Surgery Day

Since the best surgeons are always busy, and we want the "best" possible doc working on our preemie sized angel,  We have been booked with a fabulous surgeon... TODAY in an hour Noelle will have her first of potentially many surgeries. This surgery is to place the G-tube. (Feeding tube/Mic-key button)

Please keep her in your prayers.

Surgery

Over the past week we have been working hard to get Noelle eating more. She has been struggling  with getting too tired and not being able to feed more than twice in 24 hours via bottle. Unfortunately she is only taking 1/3 of those feedings by bottle. This means that she is getting less than 10% of her daily feeds via a bottle. Not an impressive amount, and for days she hasn't increased her intake from the bottle at all.

Since feeding is the only thing holding us back from bringing home our little one the doctors have been talking to us about placing a g-tube in her stomach, this will allow us to feed her all of her feedings that she is unable to take by bottle. We feel that this is the best option. If at some point she learns to feed by mouth we would be able to remove the g-tube and feed her exclusively by mouth.

Over the next few days we will have surgery and progress toward bringing Noelle home! S and H are so ready to have baby sister at home and to have mom and dad at home more too.

1 week old

We know you have all been awaiting an update, thank you for your patients. Life has been a bit busy this past week, it’s hard to believe that Noelle is a week old now. Over the past week Noelle has been monitored closely and had many tests done. This past week they have done tests on her brain, kidneys, eyes and heart, as well as being seen by her genetics doc and numerous neonatologists (NICU pediatric docs). We feel so blessed to have such a well-educated and motivated medical team caring for our little one.

Her brain scan showed a small cyst, which at this time has no known affect on her. We will be following up with a neurologist in the future.

Kidneys although small, they seem to be functioning as needed and they will continue to be followed by her kidney doctor. She does have some elevated levels that show that there might be some sort of dysfunction, but at this point they won't know until they can monitor and run tests as needed

The ophthalmologist has seen Noelle a couple of times now, she has hazy eyes (many newborns have this) along with possible glaucoma and coloboma. They will continue to monitor her and see how things look over time.

Noelle's heart has been monitored closely from the day we began seeing my high risk pregnancy doc. Many kids with this syndrome have heart issues ranging from mild to severe. In utero it was hard to see if there would be any long term issues. Shortly after she was born they did an EKG and it showed a large ASD and a small VSD. This last week they did another EKG and found that the ASD is now small and VSD is still there. If these holes don't close on their own we will be having surgery at some unknown future date to fix this. As for right now she seems to be doing well.

The genetics doctor who works a lot with clef lip and clef pallets talked with us about future surgery that will repair her lip and palette. We do have to wait for her to hit certain milestones with weight before they will do the surgery and unfortunately kids with WHS (wolf-hirschhorn syndrome) struggle to gain weight making the possibility of surgery more delayed than preferred.

Over the past couple of days her primary NICU doc has discussed the possibility of placing a g-tube, this will help her with her feedings. Right now she is currently being fed 30mls every 3 hours via nasal tube. Every 12 hours she is able to take 10 mLs via bottle, but this leaves her very exhausted and she doesn’t find the energy to eat again for another 12 hours. As of this morning Noelle will be having surgery to have a g-tube placed, which will assist us in being able to bring her home, where we will continue to work with her to feed via bottle. She has made a lot of great progress in the last week and we are hopeful that she will continue to make progress.

Please continue to keep her in your prayers. (We know that they are truly helping) She is a tough fighter and so sweet, we just want her to be able to grow and thrive and be healthy!

Tests

 Noelle Had multiple tests done today. Heart and kidneys look good. Minor, but not problematic "bubble" in the brain, sounds like more of a non issue than anything, but we will be doing further evaluation later. She was on Oxygen, but they took her off around noon today and she has done great, actually even a little better. She is eating via a feeding tube due to not swallowing very well, but her digestion is good and her bowels are functioning "really well" according to the nurses. All in all she is progressing really well. Still no timeline for when she gets to come home, but we're optimistic that it will be sometime soon.

Birthday!

Our sweet little angel joined our family today. She is truly a gift from God. 3 pounds 1 ounce 15.75 inches long. She is so sweet and has such a calm demeanor. We are honored to be blessed with such a sweet spirit.




Waiting...


Still waiting....


Almost go time!


She is here!!!!!

Today is the day...

Looks like today will be the day.This baby is going to be here soon! Kels & I are at the hospital in Anaheim and due to the baby being breach (head up) and having lower than optimal fluid Kels is scheduled to have a C-section at 4:30. Thanks again to everyone for all of your thoughts, prayers, and support.

Countless Doctor Apoointments

After weeks and weeks of many, too many doctor appointments, it appears that this week will most likely be the last week of countless appointments. The doc has told us it is highly likely that we will be delivering this week. My amniotic fluid has been dropping at a fairly consistent rate over the last several weeks. It is now low enough that an induction must occur to not cause any potential issues for Noelle.

 

We will be delivering at a bigger hospital, than originally planned, with more specialized doctors and better NICU to best assist Noelle with any issues she may have after she is born. We have been advised to expect a NICU stay from anywhere from 24 Hours to 3 months depending on any struggles she may have and need to over come.

 

We are so very thankful for all the love and support you have all shown through this time. We welcome your prayers as we embark on this new journey in life. Thank you all!