Tag Archives: renal agenesis

9 months

30 Aug

Today marks 3 MAJOR milestones.  I am 36 weeks pregnant! I am officially 9 months pregnant!  AND, I am in my last week of pregnancy!

I cannot believe that we have made it this far.  It is so surreal.  I have wanted this for so long and I am just amazed that this dream we have had is finally coming true.  Even though I believed that God would keep His promises, it was so hard to see how that would look and when it would ever happen.  I felt weary and afraid for so long.  I no longer feel that heaviness that weighed me down for such a long time.

Right now, I am feeling crazy for a whole new set of reasons, though.

I had a pretty rough weekend.

When I woke up on Friday, I was having what I thought was contractions pretty consistently, but not really painful.  I feel so clueless about what labor feels like because the only time I have experienced labor or anything similar has been during miscarriage.  This was in no way even similar to the pain of what my miscarriage last summer felt like, but I was having tightening and some very mild cramping, so I assumed that it was contractions.  I wasn’t concerned though because I knew that it was normal to have some contractions and not be in labor.  The contractions stopped after a few hours.  I was really sick all day on Friday as well.  I puked everything I ate and just felt really horrible.

Saturday, I woke up to the same feeling of what I thought was contractions.  They weren’t any stronger than the day before and so I wasn’t worried at all either and again it stopped after a few hours.  I had more stomach issues and felt pretty tough again all day.  Also, I lost some of my mucous plug.  That afternoon, I got one of my crazy headaches.  I tried Tylenol.  I tried a cup of coffee.  I tried a bath.  None of my usual tricks worked at all.  So, finally, I just had to put an ice pack on my head and deal with the pain.  The headache finally went away at about 4:30 am and I was able to get a few hours of sleep.

Sunday, the same contractions.  But, on Sunday, I noticed the cramping pains were not really going away.  It was happening off and on throughout the whole day.  Sometime in the afternoon, I realized that baby wasn’t moving near as much as usual.  Up until this point, she has been moving so much and so forcefully that it is at times painful.  On Sunday, I definitely still felt her move and hiccup every so often, but her moves were much less frequent and forceful.  I was trying to be calm and not be concerned.  I did a lot of things to try and get her moving, but she just wasn’t budging much.

As the evening wore on, I was trying so hard to balance being a crazy person and also not being stupid by not calling the Doctor.  Finally, the emotions of it got to me and I broke down bawling.  I hadn’t told my mom or Arturo up until this point.  They both said I should call the Doctor to be safe.  So, I called his office and they said they would page him.  He called me back in less than 5 minutes and told me to go to Labor and Delivery.  I really didn’t want to go, but in the end, I am glad we went.

As soon as we got there and hooked baby up to the monitors…she started moving like crazy and was doing great.  She is such a stinker.  I felt so much better feeling her move again.

I was having some very small contractions every few minutes, but my cervix was closed, so after a little bit of monitoring baby girl and having me chug some water to slow down the contractions, they let me go home.

We had another appointment yesterday morning and had an NST done.  It was our last NST before she will be born.  Everything went well with her.  My blood pressure is staying pretty stable.  We are getting some high readings from time to time, but in general it is staying under the numbers my Dr. wants.  My labs were a little bit elevated from last week, but not enough that he is making me have her now.    Thursday, we will have our last bio-physical profile ultrasound done and get all the final details about the C-section next week.

I am telling her she HAS to stay put over the weekend because my Dr. is going to be gone for Labor Day and I DO NOT want to have one of the other Doctors in his practice deliver her.  I do not trust them.

So, sometime next Tuesday, we will get to meet this girl who we have been longing for and praying for all these years.  I am unbelievably overwhelmed by the reality of that.  Thank you Lord for your faithfulness.

 

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sweet dreams

20 Apr

The other night I had a dream that I was taking piano lessons from Pharrell Williams.  Ever since then, I have been wanting to buy a piano and get back to playing.  But, also, I realized I have been having some crazy wild dreams and I thought maybe I should compile them into a post and see if I can make some people smile or scratch their heads.  So, here’s a few of the best ones I have had!

