Posted (Tina) in All Posts on January-7-2008

Wow…it is amazing what a difference a day can make.

Thank you so much for all the specific prayers for the meeting today along with all of Ella’s recent needs. I feel that today is when we really felt the answers to our prayers.

When we called this morning, Nurse Marla was assigned to Ella. That was an answer to prayer. It was so comforting knowing that she could be there for our girl.

Surprisingly, Ella seemed as though she felt much better today. The one difference is that Marla hunted down a fan that she placed in Ella’s bed during the day. Since Ella runs warm (like her Daddy), she thinks that made a difference for her. She was running a temperature in the morning, but it was gone by the afternoon.

They’re beginning to think that it’s some kind of virus again. Maybe the symptoms returned after they stopped the antibiotics in the middle of last week. It is hard to tell what is causing her intermittent discomfort. We are hoping her good day today turns into a good night.

A huge praise: they were able to perform the EEG that they wanted complete. If you remember, they tried this about 2 weeks ago while Ella was not feeling great and had a nurse that didn’t know her, and the test did not work. Ella got worked up. This morning, she had Nurse Marla there with her. Although she fussed slightly while they were putting on all the gear, she settled down and dozed off. Then when she woke up, she gave a huge smile to Nurse Marla (above).

I love that picture – – it shows the true essence of Ella’s personality and spirit. She is such a trooper.

We were anxious for our meeting this afternoon. Once we arrived and visited with Ella a bit, we received a message that Dr. Kays was tied up in surgery and would not be available for awhile. It was around 4pm when all parties gathered.

Praise God – – the meeting went better than expected in many ways.

First off, they reported that Ella had an echocardiogram last Friday and the results were back. She has no pulmonary hypertension. High blood pressure in the arteries that supply the lungs is called pulmonary hypertension (PHT). The blood pressure measured by cuff on your arm isn’t directly related to the pressure in your lungs. The blood vessels that supply the lungs constrict and their walls thicken, so they can’t carry as much blood. As in a kinked garden hose, pressure builds up and backs up. The heart works harder, trying to force the blood through. If the pressure is high enough, eventually the heart can’t keep up, and less blood can circulate through the lungs to pick up oxygen. Pulmonary hypertension is a common side effect for babies with congenital diaphragmatic hernia (with everything Ella has been through, we expect that she would have it). Actually, she showed signs of baseline pulmonary hypertension early on, but as she has grown and developed, the latest echocardiogram shows that it is not present. We consider this a true miracle that she does not show signs of any pulmonary hypertension (you could tell that the news was surprising to all the medical staff involved).

Secondly, we were already told that her MRI done in the previous week confirmed brain damage. But they told us that a baby’s brain function is not localized. As you age, the areas of the brain do localize and settle in specific areas that provide certain functions. Because Ella’s brain function has not localized, her brain still has the opportunity to move these functions to other areas of the brain. Only time will tell.

However, they had ordered an EEG to see how her brain was functioning and whether or not she was having continued seizure activity. Based on Ella’s behavior, our interactions with her, and the opinions of the NICU staff, she was showing a lot of positive signs. But we didn’t necessarily expect the news we received: the test came back indicating normal brain function.

The results from the MRI and EEG give us hope that Ella has the capability to be an independent woman some day. This is not a guarantee that Ella will not have some struggles or deficiencies. However, we know that God made her in His image and that she is exactly who she is supposed to be.

Next in the meeting was one of the things that we were most anxious about: the big debate on next steps. As of Friday, we were told that the neonatologist, Dr. Drummond, had huge concerns about her central line still being intact, since the recent CT scan showed that her IVC was partially collapsed. She would like it removed as soon as possible because of the risk of infection and clotting. On the other hand, Dr. Kays wanted to go in through her central line and the partially occluded IVC and try ballooning out her SVC. We know that when they tried ballooning her SVC before, the risks were high. Back in late August when they tried, it did not produce any gains for Ella. We were surprised that Dr. Kays would want to try now considering that the risks are incredibly high and it did not work the last time.

