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

Prayer

Mom just left to take Holly to the Cottage Hospital again. On the way home from church, I sat with Holly in the back seat... Just as we pulled up to the house, she threw up. The throw up was yellow. When my parent took her in last time, she had been throwing up yellow, which turned into green. You can imagine our panic. Mom grabbed her and ran onto the house. Mom decided that she didn't want to wait until the throw up turned green and started to pack to take her to the hospital. I held her and got her dressed while mom finished up. Holly hasn't gone poop for almost three days, so her belly is distended as well. It is just a little distended... Still, a little distended is too distended.

A friend happened to stop by in the panic. I want to say thank you to Jane Beard. Thank you for giving my mom comfort and prayer. I appreciate it. We all do. Also, thank you for the darling outfit.

Also, my Mom called ans said that the doctor called back. The doctor wants to admit her again.

Please keep Holly and my Mom in prayer.

We appreciate your prayers more than you all could know.

Amandolin

The story of 'Ninja Mommy'...

Well, I am sure everyone is wondering how Hollyse came home Wednesday. So, I will fill you in.

When I woke up Weds I just couldn't figure out why we needed to do the biopsy this week instead of next week. If they can wait 2-3 weeks to remove the non-functioning colon, then why couldn't they wait until after the holiday to do the biopsy? I was feeling kinda crabby about the whole thing. The nurse the night before wouldn't let me nurse Hollyse for various reasons and I was pretty frustrated. I was feeling like she wasn't even my baby. They made all the decisions and told me when I could hold her, feed her, visit her. It had me pretty miserable. So, needless to say when I walked into the NICU it was with a bit of irritation. I took one look at Hollyse and just about blew a gaskit. She was missing little tufts of hair, had bruising from all the needle sticks all over her head, hands, and feet. There were spots of dried blood on her head and she was really blotchy, I assume from crying. They had established an IV in her hand but still needed to get another before the biospy. I just couldn't take it. I have been in the NICU when they are trying to get a line going on a baby and they cry, and cry...I just couldn't take anymore.

I told Dean I was going to remove the IV and walk right out of the unit with my baby. He went and got one of my favorite nurses. I told her how I felt. She told me I didn't have to give consent. I told the Dr I wanted to wait and he said "okay, we can do it next week."

WOW. That was easy. The nurses were all cheering me and Deans jaw was on the floor. He told me he never thought my crabbiness could be used for good. Within two hours, we had packed up our bags, her bags and were in the van driving home.

So, we will be scheduling her biospy for next week, or the week after. Things will proceed as planned, just a week or two later.

Hollyse is doing well. It has been an adjustment and we have had to call the Dr once with concerns so far. Did I say how much I love the NICU Drs? They are awesome. Holly needs suppositories every 12 hours unless she goes poop on her own. I have had to give them to her twice only.

She isn't the most vigorous eater. I finally quit giving her the bottle because she would swallow so much air she wouldn't eat much at all, but then spit up most of it when she would burp. It was somewhat of a vicious cycle.

I confess, I am a little more than a baskit case if she spits up too much, sleeps too long, doesn't eat long enough, doesn't poop, or pee enough...you know, basically anything and everything has me in tears. I am like a first time mom.

I thought it was time to get some pictures that weren't taken in the NICU of our little Buttercup. She is just so sweet. She is such an easy baby, but I am just making a big deal over everything!

Your continued prayers are much appreciated. I am dreading the biopsy and the surgery that will follow.

Thank you for checking in on her. Thank you for all your precious prayers.

Sola gratia,
Michelle

Thanksgiving Day

First off, I hope you all had a wonderful and blessed Thanksgiving!

We all feel blessed to have been able to have everyone home for Thanksgiving. Spending more time fighting over who is going to hold Holly than cooking. Hehe. She has been passed around and around. I will say, however, that i won most of the time=] including being able to bathe her, hold her ( a lot ), and feed her three times.

