Holly Bug and Mom Update

Well, it looks like Holly and Mom are going to be coming home today. I am soOo excited!

Holly is doing well. She has pooped four times today. Yay for poop!! God has really blessed her and us. I am just so thankful.

For those of you able to make it to the New Years party we are hosting tonight, would you please let us know if you are coming? So we can get some idea of a head count. Also, would you please bring a snack or drink to share? That would be wonderful.

I thank you all for your prayers!

Amandolin

Mourning the loss of dear Sue

Sorry I didn't update with details, I was tired and really in a state of shock.

If you read around Thanksgiving I posted about losing our dear friend, Mark, on Thanksgiving day. Yesterday his wife, Sue, passed away very unexpectedly.We are all in shock. I can only imagine how devastated Mark and Sues' children and grandchildren are. I cannot believe that I spoke to her only a couple weeks ago when she offered help with Hollyse. Sue was a nurse who cared for her husband for many years. Professionally she worked in pediatrics. My heart goes out to her children who have in a month lost both their parents. The depth of grief is unimaginable. Please keep this family in your prayers. They need us to carry them with our love, support, and unceasing prayer.

One correction for yesterday...Hollyse was on pedialyte until 1 a.m. yesterday. She was to have nothing by mouth until the had a bowel movement or today (Tuesday) after the Dr's. removed her packing.

I will back track a bit....

Surgery went well, but took longer than we expected. They took another biopsy in the OR and had pathology have a quick look to be sure they would remove enough colon. Pathology could not be certain so her Dr removed more than planned. Pathology is doing more thorough testing and if they can't be certain the sample will be sent to St. Louis, again.

She came off the ventilator fine. She looked awful, be did everything they hoped. They also were able to get a second I.V. while she was under. She did not go to the PICU, just went right up to her room after leaving recovery. Her pain seemed to be minimal as she did well after given Tylenol. She slept most of the day after surgery. She fussed very little but was agitated when we would handle her much.

She was just given her first bottle of pedialyte since yesterday early A.M. So far, so good. In a couple hours I will be able to nurse her. But naturally, we are all praying for...you guessed it, POOP! So, please pray she begins having regular movement today. We are waiting for that. Do not even ask me "What if...." I just don't want to go there yet. One bridge at a time.

Please also pray for Holly's little friend. He is 10 weeks old and the Dr's are not sure what is going on with him. He has a wonderful mommy and daddy who we are becoming great friends with. I will not share more than that in order to protect their privacy but God knows all the details and we hope you will join our family in praying for him. I asked his mommy if I could ask you all to pray and she said yes.

Thank you prayer warriors. We appreciate you keeping up with Holly's condition.

Many blessings,
Michelle

Out Of Surgery

Hello all,
Holly is out of surgery and doing well.
She is still on the Pedialyte. However,
if she is doing great, she could be breast
feeding this evening.
That is all that I know as of now.

We will keep you all updated.

Amandolin

Hollyse's Big Day

Well, our little girl is in surgery.We are excited and relieved to finally be here.

Yesterday she was on Pedialyte all day. She took it very, very well. I was actually very surprised at how happily she took it and didn't fuss what so ever. She is gold! She took her last bottle at 1 a.m. and then slept until 5:30 a.m. Then she fussed some, but we held her off with the pacifier well.

Although she did well with the eating situation, it was still a pretty rough day for her (and heartbreaking for mommy and daddy). Holly has 'valve-y' veins (not sure what that means) but it makes it tough to get an I.V. going. It took an hour and a half, eight sticks, and lots of crying to get her an I.V. last night.I told then they should go for her head before they even tried and they didn't want to. So, seven sticks later, they gave up on her arms and hands. They had the same problem in the NICU. Her head always seemed to be the one place they could get one. This morning the surgeon said they might try for a second I.V will she is under. We laughed, and wished them luck.
I never, ever hope to see the look in her eyes when she was being stuck over and over again. It broke my heart into a million pieces. Dean could hear her screaming a hall and two closed doors down. He was crushed to have to let his little girl cry like that.

But, that was yesterday. We thank God her brought her through.

The Peds Unit encourages parents to sleep at the bedside and provide much of the general care. Her Dr. allowed me to give her the enemas he ordered every eight hours. I was glad I could since I know her and we have a little routine that works well.


We don't expect her out until noon. Amanda will probably post a brief update. I will try to update tonight with more detail.

We are both tired. We all thank you for your prayers and support.

