The Robbs

2007-04-28 11:41 AM
Caleb had his first Kindergarden program. You can see video of him at http://www.robbfamily.org/video/

2007-04-28 09:22 AM
Ella came home Thursday evening.  It is good to see her finally unhooked from all of the hospital monitors, etc.  Caleb and Chloe are so glad to have her back with us.   Ella seems happy to be home, too.  We are learning the new routines for her tube feedings, medicines, etc.  We hope that one day in the not too distant future, Ella will be able to take her feedings by mouth again.  Love, The Robbs 

2007-04-24 9:10 PM

It has been a week since Ella's surgery.  She seems to be healing well according to the doctors and she is now off of the ACTH injections which we hope will be a tremendous blessing.  They have started feeding her over the last 24 hours through her g tube and she seems to be tolerating that well.  She has had some problems over the last 24 hours with a rapid heart rate (200-210) and a temperature today.  After checking her heart twice (echocardiograms), the belief was that these problems may be due to the hormone replacement therapy for her thyroid being at too high a dose.  They stopped the medicine this evening and expect to see her return to a normal rate and body temperature over the next 24 hours.  We are hoping that she will get to come home on Thursday. 

2007-04-17 9:24 PM
Tuesday, April 17, 2007    Ella did have her surgery today.  It took approximately 3-4 hours in surgery.  We were allowed to be with her in the recovery room around 6:30 this evening.  The surgeon said everything went well.  They fixed the malrotation of her bowel, had to removed her appendix and approx. 10 percent of her intestines.  They also put in the g tube for feeding.  It is our hope and prayer that this surgery will help to both lengthen Ella's life and greatly improve the quality of it.  Thank you to everyone has lifted Ella and our family up in prayer.  So many of you have spent time holding her, watching her, loving on her and praying for her.  May God bless each of you abundantly for these precious gifts.  Love, Jim, Sheila, Caleb, Chloe and Ella

2007-04-13 09:02 AM
Evidently last night Vanderbilt had an unusual amount of emergency surgeries and that put them behind so Ella's surgery has been postponed. I was told they would try to get it scheduled for Mon or Tue.

2007-04-12 3:55 PM
Ella is having surgery tomorrow around 8:45 am. They are going to try to fix the malrotation of her bowel and insert the G tube. It's about a 3 1/2 hour procedure. Hopefully all will go well.

2007-04-10 1:01 PM
We've received the results of a test to determin the sevarity of reflux and an upper GI. It looks like Ella has abnormally rotated intestines. They think, and hope, that is causing a good portion of Ella's obvious discomfort. The good news is that it's not all that uncommon and is relatively easy to fix. So they are going to do surgery to fix that as well as the feeding tube. Which will now be the one that goes into her stomach, as opposed to the one that goes into her intestines. That's a good thing.

We're still waiting on the results from the eeg.

2007-04-08 1:01 PM
Ella is currently at Vanderbilt Children's Hospital. She has been there since the evening of April 3. Basically she just seemed off for 24 hours or so before that. Sheila took her to the Pediatrition and she wanted to get Ella in for some tests.

They've done blood tests, which they have a real hard time getting blood from Ella for some reason, and have found hormonal deficiencies. Basically pituitary and thyroid problems. The good news is that all of the hormonal problems can be remidied with hormone replacement which is relatively easy. Just medicine.

They've also done a 24 hour eeg. We haven't yet heard the results from that.

They wanted to do an MRI but were waiting just a bit because Ella's breathing seemed a little weak. They think it's because of her feeding issues. So they inserted an Nasogastric feeding tube. This will keep any fluid from entering her lungs. While that helps she's started having increased reflux which also seems to be going into her lungs. So they are going to do another test to confirm that she is taking fluid into her lungs from reflux and then, assuming it's true, they will surgically insert a Jejunostomy feeding tube. Which is a feeding tube that goes through the abdomen directly into the intestines. Bypassing the stomach all together. Which will eliminate reflux. They will also do a surgical procedure with Ella's stomach to help prevent reflux in the future.

2007-02-10 12:49 AM
We talked with the neurologist on Friday and she said that Ella's eeg looked normal. Which is good. This basically means we've caught the seizures early. So we'll shortly begin the ACTH treatments and hope that that will stop the seizures. I think if all goes well the treatments should last around 6 weeks. Baiscally the treatments will begin at a high dose and then slowly be reduced. Assuming no seizures return the reduction continues until she's no longer taking it. If the seizures do return they'll go back to the high dose and start over. 

