3 months old

How did 3 months already go by? At three months her sisters are trying to teach her how to play cards. This little one has been such a blessing in our lives. She has kept us very busy and taught us more than one could imagine.

At 3 months old Noelle is...

• Trying to smile
• Still wakes several times a night
• Weighs 4 pounds! (Finally!) her nurse and I may have jumped with joy when we saw the scale.
• Has had 2 surgeries
• Is seeing 12 different doctors/specialists
• Been to 48 appointments (86 if you count all the appointments I had to go to while I was pregnant with her) I wish this number of appointments was a joke. No wonder I feel so over whelmed and can't keep up with ANYTHING.
• Spent 23 days in NICU (21 days after birth and 2 days post eye surgery at two months old)
• Has stollen the heart's of many

I am amazed by Noelle's sweet demeanor and precious personality. We sure love this little thing!

Dolls

Daily I am greeted with shocking moments. Moments that stop me in my tracks and make me panic. Until I realize that there is a doll laying next to Noelle. Sometimes the doll is tenderly placed next to Noelle, other times the doll is upside down suffocated with blankets with only her feet exposed. Many times I will find a doll in the car seat, swing, or bed and I'm struck with fear as I try to figure out who and how Noelle was moved from one place to the other, until I realize it's just a doll.

A big thanks to Sadie and Hazel for keeping me on my toes... Even if one is broken.

4 ounces

This wee one has been gaining weight. Last week she increased 2 ounces and this week she increased another 2 ounces! She is setting weight gaining records! She also go some blood work done today for her kidneys. Stay tuned for info on her kidney status. We are praying the have grown and are functioning better.

Accomplishing goals

We have so many appts and weight checks with Noelle. The doctors are following her progress closely. Each week we hope for 1 ounce of weight gain. Many weeks we have no gain, some loss, or on occasion we see an increase.

With WHS these kids will never be the same weight or size as an average baby. They have their own growth chart. At 12 month old WHS baby is 8-14 pounds.

This past week we saw Noelle's biggest weight gain ever. She gained 2 ounces! She is almost to 4 pounds! 3 pounds 14 ounces, hoping for another 2 ounce gain this week!

Neurology

With WHS over 90% of kids experience seizures, this has been the one thing that I have had the hardest time with. There are so many types of seizures, some fast and mild and some are long and hard. Since Noelle was born I have been carefully watching her every move, questioning twitches and hoping I wouldn't miss an "episode".



I have now seen a couple of neurologists, the first was very passive and told me not to worry about seizures unless it was a grand maul lasting longer than 2-3 minutes. As a mom this didn't sit well with me. If my child is having short mild episodes the longer I don't treat those the more likely the seizures could escelate into something much worse. I left the first appointment angry, disappointed, furious. This doctor acted like seizures were no big deal especially in a child with other obstacles and health issues.



On Friday we decided to take a trip to LA area to see another pediatric neurologist, she was awesome and made up for the terrible experience we had at the previous neurology appointment. She went over what to do, what to look for, non medical/natural treatment, how seizures occur and how they effect the brain and child. All these things were so important for us to hear and she answered all my questions and more!



We have no proof at this time of seizures, most WHS kids have fever induced seizures, so we hope to keep her fever free as long as possible and hope to not have to deal with seizures for a while if at all. If we suspect seizures and they are reoccurring then we will begin to medicate and do tests. We would be lucky if this was something we could avoid, so we will cross our fingers we can keep this precious little one seizure free!

Hearing Aids

We finally completed the test required to figure out Noelle's hearing loss. After 9 Hours of testing we are done! (for now anyway )I know we will have more test in the future. We learned that Noelle will need bone conduction hearing aids. Since she most likely has fluid on her ear drums which blocks sound from traveling to her ears, if they place an aid on her nerve behind her ear, it will amplify the sound and allow Noelle to hear everything around her.



The biggest downside to getting aids is having to pay for them. They cost $4000, and insurance doesn't cover any of the cost =( We are in the process of trying to find a way to fund them and hope to be approved by a grant. We will see what we can do.