Speaking of feeding, Holly seems to not be wanting to stay awake to eat. She has spent most of the day sleeping. The little food we have managed to get into her, she has spit up. We are all concerned and praying hard. Mom is currently trying to feed her. She, is not having it. I think she may have had a bit so far.

She has been going to the bathroom plenty though. So no problems there! We find ourself shouting from the changing table," theres poop! theres pee!" We have been very happy that she has been going to he bathroom pretty well. Where she is getting the food to be able to go to the bathroom, we have no idea. Still, we are praising God that she is!

Please pray that Holly would eat more and keep it down. We are worried about dehydration.

Amandolin

Surprise!

Okay... I am posting this because i was on the other end of this story. The super excited end.

My siblings and I were sitting in the kitchen painting a welcome home sign for Mom, Dad, and Holly while Grandma and Aunt Paula were just doing their thing. My room is closest to the front door... SO as i pass the front door, on the way to my room, the lock starts to turn and make that "slide, click" sound. I stopped and turned around. I stood there with my head peeking around the curtain, that serves as Noelle and I's bedroom door. The door burst open, and before I knew it, i have a camera shoved in my face. It was Mom, Dad, and Holly. Mom was capturing the moment of shock and surprise.

I am so thankful! I prayed so hard last night. I wanted so badly for them to come home for Thanksgiving. What a wondrous God we have! I can almost not express how happy and excited I am and was.

I am not fully up to date on what is going on with Holly. Mom will have to get on later sometime, and inform. I do know that she will need to go back in the next few weeks. Other than that, I am not sure.

How to comment...

click on comments, when the new page opens, write your comment in the box. Click the 'anonymous' button, then 'post'.

Hope that helps!

Catchup from day 11 and updates for day 13

Just wanted to share something from day 11 because we were so exhausted we didn't blog.

Day 11 started out really crummy. We both woke up feeling like we never slept. We both had headaches. We slogged through the morning. At lunch we sat in the cafeteria and ate purely for necessity. We didn't even talk, which is rare as everyone can well imagine. We needed to do laundry and so were headed over to the cottage to get our dirty clothes, then head to the laundromat. We got into the elevator, went up to the lobby, the doors opened and there stood the Mougettes!!!! Our day turned on a dime :)) Their visit made a perfectly ruined day wonderful! Thank you both. You will never, ever know how much pleasure we had in that visit. It was just a gift.

Please know that we love company. It really helps to break up these long drawn out days. It lifts our spirits and helps us keep our perspective. Don't hesitate to visit now or when we get home. Well, unless you are sick, then we just don't want you to come around until you are completely well.

Consequently, Dean and I went to dinner later at Opal. It was nice to eat something good and be away from the hospital. Oh, and to the naked capitalist, your honey was right on about the Barrel 27. Good stuff!

Okay, so day 13...can I just gripe a little? I really feel like I have a gaggle of mommies mothering me. Seriously. I always thought I knew how to take care of a newborn but apparently I don't! I can't burp correctly, hold correctly, or even bottle feed correctly. I certainly have no idea what I am doing. I have never been told exactly how to hold my infant before and frankly I find it irritating. Now, by and large most of the nurses don't 'mother' me but the few that do really grate my 'nerve'. The last three nights I have had to just leave. For a moment, or two, I thought I should tell her what I really thought but thought that might not be so smart. I kept excellent control of my hot puerto rican temper.

Anyhow. Hollyse is lovely:) She didn't need BP meds today. I know many of you are really worried about her blood pressure. Her Dr. reassured us that she is doing better than they expected and that her kidneys are healthy. The blood pressure issue was caused by a hormone secreted by the kidneys due to a reduced blood pressure caused by small blood clots. Sounds scary, but it is a pretty expected response considering the stress her body was under and it is resolving nicely. We don't expect that she will need BP meds when she comes home.

Her IV gave out last night so I put some hats on her today. She is the sweetest baby. She smiles a lot, especially when she sleeps. It is just the cutest thing.