My favorite crazy/hilarious dream I have had was that Arturo came to me one day and said he had invented a curling iron and wanted to curl my hair with it.  I thought it was strange because this is the last thing Arturo would ever do…curl my hair?!?  Well, he convinced me to come into the bathroom and sit down for him to curl my hair.  I soon discovered that the “curling iron” he had made was actually just his poop formed into a shape that resembled a curling iron.  I was horrified.  I kept telling him he couldn’t put that in my hair, but he insisted and was so sure my hair would look fabulous once he finished.  I was crying the whole time he was “curling” my hair.  I kept telling him that he wasn’t curling my hair, he was just smearing poop all throughout it, but he was like a crazed madman and just kept going and telling me that it looked fabulous.  So, that was weird.

Another favorite dream starred my mom.  I dreamt that the world was in disarray, run by criminals, and any “good” people that were left were all in hiding terrified to leave their homes.  So, I was hiding my mom because she had military grade weapon technology inside her body and the bad guys were trying to find her to dissect her and obtain the military grade weapon technology.  We were hiding in the house where I grew up in Churchs Ferry, North Dakota.  (This house is no longer even there.)  We stayed in the basement most of the time because there weren’t very many windows and we didn’t have to worry about anyone seeing us.  The only time we went upstairs was to use the bathroom or to get food from the kitchen.  One day while I was upstairs taking a shower, I noticed a huge truck had pulled into our driveway.  I started screaming for my mom to hide because I was sure it was the bad guys.  But, it turned out to be four guys that I went to high school with who were there to help protect my mom.  I’m not exactly sure how the dream ended, but I think my mom stayed safe.

Another great dream combined elements of my past and my present.  I dreamt that I went to eat at The Crossroads, which was a truck stop in my hometown that is no longer in business.  When I went in, the place was packed and I couldn’t get any service.  There were tons of waitresses standing around gossiping with each other and ignoring anyone who came in the restaurant.  I looked and saw that one of my dear friends from Pueblo was waitressing and she was the only one doing anything.  She was running around like crazy trying to get all the customers taken care of.  I kept trying to get the attention of the other waitresses, but they just kept talking amongst themselves and ignoring me.

I heard one of them say, “Oh no.  She did it again.”

I was like, “What?  What happened?”

I then looked over and saw that my friend who was waitressing had puked all over the head of one of the customers.  She was apologizing profusely and trying to help him get cleaned up.

The other waitresses kept talking to each other.  “She does this all the time.  At least once a shift.  So gross.”

I was so disturbed.  I was yelling at them, “You need to help her!  She is overwhelmed! This is too much work for her!”

They continued to ignore me, so I decided to start helping her.

I have also couple of really weird birth dreams just this week.

The first one really upset me even though it is absolutely ridiculous.  I dreamt that I was only 18 weeks pregnant and I went into labor.  They couldn’t stop the labor and rushed me in for an emergency C-section.  Immediately after the baby was born, they rushed the baby off to the NICU and wouldn’t tell me anything about the health or the sex.  In my mind, I knew that a baby born that early could not live, but they wouldn’t tell me anything and I was a complete mess.  The next day, they came and took me to meet Baby.  The nurses were so excited and so I felt that it must all be okay.  They brought me to a six year old boy with a mouth full of teeth who was talking and calling me not mama, but Amanda.  I was so upset and confused.  I kept telling them this wasn’t my baby and they kept saying it was and acting like it was all totally normal.  They were trying to get me to pick him up and cradle him and to nurse him.  I just kept looking at all those teeth and telling them  I couldn’t.  I then woke up and I could hear my mom telling a bunch of my family that she had a dream that I gave birth to a six year old boy.  I was even more upset.  You had the same dream?  It must be true!  But then, I woke up for real and realized that I had a dream within a dream.