2007-02-07 2:06 PM

We are struggling today.  Although we heard back from another one of Ella's blood tests and the results were normal (the one for chromosomal abnormalities), Ella is now having seizures (they think infantile spasms), a few times a day.  We saw the neurologist yesterday and Ella is scheduled for an EEG on Friday morning.  If the diagnosis is confirmed by the EEG, we will begin giving Ella injections of ACTH daily to stop the seizures.  There are many possible negative implications to these seizures and serious side effects of ACTH.  This is all too much for Jim and to think about now.  We ask you to pray with us for these to stop immediately and not return, for Ella's healing and peace for our family.

2007-01-12 2:39 PM
Today was Ella's 2 month well baby visit to the pediatrician.  According to Dr. Hawkins, Ella is doing everything developmentally appropriate for her age (tracking objects with her eyes, turning toward sounds, holding her head up for a few seconds without support, cooing, rolling onto her side, etc.).  We are so thankful to God for her continued progress.  Thank each of you for your continued prayers to Him on her behalf. 

2007-01-10 11:25 AM
Ella is almost 2 months old.  She seems to be growing and doing new things every day or two.  Yesterday, we took her to Vanderbilt Children's Hospital for her appointment with the Geneticist, Dr. Freedenburg.  This appointment was a mostly frustrating, but with a bit of good news.  Dr. Freedenburg said that her reflexes all seemed normal at this point, which was good.  She noted some physical characteristics as possible areas of concern, her ears being one.  They want to schedule Ella for an MRI (under sedation) and an ultrasound of her kidneys.  Additionally, they wanted 4 viles of blood from her to run all of the tests (metabolic, etc.), but were unable to draw enough blood to send off even one vile for testing.  So, they want us to come back so they can try this again.  This was very unpleasant for Ella and us, since they were trying to draw the blood from her little arms which seemed very painful for her.  Ella's two month well visit is Friday and Dr. Hawkins will check to see how she is coming developmentally.  We are praying for normal results on this visit.  We thank God each day that Ella is doing well for that day and that He has or is healing her.

2007-01-01 1:48 PM
Ella is about 2 1/2 months old now.  She has started smiling and cooing lately.  It is so good to see her smile.  I took her to Vanderbilt again Monday to have a renal ultrasound and bloodwork drawn again for several tests.  This time they were successful at getting her blood for all of the tests.  One of the genetic counselors contacted me Thursday and said the results from the ultrasound on Ella's kidneys was normal (praise to God!).  She also said that the metabolic screening on her urine came back in the normal range (another praise!).  We are now awaiting the results of three more blood tests (screening for other metabolic deficiences and chromosomal abnormalities).  It is our hope and prayer that these would all come back normal and that Ella be completely healed.  Thank you for your continued prayers for her and our family.  May God bless each of you for the love, kindness and compassion you have shown for our little girl and our family.   Sheila 

2006-12-24 3:47 PM
Ella is  6 weeks old today.  She seems to be eating and sleeping well.  She is still having some mild problems with some of her feedings, but on the whole she seems to have improved greatly since her stay in the hospital.  Tomorrow will be her first Christmas.  We continue to pray that her development each day will be healthy and normal and that she will soon be completely free from any problems with her feedings.  From our family to each of you, we offer our deepest thanks for your prayers, love and encouragement. 

2006-12-19 5:55 PM
Today Ella had her 5 week check with our pediatrician.  She has gained 11 ounces this week and now weighs a little over 8 pounds.  Our pediatrician said everything looks good today.  She had Ella's appointment at Vanderbilt (Genetics) moved from February to January 9th.  Please keep Ella and this appointment in your prayers for normal results to all of the tests (chromosomes, etc.). 

2006-12-17 1:32 PM
Ella is almost 5 weeks old now.  It seems she is starting to adjust to the "night is for sleeping" rule.  She seems to be doing much better with her feedings.  She is eating more and having far fewer problems.  We have a 5 week check with our pediatrician on Tuesday.  We are praying that everything continues to show normal development at each visit.  Thank you for your continued prayers for her. 

2006-12-13 09:56 AM
Ella had her first appointment with her pediatrition yesterday. The doctor said she thought Ella looked great. She was very encouraged to see how Ella is doing. She is still gaining weight and the doctor didn't see anything that gave her any concern. So that made yesterday a good day.

2006-12-11 00:10 AM
I received a few comments on how helpful the web site was and since I already had half of it built I thought I would set something up that would allow other people to do the same. Hopefully no one will ever need it, but, I set up a site www.icudiary.com. It let's you post updates and pictures like we've been doing here. There's a support group at the Hospital we were at that provides services for families in the ICU that I'm going to contact about it. If you know anyone that could use it feel free.