Prayers for the biopsy tomorrow at 10:30. They will put her under general and intubate her. We are trying not to look at this as going backwards, but in a way it feels that way. We are praying she comes off the vent easily and quickly. She should be able to eat pretty quickly. We are praying she does so, so well that they let her go...

She nursed several times today. But she is still sleepy and really doesn't get a good enough feeding IMHO. But she did have plenty of wet dipes and she even pooped twice without a suppository! Pray that she wakes up for her feedings. She is being fed on demand now, so we just want her to stay focused and get enough in her to thrive. Plus, they will not release her if she isn't eating enough.

On a side note, Weds is also Jacobs birthday. He was praying Holly would be home. I wish we could deliver on his birthday wish.

We are looking forward to having our little girl home soon.

Sola Scriptura!

Michelle and Dean

Day 12 news!!!! Woohoo, real NEWS.

We do have news!

I was able to nurse her for a few minutes. What a gift from God to nurse my baby!

They gave her a glycerin suppository and she pooped, ALOT.

They ended up sending the samples to Saint Louis and we have some news from them, finally. They feel pretty sure she has short segment Hirschsprungs. But they want to do a deeper biopsy that will require general. They will still go in rectally and she will need a few stitches. They plan on doing it Weds morning. She will have to fully heal from the biopsy before they can remove any of her colon, that is if the deeper sample tells them conclusively. So, the plan is surgery Weds morning. Release as quick as she is able. Go home and heal from biopsy (2-3 weeks) then back for surgery to remove the portion of her colon affected by Hirschsprungs. No idea how long she will be here when she comes back, but I imagine 2+ weeks as they initially told us. While home for the 2-3 weeks we will have to use suppositories/enemas to keep her pooping.

They just did an ultrasound of her kidneys due to the blood pressure issue. She had meds for it yesterday but only twice. They reduced the amount of and increased the span better them today. But we just need to know her kidneys are good. She is having lots of wet diapers.

So, maybe she will be home this week. Surgeon said maybe Weds, Dr. said more likely Friday. But we shall see what God wills.

All in all, it is a good day. She is keeping her feedings down. They switched her to a slow flow nipple and that helped. I should be able to nurse her all the time very soon. Although we have another biopsy before us, we do feel that we have a much clearer picture of what to expect in the coming month and we are so grateful for that.

Thank you my prayer warriors! We can all continue in prayer for it to get better and better.

Praise God!!!

Much love,
Michelle and Dean

Day 10

I wish I had something great to post about, like maybeeee...POOP. Sorry. Nothing yet. Lotsa gas tho'.

Well, I do have some good news. She hasn't needed BP meds since last night, so that is good news. We have sort of figured out how to deal with the amount of throwing up she does after every feeding. If we burp her every 5 ccs then she does much better. She is up to 30 ccs so it takes many burping breaks.

We are missing our favorite nurses. There have been four or five we especially love. They are off for a few days and it is a whole new rotation. Todays nurse was a little, difficult. I can deal with picky, I like picky. No problem with someone doting on my baby. But I don't care for someone who doesn't pay much attention or take much care but then gets testy over really dumb things. Tonights nurse is new and I like her already. She is very orderly and takes the time to attend to her like Hollyse was her baby. The nurse today was gone so much that I didn't want to leave to eat.

Anyhow, it is quiet her on the weekends. We don't expect to hear anything from UCLA but we can hope. Better yet, Hollyse can prove her colon works just fine then we won't be concerned much with the results.

We are weary. Thank you for remembering us in your prayers. I know it is dragging on and on, but please continue to be our prayer warriors.

Sola gratia,
Michelle

Amandolin can you post a picture or two of Hollyse from today?

Day 9 Update??? I think...

Well, not much to report. No poop. So bummed, really want her to just let go....She has had lots of gas and her xrays look fabulous. We just need her to go already. Haven't heard from UCLA yet. Probably won't until next week I am guessing.

