I didn't punch any Dr's in the face...

So that is a plus. I had my appointment in Indy yesterday. I was very sad all day and on the lonely ride up there. Once I got in the ultrasound room I just kind of shut down. I didn't care to much about what was on the screen, same old same old. 

The fluid did go up, though no one knows why. (Shock?) So he is making urine. We will find out when he is born if it is "quality" urine and actually filtering or if it is just basically water. 

Then the MFM for the day (who just happened to be the director of the department) came in to chat with me. He said they had not yet received the recommendation from the urologist, but he called about it during our meeting and expected in a few days. He is then going to send me a copy and follow what it says to the letter. Since the urologist said delivery at 36 weeks that is what I am thinking we will do at this point...hoping to get a call on Monday to set up a new c-section date. 

All in all not much has changed, but my attitude is a lot better. I think I will make it another week and a half! 

And I am paying these people for...what?

Well the final results are in. Drum roll please...Not a single doctor has a clue what is going on with my baby/fluid. 

The "specialists" aka the maternal fetal medicine OB's at St. Vincent think it must be that the kidneys have failed because...well they can't find anything else wrong. The placenta looks normal, it doesn't seem I have ruptured my membranes, and the baby looks happy. So since he already has a kidney issue, this must be the problem.

The urologists and nephrologist say that the kidneys actually don't look that bad. There is no reason they should be working less today than 5 weeks ago. So they don't know what is wrong, but the nephrologist says that the kidney fate (whatever it may be) is sealed at this point and there is no reason to take him out earlier. 

When will we deliver? Don't know. Cincinnati originally said 37 weeks. The Ob's want him as big as possible so 38 weeks (due to previous c-sections) and the urologist said 36 weeks. Today I am 34 weeks and this feels pretty good. Tomorrow would be nice...

Personal side note: I am very unhappy with these findings. I hate everyone I know right now for one reason or another. And if at my appt on Friday they try to tell me 38 weeks I am going to scream in their face and punch them. 

And then there is Monday

Yesterday I was expecting to have an ultrasound, see the doctors and probably hang out a bit more on the high risk unit. However, one of the MFM docs came in and said there was no reason for the ultrasound. There wasn't going to be any fluid and we didn't need to look and see that. Then he said the decision is mine on how to proceed. They could keep me in the hospital on bed rest and hooked up to the monitors 24/7 for 4 weeks, but he couldn't promise that even if the cord prolapsed that they could catch it. So that would be more or less pointless. Or I could go home...I am home now :)

Before leaving Indy I did insist on seeing the pediatric urologist and so glad I did. He completely agreed that the only way to save kidney function is to deliver now. Today or tomorrow he is going to look at my ultrasounds and talk with the MFM's. As long as Ian's kidneys are dilated (which they were in the last ultrasound) and the MFM's don't think it will put him at risk to take him early then we should have him here by the end of the week. James and I are very happy about this. We have been trying for days to convince everyone to save his kidneys, but no one was listening. Now we have someone on our side :)

Today I am suppose to go for an NST at my local OB's office. My mother in law is going to watch the kids and hopefully paint some. We are still working to finish the older 2 kids bedroom. It has another good week to go...

High Risk Unit is no fun!

Lets start with Thursday...My friend Lisha and I headed towards Indy for an ultrasound and to see what the Maternal Fetal Medicine doctors had to say about my low fluid. During the ultrasound we find out that the fluid has dropped to 5.3, one of his kidney's has gone cystic, but his bladder is not bigger. Meaning that either my water broke or his kidney's have stopped functioning. I was hooked up to an NST and Ian scored 10 for 10 on his biophysical profile. So I am sent home and told to see my regular OB for an ultrasound on Friday.

Friday...My OB's office calls and said the MFM docs called and they now want me to head to Indy immediately. I call James, he comes home with my mother in law so she can watch the kids and we can go. I get a second call from my OB's office saying, Oh by the way, pack a bag. Most likely they are going to want to keep you. So I frantically pack a few things and off we go. When we get to St. Vincent I received another ultrasound where the fluid was 3.3. They tell me that I will be staying the weekend on the high risk unit for monitoring. When I get upstairs to the unit I am checked to see if my water broke, but it did not. So I am hooked up to the monitor and we wait.