Two nights ago I dreamt that we went for a Dr.appointment and we were told that the Baby’s heart had stopped beating.  They were going to induce labor and have me deliver.  They did an ultrasound to check on the position of the baby and we discovered that it wasn’t a baby at all…it was a horse.  So, I gave birth to  a stillborn colt.

Obviously these last two dreams are wildly unrealistic and shouldn’t make me afraid, but to be honest, they both did make me nervous.  So, I was very relieved to go the Dr. yesterday and hear Frijole’s beautiful beating heart.  The Dr. had a hard time finding heartbeat again and by the time he finally did, I was in tears.  He was so patient with me and just kept telling me, “Don’t freak out.  I’ll tell you when it’s time to freak out.”

Other than that, things are going really well.  I am done with the all day nausea.  I am still puking a few times a week (quite a bit this morning) but it’s so much better!  I have had some mild kidney pain off and on, but so far, I haven’t passed anymore stones and I’m hoping not to!!  Physically, I am feeling so much more human, but that also makes me a little bit more anxious.  I NEED my pregnancy symptoms to reassure me that Baby is still growing and everything is fine.  Without all the wild symptoms, I almost don’t feel pregnant and I let my mind wander to all the scary places.

I was exactly 17 weeks at my appointment yesterday and I was really hoping that he would let me schedule my anatomy scan for 18 or 19 weeks.  I had it at 18 weeks with Angel.  But, no, he wants me to schedule it between 21-26 weeks. Ahh!  That feels so far away!!  Also, he wants me to go a specialist for the ultrasound.  He read me notes from the Dr. who did Angel’s C-section that said there is a 3-8% chance of repeat renal agenesis.  Why did he have to tell me that?!?  We were never told that. We were repeatedly told that Angel’s condition would not reoccur in subsequent pregnancies, that there was nothing genetic about his diagnosis and that it was like a strike of lightning, extremely rare and only happens once.  After the appointment, I talked it out with Arturo and reasoned that the Dr. put that in his notes because he probably couldn’t put 0%.  I mean, he can’t actually know for sure that it would NEVER happen again, so he put a very small % in.  I’m trying not to let it freak me out.  Before bed last night, I almost did a google search to see if I could find any stories about moms who have had two babies with the same condition, but I talked myself out of it.  It’s gonna be a long 4-9 weeks of waiting until I know for sure though!  They will call me to schedule the ultrasound sometime in the next week.

We did schedule my C-section yesterday.  I had a C-section with Angel and since this will likely be my last pregnancy, I decided to go that route again.  I am terrified of a failed VBAC.  I don’t want to spend hours laboring only to end in a C-section anyway.  I know there is no way to predict how my labor would go, but I just decided I don’t need anymore reasons to be panicked and am going for the C-section.  And the best part?!?  The C-section is scheduled for my birthday!!!!  So, unless there is a reason to move it up, this year will be the best birthday ever!

 

3 hours on earth, 3 years in heaven

27 Sep

Angel-215

Daddy please don’t look so sad, Mommy please don’t cry

Cause I’m in the arms of Jesus, and He sings me lullabies.

Please try not to question God, don’t think He is unkind.

Don’t think He sent me to you and then changed His mind.

You see I’m a special child, I am needed up above.

I’m the special gift you gave Him, a product of your love.

I’ll always be there with you, so watch the sky at night.

Look for the brightest star and know that’s my halo’s brilliant light.

You’ll see me in the morning frost that mists your window pane.

That’s me in the summer showers, I’ll be dancing in the rain.

When you feel a gentle breeze from a gentle wind that blows

Know that it’s me planting a kiss upon your nose.

When you see a child playing and your heart feels a tug

Don’t be sad mommy, that’s just me giving your heart a hug.

So Daddy don’t look so sad and Mommy please don’t cry.