Her BP has come down, but they did have to up her meds. So, not good, but not bad either. The Dr. explained to me yesterday that the joke is, when an infant has high blood pressure it's one of three things 1. kidneys 2. kidneys 3. kidneys. He is confident there is no permenant damage. Given what she has gone through it is not surprising she is having this issue.

Correction on her feeding amount from yesterday. She was getting 15 cc...I think that's about 3 teaspoons. She is up to 25 cc and will stay there for awhile. If she would poop then maybe they could move her up. She has puked some and I have had a hard time with it because of how much she was throwing up when we brought her in to see the doctor. Anything coming out the top just gives me anxiety.

She is a sleepy baby and doesn't get through the feedings without a lot of nudging. Plus, she wants to nurse so she has a hard time with the bottle. I am not complaining about that.

It was hard with Dean gone, but I got through. I don't think the day would have been nearly as smooth if my friend and midwife hadn't come and visited with me. Thank you Mary, you are the best. I have shared how wonderful the drs and nurses have been, but I haven't shared how wonderful our midwife was. She is steller and we thank God for her assistance and guidance through the birth of Hollyse.

I am writing this from inside the NICU, the waiting room is a mad house. It is like Chucky Chesse out there. Honestly, there have been many children who have come but there is a family out there with some wild little ones (Trust me Andrea, I can hear them from inside the NICU). If Dean wasn't bald he would have pulled out his hair...seriously.

Life is at a stand still. I just can't even imagine what a regular day is. It is depressing. Although I am grateful for many things I am having a real hard time imagining another day or worse week...or ???? I can't fathom having her home and doing regular things like doing laundry or making dinner. Just seems so far away and impossible.

Please continue in prayer for little Hollyse. Prayers for her BP to come down and prayer for poop.

Blessings,
Michelle

This is Dean and I have to apologize in advance, but I'm a much better talker than writer. Michelle doesn't have the computer so I am in charge of updating the blog. Michelle has passed on that Hollyse has been looking better and the feedings are up to 15 oz. Hollyse still hasn't pooped and she is on blood pressure medicine so we need to pray for poop (that's kinda weird to read...) and that her blood pressure will go back to normal. I will be back in Santa Barbara tomorrow morning from my quick trip to the Bay Area. So I am looking forward to seeing my little princess ASAP. I know this isn't as in depth as Michelle's updates, but it's actually much better than I expected.
Thank you.
Dean

The 'Report'....

Well, it told them nothing really. Yep. They couldn't find healthy ganglian but they did find healthy nerve roots. That doesn't make sense. It conflicts. So, the report was sent to UCLA to be reviewed by a pediatric pathologist. They may have to do another rectal suction biopsy. Her dr doesn't expect to hear from the UCLA doc before Friday, at the very earliest. In other words, sit tight through the weekend. We just don't know, and they are a little stumped.

They did agree to let her start feedings. So she had a half teaspoon of diluted breastmilk. Yes, a whole 5ml...not very filling, but it is a start. She will have four such feedings then move on to full breastmilk, then to 10ml, so on and so forth. If it continues as it has today and she tolerates it well, then she will start full strength at midnight. She did take a bottle, with a little nudging. She is ferociously hungry, but knows the feel of the pacifier and also knows it doesn't fill her tummy. So, when we give her the bottle, she thinks it is a trick and won't take it without some serious coaxing. Poor baby.

Dean has to be in San Jose tomorrow early. So, I am on my own. I think it will be fine, but if she quits handling the feedings it will be rough alone for certain. Please pray for his safety as he is exhausted.

I guess we have the cottage tonight because they never called and said one way or the other?

Once again thank you for carrying us in your prayers through this difficult time. I thought she might be home this week, but am preparing for her to be here through Thanksgiving. It would be wonderful if she were to come home before then. But I just don't want to get my hopes up.

Blessings,
Michelle

The Tulip Room

We thought it was great that our room at the cottage is the Tulip room. God does have a sense of humor doesn't He? I mean, what are the chances that would happen? Only a Calvinist can appreciate it!