Saturday...Lots of sitting around. I go on the monitor at 6am, 2pm, and 10pm. Other than that I just watch tv or go for walks around the hospital. I did get to talk to the MFM doc for the weekend, he said that he feels better and better about keeping Ian in rather than delivering him early. No need to add preemie issues on top of the issues he already has. Then later I spoke with a neonatalogist who agreed and said he is trying to get ahold of the pediatric urologist (same guy that did Dill's scope) to see if he thinks it will help the kidneys to get Ian out sooner rather than later.

Sunday...James stayed the night at the hospital with me, but he is gone now and I miss my children. We quickly spoke with the MFM doc who still told me to stick around and be monitored, I will receive another ultrasound Monday, we will hear from the pedi urologist and then discuss what to do from there. Also during Ian's last monitoring session he had 1 variable. Where his heart rate dropped, the nurse said they see this a lot when the amniotic fluid is gone because the baby will step on their cord for a bit. However they don't get concerned about just 1, so we will see how he does tonight.

My thoughts...James and I are very concerned. (Did that need to be said?) It seems like the doctors are trying to get him as big as possible so he can be put on dialysis when he comes out. We are wondering if it wouldn't be better to get him out earlier and see if we can keep some kidney function in the one kidney so he doesn't need dialysis. We are frustrated with the doctors decision. My local OB said he would deliver if the fluid got to 2 or 3, he also said he would think getting Ian out earlier would be better for his kidneys. If all the fluid is gone tomorrow and these doctors refuse to do anything I will be calling my doctor to see if they have other thoughts. James is going to call around to a couple different hospitals and see if he can get any kind of second opinion. I want Ian to come out as healthy as possible and will do anything I need to.

Late July update...

Always have to add a picture. And this just happens to be my most recent one. I have GOT to cut that boys hair, with the flower and necklace he is not looking to manly. We are thinking about going a lot shorter, but it is so soft and beautiful it will be hard to get rid of...makes me teary just thinking about it. 

Now on to updates. As for Dillion, he had the general anesthesia with scope and then a VCUG. Turns out he has a couple little things going on, but nothing that is causing problems or bleeding. So really we know nothing. Except it is really hard to watch nurses in scrubs take away my baby and put him to sleep even if they are blowing bubbles and pulling him in a play car. However he did really well with everything, was up and eating a ton before we even left the hospital and has hit a huge mental growth spurt. Learning so much so quickly!

Then there is Ian. Everything was going great...3 weeks ago the fluid was around 15cm. Then the next week it dropped to 8.6, last Friday it was 7.1 (aka low.) There are two possible causes...1. he is growing and so is the obstruction so the urine is not getting out like it was before or 2. his kidney's are failing. Obviously we are hoping for option 1. I go back to Indy on Thursday and we should know more after that appt and ultrasound. My OB said if his fluid gets to 2-3 cm they will deliver him. So we may be meeting this little guy sooner than we had thought (or hoped.) Keep him in your thoughts.

And finally a general family update. We have been working on the kids new room forever. All 4 of us have been sleeping in the master bedroom since I can remember at this point or so it seems. But we are getting very close to finishing. The new ceiling is in, the walls are spackled, everything is being primed on Thursday while I am at the doctors. Then hope to paint this weekend...well maybe we have a photo shoot Saturday so it might wait till Monday. At this point we are trying to get everything done as quickly as possible in case Ian decides to show up. Here is to hoping I am not one of 5 in my bedroom! 

Dillinger is 18 months!

 The picture and title pretty much say it all. My baby is toddler, albeit a very cuddly toddler, but still he is no longer a baby.  Next time I look up he will be starting school just like my other baby did. Guess I am doing something correct, this is the point of mommyhood right? To help them grow up...

All 3 of my children

Well if you have just joined my blog recently you may not realize that I have a daughter who came before my rotten boys. She is sweet, perfect, and beautiful. (pictured above) :)

Now on to the boys...Friday morning we set out at 9:30 for a very long day. First my doctors office for the second of the steroid shots for Baby Ian's lungs. 10:30 - Dr. Rink the urologist to talk about both the boys. He decided Dillion needs to be checked out more throughly and will be doing so next Friday. The Dr will be scoping him while under general anesthesia to see if he can locate a problem. Possibly doing a VCUG if they find something. Scary to think my 18mo little boy will be put to sleep, but I hope they find something and can make him better. 