The Lord used this past weekend to give us a sense that “less is more” when it comes to Ella. Normally, we would trust anything that Dr. Kays recommended, but we were not feeling prompted to go through with an aggressive procedure. Now if Ella’s MRI showed that she was suffering from hydrocephalus or was in any imminent danger from not doing this procedure, we may have felt different. So already before the meeting took place, we felt in our hearts that we knew the answer. This meant that Dr. Kays was going to need to be very convincing.

It was interesting because Dr. Kays took the approach of an open conversation whereas up till this point, he normally comes off very strong about why we need to move forward and complete a procedure. He proceeded to explain his perspective, but when it came down to it, he could not necessarily “recommend” the procedure. You could tell and I verbally asked him to verify that he did not have a conviction 100% that this was the direction we should go with Ella. Once all the information was laid on the table and Dr. Kays admitted that it was risky (she could die) and that there was no guarantee that she would get any positive gain from the procedure, it made our decision easy. This is what we prayed for specifically: wisdom and discernment. We wanted the right answer to be very obvious. (The nurse practitioner later mentioned that Dr. Kays was totally different today. Last Friday, he was insistent that the procedure should be done).

We moved on to discuss Ella’s next steps. We decided that we need to switch her diuretics over from IV to being administered via the g-tube as a priority. Although the CT scan shows the IVC is partially occluded and Dr. Kays thinks it is not in an urgent state, he agrees that it should be removed sooner versus later. The plan: starting tonight, switch the diamox to be administered via g-tube 1x per day and lasix via g-tube 3x per day at a dosage of 10. Last Friday, half of her lasix was delivered via g-tube and as of today, she was not showing signs of respiratory distress. As of tonight, all of her diuretics will be administered via g-tube.

They have tried this 2 other times with Ella and each time, she has gone into respiratory distress and her lungs begin to collapse on her (they get too wet). Remember that although the meds are the same, your body responds much different to a medicine via IV versus orally. It is no different for Ella. We need specific prayer that she will be able to tolerate this change. This is a necessary accomplishment in order for her to come home with us.

We realize that the dosages and types of medicine may not be the sweet spot for Ella. This may take some time and tweaking before we get it right. In the mean time, we need prayer that any signs of distress will be discovered quickly so that Ella does not have to endure any more than is necessary. Another blessing: the next several days will be critical to see how Ella behaves clinically to these changes and Nurse Marla offered to take care of her (she is supposed to work in the NICU 3 the next 2 days, but offered to work in the NICU 2 to take care of Ella instead). This means that Ella will have a favorite nurse and Marla knows her so well, that she will be able to tell if Ella is behaving differently in any way. This is key to having this change/transition work well. Please pray that Ella can tolerate this next step.

Once the diuretics issue is resolved, we will need to discuss food before Ella can come home. Portagen is not a complete nutritional source of food for an infant and so we will need to switch to a better formula. Standard formulas are rich with fatty acids which are key for infant development, but also caused Ella’s chylothorax to act up when it was initially given to her back in August. If all goes well, the soonest we can try any changes with her food would be next week.

All in all, we thought the meeting was going to be harder. We expected the worst and were so surprised with such great news. It feels like the first time that we have ever been given good news, or news that surprises the doctors. Most of the time, it has been tough, hard news. Ella has gone through so much, she is not textbook and is extremely complicated, but she is a blessing. We are so honored to be her parents.

Thanks again for lifting up all 3 of us to the Great Physician. Although the coming days may have its ups and downs, today was a day of refreshment. It was really needed and we thank Him for the peace He has given us. One look at that smile above and all this pain and anguish is sure worth it. We can’t imagine a better place to be.

We love Ella Renae and thank you for loving her along with us. God Bless.