We want to be able to provide Noelle with the best life possible and hope that aids will help her to be able to develop and grow to her maximum potential. Pray that we will find the funding we need to get these aids asap!

Hearing test

As we have learned, many kids with cleft lip and cleft pallet have issues with their ears/hearing. After many failed tests while Noelle was in the NICU we have been going to appointments where they are testing her hearing abilities and discovering what the issue is.



Yesterday we went for a 3 hour hearing test again. We had to repeat this test from the test previously because she has to sleep the whole time they are doing the test.The first time we attempted these tests she was wide awake the whole time and would not sleep no matter how hard I tried. They told me to make sure she didn't sleep at all previous to her apportionment from 8 am- 2pm they wanted her to stay awake. How do they expect a new mom of 3 kids to keep their kid sleep deprived before their appointment. She is only 2.5 months old, she needs sleep! This was a challenge and really hard on me. She still doesn't sleep at night so I am surviving on no energy, caffeine is what gives me my artificial energy.



So yesterday I kept her awake, dropped the older two off at a friends house and prayed that we would have some success with testing. To my surprise Noelle fell asleep very quickly and stayed asleep for a good amount of time for the tests! We learned a lot from this appointment, although we still have more tests to do we at least know her level of hearing now.



Noelle's right ear has about 45% hearing loss and her left ear has about 60% hearing loss, so we are told that if we talk really loudly (70 decibels or louder) she should be able to hear us. With her hearing loss and water in her ears she won't clearly hear us, she will hear muffled words but at least she can hear something. This gives us hope that at some point she will be able to hear us with surgery and aids!



We will continue with tests next week and hope for more info with time. One thing we do know is that they do not make aids for kids her size so we are going to have to wait until she is bigger to get her fitted and hearing normally.

Post op Opthamology

This week we make our trek back up to CHLA for Noelle's post op. I was kind of dreading this appointment, one because of the drive and second, I wasn't sure the surgery had worked.

The drive on google maps shows a 50 mile trip. Not too bad, if you don't hit traffic. The traffic in LA SUCKS! For some reason no matter what time of day there is always traffic in LA. We lucked out and it only took us an hour and a half vs the 2 hours it took us the previous week when we drove.

When you are working with a well known doctor you should always expect wait times. LONG wait times, one reason I was dreading this appointment. We waited two hours past our appointment time before we saw the doc. Since one of my friends took the older two kids I got some good me time in with Noelle. The doc did have some good news for us. Noelle's eye pressures were within the normal range! After surgery she didn't sound convinced that the surgery would work, she still isn't sure the pressures will stay down but it's nice to know they are good for now!

We will go back in a couple of weeks for a recheck of her eyes and go from there. She will have many more surgeries on her eyes we just hope and pray the pressures will stay down so they don't have to do more treatments before the next surgery.

Faith

I saw this today and it spoke to me. I won't give up....

Tummy time

When you are a preemie sized baby with a g-tube, this is the way you do tummy time.

NICCU

Our unexpected NICCU stay quickly turned into a 2 day stay, totally not what we had planned on. We drove up to CHLA  Wednesday anxious to get Noelle back home when we got there we were informed they would not be able to release her because her sodium levels were dangerously low.

I of course wasn't planning on this news and immediately called her doctors to try to get them to release her so we could get out of there. Soon after I started calling around her I got in touch with Noelle's amazing NICU doctor that helped with here when she was born. The doctor explained to me that she did need to be closely monitored and that the low sodium levels were likely to go back to normal after she peed off all the extra IV fluids. What most likely happened is she was over hydrated during surgery and it caused her sodium levels to drop so low that she was on seizure watch, I later found out with her levels as low as they were she could have died!

Now that we were on our second day of an unexpected stay we decided to find a place to stay so we wouldn't have to make the drive again and found a store to get the essentials we would need to hold us over until we could go home. We now know that any time we go to the hospital for any procedures we will go expecting to stay the night, then we can be pleasantly surprised if we don't.

