousin gave birth to a dead fetus for the second time. For some reason she had to carry it full term even tho they knew the fetus was dead. Before that she gave birth to twins, one was dead.

They then had genetic counseling which gave them the percentage of chance to have a healthy baby. They decided to not get pregnant again.

Before getting pregnant again get GENETIC COUNSELING. I've capitalized those words because with so many posts this may get lost.

What you do with this pregnancy is entirely your husband's and yours. I suspect that your baby's condition is different than what the mother's with Down's syndrome has been. I think that a doctor does not say the fetus will die or be stillborn for Down's syndrome. To help you decide, perhaps you could find a counselor who specializes in situtions like yours. OHSU is a great resource. My cousin found someone in Eugene. Since you live in a lge university town I'm sure that you can find more comprehensive help. I would get as much information and counseling that I could before making any decisions that will change your life so dramatically

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All I have to say is that make sure you get as many second opinions as possible and have done everything possible before you make any drastic decisions. I found out that my son had Spina Bifida when I was 8 months pregnant with him and my OB and a pediatric neurologist said that it was severe enough that he could have brain damage and probably will not be able to walk and asked if I wanted to consider abortion....Well, 15 years later my son is perfect and walking and no one would ever know that he was born with medical issues...so just make sure you feel right about any choices you have to make. Doctors know what they are doing but there is always room for error. Good luck with you and I'll wish for the best!

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L., I don't have any advice, but I will pray for you and your baby!

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I wanted to try to give you some hope. They found abnormalities with my second son during the routine ultrasound. His renal pelvis was dilated so they sent me back for a more detailed ultra sound, and during that they found fluid built up in his chest. They thought he might have chromosomal abnormalities so they gave me an amnio, and thankfully it came back normal. But the chest fluid persisted through out my pregnancy. We didn't know what to expect when he was born because they could tell what was causing the fluid build up. He ended up spending 3 weeks in the NICU after he was born. He had fluid continuously pouring into his lungs and generalized edema. The doctors couldn't figure out what was wrong with him, and couldn't even seem to agree on a diagnosis. However, this story has a happy ending. After 3 weeks they finally sent him home with us, he still had fluid in his lungs but he was eating and could breath by himself although it was very rapidly. Long story short, he just had his first birthday. He is a totally happy, healthy little boy. After we got him home he slowly just got better. We have no idea what was wrong that whole time and probably never will. But the point is that he made it, and lots of babies do. So hang in there, your baby could be just fine. It's a long hard road having an abnormal pregnancy but you never know you just might get a healthy baby in the end. :)

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I've had several friends register high alpha fetal protein and turn out perfectly healthy kids. But what you are describing is the nuchal translucency measurement. What about an amnio? You could get definitive results and plan from there. Also, are you having your ultrasounds read by a perinatologist? If not, that is recommended. Portland and Eugene have perinatology centers. The skill of the ultrasound reader is crucial. I wish you the best and peace in whatever decision you make.

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L.:
I am so sorry. I lost my first child, he was stillborn. It was a freak accident per the dr's. (I just had a healthy baby girl last May.) To answer your question, a friend of mine decided to terminate her pregnancy because her baby had Downs Syndrome (now before people start getting angry, my friend also lost her baby due to stillborn death and the chances for a stillborn baby when he/she has Downs is HIGH and my friend could not endure that pain a second time). My friend just recently had another baby and she was healthy. So there is hope. Here is a great website to talk to other mom's who are going through what you are: www.hygeia.org.

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L. - I'm so sorry you are going through this. Two years ago I went through almost the same thing. After testing, there were chromosomal abnormalties and I lost the baby. Now I have a healthy one-year old and I am going to be 44 this year. Hang in there...it is not easy, and you are not alone. Good luck!

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L.;

First, I must say "God don't make no junk!" so please don't think of throwing it away. I've known several cases where the Doctor's have tried to talk parents into the ugly decision and have been totally wrong, wrong, wrong. What they were saying about the babies was so far from God's truth and purpose it was like black from white. The babies were NORMAL!!!
I personally haven't had to make that decision, which would be so difficult I think I'd run and hide. I would say you need a second medical opinion, someone to pray for you and to pray with until you find peace. Trust in God and rest spiritually and physically.
I would also find someone who could get you started on some OPC-3 from Market America to help you take a product that would carry the toxins out of you body. Cleanseing your blood as well as the baby's. It's herable it's fantastic and I know personally it can help.
God bless and keep you both, you're in my prayers
C. C

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I carried a baby with anencephaly (when I was 28) and decided to terminate the pregnancy, which was one of the most difficult things I've ever had to do. Several years later I had my healthy son. I then had 3 miscarriages. I now have a healthy 16 month old girl. I had her when I was 40, so went through the amnio with both of my babies. I truly feel first hand I know what a miracle a healthy baby is. If this pregnancy for you does not work out it will be a very hard thing to go through, but you can have another healthy one. Things do happen for a reason--we don't always know what that reason is........... Just know that you have people around you that will support you and care about you. Please don't hesitate to email me if you need something--I also own my own business.

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My prayers are with you and your baby! My daughter went through a similar situation. Though the doctors prepared us for the worst we continued to have hope where there was life. The baby is our little angel now but my daughter is now in a healty pregnancy. I really thing we just never know. Every pregancy is different but your doctor can tell you if this is something that may be reoccurring. Ultrasounds don't tell the whole story too so pray, take really good care and keep in close touch with your doctor. God be with you and your baby!!
S.

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