Update on Conley's Eye Treatment

We saw Dr. Hunt at Cook's in Hurst. We were very happy with him. The three options that Dr. Hunt discussed with us were 1) steroid injections 2) oral steroids or 3) Propranolol. He said the steroid injections can possibly cause skin discolorations. Also, the injections would only be to treat the hemangioma on her eye, whereas the oral treatments would also reduce the hemangioma on her head. The oral steroids of course have some side effects that would have to be monitored. The third option was the one that he felt best about. They have only actually used it in a handful of patients at this point to treat hemangiomas, but they have had impressive results with all of them. They have found that Propranolol, which I believe is typically prescribed for blood pressure, reduces the appearance of hemangiomas. He said even in the first couple weeks we will see a big difference in the color and intensity even. She would be on the medicine until at least 6 months, and possibly up to 12 months since hemangiomas typically can continue growth up to 12 months. We will see a cardiologist next Wed morning to determine if she is a good candidate for the medication...make sure she has no heart problems that would prevent her from being a good candidate. If she checks out fine, we will begin her on the medication very soon. She is opening that eye less and less now, so I'm very anxious to start the treatment in hopes that it will reduce the size quickly. She also has an MRI scheduled for next Friday to determine if the hemangioma on her head goes deep enough to be threatening to her brain. Of course, we are VERY hopeful that it will determine that there is NO threat there! Big prayers for those results!! Thankfully, we will find out that same day what the MRI says. Our pediatrician's office will call us that afternoon with the results. The treatment for the eye will also reduce the one on her head since it is an oral treatment rather than a local injection, so that is a benefit to the third option as well. It sounds like something that they have only recently used in the last couple years. The opthamologist has worked very closely with a pediatric dermatologist as well as the cardiologist on this treatment in past patients.

We felt good about all the information that he shared with us. I was so glad that he wasn't recommending surgery or laser removal. We are also going to start having chiropractic care for our entire family, and our chiropractor is very hesitant for Conley to be on any medication. It is so important for us to treat this soon so that her eyesight is not affected, since her eyes are being trained so much in these first few months. I'm not sure that the chiropractor is going to have a better alternative option for us, so I think we feel good about moving forward with this medication as treatment.

I'm so thankful that we are making progress with the doctors so quickly on her treatment. We are so anxious for her to be able to open that eye completely as soon as possible. Thank you all for your continued prayers for our precious Conley. We are so so so blessed with our girls!!

Prayers for sweet Conley!

Oh our poor sweet Conley, say prayers for her (and me!)! The "angel kisses" on her head and eye are actually hemangiomas that have started to raise up over the last week. They are much darker and larger than when she was first born. Since we saw Dr. Radimecky last week for their 2 week appointment, they have gotten worse, and the one in her eye started to concern me. Over the last few days, she is unable to completely open her eye. It looks so sad! I took her back in Wednesday for him to look at it again. He was immediately concerned. He said we need to have an opthamologist look at it to see about maybe even removing it, because if it blocks her pupil, it will affect her vision and probably cause her to have a lazy eye. He is also concerned about the one on her head and how deep it may go. We have an appointment with the opthamologist tomorrow at 7:30 am at Cook Children's in Hurst. They are also setting up a CT scan for the one on her head, and they will call me with that appointment time once that is setup. He said that the one on her eye would probably have to be removed with a laser since hemangiomas bleed so much. As much as I hate the way that they look on her sweet face and head, I wish that they were able to just be left alone. I feel bad that she might have to have them removed. I just hope that they can decide with confidence one way or the other, and if they do choose to remove them, I hope that they are very safe procedures. I also read that sometimes they shrink them using steroid injections. Of course, I want them to do whatever is necessary for her well-being in the long-term, but she is just so small right now. It's so sad and scary for me to think about her having to go through any of this, but it's also sad and scary to think about what it is doing to her eye. I'm thankful that we are having it looked at so early. I hope that we find out as much as possible tomorrow, and that with confidence they can decide on a plan of action that we can move forward with soon. I also pray that it is something that will be as least invasive for her and will have an easy recovery.

Here are pictures of her eye at 2 weeks and then again today at 3 weeks. This past week it has gotten so much worse, so quickly.

Beautiful girls at 2 weeks - eyes wide opened

Beautiful Conley at 2 weeks

Sweet, beautiful Conley at 3 weeks

Dear Lord, please protect our sweet and precious Conley Kate and give me strength to be the best Mommy for her right now and to do what is best for her. Thank you God for all of our beautiful girls!

Much too late update!

OK, so I clearly have got to be better about updating the blog! The problem is FACEBOOK!! I update Facebook all the time and forget that not everyone is on FB. Anyways, each day we are doing better on our new "routine"! I'm feeling better and better everyday! I'm still SO counting down the days where I can sleep longer. Right now the pediatrician still wants me setting an alarm to wake up for feedings every 3 hours (which is start of feeding to start of next feeding ... which means really about 1 1/2 hours - 2 hours of sleep in between feedings IF they go to sleep and stay asleep after each feeding) until they are probably about 2 months old. He wants them to be around 7 or 8 lbs before we let them sleep longer without eating. The girls were 3 weeks old yesterday! Only 3 more weeks until I'm officially "back to normal" ... LA Fitness, here I come!!