The following morning Noelle's sodium levels returned back to their normal level and we were able to go home and get back to our kids! We are so thankful once again for my mom and her help while we went through all of this, she took care of the older two girls without complaining and spoiled them rotten =)

Surgery results

The doctor said things went relatively well. They checked Noelle's pressures to ensure the need of "venting" in her eye for glaucoma. Her right eye (the bigger eye) has always had high pressure and was vented to help it drain. Her left eye had good pressure and did not need to be vented!

Doc also confirmed that she does indeed have cataracts, but with the coloboma and glaucoma it makes treating the cataracts very risky. She will not preform that surgery at this time. She feels that it is too risky and wouldn't take properly. So we will continue to be followed by our regular ophthalmologist and decide on treatment and procedure as time goes on. For now we will continue doing her eye drops and getting routine eye checks to make sure her pressure stays low.

Thankful for a good team of doctors and going to meet our new NICU staff now. Hope they are as good as our team before :)

Ophthamology surgery.

As I sit here waiting for Noelle to be done with surgery I am anxious to know the results. Did she tolerate everything? Can she see better now? Do her eyes have a lower pressure?

These are questions even the doctors don't know. They never have answers for us before they do the procedures. We always go into each procedure with an open mind of it could be the "best" or "worst" scenario.

We are hopeful they will be successful. They have treated us well here, we know we are at a great hospital with knowledgeable doctors. Today as we met with anesthesiology we were informed that they were going to have Noelle stay the night for observation. This was something we were not planning on. Although it may be a bit of a inconvenience, I am glad they are taking the right steps to make sure she does well. They will be admitting her back into the NICU. Typically they won't re-admit a baby back into the NICU once they have left, but since Noelle is so small they want the best possible team available to her. We will be meeting her new NICU team shortly and meeting with her doctor shortly to discover the outcome. We will keep you all posted!

CHLA

As I have briefly mentioned before, Noelle has been seen at CHLA for her eyes. She has glaucoma, coloboma and possible cataracts. Since glaucoma and cataracts are typically seen in older people there are very few doctors with experience in treating and operating on kids with these conditions.



Our wonderful Ophthalmologist that we have been seeing since Noelle was in the NICU has connected us up with a great Doctor at CHLA who has also seen a few other kids with Noelle's same syndrome. We feel she is the best fit for this procedure. We ask for your prayers this next week as she goes in for surgery on Tuesday. I am nervous, but know she will be in good hands with the best qualified doctor around.



She will most likely have a number of surgeries on her eyes as they try to get them working the best they can. We will keep you posted on her progress.

Unexpected trials and surprises

We all like to be surprised to a certain extent, however the surprises for us this year have been more than we would have hoped for. I have many times thought about how many trials we have had to face this year. Trials I never would have wished on anyone to experience, trials I would have never expected. I have tried to face these trials and learn from each one, asking myself, "What is God trying to teach me?"

This past week has been full of more surprises than one would think possible, we received an unexpected bill in the mail with a huge balance, our washer and dryer broke, more and more appointments are piling up, I ended up in the hospital for a night with a horrible infection that left me wiped out for days, I could go on and on, but don't feel like bringing up all the negative, headaches we are dealing with right now. I just want a break from all the chaos!

However, as I prepared to make my second trip to the laundry mat for the week, a thought crossed my mind, I need to be more thankful. I am so thankful I do have a washer and dryer in my home (even if I am temporarily without one). I am thankful for my husband that works hard and has a great job that covers our bills, I am thankful I have medical care for my self and my child, life could be worse, I am thankful we have Noelle and her sweet spirit in our home, I just need to enjoy this phase of life.

We have been grasping and holding on tight to friends, family, and God during this roller coaster ride. We have learned that God is in control and he will never give us more than we can handle. Even when I feel I am at me breaking point, I guess he is just helping become stronger and learn to endure. Endure to the end.