Blessings,
Michelle (& Dean;)

Cottage Bound

Hello,
It has been a while since I last posted. Today, Mom, Dean, and Buttercup (a.k.a. Holly, a.k.a. Hollyse:) left for the Cottage Hospital. Buttercup will be on Pedialyte for all of today, starting at ten. tomorrow as well, up to the surgery. I am not sure when she will be allowed to eat normally again.

I have to say, I am having mixed feelings about this whole thing. I am so excited for Holly to be better, and not to have to have these enemas every day. I know that she will feel so much better... It's just all so nerve-racking. I am not worried about the surgery, as much as I am thinking about today, and the trial that my mom will be going through. She will be sitting by knowing that her little baby will be hungry. Also, my knowing that she will be hungry and that she can't eat upsets me too.

We have all thought about that^. We just have to keep telling ourselves that after this, it will all be over. That we need to be thankful that God gave us a way to fix this.

They just left not long ago. I am already missing them all.


In Christ,

Amandolin

Mom's Birthday on the 17th of Dec.

Mom kissed everyone after opening their gift. She didn't really want to kiss Dean. He didn't really want to kiss her either.

Dean's gift to Mom, Ugg Boots.

Kisses for Me

Mom opening my gift to her.

Jake didn't want to take a picture. He didn't really have a choice. hehe

Jake's gift to Mom.

Mom kissing Elle after opening her gift.

Carter's gift to Mom.

As you all know, for mom's birthday, we were in Santa Barbra for Holly's doctors appointment. However, we did do gifts once we were all home.

Here are a few pictures from the gift opening:


Amandaolin

Promised Pictures

HAHA....yeah...Surgery Date Change

Well, it seems they can get Hollyse in on December 29th. So, that looks a little better to me. She will be admitted on the 28th.

Believe it or not, we are still thinking about having the New Years party. It would be good for the rest of the kids and Dean. Holly will likely still be in the hospital but she ought to be through the worst.

I am now trying to re-adjust my head. I have a hard time with change. I didn't like the original date, but decided not to pout and then came to a good spot.

Sorry about all the spelling errors on my posts. I rarely remember to spell check...

Also, we welcome comments as we are printing all of them for a memory book for little Holly.

That is all for the moment!

Blessings,
Michelle

Surgery scheduled for January 5, 2009

Well, there you have it. The date we have all been waiting for.

The appt went well. There was a lot of info to absorb. We were really bummed that she will have to wait another 2 1/2 weeks for the pull through. But, we really wanted her Dr to be there during her recovery and not the on call doc. the holidays made it difficult. But, we are happy that we have a date to get this show on the road.

She will be admitted on the morning of the 4th. They want her to be cleaned out...meaning on pedialyte and IV fluids for a day before the surgery. We are expecting her to be in the hospital a few days if all goes well.

As I suspected, she will have to endure other, different, but equally undignified procedures in the months following surgery. I don't know what made me think we would escape what other HD patients go through, I just pretended it wouldn't be so I suppose.

So, we will be taking her to the doctor in Santa Barbara fairly frequently. He will eventually teach me how to do them and we can have less back and forth. I am not looking forward to it.

We also have her birth certificate in our hot little hands. We were able to take care of all of it yesterday. With us in the hospital it didn't get recorded the week after her birth, but it is all taken care of now.

It was a looong day....I appreciate all the calls and texts wishing me a happy birthday. It was a strange birthday to say the least. I opened my gifts late last night. I was more than a little slap happy at that point. We are planning on doing my birthday dinner this weekend as I have been to tired to really enjoy going anywhere.

But, I have to post the pictures from last Saturday...Dean put the light ups on the house and it was frightening to say the least. Every year I think it is the last year I want him to hang them. The first picture so reminds me of Pops (Anyone who knew him will agree, this is a great and funny resemblance to my wonderful father-in-law).

Amanda will upload a few cute pictures of Hollyse from yesterday. Her eyes are the most beautiful blue and in one picture, I think I captured them. So, check back later for them.

Enjoy!

Finding some Christmas Joy

It has been a while since we updated. Really, there is nothing new but it is still nice to know Holly is hanging in there.

We still do not have a surgery date. We know it will be after December 17th when we meet with her surgeon. I am praying it will be within a few days of that appt.

The insurance will not pay for a nurse unless the doctor writes a new order, so we are handling the procedures on our own. We are now doing them twice daily, double the emotional drain but necessary. She cries so much that when we are done she just crashes for a few hours. A couple times she cried herself to sleep during the procedure itself. As sad as that sounds, it was easier to finish with her asleep.

