Posted (Tina) in All Posts on January-30-2008

Wow, today was rough.

Last night, we continued to notice that Ella was having a hard time breathing. We could tell because her saturations were in the low to mid 90s and her heart rate was between 155 and 180 while she was sleeping. When she left the NICU last week, her saturations were 100 and her resting heart rate was 115 and even lower. When you looked at her, you could see that her breathing was more labored. When we thought about it harder, it explained a lot of her fussy behavior the past 2 days. Something told us that things were not right and heading in a direction that could be bad.

At 6:30am, I decided to call the NICU and talk to Nurse Michelle. She agreed that didn’t sound right and offered to come by our house to take a look at Ella. Plus, it gave her an excuse to see her and give her a squeeze! Once she saw her in person, she agreed that this was not the same baby that we took home last week. By that time, we had increased her oxygen to 1 liter.

As soon as the office for the pediatrician opened, we were on the phone with Dr. Sarantos. She opted to call Dr.Kays to see what he wanted to do, especially because she is just getting to know Ella. Dr. Kays decided it would be best if we went to the ER and had him paged.

All was moving along fine in the ER. They placed us in a room, away from the public waiting area and we had a chest x-ray. Ella did not like it but we managed to get through it. Dr. Kays was also looking for her blood lab work. If you remember, she just had her blood drawn yesterday at Dr. Sarantos’s office, but somehow there was a miscommunication and he ordered another set from the ER. We were told that a NICU nurse would be coming to do the prick since Ella is a tough one.

A few minutes later, two ER nurses showed up to draw the blood. They told us that the NICU was contacted but there was not a nurse available (we later found out that wasn’t true). Josh decided to stay outside the door and make a couple of calls. I knew Ella would not do well, so I tried to warn the nurses. They began to look for an area to get the line in. Then, I realized that they wanted to do an IV line, which has always been a tremendous challenge on Ella. I warned them that she was in the ER for respiratory distress and was already on 1 liter, but they should increase her oxygen during this time because she will likely get air starved.

The next 10 minutes were the longest 10 minutes of my life. The nurses both blew me off and did not heed anything I told them. Once they started, they were not having success and with each further prick, Ella was getting more and more upset and not able to catch her breath. I was helping to console her and hold her down (she gets so mad that she will throw her arms and legs around).

When my daughter was a bluish/purple color for an extended amount of time, could not catch her breath and had that look of fear in her eyes, it was so tough for me. I continued to vocalize that she needed more oxygen support to help her and the nurses completely ignored my input. This was the most horrifying experience for me. When I looked down the next time, Ella’s mouth was full of blood. I had no idea where or how it got there. She was so mad and fighting me so hard. I was having to hold her down, keep the limited oxygen she had in her nose and try to keep her from inadvertently scratching herself. I started to cry and raised my voice louder to the nurses to let them know that we needed to take a quick break so Ella could catch her breath. It is not good for her to go extended periods of time with limited oxygen supply. They patronized me and told me that “all babies get upset”. I was in tears when Josh burst through the door and asked, “What is going on here?” He noted everything and immediately ran to the oxygen meter on the wall and turned it up (sometimes it’s easier to ask for forgiveness than permission), ran back out in the hallway and yelled out that we needed help in the form of blow-by oxygen. Thank the good Lord that Josh walked in when he did.

As the nurses were leaving the room, I had to tell them my thoughts. Through my tears, I thanked them for the job they perform each day, but told them that I was really offended that they did not listen to me. As much as I respect their experience and position, I know my daughter way better than they do and that they should have listened to me. I felt like they completely blew me off.

Once we were able to calm Ella down, which took a solid 15 minutes of 3 liters of oxygen via the nose cannula plus blow-by oxygen, we realized that she scratched her nose, ears and lips (this is why there was blood in her mouth). Later the same nurse walked in while we were still stabilizing Ella and went to turn down the oxygen. Josh told her firmly to not touch the oxygen. She started to explain and he simply asked her to leave.

To top it off, we found out later that Dr.Kays did not even order the IV; he just wanted the blood drawn. So, all of it was unnecessary. Those 10 minutes are forever etched on my memory. I have never experienced anything so horrific. My daughter was not just crying because she was mad; she was being air-starved and had a look of fear on her face. The blood in her mouth did not help, since I was not sure of the cause while the incident was occurring. It was just a scary moment for me.