I hope that this all will calm down. Soon.

Weight

"Is she gaining weight?"



"How much does she weigh?"



"How much did she weigh when she was born?"



"Where is she on the growth chart?"



"How much weight has she gained since we saw you last?"



These are questions I am asked daily by doctors, we are monitored so closely on weight for Noelle. We get at least 2 weigh ins a week. When we left the NICU she weighed 3 pounds 1  ounce (the same as her birth weight) now after being home for 4 weeks she weighs 3 pounds 10 ounces! Although her GI doc wants to see a more rapid weight gain, I am very happy with her progress.



We still continue to be busy with appointments. Every week I look at my calendar in hopes of having 1 day with out appointments, each week I am greeted with disappointment as that one day seems to fill up with an appointment... or two. Maybe, just maybe this week the appointments will slow down. One can hope. Right? =)

Audiology

Add another doctor to the list... Our network of doctors continues to grow. Just when I thought it couldn't grow any more. :)

Noelle had a number of hearing test while in the NICU and failed all of them. We have had a few others (all referred/failed) since then and met with an audiologist this week to discuss issues and a plan going forward.

While we met with the doctor she conducted several tests. We learned that Noelle most likely has fluid on her ears causing her to not be able to hear.

We learned that she most likely does not have nerve damage, so with aids she should be able to hear! We still have many tests to do. She is too small for some of the tests (the equipment isn't made to fit her small size) and she wouldn't sleep and cooperate for the other tests.

We go back in a month for more tests and hope that she will have grown more by then so we can continue treatment and get a better idea of what will happen with her hearing.

Blessed

I know I am so far behind on blogging, life is packed full of daily tasks and appointments and leaves no down time to catch up on here. I will try to allot sometime this weekend to getting everyone all up to date!



However, I do have some info we have shared  that we have not updated to the blog yet.  My sweet sister set up a fund to help us pay for Noelle's medical expenses. We have been so blessed with many donations and are so thankful for all the love and support. See her page here. ghttp://www.gofundme.com/b8ka2g



Feel free to share this site if you feel impressed to do so.

Doctors, PHDS, DOCS and DOCTORS!

I feel like I need to update everyone on the latest news. We have been busy, very BUSY, I feel like I say that in every post, it is just our life right now, alway something to do and somewhere to go. Since Noelle has been discharged (almost 2 weeks ago) we have seen several doctors. We have been to CHLA (Childrens Hospital LA) to see an ophthalmologist, and then around Orange county we have seen her pediatrician, nutrition, ophthalmologist, nephrologist, cardiology,  gastroenterologist, general surgeon, Occupational therapist, Regional Center, and neurology and a few in home care specialists.

Right now, we are hoping to get our insurance to approve surgery for Noelle at CHLA for the first part of August. They will be checking the pressures in her eyes and possible "venting" she currently has glaucoma and coloboma, with possible cataracts. We hope that the doctors can continue to work together to allow Noelle the best vision she can have. 

Nutrition is following Noelle's weight gain, we are currently fortifying (adding formula to breast milk) to give her additional calories to aid in more weight gain. Typically infants get 20 calories per ounce of breast milk or formula and Noelle is receiving 24 calories per ounce. 

Her kidneys are currently still small and appear to be functioning at 40%. We trying to find a person who can get a blood draw on her to give us an updated count on things. On Monday we spent an hour and a half at the hospital and 4 nurses trying to find a vein they could draw from. after 3 unsuccessful pokes I called it quits and we left. Hopefully we can find someone by tomorrow who can get her blood drawn.

Cardiology is following us as Noelle has an ASD and PDA, both which are categorized as small but will follow to watch and make sure that the holes close. If they don't close they will have to do surgery to close the holes.

GI is working with us to follow her progress with her feeds (bottle and g-tube). She is still taking 10-15 mls by bottle and 18-23 by pump, and hope that over time we can get her eating more by bottle.