Dean has been out of town much of this week, so Amanda has had to help hold Holly down. I *hate* to have Amanda do this, but she is a strong baby and hard to manage for one person. I am afraid Amanda will be scared for life!

I personally do not feel like we are clearing enough out on a regular basis, but Holly is eating, sleeping, and behaving well so it must be enough.

I have joined some groups for parents of children with HD and that has been a huge source of help and encouragement. I am realizing how different every child is with HD. Many people have asked me if Holly will be 'done' or 'fixed' after her surgery. All I can tell you is it is biology! We hope she has no residual problems, but we just can't say for certain. She may need to be seen every six months and be in the best of health or she may have many problems requiring more surgery and life time issues. We just don't know. The surgery is 80% successful.

I am sorry we haven't updated in the last week. We are trying to get the house decorated, shopping done, and just regular stuff like laundry kept up. I do spend a lot of time with Holly and have not managed the house as well as I like to but, that is understandable.

Carter is having a hard time. He has been the baby for five years and now he is really being pushed aside. It is a just a challenging time for him right now. He has been a little obnoxious. Poor little man. The rest are hanging in there better but they are all happy and sad.

Thank you for your continued prayers. I just cannot possibly thank every one of you enough. I am in a perpetual state of fear and awe. God has truly blest us with prayer warriors. So many wonderful people have done more than I can even recall. It is truly amazing. We have been blest with so much. We are so grateful to God for all he has given.
To the many who have provided a meal, Thank you!!! Food tends to be the last thing on my mind but it is crucial!

Thank you Jill for being such a wonderful, kind, and understanding friend. Thank you for the pictures of our Hollyse. Thank you Amanda, I am on awe of your unselfish giving. What a blessing you are to the kingdom of God. You have served your family tirelessly and so served Him. When so many young women would have refused to help to the degree you have, you continue to give and look for opportunity to give more.

I want to compile a thank you list, but with so much help I will surely miss someone.

Sola gratia,
Michelle

Up and Down, Yes and No, Black and White...

Laugh and Cry...

I am so tired.

The visiting nurse and I do not feel like Hollyse is evacuating enough with the procedures. She called the Dr. he suggested something that did well, nothing. SO, I really feel like she is bloating up again and I am just waiting to take her back to the hospital.

She is fussing more and is eating less. I just want to pull my hair out because I don't want to wait until she is in a bad state before we intervene.

Sorry for being so, frustrated, but I think we just need prayer.

Blessings,
Michelle

Sorry for the late update

Holly came home yesterday afternoon.
She will be having daily enemas and seeing her pediatrition 2-3x weekly unitl surgery.We will have a visiting nurse, at least for today, check on her and help me with her enema.

We did get the last biopsy results this morning. It is definative, she has Hirschsprungs. We are happy to have a diagnosis, and sad that she has some hurdles before her. We will meet with the surgeon on Dec 17th. I am fairly certain she will have a pull thru soon after that appointment, within the week I imagine.

She is doing well, so far. She is eating and has had two stools on her own. SOmetimes she can, and sometimes she can't. She tends to get a lot of air in her tummy that she isn't able to pass, so the enemas help relieve that.

I am wiped out, but I can nap with her now;)

She is so smiley! I have never had such a happy little baby before.

God is amazing.

Michelle

Bittersweet

Today my family went to pay there respects to Mark. With all the emotions of the past few weeks, it was hard for them. We are all just so blessed to have known this wonderful man.

I wasn't able to go. Holly had a rough night with taking bottles. She really doesn't like them and made a bit of a stink. When I spoke with her Dr. this morning, she wanted to know when I was going to be there;) Holly wanted to nurse and cuddle.

I was able to help with her enema today. She had a considerable amount of air in her tummy. It is so uncomfortable to have air trapped in your belly and not be able to get it out. Although she stooled on her own, we still did the enema to relieve the gas pressure.

She is having some blood pressure issues. But, IMHO I think she is in pain. Maybe not a lot of pain but some at least. The biopsy and stitch cannot be painless. Often times, the day after any procedure is harder than the day of the procedure. I am praying that her blood pressure comes down.

We expect her to come home tomorrow, but that will depend on how comfortable I feel after doing her enema by myself.

Will keep you updated.