As for Baby Ian the urologist said after birth they will do a series of test. Multiple blood tests to see how his creatinine level adjusts, VCUG which is dye to see how his kidney's/bladder work, Ultrasound to see how dilated everything looks when he gets out, and a nuclear scan which is dye injected somewhere to test something...Yes I received way to much information that day, but I am sure they will tell me again before they do it.

Then at 1 we went to St. Vincent to tour the NICU and talk with a neonatalogist. His name was Dr Michnov (?) Very nice man, sounded like Arnold Schwarzenegger.  He did say that Ian would need to be in the NICU for at least one day so they could monitor how he pees. But really they are expecting him to fair pretty well considering his PUV. After that first day and all the scans they will do the valve ablation surgery and hopefully he will get to come home the same time I do. Of course this is all in a perfect world, but hey why not hope for the best? 

All in all we learned tons and feel a lot more at ease with the whole situation for Ian.

Side note - James and I didn't have time to eat lunch during all this hurrying around so after the NICU we decided to eat at Golden Corral around 2:30. Came home, cleaned the house like a madwomen and at 6 came down with a hard case of food poisoning. I was sick and didn't eat for over 28 hours. My OB prescribed some phenergan which helped me sleep and stop puking after 2 doses. Today I should of spent recovering, instead I finished my fodant cake and had a family cookout with MIL.

Happy 4th to all!  

Mass Emailed, but wanted to share with blog friends as well

  I just wanted to give a quick happy update on Sebastian James (we officially agreed on the middle name!) 

For anyone who needs background information we found out at 19 weeks that he has Posterior Urethral Valves (PUV). After an amnio, bladder tap, and a visit to the Children's hospital of Cincinnati his prognosis went from grim, to wait and see. Now that we have waited 9 long weeks things are looking as good as could be expected. His lungs are maturing, his kidney's are not failing as far as we can see from the fluid levels and the size of his bladder is reasonable for what he has gone through. Today I got the ok to just see my regular OB every week instead of switching between Bloomington and Indy as long as everything continues to look ok. Also we set a date! At 37 weeks on August 25th I will have an amnio to test for lung maturity, if they are ready we will have the C-Section at St. Vincent on Thursday August 26th.

Baby Ian will be evaluated by the pediatric urologist and have a renal ultrasound that day. If he is big enough and stable he will have surgery on his third day of life to correct the obstruction. There are still a lot of what ifs and we don't know what shape his bladder, kidney's or connecting tubes will be in or how they will function until he gets out. But we do know his lungs have had time to develop and he should be born a wet, breathing, screaming mess. What more could we ask for?



Also as far as Dillion goes...we still don't know what it going on. But he also goes to see the pediatric urologist, July 2nd and we hope to find out more then. His rickets Dr's do not think it is a kidney stone or anything to do with that diagnosis and his pediatrician doesn't think it is bladder or kidney related. Hoping it is nothing :)

Positive thoughts go a long way!

We are back from Cincinnati with news we were not expecting! Let me start at the beginning of the day...

James drove over 3 in the pouring rain and sat in rush hour traffic to get us there. We were a bit late, but were able to get in for the ultrasound first thing. The tech spent over 45 minutes scanning from head to toe and back again. She commented many times on how cute he was with his little hands in front of his face or how he stuck out his tongue. Cracked me up, all I saw was a white outline that I didn't want to get to attached to in case we received bad news. But she was very sweet. Then a doctor came in to review everything and we were sent on our way to the MRI. 

The nice little lady in MRI asked if I was told how long I would be in the machine...uh no a few minutes? At least an hour she says! And sure enough I was. It was loud, and uncomfortable, but the images we saw from it later were well worth the marginal discomfort. 

Afterwards James and I quickly grabbed some lunch and headed up to the Fetal Care floor of Cincinnati Children's Hospital not knowing what would come next. We met with a genetic counselor who took a family history. When asked if both my parents were living I nearly said yes then broke down and referred the question to James. He took my hand and explained to the lady how fresh the wound was and how she died. Honestly that was the only time I cried all day. 