The General surgeon says that everything is healing well with her g-tube! We are looking at operating on her hernias when she is about 6 months old. There is no rush to operate unless she develops a hard bump on her abdominal area, which he doesn't foresee happening. 

Occupational therapy is working with us on keep Noelle as mobile as possible. she does have a stiff neck on one side, she always turns her head to the right and doesn't like to turn to the left. At this time she does not have torticollis yet, so we are stretching her and working with her everyday to keep her from developing torticollis and to try to get her to use the other side more. 

Regional Center has come to meet us once, they have to review our case before we can get any services. We are praying that Noelle will be able to get therapy through them. They send therapists to the house to work with her on physical, speech and occupational development. This means I wouldn't have to drag the kids all out to these appointments (this would be fabulous and help me so much)! Dragging 3 kids to appointments is a day long task!

With this syndrome comes many seizures. Seizures of all types. We have learned through the neurologist of things we need to look for and what steps to take if she does have a seizure. over 90% of WHS kids have seizures at some point in their life. We are hopeful that she maybe one of the few that don't but will find out with time if she will face this additional struggle. 

I feel like this is the longest and most boring informational post we have made. Hope it wasn't too long and boring for you all =) Now that I have this all done I can start posting more regularly again and not feel so behind! My goal for the week... Post more to the blog. Stay tuned!

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!

Update

Sorry it has been a while since the last update. Time has seemed to slip away faster than I can keep up. First off, I hope all of you mothers out there had a wonderful Mothers Day.

The pregnancy has been progressing and the baby is still growing...albeit at a somewhat slow rate than what we would like to see, but nonetheless she is still growing. We have a doctors appointment on Tuesday this week and we should get an update on size. As of 2 weeks ago the baby was only 1 lb 10 oz, and the doctor is hoping that her weight will get up to 3 lbs by the time she is born. Also starting two weeks ago Kelsie is going into the doctors office for "stress testing". The testing that is done is to monitor the baby and make sure that everything is going ok and that the baby is not under too much stress. During the testing the heart rate and movements are monitored. This gives an indication of how the baby is doing and if she is "thriving", or developing like she should be. For example, when a baby is moving around it is expected that the heart rate will increase due to the increased activity. That is one of the things that is looked at during these appointments. The appointments are typically about 60 mins, but sometimes the baby is a stinker and won't move so the appointment can be as long as 90 mins.

As for anticipated delivery, the doctor said he would like to see the baby gain as much weight as possible and the best place to do that is in the womb. However, due to the risk of still birth he will not let Kelsie go past 39 weeks, so with the original "due date" being June 17 we are thinking around June 10th-ish. We will keep you posted as the time draws near. As always we feel richly blessed to have such a wonderful family supporting us with faith and prayers! We could not have asked to be part of a better family. Lots of love from us to all of you!!!

Doctor Appointment and DNA Results

Kelsie and I got our DNA results which showed normal gene structure and count. We had another ultra sound and have some good news to report. The baby has been growing really well the past 3 weeks. One of the symptoms of a baby with Wolf-Hirschhorn syndrome (WHS) is that the growth is typically very slow. At our last appointment th baby was measuring about 4 weeks smaller than she should have been. However, this week the baby was still 4 weeks smaller, which to us is great because it means she is still thriving and growing. A couple other items that we discussed were as follows:

They were able to find both Kidneys. Previously they were having a hard time finding both. The kidneys are smaller than normal, but seem to be functioning properly.

We got a good look at the cleft lip. Previously it had appeared to be a bilateral cleft lip (meaning both sides), however with what we saw yesterday we now are fairly certain that it is a unilateral cleft lip (meaning one side). At present we do not know if the baby has a cleft palette and we may not know and until the baby is here due the difficulty in seeing the palette via ultrasound.

Outside of that things seem to look "unremarkable" (doctors word, not mine). So we are just feeling extremely blessed and thankful. We have felt of your love and prayers each day and continue to realize that we are the luckiest people on earth to have such a wonderful family.