2006-12-10 11:35 PM
Hey all. Ella seems to be doing great. She hasn't seemed to have any major spells since we've been home. She eats very well. She's definately the quitest of our three, at this age as well as currently. Caleb and Chloe are very excited to have "their baby" home.

We've got an appointment on February 14 at Vanderbilt Hospital because they want to run some tests. She'll also have regular appointments, every couple of months, to track her development.

2006-12-07 2:35 PM
Baby Ella got to come home today. We all made it here about 2:00. Yes we do have a monitor. Which makes things much easier. We spent the night at the hospital. It's amazing the creative ways they come up with to make hospital furniture able to be slept on yet still extremely uncomfortable. We all made it and are happy to be home.

2006-12-05 5:43 PM
It has been 4 days since Ella last had an apnea spell during her sleep.  If she goes tonight without having one, Jim and I will be "rooming in" at the hospital tomorrow night and part of Thursday so that we can bring her home Thursday aftternoon.  They are sending us home with a monitor for Ella.  It will be good to have our whole family in one place.  Since she still has spells almost every time she eats, I am extremely scared for her.  We ask for your continued prayers for her complete healing and most pressing at this time is an end to the apnea spells.  Please also pray for peace for our family and that we can all learn to enjoy each moment we have together. 

2006-12-04 3:10 PM
Took some pictures on Sunday of Ella. You can see them at http://www.robbfamily.org/gallery.

2006-12-03 09:51 AM
I had to make a couple of technical changes to the web site so things were down yesterday. I think everything is back going now.

2006-12-02 11:59 AM
Today, Ella seemed to pace herself better during her feeding.  Dr. Hassell came by to talk with me and said that she was pleased with the progress Ella had made in the last 36 hours with her feedings.  She said that we would definitely go home with a monitor for Ella.  We also discussed moving Ella to Williamson Medical Center, a hospital only 10 minutes from us, after the weekend.  This hospital has the same group of neonatologists that take care of the babies at Centennial, so there would be consistency in her care and her doctors.  We appreciate all of the prayers.  Please keep praying that her feeding problems will stop and that God will heal anything else that may be wrong with her little body.  Thank you all.

2006-12-01 2:05 PM
Today was a hard day.  When I arrived, I found out that Ella had another apnea spell during her sleep sometime last night.  Also, another speech therapist worked with me and Ella on how to best feed her and to stimulate both her right and left hemispheres before feedings.  Dr. Karma said that due to her spell during sleep, the five day waiting period would have to start over.  He also said that he was going to refer us to a genetics doctor at Vanderbilt to evaluate her, in addition to the neurologist.  He said this is because her ears are set a bit lower than normal.  It is difficult to hear all of the possible problems for Ella each day and so we are trying to think of just today.  Please keep praying for her and for her healing. 

2006-11-30 5:44 PM

Today Ella was about the same with her feedings.  She did well nursing, with only 1 dip in her stats., but did about the same with her bottle feeding, having a few downs with each bottle feeding.  Another speech therapist is coming to work with her in the morning.  The doctor that is working in the NICU this week seems to think he may try to send Ella home in a few days, if she does not have any more spells while she is sleeping.  However, since she is still having spells during each feeding, we are very concerned especially given that he said they will likely send her home without a monitor.  Please keep praying for these spells to completely stop and Ella to come home to us. 

2006-11-29 6:21 PM

Today Ella seemed to do much better with her feeding.  We met with the speech therapist and lactation consultant again during her feeding.  The speech therapist told me that Ella paced herself much better today than yesterday, especially when she was nursing vs. bottle feeding.  She did not have any spells while I was with her.  Also, I just called to check with her nurse who told me that she did very well during her last bottle feeding (no significant spells or drops in her heart rate).  This is enough to make my day.  Ella's nurse also told me that Dr. Karma (one of the NICU doctors) ordered a check on her hematocrit for tomorrow.  They think that the sudden apnea spell yesterday during her sleep may have been caused by the iron level in her blood being too low, which could be easily resolved with liquid iron supplements in her bottle.  I am praying that it will be something so simple.  We are deeply grateful for everyone's prayers and most of all for the answers from God.  Please keep praying for our sweet little girl. 

2006-11-28 7:39 PM
Ella had an up and down day today. She has been doing better eating. The doctor seemed to think she was doing better. Then she had a spell while she was sleeping today. Those are the ones that concern the doctors the most. She hadn't had one while sleeping in 7 or 8 days so it was disappointing but hopefully it will be the last one.