Finally it was time to meet with the team of Doctors. There were 8 people in the room other than James and I. A fetal surgeon, neonatalogist, pediatric urologist, main doctor guy and various nurses. They were all VERY nice and answered any questions we had. Which wasn't many because we have researched for the last 3 weeks, but it was nice to bounce some things off of them. 

LOL, are you ready for the results yet? MRI shows the lungs look well developed for Baby Ians gestational age (which is 22 weeks tomorrow.) Amniotic fluid is normal 12.3 (Normal is 8-20) The kidney's still looks large, but show no cysts or bright spots that would indicate failure. As for the protein that we were told indicates kidney failure, it doesn't. The level was high, but it a mute point, no big deal. The only problem we are guaranteed of at this point is the bladder. It could be as simple as an oral medication or sometime more intense like cathing the baby daily. We will just have to wait and see. Until he is born we will go for weekly fluid and kidney checks most likely 1 week at my OB and the next at St. Vincent, but that is up to the maternal fetal medicine Dr. 

When Baby Ian is born, we will deliver via c-section around 37 weeks at St. Vincent in Indy. He will have a renal ultrasound the day he is born to check his bladder and kidney. They will monitor how well he pees. And as long as he is a good weight he will have surgery before we leave the hospital to remove the blockage. Best case scenario we are done at that point...he would need to be monitored for life to make sure his kidney's continued to function and be on medicine for his bladder. But it could be as simple as that! 

There are still many possible problems that could arise. His kidney's could become damaged in the next 15 weeks and things would be much different. But at this point we are very optimistic. There is a great chance I will get to bring home my Baby Ian the last week of August! 

Keep the positive thoughts coming!

Cherish the time you have with them...

This Mother's Day is my 7th as a mom,
My first without my mom,
and most likely my only as a mom of 3 living children.

We are spending the day planting flowers, eating yummy food with family and just not rushing! It seems all to often there is somewhere to be or to many things to do and we don't take the time to cherish the ones we love. Hug your kids, love your mom, and just take some time today to think about what Mother's Day means to you. How would it be different if you weren't able to call your mom to wish her a happy day? Or weren't able to hug all your children? Do it today, no one is promised tomorrow.

"If roses grow in heaven, Lord, pick a bunch for me ~
Place them in my Mother's arms & tell her they're from me ~
Tell her that I love & miss her, & when she turns to smile ~
place a kiss upon her cheek & hold her for a while ~
Because remembering her is easy, I do it everyday ~
There's an ache within my heart that will never go away.
Happy Mother's Day in Heaven"

Scheduled for Cincinnati

Tuesday May 11th James and I will go to the Fetal Care Center in Cincinnati. 

8am Ultrasound
9:30 Register for MRI
10:15 MRI
12pm Genetics
12:30 Nurse consultation
1pm Team Meeting with the doctors who will give us all our results and options

By the end of that day we should have a very good idea of how things will go from that point on in the pregnancy. Keep us in your thoughts.

On a  great note, today is Mother's Day Tea at Lily's school! Dillion and I are getting ready and will head up there in just a little bit. Lily keeps telling me I am going to love it and cry. I imagine she is right :)

(BTW sorry for that last blog being such a downer...But I couldn't sleep and that is how I felt. Can't promise there won't be more like it.)

Bad news baby

Today as I was driving Dill to the hospital for his renal ultrasound I saw a van in a parking lot for sale. It said "Wheelchair Accessible" on the window. I happened to be on the phone with my sister and she confirmed that it was my mom's van. Dad is trying to sell it is since mom is dead and doesn't need it anymore. I cried most of today. The thought kept coming to me that if she was still here...with a trach and on dialysis at least I could talk to her. I could tell her about Baby Ian and how his doctor called today and told me they won't be putting shunts in. That they are sending us to the Fetal Care Center where most people choose to terminate at this point. 

Mom would rub my head and tell me that life isn't fair. I use to get so angry when she would say that. But the older I get the more I realize how true it is.

