Posted (Tina) in All Posts on November-30-2007

Ella had a good day. There were no changes in her care. She is still on CPAP at 45% oxygen with a CPAP of 6.
There was peace of mind because Nurse Angie was watching Ella. Although the NICU was busy today, Nurse Angie is one of the best at taking care of Ella. More than anything, it is great because she is just so sweet and cares so much. You just feel it.
I was able to hold Ella for about 1.5 hours today which was nice. I have missed being able to hold her.
The rest of the time, Grandma and I took turns talking to her. We had a good time hanging out with the Bun.
I noticed last night that Ella seemed congested and it was not any better today. She will cough and it sounds like there are a lot of secretions in her airway. A few times today, she was clearly struggling to breathe. I can tell because she gets that frightened look on her face any time that her breathing becomes compromised.
I tried articulating my concerns to the nurse practitioner. However, I was told that this is a normal thing for Ella to experience based on her recent extubation. This may be correct, however it made me feel as if my input as Ella’s mom was completely discounted. All I know is that Ella has been extubated before and yet, I have never seen this type of cough.
More than anything, I wanted to feel heard and to know that since it was a concern of mine, they would watch it closely. It was really frustrating to feel like I was not being heard and that my opinions were completely discounted.
I asked the nurse practitioner about the plan for Ella over the coming days. I was never given a direct answer. Since we have been here so long and Ella’s case is not textbook, I am looking to chart her next milestone. This is important to me and I feel very frustrated that I cannot get a clear answer from the NICU staff.
At this point, Dr. Kays has started to step away from making decisions on her every day care, since most of the surgical work on her is complete. This leaves most of the day-to-day decisions to be made solely by the NICU staff. And it is tough when you a) don’t agree with the approach and/or b) can’t seem to get a direct answer.
Once the practitioner had left, I felt the rise of frustration make it to the surface and I broke out in tears. This experience is so tough and it makes all the difference in the world when you feel like your opinion matters, when you feel like they truly want to take the time to figure out what is best for Ella, when they make the extra effort to give Ella a core nurse assignment, etc. Since I have not felt the love the past 2 days in this regard, I think it just got the best of me and I needed a good cry.
Then, I went to leave the NICU and asked for a parking pass. They were not able to provide me with one.
It just felt like one of those days where every time I encountered anything to do with the NICU, it was disappointing to me.
Finally, we were given a visit by the social worker. She comes around periodically to check in on families. This time, she came to talk about the blog. Somehow, the staff at Shands heard about our blog and came with concerns over privacy. She wanted to know if we had received permission to discuss other babies on our blog, such as Par and Jonathan. I assured her that we had received verbal consent. And although we have received specific consent from these parents because we know them, she advised that it would be the best to only discuss Ella. I’ll be honest, I understood why they have to legally come tell me that information, but nonetheless, it was a bit discouraging (Par’s parents were approached too).
Since we have specific consent, here is the latest update. Par was moved to the NICU 2 today (such a blessing), so Ella will be missing him! We have not talked to Jasmine since Jonathan’s surgery. Unfortunately, Jonathan does not have a blog, so we will just need to ask that you continue to lift him up in prayer.
Once again, I am reminded that we came to Gainesville for Dr. Kays, not the NICU. And that I am so thankful for the other parents we have met on this journey as well as the dedicated nurses and other NICU staff that have come to know and love Ella. In the midst of all my frustrations over the past 4 months, those individuals are like a ray of sunlight.
Please continue to pray for sweet Ella’s recovery as well as strength for me and Josh. We need prayer for endurance. Also, we need strength to interact with the NICU staff in a godly way while still being Ella’s advocate.
Psalm 59:16
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.

Joel Snyder on December 1st, 2007 at 9:30 am #

Ella, I just woke up and decided to check on you. I am glad to hear that you had a good day. I hope you can continue progress forward today. I am also glad that your Grandma is there with you and your Mom. I am praying today that things will get better for you and your friends in NICU. T&J I am praying for you to get the information you need and want on Ella’s care. Please be patient and good things will come to you both. I want you to know that you are my brave and courageous warriors keep up the battle for Ella it will all work out. Love, Grandpa!!!!!!!!!