I’m in the arms of Jesus and He sings me lullabies!

three hours nineteen minutes

1 Oct

If you were a stranger and passed me on the street, you probably wouldn’t know that I am hurting.  You wouldn’t be able to feel the depth of my pain and suffering.  It wouldn’t be evident that I held Angel in my arms while my baby was dying.  If you saw me on the street, I would probably have a smile on my face, so how would you know that inside I am broken?

But, know this. Even though you can’t see it, I will carry Angel with me forever.  I will always be Angel’s mama.  I loved Angel so much while I was carrying this baby in my womb and to look upon Angel’s face I was completely overwhelmed that I could love our baby even more than I ever thought imaginable.

Initially, I thought it might take me awhile to be able to write this, but I realized that the longer I wait to get this in print, the more precious details I will forget.  I don’t ever want to forget this day.

I woke up the morning of September 27th not really knowing how I felt.  I was anxious about all the unknowns.  I was excited to hold our baby, and I was terrified that all my worst fears would become reality.  I was overall pretty calm, though.   I didn’t really have a lot of time to process my emotions that morning anyway.  We had to be at the hospital at 5:00 am, so we got out of bed shortly before leaving.  Surprisingly, I did get some sleep.  I slept for about 4 ½ hours, so that is much better than anyone would probably have expected.

Once we got into our room at the hospital, it was pretty much non-stop hustle and bustle.  The nurse asked me all kinds of admission questions while preparing me for surgery.  They worked on getting my IV started…which of course took four tries, two nurses, and one anesthetist to accomplish the task.  I started to feel a little anxiety while they worked on that.  I was nervous that they would have as much trouble with the spinal.  I have never had a spinal before, so I had no idea what to expect.  Several of our Doctors and nurses came and went from the room.  They all wanted us to know that they would be in the operating room and to find out if there were any last minute questions we needed answered.  They got Arturo all suited up in a cute white jumpsuit.  When our Pastor arrived, they also got him suited up.  They had explained to us that when the baby was born, if it looked like we would have some time with Angel, an hour or more, that he would not need to come into the operating room.  But, if it seemed like Angel might not be alive by the time they were done stitching me up, they would get him right away and he could pray and baptize the baby right in the operating room.  As they prepared me for surgery, my parents, Arturo’s parents, our Pastor and his wife, they were all in our room with us.  We prayed and read scripture while I could feel Angel moving inside, but I couldn’t help feel more and more anxious as the minutes ticked by.  Shortly before surgery, the nurse cleared the room leaving only Arturo and I to ourselves.  I began crying and begged him to take me home.  I didn’t want to go through with this c-section at all.  He told me we couldn’t leave and reassured me that everything would be okay.  I just had this overwhelming sense of wanting to take my baby home while Angel was still alive and the only way I knew how to make sure that happened was to leave Angel in my womb and head back home.

They took me into the operating room by myself while they put in my spinal and did a few other things.  Now, I was really starting to panic.  I was crying and having trouble breathing.  I hardly even felt them put the spinal in because my mind was so full of fear for what was about to happen.  At one point, as I had tears streaming down my face, one of the nurses grabbed my hand and prayed with me.  The anesthetist strapped my arms down and told me that this was so that I wouldn’t reach out and try to help the Doctor.  As full as my mind was, I did actually laugh at this and was glad that he had made the joke.  There were so many people in the room and I had the overwhelming urge to tell them all that I was sorry they had to be there, sorry they had to take time out of their busy schedules to help me.  How silly.  This was their job.

Just before they started cutting, they brought Arturo in the room and sat him in a chair at the head of my bed.  They also brought our photographer in.  The same nurse who had prayed for me now asked me what I wanted to listen to on the radio.  I said K-LOVE and when she changed the station, the song playing was “Held” by Natalie Grant.  Listening to that song put me at peace for a few minutes.  “This is what it means to be held, how it feels when the sacred is torn from your arms, and you survive.”