Lately Lily has started telling me that it isn't fair when I punish her for something. I respond with "Life isn't fair." Sometimes I try to explain to her that she gets punished more than Dillion because she is older and he doesn't understand. And other times I want to tell her how horrible life is once she gets older. That she should be thankful that she is young, carefree, and doesn't have  a disease like either of her brothers. But I don't, one day to soon she will find out for herself all the things that truly aren't fair in life. Why is it fair that with a 50/50 chance Dillion and I got rickets, but my sister and Lily didn't? How is it fair that my mom died at age 53 after a very hard life, while others in her family will life forever and have to deal with an 1/8 of the sadness and pain that she lived through? Why is it fair that my baby will mostly likely die even though I am a good mom, who tries so hard, does good things, feeds good foods, reads books, teaches them things...and my half sister has 3 healthy children all being raised by other people because she failed them all? Why did James have cancer 3 times? Why is life not fair? 

New news 5/5

Today I visited the new pediatrician with Dillion. He is going to be a great fit for our family. Dills liked him, and he normally strongly disliked doctors, nurses, lab technician, people in general.... :)

Then we had a fluid check at St. Vincent. Everything looked about the same, I still somehow have fluid, the bladder was big again meaning the kidney's are still working. However the Doctor had a level back from the bladder tap that he didn't on Monday. It showed elevated proteins, meaning Baby Ian's kidneys are beginning to not work as well. Dr Conners thinks we need the shunts without question to save the kidney's. He is calling Dr Dumbledoor (ok I don't know what his name is exactly...Looking it up now) Dr. Timothy Crombleholme at the Fetal Care Center in Cincinnati, who BTW previously worked at CHOP which is the best place to go for fetal care, but travelling to Philadelphia is a little out of the question right now. Anyway, the hope is that they will set an appointment up for early next week to consult with us about shunts. They REALLY want us to be out of fluid first, but it is just not happening at this time. Which is actually good for the lungs, but bad because they don't want to do the surgery yet which compromises the kidney's. Also I don't remember the word he used, but the kidney's are now showing up with bright spots. Something genic maybe? If anyone knows tell me what the word is and what it means. Driving me nuts. But it was not a good thing.

So tomorrow at 8:30 Dillion goes in for the kidney ultrasound searching for stone's. Hopefully I will hear from Cincinnati and we can get something scheduled. Poor James is worrying so much and asking every doctor he can find if this is getting done fast enough or if there is a way to quicken the process. At this point every moment we waste is a moment that his kidneys are getting worse...Let's go people!

Good News on Baby Ian!!

Good News, Can you believe it? I was floored when the Doctor called me this morning! He said Baby Ian's kidney functions came back good (they are very stingy with numbers up there, so I get word estimates.) At this point the Dr seems very optimistic. He said there will be life long health problems, but he expects a good outcome as long as we can get the shunts put in soon. So ultrasound with AFI (Amniotic fluid index) check on Wednesday and hopefully I will have a tentative date to go to Ohio.

Tomorrow I am meeting with a new pediatrician my nurse cousin recommended. She thinks he will be able to keep good tabs on the boys issues. He currently has a child dialysis patient, so if it comes to that, then I feel like this pedi is who we want to be with.


Here are the pictures from the ultrasound last Wednesday...He looks just like Dillinger!

LoL, St. Vincent also doesn't like to give me full body shots, so here is my representation of how Baby Ian's bladder looked before they drained it last week. A normal sized bladder should be 1/4 of that size.

Keep hoping and praying for more positive results this week :)

Boys updates

Unfortunatly nothing to report on Baby Tres except, you can now call him Baby Ian :) We are naming him Sebastian Blake and will call him Ian.

I was hoping to get his kidney function results on Friday but no. I will call on Monday and beg for them. My MIL will be coming with us on Wednesday for the fluid check. She says she is going to yell at the Dr's until they do something immediatly. She also called a friend with connections and we are going to get a second opinion at Methodist hospital next week.

As for Dillion we went to his Pediatricain yesterday morning. He says he doesn't think Dill really had a UTI, because the culture they grew came back with bacteria that is found on skin rather than in the bladder. So he think it was a kidney stone. Next Thursday Dillion goes for a renal ultrasound. If that shows stones then I will need to talk to his ricket doctors about changing his medicine dose because they cause kidney stones in high doses.

Dillinger...

This is my last story for today and I think everyone will be fully updated.