Josh and I have experienced Ella being air-starved before, but it has always been within the controlled environment of the NICU. I thought that was bad enough to experience it in that setting because it is so hard on Ella. Today has to have topped it off as the hardest experience with Ella. I couldn’t help but cry hard. I love my baby girl so much and they literally just tortured her for an unnecessary reason.

Once they admitted us to the hospital, we ended up on the fourth floor in the pediatric floor. Between the ER and the pediatric unit, everyone that was seeing Ella had never seen her before. They were just taking in the information and could not provide any insight since they have never seen her before. I advised that they look up her history from the NICU, and they informed me that none of the computers are networked together. That was frustrating.

It felt like we went to a hospital in Denver or somewhere that they had never seen Ella. I know we will have to face that scenario some day, but we were just released last Friday, 5 days ago. It just seemed unreal.

Once we were settled in our room, it was tough to get some of the comforts that we were used to having for Ella, such as a positioning aid. We were getting the runaround. Josh got frustrated and decided to walk down to the NICU and get them himself.
When he laid eyes on familiar faces, especially Nurse Marla, he just started crying. Nurse Marla took the time to make sure that we had what we needed and walked back up to see Ella. She was the first visitor, although throughout the rest of the day and night, more and more NICU staff came to see the three of us. It was so comforting to see the people that care about Ella and also understand her history. The pediatrics nurse joked to us that if she charged admission, she would be rich.

Dr. Kays did stop by in the room to examine her. The first thing he did though was just walked in and gave us both hugs. I think that says it all.

Ella’s hands on assessment was good. Her lungs sounded clear. After 15 minutes, he came back and noted that her chest x-ray is one of the best he has seen. Her blood lab work came back and all her levels look great. They ordered an echocardiogram for the morning and they expect that it will be fine. At this point, they think it is simply a fluid issue again, so they have decided to increase her diuretic dose of Bumex, starting tomorrow at 8am.

We agree that it is likely fluid related because her face looked more puffy today than normal. Also, all last week in the NICU she was losing weight (likely getting off the excess fluid and going towards a true weight). As of today, she gained a good amount of weight. Yet, the only change that we made was the food – they switched her to 100% formula. They made this change late last week and did not really have a chance to monitor her adequately before discharge.

So here we are spending the night in chairs next to Ella’s bedside. There is no way that we would leave our girl here unattended. It is definitely not safe like the NICU.

We are hopeful that the echo will go well, we can grab our new diuretics prescription and that we can go home again.

As you might imagine, we were already exhausted with the everything going on the past few days. Today’s events just added to it and we are beyond exhaustion.

Our physical bodies may be depleted, but our spirits remain steadfast in our Lord.

All we know is that everything that happens is part of His plan, but sometimes the plan can be incredibly painful.

Please pray that all three of us would be refreshed tonight, and that we would be discharged from the hospital tomorrow.

Joel Snyder on January 31st, 2008 at 1:56 am #

Ella, I am so sorry that you had a bad experience today. I am equally sad that your Mom and Dad had to go through what has to be a terror filled time for them. I am praying that all will be well in the morning and you can go home. Josh and Tina please try to get some rest. I know you have to be running on empty physically and mentally. God please take care of my two heroes as they navigate the rough times with Ella’s care. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!!!!!

Julie Kirk -Saudi Arabia on January 31st, 2008 at 2:20 am #

I am so sorry to hear about the episode you all had to go through and for the uncalled for torture that Ella endured. I know it has been so exhasuting and will pray for your refreshment. Praise God for all of Ella’s good reports.
Sincerely, Julie

The Lizotte Family on January 31st, 2008 at 5:21 am #

What a terrible day. I’ll be praying extra for you today. I’ll ask for the lord to give you strength when you go to the hospital and hold tight to your dear Ella. It’s so hard to see your child in pain and the feeling of inadequateness just chokes you up.
Big HUGS to the toughest parents I know!!!