2006-11-27 5:18 PM

Day 15 - Today, our little Ella was awake for about an hour and half of our time together, which is pretty good.  The speech therapist came this morning and had a few possible ideas for why she is having problems and what we can do to adapt her feedings to her.  I am scheduled to meet with the speech therapist and the head of the lactation department in the morning at 9 to work through some things during Ella's morning feeding.  Please pray for the results of this meeting, but more than that, for Ella's complete healing from these spells. She had one significant spell during her afternoon feeding.  Two of the nurses came over to help us.  Once we sat her up and rubbed her back, etc., her color came back quickly and her breathing became normal without additional oxygen. Ella and I had another visitor today, Albert Lemmons.  If she only knew the faith this man has in the God who made us and the faith and hope he has inspired in others, including her mom, well............one day she'll know.  Little Ella had her photo taken by her nurse today and a large copy of it went up on our refrigerator tonight.  

1 Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love. (Praying in faith, hope and love for our Ella.)

2006-11-27 09:49 AM
Spent last evening with Ella. I got to feed her for the first time. Shewas awake pretty much the whole time I was there. She's up to 6lbs12oz. Ella's breathing and heart rate are still dropping while she'seating. Although about half way through the feeding she seems to figureout the whole eating and breathing thing. Sheila said that a specialist is going to work with Ella today and try to get some insight into her eating issues.

2006-11-25 7:54 PM
Day 13 - Our little Ella will be 2 weeks old tomorrow.  Her nurse told me today that she has gained 3 more ounces and that she is now up to her birth weight (6 pounds, 8 ounces).  Ella and I had a visitor today, my sister Lesa from West Tennessee.  Little Ella was awake for over two hours today and seemed very alert.  She is doing some better with her feedings, but had 1 significant drop in her respiration stats during her morning feeding and 1 when I fed her this afternoon.  We still know nothing about when she can come home except that she will have to have a day (24 hours) that is free from dusky spells before they will start counting the 5 day waiting period.  Please keeping praying for Ella's complete healing so that she can come home to us soon. 

2006-11-24 2:38 PM
Just talked with Sheila and the doctor said Ella is doing much better with her eating today. Sheila said that Ella did very well eating today. So it's nice to have a positive day. Sheila had some pictures of Ella developed and you can see them by clicking here.

2006-11-23 3:31 PM
Sheila talked to the doctor today and the CT scan confirmed that Ella is indeed missing part of her Corpus Callosum. The medical term is Agenesis of the Corpus Callosum. You can find more information about it by clicking the link above. The prognosis ranges from perfectly normal to severely disabled. There's no way to know where she'll fall in that range. There are several doctors that we'll meet with next week that will want to take a closer look at things.

She did do better feeding today and we're hoping that with continued improvement we'll be able to bring her home soon. Thanks for all your prayers.

2006-11-22 5:36 PM

Our little Ella is 10 days old today.  Today Ella had a CT scan because yesterday when she had an ultrasound of her brain, they could not locate her corpus collosum (part of brain that connects the left and right hemispheres).  The NICU doctor called me this morning and stated that it may or may not be there and that the CT scan was ordered to determine this definitively.  We will not know the results until tomorrow morning.  Please pray that there are no abnormalities found by these tests.  I actually got to snuggle little Ella for an hour today without all of the monitors, wires and cords.  It was great for me and little Ella slept through all of her mommy's snuggles and kisses.  Today, I worked with Ella's nurse, the head of the lactation department and a speech pathologist to determine different ways we can feed Ella to avoid the dips in her respiration/the dusky spells.  We have 2 or 3 things we will be trying in the next few days to see if they help.  I took several photos yesterday and one today.  I will try to post these on the website by Friday so you can all see how sweet and beautiful she is. 

2006-11-21 6:01 PM

Today, baby Ella has gone over 24 hours without having a dusky/apnea spell.  She looked so sweet today, all dressed in pink.  The doctor came by to see me while I was there and said they did an ultrasound on Ella's brain yesterday looking for any small bleeds that might be present in her corpus collosum which might explain her problems, but thankfully, they found nothing wrong.  She said they went this route with the testing because the problems Ella is having are usually problems that premature babies have and she is not premature.  She recommended another ultrasound soon because there was an area they were unable to view during the first one.  But, she emphasized that these spells are probably developmental and would likely resolve themselves soon.  Please pray that Ella will be completely well soon and be able to come home to us.

2006-11-20 08:14 AM
Today, baby Ella was doing better.  She only had 1 dusky spell this morning and did not need oxygen to come out of it.  She is finished with her antibiotics and has had her IV removed.  Her color is looking much better.  She had a visit from her Aunt Angie today, who took the first photo of her and her mommy together.  Little Ella smiled today when I kissed on her cheek........one of a new mommy's sweetest moments.