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.