While he was cutting, it seemed like an eternity was passing by, when in reality it took less than 30 minutes.  I was crying and starting to hyperventilate a little bit.  I so did not want them to take Angel from me.  Arturo held my hand and tried to see what was going on.  I heard the Doctor ask for the time and someone respond with 0738.  Then, I felt them tugging the baby from me and I just couldn’t help but bawl.  They then called a new time of 0739.  7:39 am is when Angel entered this world.  Arturo said he could see the baby’s head and I asked, “Is it a boy or a girl?”  No one would respond.  The room was very quiet indeed.  I didn’t hear baby crying and no one else would say much at all.  I then began screaming, “Is it a boy or a girl!!??”  I saw them move Angel over to a table to examine our baby and Arturo followed them.  My Dr. finally said, “They will tell you in a minute.”  It seemed like a lifetime was passing by and I must be invisible because no one would answer me if Angel was a boy or a girl!  Then, amidst all the Doctors and nurses, I got a glimpse of them holding Angel up and I could see what the problem was.  Angel’s legs were connected.  In the womb, they kept telling us that they couldn’t see if Angel was a boy or a girl because Angel always had the legs so tight together.  They would joke and say that Angel was modest.  Well, now I knew that truly it was because Angel’s legs were joined together and baby’s genitalia did not form.  Shortly after I saw my first glimpse of baby, Arturo brought the baby over wrapped up in a warm, white blanket and a cute little beanie on baby’s head.  He said, “They don’t know.  They can’t tell if Angel is a boy or a girl.”  I had already deduced that, but to hear him say it out loud brought a whole new wave of tears.  Arturo said the cord had been wrapped around Angel’s neck three times and that was why baby was a little blue.  As I looked at Angel’s face for the first time, I said to Arturo, “Angel has your nose.”  Angel was making these little sucking faces, trying to breathe and once in awhile, baby would make the sweetest cooing noise.  It was the most beautiful sound in the whole world.

No one was saying very much, but then I saw them bring our Pastor in the room and he began praying and baptizing Angel.  I didn’t need them to say anything.  I knew that this meant they didn’t expect Angel to be with us for much longer.  Everything happened so fast while we were in the operating room, so to really nail down an order of events is hard, but I do remember our Pastor saying, “Lord, we commit Angel to you.”  Yes, Jesus.  We commit Angel to you.  We surrender this baby’s life to your care and your love.  Thank you for how much you love Angel.  As I looked upon that sweet face, and saw gentle tears streaming down Arturo’s face, I began to feel something completely different.  I felt guilty.  I felt as though I had taken this from Arturo, that it was my fault that he would not get to raise his baby.  As I continued sobbing, I started to tell him how sorry I was. He would not let me accept fault for this situation and told me that I needed to get that thought out of my mind.  I wanted to touch Angel, but they still had my arms strapped down while the Doctor was sewing me up.  I started freaking out about this a little bit and finally the anesthetist let my one arm go so that I could at least reach out and touch Angel’s head.   I then began saying, “Why Lord?  Why have you allowed this?  It is so unfair.”  Our palliative care Doctor came over at least once while we were still in the operating room and listened to Angel’s heartbeat.  It seemed to be beating fine and he said that he could give Angel a little morphine to make baby more comfortable.  We agreed.  We didn’t want Angel to suffer.

When the Doctor finished stitching me up, he reached up and told me that I had done a good job.  What?  I hadn’t done anything but lay there, so how could that be considered a good job?  And he couldn’t possibly be talking about Angel.  I hadn’t protected Angel the way I was supposed to.  Our baby would not live much longer and it just had to be my fault.  No, I had not done a good job at all.