Last Thursday night (April 22) after returning from our disappointing ultrasounds I was changing Dills diaper and found blood coming out of his penis. OMFG was all I could think. I told Lily to grab my phone I was hoping it wasn't to late for our pediatricians after hours clinic, but it was. So off to the ER we went. We were there all night, the Dr wanted to do a catheter. However I know from his rickets experience that they have bags to put on little boys that aren't invasive. So I told them to get one and I would put on myself. That is what we did.

After a few hours he finally peed, they looked at the urine and sure enough he has a UTI. Which I did not know at the time is very uncommon for little boys. (I remember getting UTI's when I would have to many bubble baths, so I figured it was the same for boys...not the case.) The Dr prescribed an antibiotic and told me to follow up with his pediatrician to have some testing started. Tomorrow we go to the pedi to make sure the infection is gone, then he will write the orders for a dye/xray thing. The thought is that he has urinary reflux. (Baby has PUV, Dillion would have VUR, getting all this straight? ugh) It is possible for Dillion to have the same thing as Baby Tres, but to a lesser degree. Hopefully we will find out soon. I am tired...

Baby Tres...

In January James and I found out that I am pregnant with the one we lovingly call "Baby Tres" being as he is our third child. We planned on him/her having that name until birth since we were not going to find out sex. However at my 19 week anatomy scan my OB found a problem. She said the babies bladder is very distended (large) and honestly she doesn't know what that means. So we were sent to Indianapolis St.Vincent hospital that very same day for another ultrasound. (Mind you everyone who read my last post...my mother died on Tuesday April 20, the ultrasound day is Thursday April 22.)

In Indy they agree that the bladder is very large, about the size of Baby Tres' head. They tell me at that point that he is a he because the problem he has only happens to boys. It is called Posterior Urethral Valve (PUV) Syndrome. A valve that would allow a normal bladder to drain is backwards so all of his urine is backing up to his bladder and kidneys. If it is not stopped his kidneys will burn out and he will need dialysis and eventually a kidney transplant. On top of that after a certain point in pregnancy the amniotic fluid is made up entirely of urine. If the urine is not getting out then there is no amniotic fluid. A baby needs this fluid especially between 20-24weeks to ensure their lungs develop properly.

The Dr wanted to do an amniocentesis that day to check for chromosome abnormalities (that is present in 10% of PUV cases) and also to see what his kidney functions were like. Unfortunately we could not do it that same day because I am on Lovenox (blood thinners) and it would cause a bleeding risk. So we schedule it for the next day. (Insert here a story about Dillion that happens Thursday night...I will get to that in another post.)

Friday we go for the amnio which is actually meant to drain of the babies bladder rather than just a sample of amniotic fluid. It was very painful, much more than the amnio I had with Dillion since they had to hit a specific point on the baby. The Dr did not think she got into the bladder like they were hoping and when the results came back sure enough she was right. They only got amniotic fluid. We were able to test for chromosomes that all came back fine, but could not find out how his kidney's are doing.

The reason for the kidney functions are that there is a fetal surgery that can be done where they put shunts in Baby Tres' bladder to let it drain until birth. This will hopefully save the kidney's and allow enough amniotic fluid for the lungs to properly develop. If the kidney functions are to low then they will not continue to make urine and the shunts are pointless.

Yesterday, Wed April 28th, I went back for a fluid check and another bladder tap. My fluid was lower than last week, but I still have some (20weeks.) Also the procedure was successful, the Dr was able to see Baby Tres' bladder get smaller and knew he had drained it properly. Now we are waiting on the kidney function test. Next Wed I go back for another fluid check. The hope is that the bladder will be full again, meaning that the kidney's are still making urine.

So to recap IF the kidney test comes back with good functions then we will travel to Ohio and have shunts put in Baby Tres' bladder. If they don't then we will not be candidates for the shunts. At that point there may be the option to do weekly amnio infusions, where fake amniotic fluid is put in to help the babies lungs continue to develop. The Dr told me if nothing is done his kidney's WILL fail and I WILL run out of fluid before 24 weeks and his lungs won't develop. With the drastic fluid change in last week and this week I will most likely be out by the next check.

