The calm in the storm

I always knew that life was busy with a newborn, but throw in life with a special needs infant and I can't even begin to explain the daily chaos. On top of phone calls, doctors appointments, medical supply companies, in home nurse visits we are constantly on the go. The only time I get to sit down through out the day is when I go pee or pump milk.



Through all this craziness the dryer is broken and my cell phone is intermittently working and our internet service has gone down. I may just go crazy if life doesn't slow down. I know that all these things are happening for a reason, a reason I really don't see at this time, but I know I will survive...somehow.



Amongst this storm we have been blessed with a calmness, a peaceful angel. Noelle is a very special child. A child that is so clam and sweet. The spirit and peace she brings into our home is amazing, every time I hold her and look at her she clams the storm around me, all the stress and chaos disappears. She is such a blessing



I know that everything that we are dealing with is preparing us and shaping us into who God wants/needs us to be. I am trying my hardest to remain positive and faithful. This journey is not easy, but I know I am not alone.

Home

So Monday was an exciting day, we worked out a plan with doctors and Noelle was discharged that night. Our sweet little one is home with us. We are VERY, VERY, VERY BUSY! I will update more when I get the chance :)

Weigh in...

Today I sat down with our Nurse and Doctor and discussed protocol, discharge, care and expectations for us as a family and for Noelle. As we are getting closer to discharge, everyone is making sure we are all on the same page. It seems surreal that discharge could be as soon as tomorrow or as late as Friday. We are still waiting on weight gain before we can go home.



Overall from birth Noelle is up 1 ounce, which is great, but the docs want to see 3 days of gain. Whenever we have 2 of 3 days of gain, there is always a day of weight loss. The weight loss is minimal, but it is weight loss and they don't want to see that. Today we discussed looking at the past week and if Noelle is overall up then she should be fine to go home. Yay! We are ready to have her home and get into a routine again.



We have received all the equipment and supplies we need for her care, we feel ready and comfortable to take on this next step of life. I pray we will have the time, energy and patients to give Noelle the best possible life. She is a gift to us from God, I don't know how qualified I am to be her Mom, but I will give it my best and love her every step of the way.



As of tonight we are at 2 days of weight gain, we will see what happens tomorrow. Here is to hoping we are onto the next phase of our journey...Life at home!

A new toy

Noelle's OT gave her a new toy to enjoy. This should help her use her eyes and stimulate her more to assist her in proper development.

We are still unsure of how well she sees. The ophthalmologist assures me she isn't blind, but she also doesn't see 20/20. Hopefully she can look at this shiny new view and build her eye muscles and grow!

Love notes

Our main nurse, who takes care of our sweet little Noelle had a day off finally, so she covered the room with reminder notes for the other nurses to make sure they cared for Noelle properly. This one is my favorite and made me chuckle. She is so itty bitty she is wearing the smallest size diaper. It's smaller than the premie size that is sold in store. We sure love our nurse and will miss her when we leave. She is amazing!

Hearing test and Echo

This week we have had tests, many tests, I am sure this is just the beginning, today we heard back on her hearing test, but we are still waiting for her echo results.

A hearing test is a very routine test that is done before babies are discharged, they have been trying to test Noelle's ears since Monday and this kid was not having it. She has been PISSED every time they put the machine up to her head. They finally this morning caught her in a deep sleep and were able to do the test. Unfortunately she failed. The doc explained to me that it is very common with kids that have cleft pallets to have ear issues, so we will be going in to the specialist in July to have more testing done and see what is going on.

Her echo was done yesterday, we are still awaiting the results, it appears that there is still a small PDA and ASD, we will see what the doc says after radiology reads the test. We pray and hope this will fix on its own so she won't have to have another surgery.

As for now we are still waiting for Noelle to gain weight. She has either lost weight or stayed the same weight, once they can get her to steadily gain weight she will be able to come home!

1 Week Post Op

It has now been 1 week since surgery. Getting Noelle back up to her full feeds has been very slow going. Before surgery we were feeding her 29mLs every three hours. After surgery we had to slowly increase her feeds back up to her full feed, they started back at 7mLs per feed and very gradually increased her back to 29mLs. We have also been adding in calories to the pumped milk to help her gain weight. Many WHS kids struggle with weight gain, and since she is now two weeks old and has only gained 1 oz from her birth weight we are adding in calories to help her out.