Michelle

Update from the NICU

I am sitting in the NICU while my mom nurses Holly. Mom was going down to SB so i thought that i would go to keep her company and visit little lady. The biopsy went well. Buttercup looks really good. I was happy that i could handle seeing her. I am a little on the queezy side. So- if I can handle it, she looks good;0)

The doctor said that she could probably go home tomorrow or the following day, if all continues to go well. As of now, it is promising:-)

Thank you all, again, for your prayers!!

Amandolin

Todays biopsy

We just got off the phone with the 'doctors'...they are getting her ready for the biopsy. It is a quick procedure, about 30 minutes. The issue will be how long it takes to extubate her (forgive my spelling, but I just don't care right now). That will hinge on her comfort level. SO, we can pray her pain is minimal and that she will start breathing on her own quickly. If it goes well, they will send her home tomorrow provided she has no other issues. They will have to show us how to give her enemas because she will need them daily until her surgery.

Her surgeon said that he doesn't expect her to be in the hospital for more that a few days when she has the surgery, provided there are no complications. So, that is good to know. They start feedings and usually the baby will have a bowel movement the day of the surgery. That is amazing.

On a side note, her Dr. put up her x rays for us to look at yesterday. We saw the first from almost three weeks ago, the one on the day of discharge, and yesterdays...very interesting. Her little belly was so stuffed in the first one it was heartbreaking. Yesterdays wasn't as bad, but it wasn't good by any means.

Another prayer request is that we can miraculously get enough rest between now and when she comes home to care for her exceptionally.

On a rather, umm, personal note that needs some prayer (so men, please skip this paragraph...TMI) I have had a major decrease in my supply. It is critical to us that Hollyse breastfeed. She has tummy issues, and this is the healthiest food for her. Her doctors and nurses have encouraged me to continue to pump. I really, need to keep up my supply. But with the level of stress it is really running me into the ground. I have been pumping every 2-3 hours, throughout the night even when she wasn't eating anything. So, I feel like I have had less sleep than ever. Can you please pray that my supply picks up.

I really do not like posting such personal things but I think it is more important to have the prayer than retain my privacy. I spoke with someone today who was wondering how it was going because I never said. Well, I just didn't want the male readers of the blog to have to read through all of that private stuff.

I also wanted to request prayer for my Aunt Kelly who was in a terrible car accident yesterday on the way to work. She has some broken ribs and a punctured lung but is doing well. Her passenger is not in as good of shape. I really don't know the full extent of her injuries but they are extensive and she is critical. Please pray for them and there families.

Sigh...the Ridderings lost their beloved husband and father on Thanksgiving day. Mark Riddering fought a long battle with ALS. He was a godly man and we are rejoicing that he is with our Lord and Savior today! To be absent from the body is to be present with Christ. In his memory I encourage everyone reading this to consider your spiritual condition. I look forward to seeing Mark walking in perfect health in Heaven. Praise God!

Soli Deo gloria!!!!

Michelle

NICU Rollercoaster

Amanda explained what happened very well. But, we determined that Holly wasn't throwing up bile. Her tummy was distended, but still very soft. In fact, when the nurses first looked at her they thought she looked fine. But after they stripped her down they agreed her tummy didn't look quite right.

I really thought I was losing my mind the last day because I felt like she was doing everything she did the first time. But, she was still eating and her belly looked good. She had stopped throwing up once I got her off the bottles. But, my instinct just said something wasn't right.

We knew we might have to bring her back. Her Dr told us we might need to give enemas if the suppositories weren't working. We just hoped, and prayed that maybe he was wrong.

They plan on doing the rectal section biopsy tomorrow. I am just anxious for them to do the corrective surgery in the weeks that follow. At this point, I wish they were doing that tomorrow instead of another biopsy. I just want that behind her.

She looks good. She had two enemas before I left and they cleared quite a bit out of her. She ate a lot last night, so it is good they are getting all that out. She looked comfortable, was sleeping contentedly when I left. She is such a sweet baby. I am just amazed at her disposition despite all she has gone through.

I hated to leave her, hated it. But, I am exhausted and had no time to get a cottage. Honestly, I don't think I even want one at this point. As much as being away from her is hard, she is in good hands. Dean and I need some serious rest before she comes home because she will need us both thinking clearly.

Dean is wiped out. He drove to Fresno on Saturday @ 4:30 am and just got back tonight at 5:00. He is almost delirious with exhaustion.

My mom and aunt left today. I am trying to imagine we will cope without them.

One of our favorite nurses was there. She is the one who told us about the NICU rollercoaster...slap you, hug you, slap you, hug you....the most abusive relationship you've ever been in. She was right on, little did we know!


Michelle