Michelle

Pathology

Pathology-What exactly is the major malfuntion? Are you understaffed? Are you under paid? Perhaps you took a vacation or maybe you are on strike? Whatever it is, can we please get those biopsy results? You see, we have a very hungry little baby who cannot eat until we know the results. She wails. This is not a baby who is fussy so that is really saying something. I know the person who is reading her results was off today, but this IS a hospital after all. Pathology is open 24 hrs a day. Cannot someone else read it?

We waited all day for the results. Hollyse waited all day. We are all a little irritable. I am afraid I am going to transform into ninja mommy if I have to see my baby cry for food much longer.

Dean and I could barely choke down our dinner knowing our baby is crying to eat. It just seems wrong to eat when she isn't. It has been 7 days since the poor baby ate for crying outloud.

In other news, the IV in her head gave out. So they put one in her foot, but that is going and now they are searching for another. The arterial line went today too. They quit trying for a PICC line. She is moving on doc. They put her in a regular crib today:))) It is the cutest little crib, Her nurse made it pretty and put all her cards around it. They haven't started feedings, and can't because pathology is on sabbatical apparently.

She has great bowel sounds. All very promising news. We are really feeling good and so are her doctors, nurses, and surgeon.

Please pray for her comfort. We know she is being fed thru her IV but it still hurts to have her root all over and cry to eat. It is just killing us.

Please pray for the results to come back , like now, in her favor. We know we are blessed and see Gods many mercies to us and to Hollyse but it is still very hard waiting and not knowing what is going to happen.

Be sure and thank our God for his great goodness in answering all your prayers. He has been so, so good to us. I am in awe. I really see a miracle unfolding and can't believe it is happening.



Because He lives,
Michelle

Updates for Monday

I really wish I could think of a better title than 'updates'...but I have mommy brain and am more than a little exhausted. Amanda is on her way home from the hospital and will post a few pictures when she gets home. So be sure to check back. Mom~I am putting up the happiest pictures possible for you especially.

Hollyse looks better everyday! She is slowly losing the bloated look. Her head still seems the biggest as you will see in the pictures to come. But, she really looks awesome and so peaceful when she is sleeping.

We didn't get the results from the second biopsy....bummer. They tried multiple times today to get a PICC line and couldn't get one. Her nurse finally said "She's had enough, no more at least not while I am duty." They have to give her morphine because it is painful. I keep thinking she won't need it anyway because I know she is coming home;)

She had two poops all by herself last night, yay Jackson! Keep praying little man, be cause God has an ear to you! I think we should all give a shout for poop...and all mommies have to clap in honor of Hollyse next time they get a poopy diaper (Jill, Corinne, Sami, Jenny, Kathy, Julie....).

They plan on starting Sterile water feedings as soon as they get the biopsy results IF she has healthy ganglian. They will see how she tolerates the feedings and progress to diluted breast milk, then regular breast milk. The Drs. tend to think she has had a functional bowel obstruction. They are leaning more in that direction rather than the Hirschsprungs at this point.

They also plan on removing the arterial line tomorrow too. It really isn't functioning as it should anyway. She is off oxygen so they don't need to be taking blood gases which really removes the need for the arterial line at this point.That line just LOOKS painful, so I will be happy to see it go.

They also told me I can bring in some outfits because they will soon be putting her in a regular crib:)

And.....I got to hold her last night for the first time since Weds eve!!!! :)))))
I cannot tell you how WONDERFUL it was. Another thing that made me very, very happy was hearing her cry this morning. I know that seems strange, but she has been totaly silent for five days and the sound of her little voice was so reassuring. I put my hand on her head, gave her the binky and she stopped. Last night she was rooting and her nurse asked if she could give her a binky, I was thrilled because it is a small thing that will sooth her some.

She is getting TPN through her IV but that doesn't make her tummy feel full, so she acts super hungry, that is really hard. I know that she is getting everything she needs, but I hate that her tummy is empty. I am so looking forward to having my baby home with me and being able to feed her. I actually see a light at the end of the tunnel and really believe she will come home.