No matter what happens Baby Tres will never be completely healthy. At this point his bladder and ureters have been stretched so much for so long that he will have lifelong issues. But we are trying to limit those issues as much as possible. Please keep us in your thoughts.

What's new?

I know I haven't updated my blog in forever, but a new friend of mine said it would a nice outlet. So here goes.

About a month ago my mom went into the hospital with a UTI that had gone to her blood along with a blood clot. 2 weeks later they thought she was getting better and were about to send her home when she started having breathing problems. On Sunday April 11 she was moved to the ICU and put on a ventilator by the end of the day. That was the last time she ever spoke to me. First she told me that Baby Tres is a boy and then that she never wanted to be on a vent. However once she couldn't breath she gave in. The next week me, my sister and dad stayed at the hospital most of the time. There were ups and downs. During that week her kidney's failed and she had to be put on dialysis. Also her heart rate dropped a couple times and dad had to make the decision to resuscitate if it totally stopped. That weekend I couldn't take it anymore and went home to be with my family.

Monday things were not looking any better, her chest was still full of fluid (which was what was causing her breathing problems) and she showed no sign of being able to come off the ventilator. The Dr's talked to my dad about putting her on a trach indefinitely. I tried to convince him that is not what she would want. On Tuesday he made the hardest decision of his life...to take her off all the machines and let my mom go. And that is what they did. That night we called all her friends and family. Everyone said their last goodbyes. She was taken off of the dialysis, given a morphine drip and then the ventilator was removed. Mom breathed on her own for quite a while as a few of us sat at her side. I could tell when it was coming to the end because her breathes stopped coming as often. I told her to sleep well and within a few minutes she was gone. I stayed by her side and held her hand for a long while until my dad finally took it away. That was the last time I ever touched my mother. That was April 20th. We buried her April 25th...that was the last time I ever saw my mother. Lily spoke at her funeral, I am very proud of her.

By the way Baby Tres is a boy. But more on that later.

Capturing the love of 5 Generations

New Baby, New Business Cards

That's my new baby! Hanging out in utero for the next 6 months. 
We will not be finding out the sex of the baby until it's birthday,
so that should be exciting :)
Currently we are calling him/her Baby Tres.

 

Next are new business cards!

James and I are heading full force into the photography business. 

This weekend we have a 5 generation shoot. 

Later in the month we are doing a gymnastics competition, then 2 family shoots all in 1 weekend.

Should be fun :)
My main focus is on "New Life" so these are solely my business cards.
Life is exciting!! 

(Sensitive information removed to keep away the weirdos)

16x20 Canvas

I am in love! There is just nothing like a beautiful canvas with a picture I took of my babies 1 year Smash Cake picture on it.

Feb 13th - First Newborn Session

February 12 - Frosty Cold

It's cold outside! I did however brave the elements today for these pics...

Feb 11th - Valentines Cupcakes

Today Lily is having a Valentines party at school.

I was up till 11:30 (yes that is late for me) making cupcakes.

Our St. Louis Trip - Day 32, 33, 34, & 35

Where to start? I guess by saying we have answers and all-in-all the hospital stay wasn't to bad. Dillion and I got to spend lots of quality time together. I saw my old nurses and made some new friends. Not to bad at all.

The diagnoses was pretty much what I was expecting. Dillion does have X-linked (aka hereditary) hypophostaphtemic rickets. I have a 50/50 chance of passing it on to any of my children, guess he got the short end of that stick. I am glad to know that I didn't cause this by nursing him. The Shriner's doctors said my milk should be the same as anyone else's.  On the downside he will have to deal with this the rest of his life. Dillion is on 2 different medicines until he stops growing around age 16. We will go back to St. Louis every year and stay for a week. Then every 3 months we will send out samples of Dillion's bodily fluids to measure how his body is processing the medicines. The bright side is they no longer put braces on the children's legs like I had. Also they are working on a shot that temporarily cures the rickets and causes their bodies to correctly process vitamin D. It has worked in lab mice and is now being tested on humans. They said soon I may be asked to try it myself and then on Dillion. We will cross that bridge when we get to it.  

Here are a couple memorable things that haven't changed since I was a kid. They still put the patients on special research diets to measure every bit that goes in their mouths. You can see him holding his diet ticket above. And below is baby jail. The crib he slept in is the same one I slept in 25 years ago! And once it is closed up there is no getting out! The rails meet up with plastic and he is nice and safe...