The Weir Family on January 31st, 2008 at 6:24 am #

What a difficult experience!! I can see why you would both feel so drained. I’m so thankful that God brought grace to the situation through Dr.Kays and the familiar faces of the nurses!
Lord, we trust you to continue to give Joshua and Tina an extra measure of strength to walk through this process. We thank you for Ella’s growing stability. We thank you for her growth and development. You have been so faithful! We believe that you will continue to provide for her every need. Thank you for giving her parents with such great wisdom, courage and endurance. We praise You!
We continue to pray for you as make the adjustment to full-time care of Ella. May God bless you with rest and refreshment over the coming days!

The Dirirm Family on January 31st, 2008 at 6:44 am #

What an awful day. You are wonderful parents speaking up for your little one. We will be praying for a quick discharge and rest for the both of you.
Love- The Dirrims

The Brittain Family on January 31st, 2008 at 7:05 am #

Sigh. It HAS been a tough week. Please know that we never grow tired of praying for Ella and all of you. And that’s just the teensiest fraction of the love that God our Father has for you! May you rest in Him. We trust Him to renew your strength. Keep up the good work.

Lisa (Ms. Texas) on January 31st, 2008 at 7:11 am #

West family! So sorry that the experience was so horrific! I am praying for peace and restoration to all!

JoAnna King and Kids on January 31st, 2008 at 7:30 am #

What an unbelievable experience! We are thankful that she is doing better now and hopeful that you will all be home in your own beds for an afternoon nap. Praying for all of you is a pleasure. Go and rest in the Father’s hands.

Nicole on January 31st, 2008 at 7:46 am #

I’m so very sad for all of you. What an awful experience. I’m glad it’s over and hope you get home soon. I think about you everyday and can’t wait till the day Ella and Bella can play together!

Hang in there.

Elizabeth Norman on January 31st, 2008 at 7:51 am #

Dear Tina and Josh,
Before doing my devotions this a.m. I wanted to check on you. Sitting here at the computer, with tears streaming down my face, I felt as though I was there with you, feeling your pain over the pain your precious baby was feeling. I know that our Saviour is watching over your precious family. I just pray this morning that His healing hands will be on Ella, with His arms wrapped around you both, and that you will soon be back in your Florida home.

Lisa Richmond on January 31st, 2008 at 8:28 am #

OHHH, my heart is so heavy. I’m so sorry you had to go through that. It is so painful to see your baby in such a scared state. I’m so sorry. BUT, He is with you and you all are survivors, and this too, shall pass, and soon you’ll be back with you’re cute little bun, laughing at her cute little smiles!!!! I hope you get some rest today. 🙂

Laura The Net church TN on January 31st, 2008 at 8:35 am #

Tina and Josh I am so sorry that you had a night like that . I just wanted you to know that when you are weak he is strong. God is a good God and sometime we don’t understand what or why but we do know that our Faith in God changes people lives that we may never know . You both have changed our lives the day I met you in the hospital when we were there in with Tracey over the summer. Ella has become the spot light for our family we have 5 kids and the all pray and know that with God all we know to do is to Trust God with all our heart and not worry about our understanding . To have Faith that moves and to know that God is running the race with us beside us the race that is set for us.Be Blessed , Love In Christ,Charles,Laura ,Nik, Peyton,Moriah, Sam and Anna Grace (The Leatherwood family )

Charlotte Rehrig on January 31st, 2008 at 8:35 am #


Steven and Terri Trainer on January 31st, 2008 at 8:36 am #

Guys, you are amazing! Even with all of this going on, you still make time to post. Thank you, thank you for making time to share your hurts and fears. My heart aches for all 3 of you. Know that you are loved and in my prayers daily.

John & Estela Williams on January 31st, 2008 at 8:49 am #

God bless you Tina and Josh…. I continue to tell everyone your story and always tell them that Ella is so blessed to have parents that are there to FIGHT and PROTECT her… Love you guys!

Rusty on January 31st, 2008 at 9:17 am #

I am glad you guys were able to keep a positive attitude about the whole car thing the other day. . . I’m not sure I would’ve been so “cool”, but I’m glad you could see the silver lining and use it as a tool to minister to others.

As for Miss Ella’s most recent episode, I hope she’ll be able to bounce back very quickly and that you’ll be back at home really soon. I can’t imagine how frustrating it must be to not only be back in the hospital, but also to be back at square one as it relates to dealing with the nurses, them getting to know Ella, etc. I pray that God will give you LOTS of patience and bathe you in His peace.