We are both exhausted. I don't think I have ever been this tired. Ever. In.all.my.life. We have the cottage another night and I am praying we have it until she leaves, which will be soon I am SURE.

Thank you for your prayers. People have brought food, cookies, drinks, notebooks, PRAYERS, a hand therapy kit for my hands. We wash so much that my hands are dry, cracked, and bleeding. A sweet soul noticed and now my skin feels and looks so much better. Please continue in prayer for our baby girl. We are indebted to so many. Thank you, thank you, thank you....

Solus Christus,
Michelle

Sigh...

Well, they weren't able to get the PICC line. Her veins are tiny. They will try again tomorrow with another nurse. Not 'bad' news, just was hoping that she could have a few less pokes...

Belated Saturday & Sunday Update

Well, there have been a lot of good things that have happened.

The rectal suction biolpsy went well. It was quick, painless, and nothing painful. Now, we wait some more. I am really praying for results tomorrow, but don't expect them until Tuesday.

When we walked in to see Hollyse yesterday morning, the nursing staff watched our reaction to her 'new' look. Her new look was much improved! So much of the edema had drained from her body it was incredible. Her nurse that night had worked hard to keep her turned and massaged all night. Seriously, these people are WONDERFUL. I am amazed at the care they provide these babies. They are tireless and loving.

So, with much of the edema gone;) (Thank the Lord for this!) We were happy, very happy. They decided to remove her breathing tube. I knew that they might have to put it right back in, but was really praying she would take over breathing on her own. Which, she did! It took a while though. When she had the tube in, she didn't fight it at all, she just let it do its work;) But with it out, she took over although there was awhile when we thought they would have to re-intubate her because she was still so groggy from meds she wasn't taking enough air. So, another praise!!!!

The suction in her tummy is much clearer now. It isn't that awful green so much. They are talking about maybe taking that out today;)

Her urine output is now normal, more praises!!!!! Lots of wet diapers! Never thought I would be so thrilled to see pee....

Last night and this morning they heard good bowel sounds. Awesome again! Lots and lots of praises to our God for his mercy and quick answers to prayer. We are on cloud nine. I just am so super happy.

Today, they are putting in a PICC line (Peripherally inserted central catheter). It is deeper than a regular IV, it goes through the arm and ends near the heart. This will eliminate them having to find a new vein every day or two because they don't last. It is a more permenent IV.

She is now getting more than clear fluids through her IV. They make a special for her solution with whatever she might be low on that day. It has fats so that she won't lose any more weight.

She was rooting last night and so we gave her a pacifier, she is learning to suck it and it is really sweet to watch. I mistakenly thought they had taken her off morphine yesterday, but they didn't. They did cut her dose, but may completely cut it out today and give her tylenol.

Vitals look great. We are just waiting for them to finish putting in the PICC line. They have to xray to be sure the placement is right. So it may be awhile.

We do not know if we will have the cottage after tonight. Please pray that God would keep this available to us. I cannot imagine being that far away from Hollyse at night....

Thank you all, and that extends to my Aunts co-workers, my moms friends, my distant family for your love and prayers. We know that it is those prayers that are sustaining us during this time. Although we still have no answers, we are hopeful and praising God for everything single gift he has bestowed on us the last few days.

BTW-We did watch the Tea fire from the hospital roof top last Friday. It was scary, but the hospital is not in the fires way. The hospital was on generators and smelled like smoke. They had some issues with the filters, but it is resolved now. We need to pray for the many people who have lost their homes.

Soli Deo Gloria,
Michelle

Opps, one more thing!

Amanda has been so wonderful about handling many phones calls, texts messages, and emails. I wanted to tell her thank you. She is an amazing daughter and a wonderful big sister.

I love you Mandie:)

Mom

Friday Evening

Well today has felt better. I think in part it is that Hollyse has been moving a bit and I just see a little life in her. It is really tough when she is motionless all day as she was yesterday.

