3 months after giving birth to my first daughter, my boyfriend and I found out I was pregnant once again. We never could have imagined what we would later find out. When I was 26 weeks I went to the ER because the baby was sitting on my sciatic nerve and was causing me great pain. They did an ultrasound on the baby to make sure she was doing fine, I noticed that her measurements were at about 24 weeks but I didnt think anything of it. When I went back to see my OB he did an ultrasound and this time she was measuring about 3 weeks behind. He referred me to a perinatalologist. In my first appt he noticed bilatarel cleft lip, and there was a hole in her heart. At 32 weeks I had an amnio done, and I got a phone call a week later the results came back as she was missing part of the short arm of her 4th chromosome. She didnt really give me much more information than that, so I set out looking for information. This was one of the first websites I came across and I have to say I after reading some things about WHS I was terrified, I bawled my eyes out many times just thinking about everything that could go wrong. I was induced at 38 weeks and gave birth to a 3lb 13 oz 16.5 in baby girl on July 27th, 2011. We named her Addilynn. She was taken straight to the NICU and put on oxygen because she was having a hard time breathing and a feeding tube because of her cleft lip and pallat. When she was 4 days old she was transferred to Childrens Medical Center in Dallas because she developed an infection in her stomach called necrotizing enterocolitis, and we soon found out that her intestines were rotating inside of her, and she had surgery to correct it at 6 days old. As of now she is still in the NICU at Childrens and she is expected to be there at least another month. I have to say after getting her into this world, everything isnt as scary as I thought it would be. God wont hand someone something that he knows they wouldnt be able to handle and everyday we get with our miracle baby is such a blessing.
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Thanks for sharing Addilynn with us. She is so beautiful! I love her name.
Oh she is precious!! And only 2 ounces heavier and half an inch longer than my Emma was when she was born! It is scary reading about all the things that WHS kids may or may not do (according to the doctors). But they are miracles, a blessing, amazing! I look forward to hearing more about Addilynn (pretty name, btw)!
What a beautiful name! Welcome Addilynn and her mom to our online family. You have our support and prayers; she will amaze you…just watch! xo
Hi Kourtney and Addilynn, and welcome to the group. First off, congratulations on the birth of your beautiful baby girl! I am so glad that you shared your story. This blog has been a great source of support and also information for me. My son, Dylan, is now 2 yrs old (he also had a cleft palate that has been repaired) and doing wonderful, so much better than the doctors every expected. I know how hard this time can be but never give up hope and cherish every moment.
Hugs to you,
Kristy
http://www.ourlittledillpickle.blogspot.com
Hi Kourtney and Addilynn, and welcome to the group. First off, congratulations on the birth of your beautiful baby girl! I am so glad that you shared your story. This blog has been a great source of support and also information for me. My son, Dylan, is now 2 yrs old (he also had a cleft palate that has been repaired) and doing wonderful, so much better than the doctors every expected. I know how hard this time can be but never give up hope and cherish every moment.
Hugs to you,
Kristy
http://www.ourlittledillpickle.blogspot.com
How beautiful she is. Hang in there Mom. Things do look scary but they are such sweet babies. Take everything one day at a time. don;t worry about the future yet. I will keep you in my prayers.
Eve was in hospital for a month after she was born. It is a very overwhelming time, hospitals and going back and forth can be very stressful, it will be so great to get her home. I look forward to hearing more about Addilynn.
Breanna – mum to Eve, 17 months
Keep up the good work. I hope you, Addilynn and your family are well.
I know that I’m getting to you late, but I’m sure you know by now that things seem scarier in the beginning….then you develop your system and what works for you. My Nathaniel is 15 months old and is doing great. He’s had multiple visits to the hospital of course, but for the most part he does very well. He was also born with a bilateral cleft lip and palate. He had his 1st repair(lip) at 5 months & 9 months(palate). He does have developmental delays like he still can’t sit up or stand on his own unassisted, and he doesn’t talk….he’s just started babbling a lot & is now saying what sounds like “ma-ma-ma-ma.” I do think it’s just a sound but I also think it’s because it’s something he hears. I’m just glad he’s saying it. At one of Nathaniel’s hospitalizations, the attending physician-who was very informed & informative with Nathaniel’s condition-later told us that she was a physician because of her son. He was born with the same condition and because of that she became a doctor. She is the person who told me, “Special parents are given special children.” We were very emotional at the time, and that just made the rest of our lives. Good luck to you and your family. Keep us posted!