Fran Jarrett on December 1st, 2007 at 9:32 am #

Oh, Honey, I am so sorry that you had such a frustrating day. So often I have felt that I jsut want to be there to give you a hug as I know many of us do. I hope that your Mom is still with you right now.
Prayers for you and for Ella for strength and continued progress during this time of healing. The Lord IS with you always and will bring you through this tough time.

Tammy on December 1st, 2007 at 9:33 am #

Dear Tina,
I am writing specifically to you today because of my own experiences, not in a NICU unit, but in an ICU with my critically ill father. The medical situations are of course very different, but the family/parent emotions very similar. We found a very similar attitude as more time went by and the staff began to treat his care as a “daily routine”, and seemed to forget he was our father and our concerns, whether they mattered to others, were VERY real and of great concern to us. Each family member handled these feelings of frustration, not being heard etc in different ways, but I decided that I would be heard LOUD AND CLEAR even if it meant going to dept heads and administration. I also would talk at great length with the few nurses (such as nurse Angie) who had that “special” caring that others seemed to lack. There is nothing more difficult than to be in a situation where you feel like your talking to a wall, yet know your feelings are so valid. I just wanted you to know that your not alone in the way you feel. I will pray for strength and for your concerns to be heard and validated (as they indeed should be).
Take good care of yourself too.
God Bless

Tracy Mitchell on December 1st, 2007 at 9:47 am #

I am so sorry the last few days have been stressful. I know it is hard for your concerns to be pushed away, so don’t let them do that! Make sure your voice is heard. That is their job to let you as the parent know what is happening with your child. We continue to lift Ella, Par, Jonathan and families up in prayer.
“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Galations 6:9
Love from The Mitchell’s in TN

Kristen on December 1st, 2007 at 9:47 am #

Bless you for advocating for your child. That is a big part of being a mama! You are a wonderful one. As a Labor and Delivery RN, and a mama of 3 girls, I believe it is not too much to ask that your voice be heard, that you want the staff to recognize all you are going through, that your desire is for them to take care of your baby as you would if you were trained to do that same work. So I pray for your wisdom in approaching, them, and for their hearts to be open to listening to you. I understand how some things (routines) can become routine, however, each patient is precious and the care should relflect this even as they go through their protocols, etc. I will cover you in prayer in this specific area today. And another thing . . . . when a parents thinks things just don’t seem right with their child. . . they are almost always correct. So that intuition is a gift from the Lord, a way He provides for us to love and care for our children. Keep listening to that still small voice! I remember you feeling inadequate in one of your blogs, we’ll to be honest we are inadequate. However, the Lord promises “His strength is made perfect in our weakness.” And when you cooperate with the Holy Spirit this is how he works through you to provide His best for Ella! I am very proud of you! Blessings, Kristen

Gloria & Red Jacobsen on December 1st, 2007 at 10:28 am #

Dear Tina & Josh.We can only echo the messagess from other friends. I rememeber my doughter Beth,who was a very sick baby becaouse she had so many pneumonnias they thought she had cystic fibrosis ,has the first test for this came back postive. I felt deep in my heardt she did’nt have this,I had to go to the head of the hospital{ not easy to do with a County Hoapital,we had no money at the time} to insist the run another test and it came back Negative. Today Beth is strong & healthy,42 years old,rides horses and your Mom can tell you about her. Beth’s first 2 years were rough but after that she’s been in perfect health all her life. Praise God! I”am glad your speaking up for Ella, you are her voice. I am thankful you and Josh have such a strong faith to see you through the valleys that will lead to the mountain top! How wonderful you reach out, to the other parents going through the same struggles. You have our prayers and I am glad your Mom is there,because she she has lifted me up in the past when I was going through some tough times. She is a postive fun person and a dear friend,with a strong faith. So a special hello to Mary and love,and lots of prayers to all. Gloria & Red

The Laz Fam on December 1st, 2007 at 11:15 am #

Tina, I can only imagine your frustration. I remember how mad I was at the dentist when they wouldn’t let me sit with Julianna (she was 7) while she had a root canal done. And all of a sudden, we go from “Mother” to “Mother Bear”!
I praise God for everyone that He has put in your life through this ordeal — good and bad — because it was His choice. And I pray that every word you say to the staff, whether you are telling them “thank you”, or seeking to understand their plans for her care, they will see the same peace and joy in you. Joy in the Lord is your strength!
We love you all! ~ KTJB

Kara Snyder on December 1st, 2007 at 12:01 pm #

This is going to be great training for when she gets to school and you have to fight for her all the time there too. As a parent you just intrinsically know when your child needs something. It is beyond infuriating when the ‘experts’ won’t listen to you. I feel your frustration and give a big grrrrrr right with you. Glad you are giving it to God. He is so much better at handling people than we are. I’ll be praying that the staff is more sensitive to your needs as well as Ella’s. Hang in there momma, you’re doing great!