We do have praises! All the pathology reports showed ganglian (sp?)cells! Woohoo! So, no colostomy bag and that rules out total colonic Hirschsprungs disease AND if she does have it, then it is short distal Hirschsprungs. It would still require removing a segment of her colon, but a small one. We are actually praying this is the case. They did not biopsy that small section (don't know why except it requires a different procedure). She will have a suction rectal biopsy just above the anus tomorrow morning at 8:00 am. Prayers for this procedure to go well are appreciated.

Another prayer is for the edema she has. She has literally blown up with fluid. Her little head is no longer round, but lumpy from the pressure on which ever side she is lying. Her palms are puffy. Her tiny ears look really odd on her huge head. So prayers for her to keep urinating really well are needed.

They are still trying to get blood salts and potassium levels just right. They will not do surgery until this is straightened out. It is a constant adjusting of fluids so not real easy to get right.

As a mom I have to ask for prayers for her not to have any pain. She does have an ulcer now and although she is on meds for it as well as morphine, I still worry about her pain level.

I just love this little baby so much. We all do. We just really want to get through the next few days and get the results from this next biopsy. We really want to know the 'plan' and have a better idea of what to expect.

We have the cottage until Monday, so praise God again for that! I am also praying we know a lot more by then so we can plan accordingly. We really would like to stay close until she is in a better place and the cottages make it financially possible.

Please feel free to share our blog with others who are praying for Hollyse. We know you are covering us in prayer. It is no small thing and we are so grateful for those prayers. I just do not have the words to convey how deeply loved I feel and how much I am humbled by your concern for our sweet baby.

Michelle

Baby Love

I wanted to put some pictures up of our little blessing=)

Jill Martin took these photos the day after her birth.

I wanted to thank you all again for keeping our family, especially Hollyse, in you prayers,

Amandolin

Quick Update

We have not yet received the pathology report They are now saying it will be ready this afternoon. At this point they are saying they may hold off on surgery today because Hollyse is having some metabolic issues. She is retaining a lot of fluid as you can see from yesterdays picture. Today the fluid retention is much worse. They have given her Lasix and we are waiting to see if her urine output increases. So, while we wait on the report she has become super swollen which will push the surgery back more....frustrating.

She is on morphine and looks very comfy. She is moving more today too, which will help with the edema.

I will post as soon as we have anything new.

Of coarse your prayers are such a blessing. Please continue to bath our daughter in your prayers. It is all that she and we need from you.

She is gorgous! Maybe Amanda can get a picture up from the ones Jill took? I really like the one with the bonnet Mandie;) hint, hint....

Michelle

Hollyse Jane update for Thursday

I cannot really say we have anything new, rather just clarify a few things.
We have still not received a definative diagnosis of Hirschsprungs Disease for our sweet little girl. We are praying that pathology will have the results ready tomorrow. We are hoping that she has this disease as there are many other, much more difficult possibilities.

Hollyse has been a very sweet and patient baby thru all of this. She just seems to have a gentle disposition and we pray the Lord would grant us our petition of a life time with her to know and love her more than we already do. She is medicated and not feeling any pain. Her vitals are looking good as well. She is intubated and so we are praying that her lungs would continue to be clear and not develop pneumonia.They are still pulling a lot of yucky stuff from her tummy (poop). It is really difficult to seeing all that awful green come right out of her mouth.

There has been a few questions about if Hollyse may possibly have Downs from some family and friends. The doctors do not have any concerns with her having Downs.

It has been a roller coaster of a week. My emotions are all over the place. Dean is a 'stuffer' so he is great (insert major sarcasm here). We are both exhausted, heartbroke, yet joyful all wrapped into one very sloppy, messy package;) We know God has blessed us with this precious, sweet baby girl. But, we are broken to know she suffers.

Amanda has some pictures she will post tonight when she gets home. We were hesitant to put up NICU pictures but many people want to see her so we will go ahead and put some up.

We covet your prayers. Please pray. We have had a huge outpouring of love and offers. The thing we need, Hollyse needs, is your continual prayers. I am personally so comforted to know she is bathed in prayer. I have absolutely no hope but in Gods love, grace, mercy and that he knows the desires of our heart.