Gloria & Red Jacobsen on January 8th, 2008 at 1:02 am #

Wow!! Talk about answers to prayer! We are so thankful for the good news and we will continue to pray hard all will be up hill from now on. I leave for Boston tomorrow for 2 weeks but Ella will be in my prayers and I will be giving a talk to a prayer group in Braintree, Massachusetts on Wednesday and you know they’ll be praying for Ella’s full recovery and a speedy homecoming. All the best!! Gloria & Red

Joel Snyder on January 8th, 2008 at 1:33 am #

Ella, I am at work and finally have a chance to sit down and digest the wonderful news from today. I will be praying that your change of medicines and how you recieve them goes well. I am hoping that you keep up those baby steps of progress and soon you can go home. Tina and Josh I am so happy that we have all recieved positive news. I am sure that there will be other obstacles to overcome but I think we can deal with it. I will be praying for your patience and strength to endure all the ups and downs that will occur. I Love and miss you guys. Love,Grandpa!!!!!!!!!!!!!!!!!!!

The Brittain Family on January 8th, 2008 at 1:34 am #

Tears of thanksgiving….thank you, Lord, for answered prayers and going above and beyond what we ask or imagine. We petition you for continued healing for Ella. Thank you for a committed staff who is willing to make special accommodation for this sweet little daughter. Thank you for the strength You’ve blessed her with and enable her to overcome these next obstacles even as You have so faithfully done in the past weeks and months. We praise you for this encouragement for her parents and lift up Your Name. You are Worthy! Thank You for sustaining them and giving them clear direction and then confirmation of that through this important meeting….Keep on Keeping ON, little family that could!

charlotte walton on January 8th, 2008 at 6:55 am #

Praise the Lord!!! i continue to check on ella
every morning as i check on par… my little
boy(14 months) and i pray for ella(and the 2 of you) every night at bedtime! i am so excited to hear the news of the meeting… oh how i prayed… and as i read your words i could not help but cry and cheer out loud at the same time!! y’all are so amazing… i find such encouragement through y’all… you have no idea
the impact ella’s life is making on the world for Christ… and your lives too! thank you for running the race as you are! God is being glorified greatly! i am continuing to pray for
ella’s improvement as her little body goes through lots of changes with meds,etc! God’s
peace, charlotte

Jim and Char Jordan on January 8th, 2008 at 7:20 am #

One does not receive confirmation of a blessing until the trial of their faith. You have been there. This wonderful blessing is so very needed and miraculous. Such a refreshing blessing. Hang in there Ella. We love you all so very much. Thanks for the update. LOL Char and Jim

Katy on January 8th, 2008 at 7:24 am #

What great news! Ella is a trooper and her smiles are wonderful. I hope you will be seeing a ton more of those in the coming days as you make transitions and she becomes stronger.

Joan and Steve Odell on January 8th, 2008 at 7:26 am #

Thank you Father – We are so elated about all the good news – Praise God for his love, guidance and support. He touched the physicians and led them to the right answers. What an awesome Father we have. Prayers will continue for all her needs to be met and that she strengthens in these coming weeks. Thank you for sharing all the information with all of us. Love and hugs to all three of you – Lord Bless – Steve and Joan

Your friends at Dr Richard Wallace's office on January 8th, 2008 at 8:27 am #

We are all so happy to hear of Ella’s incredible progress!!!!

Anne on January 8th, 2008 at 8:38 am #

with tears streaming down my face (tears of happiness, of course)… I just have to say that last picture at the end of your post says it all… what wonderful love and contentment it shows… a picture that is truly worth 1,000 words. So happy for you guys! God bless!

The Lizotte Family on January 8th, 2008 at 8:39 am #

Great News from the West family and the doctors. We pray that progress will continue for you. Thank you for working so hard on the blog. That Ella of yours sure is a ray of sunshine.