Avery Kronz on December 1st, 2007 at 1:21 pm #

I am glad that today was a good day. Rebecca Richards and I have been praying for Ella in our Sunday school. she is on our prayer list. With Love,Avery Kronz

The Lizotte Family on December 1st, 2007 at 2:41 pm #

I’m so proud of you Tina. It has to be a ton of weight on your shoulders and I don’t think Josh is back yet and that makes it harder on you not having the one person who feels things like you do. I can’t wait to see you again and give you a great big hug!!!

Back to the matter at hand… What’s the deal with the social worker talking about the hospital privacy rules, that sounds like something legal might address but I guess they wont because they wouldn’t waste their time because there is no merit for the hospital to be having that converstaion with you. Perhaps they would like to infrindge on your right to speak, and last I heard not even the federal government can control that. Oh and back to the social worker…. isn’t she there to talk with you about Ella and her progress and her family’s support network. Being away from home, moving accross the country and not having your friends and family around. GRRR. I’m still proud of the work the hospital has done with Ella and although I don’t have and degree in medicine i do understand the severity of her condition. I’m glad you were able to get her the care she needs to help her overcome this medical hurdle.
I will pray for Ella and for you and the staff to find the excitement needed to bring Ella’s life to the next step home.
Lots of Love

Jodi on December 1st, 2007 at 5:49 pm #

Hi Tina,

I’m so sorry to hear that you had such a frustrating day, particularly with regard to your input into Ella’s care.

My own little one spent a short time in the hospital at two weeks old, and we found that it was critically important to have one person making all the decisions regarding his care. Things always went downhill when the resident doctor or shift nurse decided to take matters into their own hands. So I have a suggestion — I obviously don’t know how everything works there, and I can only tell you what worked for us, so please take with a grain of salt.

Have you considered utilizing a single pediatrician? If Dr. Kays is stepping back, then you might do well to select another primary care doctor for Ella that can fill in the blanks Dr. Kays has left. That way the decisions regarding Ella’s care can be referred to one person that you trust instead of whoever happens to be on shift that night.

If a general pediatrician seems wrong, maybe a pediatric pulmonologist? Maybe Nurse Angie or another member of the “Dream Team” can give you suggestions on who to ask? And of course you will want to find someone who will listen to your concerns and address them promptly.

This is only the second time I’ve commented, but I check in on Ella and pray for her every day. Your page is bookmarked “our baby girl” so that’s how I’ve started to think of her. Her progress has been wonderful, and I’m amazed at how great you and Josh are at being parents in such a difficult situation.

Hang in there. You’re doing a great job!

Eli Brown on December 1st, 2007 at 6:13 pm #

Tina, sorry you had such a stressful day. I am sure you are growing weary of the hospital. With how well Ella has been progressing I pray that you will be headed home soon.

Char Snyder Jordan on December 1st, 2007 at 6:25 pm #

Nice to hear your mom is with you. It is like no other experience. We will pray for an attitude correction in the NICU. Perhaps you can speak with the nurse that attends to her needs so well. Perhaps she can shed light on things. There is no way you can withstand such stress for so long without tears. They are there to relieve pressure. We know you are doing a great job. LOL Char and JIM

Tiffani Grow--Salem's mom on December 1st, 2007 at 9:38 pm #

I just wanted to encourage you both. The way you are feeling is completely natural. Ella is your baby and nobody loves her like you so you are her best advocate. Speak up let your voice be heard you are ultimately in charge even though I know you don’t feel like it. You have that natural instinct and you should trust that. It’s best to be proactive and have a goal to work towards. You will get that milestone a bit more quicker. I pray for strength for you both and wisdom in speeding up Ellas recovery. God is so good and I pray he will give you both a huge breath of his love and strength to go the distance for your beautiful baby girl. Some day this whole experience will be only a memory. Can’t wait!!!! We feel your pain and we are praying with you, Tiffani

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