I will do my best to update as soon as we know anything new.

Many blessings,
Michelle

Hollyse Update #2

Hollyse just got out of surgery. It was not what they thought it was. The doctors think that it might be Hirschsprung Disease. We will not for sure by tomorrow.

If there are any questions please call me. My parents are busy with Hollyse and the details. So, please call me. And i thank you all for your concerns and help!

-Amandolin-

Another Update

My parents and little sister are still waiting at the hospital in SB. However, it is for certain that she will be having the surgery to correct the problem. They may do the surgery tonight but may do it tomorrow. The best case senario is two weeks in NICU. Please pray that this surgery goes well and that it will be in the best case senario section.

Thanks again for you prayers!

Update On Hollyse

Today my parents took Hollyse into the doctors. She was seen right away. The doctors are pretty sure that she has a bowel obstruction. Currently she is in Santa Barbara at Cottage Hospital. She was sent there because of the lack of room at the hospital in town. My mom says that they are doing some x-rays right now. We were told that she would most likely have to go into surgery. I am not sure when that will be, but we will keep the blog updated.

Please keep her in your prayers! We would be so thankful if you did.

-Amandolin-

Hollyse Jane Waldon

Our wonderful new sister and daughter is here!

She is already the object of all our affection. for a while, it seems as though we will all be fighting over who gets to hold her. We all feel so blessed to have her here with us!

We just wanted to share a little of our love and excitement with you all=)

Watching the socialist candidate for president

I am seriously going to....I don't know, throw up?
We get two channels, TWO. On both is that socialist that I am not voting for. The little bit I did watch was about, a joke. He is 'recalling' a woman he meet, I don't know where. But this lady is a widow with two children. She is a teacher, a home owner, and drives a car nicer than most. I noticed her glasses, nice ones too. I wonder if her insurance paid for them? But, this poor lady has to decide if she wants to buy a gallon or half gallon of milk, she wonders outloud to the camera "What can I afford?".

Are you serious people? Really? Have you thought this all the way through?

Since when do we consider a teacher 'poor'? A teacher has many benefits including great hours and a pension...I really could go on and on. I really better not.

Maybe the socialist should have given this 'poor' teacher some of the money he spent trying to brainwash America during the thirty minutes he paid millions for. Since he wants to spread the wealth, he can be the first to give up his home to buy her a bigger one.

Sheesh.

Long overdue post!

I haven't posted in months. Actually, Amanda is the one who keeps the blog updated somaybe I'll blame her;)

Nothing much to report. I am very, correction, VERY pregnant. I still have 8 weeks (or so) to go. We have been doing a lot of work around the house that just needed to be done. I shampooed the carpets and did a considerable amount of painting. In fact, the nursery is nearly finished. I am super happy with it. I really wanted something feminine and classic. I will post some pictures soon.

We started school the 16th and it is going well. Carter just loves kindergarten! He will work until he has the wiggles in the worst way. I often have to force him to go outside and let off some steam. Noelle is just, well, e-a-s-y. At this point in time I am having to skip things in her books because she knows them. Why have her do busy work. Jacob is moving along, although he only really wants to do science. Hmmm, he really likes grammar too so that rounds things out some. Amanda has really picked up the pace and is doing really well too. It's her last year. I am happy and sad about that.

The picutres above are from Carters birthday. In this house you are allowed to choose your birthday dinner. Carter chose Sushi. I know that seems, errr, strange for a little guy. But that is truly what he wanted. The pictures are actually backwards. In the first picture he is being served dessert. He wasn't real excited about it. But in the second picture he is eating Sashimi. He doesn't like the rolls, he just wants the fish. I gotta tell you, when he picked Sushi for dinner, everyone in this house cheered.

Except Noelle, she doesn't care for it.

He is five years old now! That makes me kinda sad.

I think I'll go have a good cry.

I might need a cookie too.

Michelle