He loved the wagon rides! We couldn't walk down the hall without someone stopping us to talk to the cute baby.

Finally our new friends. This is one amazing mom and child combo. The little girl was born at 24 weeks and 1lb even. Yet she is here today and has a fierce little spirit! Her mom is just like me, she has rickets and Hyperparathyroidism. Now that is rare. I believe she said 5-10 people on Earth. It was so good to meet her. Made me feel almost normal.

Thank you to everyone who sent cards, texts and thoughts this week. We appreciate you all!

Day 28 & 29

Day 29 - Lily

Day 28 - Reading Charlotte's Web as a family.

Day 23 - Maternity Shoot

A literal Documentation on Life. This precious baby will pop out any day!

Day 24 - Project 365

Our friends Lindsay and Derrick came for dinner Saturday

night and brought these beautiful flowers. 

Day 19 & 20 - Project 365

Dinner - Day 19

Can't decide if I like the color or B&W better...you? - Day 20

Day 13 and 14 - Project 365

Bright Idea

Everyone needs at least one red wall in their house.

Here is mine. 

Dill's Lunch - Day 17 - Project 365

Dillion's lunch yesterday. It was so colorful. 

Day 18 - Project 365

I already took my pic for today but it is a surprise. I will try to take another of some friends coming over later and share that one :)

Hello? - Day 15 - Project 365

St. Louis here we come!

Sorry I have not been updating my 365 Project these last couple days. Our family is adjusting to lots of new news. But I am taking the pictures each day and will post soon! 

As for St. Louis...last month right after his first birthday Dillion was diagnosed failure to thrive. He was under the 5th% for height and weight. Regular blood work was run to see if he was malnourished, however all of his electrolytes came back fine. I asked for additional blood work to check for rickets as my mother and I both have it. Many of his levels came back low. After which x-rays were ordered that showed he does have sign of rickets in his bones. 

What is rickets? Many people know it as a "old" disease when children did not get enough calcium and their bones (mainly the legs) began to bow in. However the kind my mother and I have is hereditary. It is passed along the X chromosome. Meaning any of my sons have a 50/50 chance of getting this disease. It is sometimes called Vitamin D resistant rickets because our bodies do not process vit D correctly and instead just expel it. Vitamin D is essential in the absorption of calcium which we all know is what makes our bones grow big and strong. As a result people with rickets do not reach their full height potential. All of my family is 5'10'' and up. My mother is 4'11'' and due to advances in medicine I was able to grow to a whopping 5'3''! 

What does this mean for Baby Dills? Currently we are unsure. His pediatrician believes Dillion's rickets is the old school kind and that my milk was insufficient. This would mean he needs to be on high doses of calcium and vitamin D until his body responds and repairs itself. No long term harm.  I have been in contact with my former hospital, Shriners in St. Louis. They have told me that with the rarity of rickets it would be highly unlikely for my sons case not to be hereditary. Though we are still holding out hope. If it is the kind my mother and I have it will be a life long issue. He will take medicine throughout his childhood. Most likely have braces on his legs and in many cases (mine and my mothers) he will need surgeries on his legs to help them grow straight. 

We are going to St. Louis the first week of February for a week long evaluation at Shriners. They will put him on a special diet to measure his calcium/vit D intake, draw blood and collect urine to see how his body is processing it. After which we will know what kind of rickets he has and how to treat it. 

The reason I wrote all this was A. to get it off my chest. I can only talk to my husband so much before he both cry :( but mainly B. to say thank you to some amazing people. I have been in contact with the Bloomington Stonebelt Shrine Club. They are a group of masons who sponsor children to go to Shriners hospital. Although the hospital itself is totally free the expenses of going there are not. We will be driving about 250 miles, James will be staying at a hotel for 4 nights, and we will have to eat approx 15 meals a piece at the hospital. This really adds up and the Shrine club is willing to pay all of those expenses (within reason of course. We won't be putting James up at the Hilton!) So thank you to Dave and the Stonebelt Shrine Club. 

Please keep us in your thoughts as we embark on this journey. 

Healthy, Happy, Living Day 12 - Project 365