The last couple of days we have been feeding her all of the 29 mLs per feed, she usually takes a few feeds of about 10 mLs by bottle and then we tube feed her the rest of her feed. She has a very weak suck so it is hard for her to get much out of the bottle, although her suck has improved greatly over the past two weeks. We are hopeful that over time she will get strong enough to take a full feed by bottle without our assistance of expressing milk. 

Since she is only taking some feeds by bottle we have been tube feeding her the rest. We have discovered over the past couple of days that the way we were feeding her was perhaps a little too fast and did not allow ample time for her stomach to absorb the milk. (we were gavage feeding) The plan now is to put her on a pump that will administer her feeds over a longer period of time to help make digesting the food easier on her and her tummy. 

We hope that this will work...as soon as we work out this feeding issue and she gains weight she can come home! YAY! 

We are ready to have her home where we can take care of her and not have to juggle schedules to get up to the hospital. Her sisters miss seeing her and want her home and they really want mom and dad home more too. We are so thankful that Grandma Jones has been able to come stay with us and help out with the kids. I can't imagine doing all this with out her help. Thanks Mom/Kim/Grandma!

Catch up

Hey everyone, I am finally off pain meds and able to concentrate more and get you all up to date on what is new and what has taken place these past two weeks. It is crazy to think that Noelle is now 2 weeks old! Read up on all the posts below and that should get you all caught up on how she is doing.

As you read some of these posts please excuse my spelling errors and grammar mistakes, I am sure there are many of them. I don't have much time to spend editing =)

Sisters

There is something magical that happens with siblings when they meet their new addition for the first time. These two girls are smitten by their little Noelle. I hope that their enthusiasm continues, especially with all the appointments and life change we will all be experiencing here soon.

Ophthalmologist

Since birth Noelle's eyes have had a "hazy" appearance, most newborns have this haze, but her eyes are what one would consider severely hazy. A few days after birth the NICU ordered a ophthalmologist to come and take a look at her eyes to see what was going on. After a quick look at the eyes they decided that they needed to begin an eye drop regimen to help reduce the pressure in the eye, which in return should also help clear up the haze.

A week later the ophthalmologist came back again to reassess the situation, her eyes appeared to be clearing some, but the pressure still remained the same.

Yesterday,  we had another exam done, they concluded that we will be going up to Children's Hospital LA (CHLA) for a consult and to see what they will want to do. Based on what our current ophthalmologist has said it is likely that they will do a corneal lens replacement, but we will see how that appointment goes. Appointment should be sometime next week!

Surgery Day

Today as we walked into the NICU room we saw little Noelle back in her isolate (warming bed) I felt like we had taken 5 steps backwards. Her nurse then came in and explained that the isolate is routine for surgery days, she was still maintaining her body temp as needed they just place her in there to be able to prep her for surgery with out having to get her dressed and wrapped in blankets multiple times as nurses and docs came in to do their prep work. I felt better knowing that she wasn't regressing as she had only been in the open crib for a few short days.



The morning was busy with nurses and doctors in and out of the room making sure they had all the correct information, prepping her and making sure we were informed on what would take place. The doctors also discovered as they were assessing her airway for intubation, her pallet is cleft anterior and posterior (in the very front of her mouth and in the very back, the middle is fused together). They think this could be related to her feeding issues. No wonder it's been so hard for her to eat and takes her so much time and energy.



So after Noelle was prepped and ready to go we walked with her medical team from the NICU to the operating room, there we shook hands with the surgeon and wished her luck and sent her on her way.



Lucky us, we have dealt with a number of surgeries in our marriage, a couple for Jake, a few for myself and one for Sadie, having these experiences behind us made it a tiny bit easier to watch them wheel away my precious tiny newborn. However it was still hard to swallow the lump in my throat and walk away to wait in the waiting area for our names to be called to talk with the doc after her procedure was complete.



As I watched the clock tick, the hour seemed to creep by, with anticipation I sat on the edge of my chair waiting and waiting. Finally at the hour mark, we heard our names called, they took us back to talk with the surgeon. He told us that surgery went great, Noelle was recovering and would be waiting in her NICU room for us. He also mentioned that he did find two hernias that will need to be fixed surgically in the next few months.



Little Noelle is such a tough girl and has been so good through all the procedures and tests. Some days its hard to hear the problems we will be dealing with, other times I just keep reminding myself that God won't give me more than I am capable of handling. I hope we will continue to have the strength to fight and stay positive because I know that she will continue to fight and will be home with us soon.

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!