Today was filled with lots of tests, retests and new revelations. Our poor little girl had a very rough day today. It started at 10am when they took her down to do her fistulagram. Machel and I walked down with Bella the whole thing only took 30 minutes. The Fistulagram is pretty non invasive; they put a dye into her body to track it and make sure that there is no blockage in her intestine before the surgery. She was just fine afterward. She was awake and mommy and daddy talked to her and held her, then mommy tried to breastfeed her. This is a great thing because Bella is learning to breastfeed, so she normally tries for a few minutes, then falls asleep in mommy's arms. But everytime she does, she gets some extra breastmilk. (They still give her the full feed after she tries to breastfeed.) So we like to try this because she needs all of the weight and breastmilk she can get before the surgery (by the way she is up to 2030grams or 4lb 8oz). Then after lunch came one of the most difficult things I've ever seen. Bella had her eye exam and it is not pretty at all. She screamed and cried and screamed some more. They tell you not to look at the eye exam and Machel has described it, but I wanted to see what they were doing to her. I felt so bad for my little girl and she was so unhappy after the hour long exam. I don't want to describe it in too much detail, but it was not pretty and all I could do was hug my baby girl when it was all done. Her eyes were so puffy and all she wanted was to be fed and left alone. Unfortunately, the Dr. came and spoke to us after the eye exam and he said that her left eye had gotten worse and that it required surgery, but it was borderline, so he wanted a second opinion. That meant that she would have another eye exam. I felt so terrible for Bella. The second hour long eye exam confirmed that she needs surgery to her left eye and the Dr. wants to do the same procedure in the right eye, even though it is a little better. It's not a true surgery, it is a laser surgery and she will be sedated but it is a pretty non invasive procedure that is done in the NICU at her bedside. So after spending all day with her we finally left for the evening. Bella was exhausted and zonked when we left.
I am going to vent for a second now.....When we returned at 10pm we were greeted by nurse sourpuss. She wanted to know why we were looking at her chart (we were checking her temp, since she had been out for the eye exams and is no longer in the isolette). Then I went over to give her kisses and noticed she had some crusties on her mouth, so I looked in her drawer for a mouth wipe. The nurse (who we have never seen before in the 3 months we have been there) says what are doing? She has had a very hard day she needs her rest. Machel looked at her and said thanks, we were here at her side all day long, we know what kind of day she had. I was so pissed, I understand you are caring for my child, but there is no need to take that approach with us. Furthermore, if she would have bothered to read the chart she would have seen we were with her all day and performed her care for most of the day with Carol her day nurse. It was all in the chart we weren't supposed to be reading. Then Janet, an RT and one of the nicest ladies ever, stops by to see Bella. We talked and she told a funny story about her grandkids and we all laughed. Right after that nurse sourpuss was nice to us and her whole attitude and demeanor changed. Apparently since Janet talked to us it was alright to be cordial with us. As you can tell I am still not happy with her. 99% of the nurses have been amazing and are truly unbelievable people. But occasionally there have been nurses who forget their bedside manner and need to have a better approach to the parents of these babies. They aren't bad nurses, they just need to work on their people skills a little more.
All in all it was a stressful day filled with lots of tests. Bella will have her reattachment surgery on Thursday, but they don't have a time yet. She will have her Laser eye procedure tomorrow at 3pm. I hope these are the last two surgeries that she will ever need and that the Lord helps her through these next few difficult days so that she can finally be released and come home to TEXAS!!
Proverbs 3:5-6
Trust in the Lord, with all your heart. Never rely on what you think you know. Remember the Lord in everything you do, and He will show you the way.
Peace and God Bless!
8 comments:
So sorry guys. . .I'm thinking about you. I was never at Olivia's bedside during one of her ROP exams (probably for the best) but I know how traumatic they were for her. To this day, she is terrified of the eye doctor and it breaks my heart each and every time she has to go. Having her eyes dilated is like putting my child through pure torture. She would rather have shots than an eye exam.
Also, wanted to say that we had one of "those" nurses as well. Like you, 99.9% of them were fantastic, but towards the end of our NICU journey we had to request to never have a certain nurse again. We felt awful because we are pretty easy to get along with. It was really probably a personality conflict, but after hearing her tell another nurse that she only keeps her job for the insurance benefits and the fact that she kept calling Olivia a "he" really set us off. We had requested no cuddlers after finding out some stranger came in and held Olivia (I'm sorry. .we held her every day and there are other babies in need of cuddles) this nurse acted like we were depriving our daughter of something. Ryan would have been really upset if some nurse told him that he couldn't read Olivia's chart. He read it every day and understood it as well as the nurses. Okay, I'm rambling. Anyway, we will be praying and praying for you and your sweet girl. (HUGS)
Hi guys! I just got a little irritated for you. All I can say is NURSE MANAGER! As you said, 99% of the nurses are fantastic and couldn't be better if you hand-picked them yourselves. Do not be afraid to speak up and voice your opinion. If you did not like the nurse tell the nurse manager and have her removed from Bella's care. You are correct in that your visits and involvement should be documented in the charts and they are YOUR charts to look at! Stick to your guns. You spend so much time with Bella and know her well and would not intentionally do anything you felt was too much for her. I had a hard time voicing my displeasure, but there are times you can't help it. Overall, the NICU team should be very receptive to any thing you have to say - especially knowing that you guys are such loving parents and are not people who complain about every little thing.
All NICU parents know well how tough it is to watch your little guys go through the testing and procedures. We would all do it in their place if we were able! You guys are doing an amazing job, hang in there! It does get better!! :o)
WOW~! 4lbs. 8 oz...that is AMAZING! I wanted to cry just listening to you tell about her eye exams..poor baby :) Thinking about you guys and praying for you, always!
I told you NOT to look at the eye exam! It's horrible! Oh you poor guys watching that! and poor Bella! Those exams are horrible and to have 2 in the same day, the poor girl! We are still praying for her daily and for Mommy and Daddy too! Stay strong and we are here if you need us.
Mere, Parker & Family
Oh and I agree with Candice...voice your displeasure. You are the parents and YOU are a part of her team...speak up! NICU nurses are for the most part are the most amazing and caring people, but sometimes you find one that isn't used to "involved" parents and want things done their own way, but you are the parents and ultimitally have the final say in her care! I got angry with you too!
Oh man, I can understand your frustrations. I pray for that nurse to take care of cutie pie as well as all of the rest. I hope that ya'll can somehow get pasted her rudeness. You all are almost there - Miss Chunky Monkey will be in TEXAS soon! Many prayers and kisses her way!!!
Kim
Hi this is Amanda, my son Morgan is also in the UVA NICU, I was in the support group this afternoon. I just wanted to say Hi and little Bella is so adorable! It looks like overall she is doing very well. I think that to myself a lot and thank God that overall Morgan is doing well and things could be a lot worse. Morgan's blog is http://babymorgansblog.blogspot.com/.
if you are interested. See you around the NICU!
Ahhh, I have been so busy with work that I haven't had a chance to read your blog the last few days. All I can say is...much love and many, many prayers!
Cynthia
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