We love and miss you guys!!

Fran Jarrett on January 31st, 2008 at 9:29 am #

Josh and Tina how horrible for you and Ella to go through.So glad that you know what is right for your darling one and are able to stand up for her and her needs. You continue to be amazing in your strength.
Prayers ever continue for you, Josh, and Baby Ella.

Tammy on January 31st, 2008 at 10:04 am #

Dear Josh and Tina,
I’m so sorry to hear about this experience. It is terrifying, and puts you in a position of knowing you need more help, then trying to find it. While in the meantime, you are having to actually step up and use what you’ve learned to help your child, inspite of what the medical staff believes to be correct for her! But you did what a lot of people are afraid to do…….stand your ground, listen to your instinct and act accordingly!!
Oh my but did this take me back to our families hospital experience with my father and unbelievable interactions with nurses that often left me raging! We learned quickly that we were his only advocate, stayed with him around the clock, and spoke up without hesitation. The clinical skills are often excellent, but communication skills are often sadly lacking. The other piece of interesting information we learned was that, as a family, we had the right to refuse the care of nurses whom we felt were either ignoring his needs, or just simply not qualified to care for his critical issues. You would not think that a nurse in the ICU was unqualified (after all, isn’t it the hospital who hires them, checks education and experience)? But we found out very quickly that many of the nurses were far from qualified, or simply had become so hardened by the harsh/difficult working environment that they simply had lost that special “touch”.
I will pray that the two nurses who failed to act appropriately and be empathetic to the needs of a very frightened baby and parents, will grow in their experience and open their eyes, ears and above all their hearts so that an already difficult situation is not made worse by unneccsary behaviors.

God Bless!!

Your friends at Dr Richard Wallace's office on January 31st, 2008 at 10:06 am #

Dear Josh and Tina,
It is hard to believe that things could get worse for you all. We are thankful that this episode is over. Ella is so lucky to have you both to advocate for her. Unfortunately, this is so necessary in today’s world. God bless you both and your precious bun :0)

The Laz Fam on January 31st, 2008 at 10:07 am #

Many times when I read your posts, I am reminded of how I felt as a new mother, times of fear, pain or joy, though I would not presume to minimize this journey for you by comparing it. But today, as I read this, I thought instead of Jesus’ mother, on the day her Son was crucified. Tortured, by men because they wouldn’t listen to the Truth. It is a sweet reminder to me that God *always* knows your pain, because He has felt it too.
Praise Him for your courage, and for your honesty with all of us who love you so much.
Blessings ~ KTJB

jordan on January 31st, 2008 at 10:18 am #

ugh! I feel so sorry for you guys – there is nothing worse than getting inadequate medical care from an inattentive staff. I admire your abitily to still thank them! I am not so sure I could have been so nice to a staff that would do that to my baby.

Heidi Ham on January 31st, 2008 at 10:25 am #

Wow! I can’t express how much I was moved just reading the blog – I gasped outload and my co-worker asked…. so of course I had to share. My heart goes out to all of you and prayers for the tests to all come out good and that you will be going home on Thursday. I pray that Ella will never have to go through something like this again and that her new doctor will quickly learn about her history so that you have that avenue as well. Tina you are so strong – Josh way to go! Paul would have done the same thing. God Bless you all.

Chambers Family on January 31st, 2008 at 10:25 am #

A Painful Blog. We can’t imagine going through that at a hospital of all places. They need to cross train those ER nurses with the NICU nurses there!!!!
Thank you for sharing your hearts. So glad that you have each other right now. I believe that Ella will never have a nurse do that to her again! I hope you can go home and rest soon. God speed.

Kara on January 31st, 2008 at 12:04 pm #

Sometimes it is so painful to be a parent. And the “professionals” can really make it hard on you. I’m proud of you two for standing up for her. You will have to fight for her for the rest of her life. As parents we all do. I just wish your fight was such a dire one. You know, as a parent you just know in your bones what your child’s needs are. Wish I could be there to give you a big hug right now. But I can’t so I’ll have God send one to you and a few extra angels to stand guard also. Love you guys a lot!

