Friday, July 1, 2011

Thank Goodness It's Friday

I am so happy that it is Friday! This week has been particularly long and exhausting for us as we’ve hauled various kids around to doctors’ appointments this week.

Tuesday, I took Abby to her ophthalmologist appointment at Children’s Mercy Hospital South. We’ve been taking her every 2-3 weeks, so this was our 3rd appointment since she has come home. While all of the other kids have been cleared until their next eye check-up at age 3, Abby has had some issues getting her right eye to fully develop (her left eye is fine). We saw a new doctor this week as her old doctor moved away. I really like her new doctor since she explained everything to me about how her eye has progressed since she was born. The concern is that her retina may detach from her eye, but this last check-up showed that it looks like it is starting to get to point where we may be out of the woods! The doctor said that hopefully she will only have to go back one more time, and then they can discharge her officially until her next check-up at age 3!

Wednesday was an even longer day. I didn’t get much sleep the night before and we had a full day of appointments. I took Caleb to the cardiologist in the morning. Children’s Mercy South is getting used to seeing me walk through the door! Caleb has a small PDA opening left in his heart and he also has a hole between the top two chambers of his heart. Due to the hole, his blood flow is not as efficient as it should be. We were told that he would most likely need surgery to have it plugged next summer. However, after the cardiologist did a heart echo and examined him, he said that there is a chance that we can skip the surgery! He said that it isn’t an all or nothing kind of thing. If it’s small enough, he will be fine and they won’t have to make any interventions. He also told me that it won’t be a full on surgery if they have to do something for him. They can fix it with a simple same-day procedure where they use a heart catheter to quickly plug the hole. They would fix the PDA at the same time if they were in there for the other issue. Caleb’s next appointment is in 6 months where we are hoping to hear that he won’t have to have the procedure done at all!

In the meantime, while I was at the hospital with Caleb, I had three wonderful helpers at home who were feeding and getting the rest of the babies ready to head back to the NICU at Saint Luke’s for their Follow-Up. Sean worked a half day and met me and Caleb back at home where we loaded up the whole clan and hit the road. Their follow-up went really well! Elijah and Ellie were both taken off of their monitors, so we now have three babies who are free of cords! Abby got to start weaning off of her oxygen today, and we should be done with that process by Tuesday. She does have to stay on her monitor awhile longer to make sure that she fully tolerates losing her oxygen, but we don’t foresee any issues with that. Truth be told, she hasn’t really been using her oxygen much in the last three weeks. We certainly do our best to keep the cannula in her nose, but she is very good about pulling it right back out as soon as we turn around. Sneaky little thing! It’s so nice to have fewer cords around here! Our next follow-up will be in about 4 weeks when they will look at changing the type of formula that the kids are on. We are hoping to move them from Alimentum, which is a hypo-allergenic formula, to Neosure, which is a formula made specifically for preemies.

One of the highlights of our visit was getting to see some of the nurses who took care of our kids during their time in the hospital. We also got to see their primary neonatologist (high-risk preemie/sick baby doctor) who was the admitting doctor in the operating room when they were born. She was kind enough to risk her very nice outfit and let four babies with severe reflux sit on her lap for a picture!

Dr. FlorendoEllie, Elijah, Caleb, and Abby


 

The really fun thing about having Dr. Florendo as their primary doctor is that her husband, Dr. Gibbs, was the maternal-fetal perinatologist (high-risk obstetrician) who took care of me while I was pregnant. They make quite the team! We were really blessed to have two such fantastic doctors taking care of all of us!

Yesterday (Thursday) we took the boys back to the NICU for their 4 month shots. They had such bad reactions to their two month shots that we didn’t want to risk bringing them home right away. The NICU kept them under observation for about 24 hours and they came home early this morning. We are happy to report that no one turned blue or quit breathing this time! The worst thing that happened was that Caleb had a fever. That, I can deal with!

And with that, we have completed most of our initial doctors’ appointments for the babies. We, of course, have more follow up appointments in the future, but we won’t be as inundated from here on out. Each baby has their own particular issues. Caleb sees a cardiologist for his heart, Abby sees an ophthalmologist for her eyes, Elijah will have a repeat video swallow-gram study in a couple of months for his swallowing difficulties, and Ellie sees a dermatologist for her hemangioma. (Someone left a comment asking what the spot is on Ellie’s head. It’s a hemangioma or birthmark. It will get bigger until she is one or two years old and then will most likely completely disappear by the time she starts kindergarten. She is seeing a dermatologist to make sure that it doesn’t get so big that it starts to affect her left eye. If it looks like it is getting too big, there is a laser treatment that they can do to encourage it to shrink faster.)

Now, my week is finishing up well! Our pastor, Tom, is coming over to take the night shift with Sean and babies. I get to sleep ALL OF THE WAY THROUGH THE NIGHT!!! I’m so excited that I can hardly stand it! It’s been so long since I’ve had uninterrupted sleep. I’m taking Tylenol PM so that I don’t wake up automatically after 2 or 3 hours.

Everybody have a great night! I know that I will!! :-)

--posted by Becca

6 comments:

  1. Well, I'm so happy hear the positive news about Abby and Caleb. AND very happy to hear that you get to sleep through the night. I don't know how you've done it all this time. One night and I was exhausted. Ha! Sleep well. WTG Tom and Sean!

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  2. Amazing to hear how well all the babies are doing. They are all so precious! I will continue to pray for all of you. One of my cousins had a hemangioma also by her left eye--but hers was under her eye. She is a twin-and apparently it is common with babies who are part of a set of multiples--although I have known a few singletons who had one. It grew during her first year--and then it started to shrink (I am not sure if they did laser or medicine or if it went down on its own--this was several years ago.) She had what was left of it removed around age 3 or 4--She is 12 years old now and is doing great.

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  3. So exciting the way the Lord wrapping his arms around your children. Yay for for continued good news! My oldest daughter Ava (4) has a hemangioma right smack in the middle her eyes(like a Indian "dot"), we call it her dot. It showed up when she was about 2 months old and got slightly bigger and deeper in color(ended up about the size of a dime). It then slowly faded in color a little and then just remained. Our dermatologist (Dr. Nopper) at CMH told us that since it hasn't changed for a while that it would most likely remain the way it was. We opted to due a few rounds of laser surgery and have been quite pleased with the results. Ava has only have 1 treatment so far and her "dot" is barely noticeable. She will have 1 more treatment. She was such a big girl, she looked up at me afterwards and said "it's ok mom it was just a pinch". :) It's funny looking back on it, I was consistently asked what happened, or if she got a boo boo, I always replied, "nope that's Ava's dot that Jesus gave her". It became such a part of her that I would have to stop and look at her to figure out what people were referring too! :) Hope you have a restful night of sleep!

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  4. Sweet dreams Becca Rose!!!

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  5. Sharri Adkins ZahnterJuly 1, 2011 at 8:58 PM

    You & Sean certainly have your hands full but you seem to have it "all together " with such sweet babies. Most parents can't handle one as well as you handle four! I eagerly look forward to your updates and continue to pray for you each day! God bless u & SWEET DREAMS! Hugz! Sharri Adkins Zahnter

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  6. So glad things are going well. Losing the cords and monitors was such a happy day!! They are such a pain in the rear to deal with, but kind of reassuring at the sime time.

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