Eusey Family on January 8th, 2008 at 9:09 am #

Praise God! I am truly honored to be Ella’s aunt and your sister in law.
You are all amazing. Our Sweet Ella is going places! Look at the mark she has already left on so many lives in such a short period. Nothing short of miraculous.


Shannon (Ella’s favorite aunt- I hope!)

John & Estela on January 8th, 2008 at 10:01 am #

We prayed and he heard….that is what God is all about. He loves us so much that he knows what is in our hearts… Thank you Jesus. Love you guys.

Jeff Jacobson on January 8th, 2008 at 10:27 am #

We are continuing to pray and hope for you all. Hang in there!

Lisa T on January 8th, 2008 at 10:31 am #

I am so glad to hear that the meeting went so much better than expected. Like I said, that child is a steel magnolia. Go Ella!!

Heidi Ham on January 8th, 2008 at 10:40 am #

Praise God! All glory to our Heavently Father – Josh and Tina you are on my heart – I am praying for all of you and will add the new specific needs.

JoAnna King and Kids on January 8th, 2008 at 10:54 am #

Thank God for days of refreshment! What an amazing update.

Williamsburg on January 8th, 2008 at 11:45 am #

We also join the tears brigade in thanksgiving for God’s amazing faithfulness to you, to us, to the world. What an incredible relief to hear such good news – we are rejoicing with you and sending our usual cyber-hugs across the miles. Love and miss you more than you know. XOXOXO

Chambers Family on January 8th, 2008 at 11:51 am #

Amazing. The last pictures brought tears to my eyes. I know that is a precious moment with your girl and she loves the snuggle and comfort of her Mommy. So glad to hear the good news and that you have a plan to move forward feels better too. You are amazing parents! Ella is lucky to have you for a Mommy and Daddy.

Eli Brown on January 8th, 2008 at 1:27 pm #

I can’t imagine the stress of the daily decisions you are faced with, but am blessed on how God has been faithful. I am so glad to hear Ella had such amazing reports from the doctors, and that her brain activity is normal. I think back to that boring Physiological Psychology class we took back in school Tina, and the first time I was amazed by the beauty of how God created the human brain to adjust and repair itself. I hope that knowledge helps you now as you watch God’s work in progress.

Chris V on January 8th, 2008 at 5:25 pm #

It is true He listens. The last picture fills me with joy to know the Lord is good and through Him all things are made good. Amen! I will continue to pray every morning for the 3 of you for the glory is all His and He answers those daily prayers! love you guys.

Jan Costas on January 8th, 2008 at 5:35 pm #

Lord, I thank you for Ella’s good news and for giving Josh and Tina clear-cut direction. I pray now for Ella’s brain, that you would mend and repair any damage, that Ella will reach the full potential that You have given her. Blessings on you, Josh and Tina, for your steadfastness and trust. You are indeed in the fire. We continue to pray for all three of you, and Dr. Kays and his gifted staff.

Matt, Abby, Austin & Caed on January 8th, 2008 at 7:21 pm #

Praise God from whom ALL blessings flow…

Zandra on January 8th, 2008 at 7:48 pm #

Praise be to God!! It is wonderful to see Ella progressing!! We continue to pray for all of you!!

Zandra Morris

Julie MacDonald (Megan's Godmommy) on January 8th, 2008 at 9:09 pm #

Congratulations on the wonderful news! I love the picture of you, Tina, holding Ella – nothing like being a mommy, huh???? We continue to think of you all each day and will look forward to hearing more great news soon! Love, Julie

Laura Marold on January 8th, 2008 at 9:47 pm #

Sending you love and thinking of you. Ella is lucky to have such great people in her life all pulling together in the same direction and towards the same goal. You are great parents and someday she will come home. Prayers, Laura M.

The Texas based Snyders on January 8th, 2008 at 10:11 pm #

We love you three a lot! Hang in there and we’ll keep praying for you. XOXOXO

KERI oLSON on January 9th, 2008 at 10:43 pm #


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