Char and Jim Jordan on January 31st, 2008 at 12:09 pm #

I am having a hard time choking back the tears of anger and resentment. Ella deserved better care. I know how you feel Tina. I had some close calls with Marc too. You and Josh must be Ella’s advocate. Even when well-meaning professionals think they know it all. I am so glad Josh went into FATHER mode. I am so sorry that you had to experience these people. Perhaps Ella’s records should be in a file that you carry-hard copy and perhaps CD. She is special, you know, even for a CDH baby. The most frustrating part is not being listened to. OH THAT IS aggravating. I am so sorry. You will not let that happen again. Keep her records and be assertive. You and Josh did great. As for me they would be putting me in jail for battery by now. We send our love. Please get rest. LOL Char

Julie's friend Motormouth on January 31st, 2008 at 1:04 pm #

I would follow up with Dr. Kays as to why the nurses thought they should be placing an IV, and why they lied about the NICU nurse unavailability. So terribly sorry for the trauma you all experienced. Being a squeaky wheel should help to ensure you are treated better should you need to go to the ER again. And God bless your NICU nurses! I love them and I don’t even know them.

Tracy Schultz on January 31st, 2008 at 1:10 pm #

My heart is racing because of your experience. I can’t think of anything more terrifying.
Praying that you will find the right combination of treatments to solve these issues-and never have to go to that ER again.

Williamsburg on January 31st, 2008 at 1:37 pm #

Our hearts are breaking for you guys in the midst of all the pain, stress, exhaustion and fear – we _so_ wish we could be there to just hold you, but we’ll send it electronically as always and pray you feel our love and His across the miles in addition to the love of everyone else whom you’ve touched and who holds you dear. We love you so much, dear ones. In Him; XOXOXOXOXOXOXOXOXOXOXOXOXOXO

Kelli Billman on January 31st, 2008 at 2:37 pm #

In all your exhaustion you still find the energy to keep us informed, God Bless you for that.

Lizotte Family on January 31st, 2008 at 3:10 pm #

I keep checking on the site for updates, but I meant to add earlier…. You Go JOSH!!! Who says white men can’t jump! Daddy to the rescue. And very protective of her little one too. I LOVE IT!!!

tamara tessmer on January 31st, 2008 at 7:17 pm #

I read your post this morning and I had to get up from the computer and walk away. I was very angry!!! But God has worked on me all day and I am feeling a little better now. I just wanted to say that you are in my thoughts and my prayers. Thank the Lord that Josh came in when he did. I think the entire event should be addressed with someone. I don’t want to get into it too much, but your experiance was all to familiar to me. I think that is why I was so enraged. This is a childs life and you are her parents. Your voice should ALWAYS be heard. Anyway I love you guys and I pray that Ella gets out of there soon.


Laura Marold on January 31st, 2008 at 8:26 pm #

This is so difficult for you-so completely stressful. Is there ever a real reason we go through these types of experiences? How awful! Love, Laura M.

Dawn ( Tamara's friend) on January 31st, 2008 at 8:33 pm #

Hi Josh and Tina, I just wanted to add a note to say I am sorry you went through this. You guys are loved and covered in prayer! When there are really no words of comfort…I pray you will feel our prayers. We are ALL in this with you!!!

The Rainey Family on January 31st, 2008 at 9:28 pm #

Oh my. I am so sorry you guys had such a horrible experience. I can’t even imagine how scary that would be. I hope that the rest of the hospital stay is much better, and that you get to go home again very soon! Praying for you all, and especially precious little Ella.

Dawn Franck on February 1st, 2008 at 8:57 am #

Tina and Josh, I can’t imagine how difficult that must have been for both of you! I am so sorry that you had to go through all of that. Thankfully Ella’s test results seem good so far. Take care of yourselves. All my love Dawn

Matt and Abby Searles on February 1st, 2008 at 3:47 pm #

Wow I don’t really know the right words to say. Our hearts just break for you both. However we can relate to you when Caed was put back in the hospital we had a very similar experience.The NICU team is unreal and we are blessed we had them. The nurses there really are about there patients. Can’t say the same for the PED floor though. We will continue to pray for you. You are heavy on hearts and minds…Much Love Matt and Abby

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