Campbell is still doing so well with her new sisters. She is VERY sweet with them always. Whenever she isn't sure which baby you are holding, she will ask, "what is that?", which really means "who is that?" She'll talk in a sweet high pitch voice and say, "Hi sweet gull [girl], what are you doing?" It's so cute! She'll also say, "Mommy! I've never seen this baby before! She is so cute!" She often says, "I love her" while touching their heads too. She really is very sweet with them. She does, however, still do a LOT to get attention. She has completely regressed on potty training. She still goes "tee-tee" on the potty just fine, but the other has become a problem ... a DAILY problem. It's so frustrating! I don't want us to punish her, but it's so frustrating since we know that she knows better. We are trying to use positive reinforcement as incentives, but it's not yet working. We have LOTS of goodies on display in the bathroom that she gets to pick from when she goes poo poo on the potty. She talks about them a lot as if she is ready to earn a prize, but then she inevitably has an accident that day. We ask her ALL the time if she wants to try to go, and she says, "not yet Mommy." She is also not listening very well. Everyone asks us how hard it is to have twins, but really they are a breeze ... ha ha! It's the almost 3 year old that is the handful right now!

Here are some pictures over the past couple weeks.

Our Family of FIVE!

OK, so we clearly didn't have a plan for September 30th :-) ... and we didn't communicate too well with all of our friends. Anyways, the girls decided to come last Wednesday ... they decided they wanted to be September babies instead of October! I went in for a sonogram and check-up. The girls looked great at the sonogram. Then we went to see Dr. Wood for my checkup. She decided to go ahead and check my cervix. I was dilated 4 cm!! She sent me back to the hospital to be monitored and rechecked 2 hours later. If I progressed past 4 cm, I would be admitted for delivery. She told me to go ahead and take out my Terbutaline pump, which wasn't planned to come out until Friday (2 days later). Sure enough, the terb pump was doing it's job, because as soon as it came out, the contractions started coming!! Two hours later I was dilated to 5 cm. I was admitted around 2:30. Cooper Marie was born first at 6:47 PM and Conley Kate was born second at 7:03 PM. Cooper weighed 4 lbs 13 oz at 17.5 inches and Conley weighed 5 lbs 4 oz at 17.5 inches. Cooper was a breeze ... delivered with only 2 1/2 pushes! Then we had to have a c-section to deliver Conley because she turned bottom down. Although we had prayed for Conley to turn head-down to avoid a c-section, God had a better plan for us. It was a blessing that she turned that way though, because her placenta had detached/abrupted 70%. Had we been able to deliver her vaginally, it could have cut off her oxygen and caused me to lose even more blood than I had. I ended up losing twice as much blood as a normal c-section already. All that to say, we are thankful that Conley turned the way that she did! Because of the large amount of blood loss, I was VERY "out of it" during the c-section as well as the next couple days to follow. During the c-section and in the recovery room immediately after, I could not keep my eyes open hardly at all. I barely remember talking to anyone. Hence the reason for little communication while we were in the hospital. It's all still a blur really! They monitored me to see if I would need a blood transfusion, but my counts showed that the transfusion was not necessary. I was throwing up all night after the delivery into the next morning, and I could not finish conversations without falling asleep even the day after the surgery. NOT FUN when you have two beautiful babies to start to bond with! I was hooked up to an oxygen monitor the night of my surgery, which went off every time I started to doze because my levels would drop. We couldn't sleep because of the alarm going off, so they put me on oxygen finally just so I could sleep. It was such a crazy blur of a night! We stayed until Sunday because it took me until then to feel well enough to go home.

Although the delivery and recovery for Mommy were tough, the girls have done GREAT from the start! They didn't have to spend even one minute in the NICU ... PRAISE GOD!! They have been breathing just fine on their own, nursing well from the start and are absolutely beautiful (if I do say so!). We have gone for two follow ups for their weight and jaundice. Both girls are already gaining weight since we left the hospital, which is great! Cooper's jaundice has already started to go down, and Conley's did plateau today but we'll go back tomorrow to see if it is starting to go down. They both have a little bit of dark hair and definitely are identical!! We are thankful that Conley has two "angel kisses" (or "stork bites) as they are called by the nurses so that we can tell them apart. Conley has one on her head and one in the corner of her right eye. They will go away eventually, but for now we are glad that they are there so Mommy and Daddy don't feel bad getting them mixed up!

It is so strange having such tiny little babies since Campbell was born almost twice their size! They are just so precious to hold and so so sweet already! We are loving every minute with them! It is so amazing to just watch them and think what miracles they are, all three of them....Campbell, Cooper and Conley! Our ONE embryo with Campbell that was our first miracle....and then our ONE embryo with Cooper and Conley that surprised us...God is SO good! To think that they doctors didn't think our second baby would make it. I look at both of them now and can't imagine either of them not being a part of our family.

Campbell is SO sweet and cute with them and is doing great! She really is loving being a big sister! She is definitely happy to have Mommy and Daddy home with her, since we were both at the hospital from delivery until Sunday. I'm so happy to be home with her finally too ... and on my feet (although it's still a recovery process)!

We are being so careful with them being so tiny and young right now with the flu going around, so we have decided to keep Campbell out of Mother's Day Out until I return to work. We don't want her bringing home anything, and if she were to get sick she couldn't be here in the house with them until she was better. We are avoiding large crowds indoors for the time being or having them around many kiddos. We still welcome visitors to come meet them! We are just being careful not to have little kids around them right now and to sanitize well. The Women's Center at HEB actually went on "lock-down" the weekend that I was discharged only allowing immediate family to visit mommies and babies because of the flu.

Although this has been a long few months for us, it of course is all so so so worth it now having the girls here with us and being able to bring them home from the hospital immediately. We can't thank you all enough for your prayers and support for the last few months!! We are so very blessed with such wonderful friends and family!

Conley

Cooper laying on Mommy

Cooper in pink and Conley in yellow

Cooper on left and Conley on right

Conley on left and Cooper on right