They moved me onto a stretcher from the operating table and I asked, “Now can I hold my baby?”  Arturo put Angel in my arms and I felt a wave of peace rush over me.  They wheeled us out of the operating room and as we passed by the waiting room, I could see the worried faces of our family.  Once they had us all situated in the room, they let our parents, our Pastor and his wife come in the room.  I started to feel the joy in the situation.  Every time the Doctor would come in to check on Angel, he was surprised to tell us that Angel’s heart was still beating strong and we were grateful for every minute we got to spend with baby.  Angel started to gain some color in the face and even had some rosiness to the cheeks.  After about an hour or so, Angel stopped moving and making those sweet noises.  Arturo and I were afraid that baby had passed.  The nurse called the Doctor and when he came in and listened, he said that Angel’s heart was still beating, but it had slowed down.  He predicted we would have another hour.

We passed Angel around the room from grandma to grandma, from grandpa to grandpa.  Surprisingly, I was happy to let everyone hold Angel.  I did not feel this desperate need to cling to Angel for every minute I could.  All of these people had shared so greatly in Angel’s life and I could not deny them the opportunity to be blessed with this sweet little baby.  One of my closest friends had expressed interest in wanting to meet Angel.  When she had first asked, I didn’t know if I would want her to come or not, but all of a sudden, I wanted the whole world to meet Angel.  I had Arturo get a hold of her and tell her to come up to the hospital.  She was there much faster than I expected and she got to hold Angel while baby was still alive.  This filled me with so much joy.  Our Pastor’s wife was reluctant when I asked her if she wanted to hold Angel.  She didn’t want to take any precious moments away from me.  I assured her that I wanted her to hold baby, and she graciously agreed.  I spent some time singing to Angel and spent much time kissing Angel and stroking baby’s beautiful face.  I kept looking at the clock and realizing that one hour had passed, two hours had passed, three hours had passed and Angel was still alive!  This was so much more than anyone had expected.

I really wanted to know how much Angel weighed.  They hadn’t taken time to weigh Angel because they wanted to get baby in our arms right away.  Even now when I asked, they said that they wanted to wait until Angel had passed.  I was pretty adamant that I wanted to know, so they went and got a scale.  The nurse said that they were going to get me cleaned up and so she asked for our family and friends to leave the room.  One of the grandmas had been holding Angel; I honestly can’t remember which one.  The baby was given back to me before everyone left the room.  I kissed baby a few times then gave Angel to Arturo so that they could wash me up.  They decided that they would weigh baby and give baby a bath while they were cleaning me up.  Also, the photographer, from the organization Now I Lay Me Down To Sleep, who had been taking pictures since the operating room, said she would get some good posed picture of baby.  Arturo gave the nurse the baby and they started washing baby and weighed baby in at 3 lbs. 7 oz.  What a perfectly precious baby.  They were still working on washing and dressing baby.  They have this wonderful organization called Minutes of Gold that makes tiny clothes for babies and donates them to Sanford for their tiny patients.  They let Arturo pick an outfit to put Angel in.  As they were working on all this, the palliative care Doctor came in and took a listen to Angel’s heart.  I think somewhere inside me, I had started to feel like Angel was going to be okay, that since Angel had been with us for this long that Angel would be with us forever.  He looked over at me and said very calmly, “I can’t hear a heartbeat.”  I replied very calmly back, “Okay.”  I was in complete shock.  They declared time of death 10:58 am.  I wasn’t sure when Angel had passed or who had been holding Angel as baby’s heart beat for the last time.  I was actually kind of glad I didn’t know.  Angel had just peacefully slipped away, so peacefully that we were all oblivious.

Over the next couple of hours, there were more pictures taken, and kisses given.  They said we could keep Angel with us until morning if we wanted to.  I wanted to keep Angel with us forever.  I wanted to nurse Angel.  I wanted to strap Angel in the tiny little car seat that we had bought and drive home from the hospital together.  I wanted to rock Angel and sing lullabies to our baby.  I wanted to give Angel a bath and massage baby lotion into Angel’s soft skin.  I wanted to lay Angel down in the bassinet and watch baby sleep.  I would not be able to do any of those things.  I would have to say goodbye before we left this hospital knowing that I would never again see Angel on this earth.

The palliative care Doctor came in at some point and told us that Angel had sirenomelia, or Mermaid’s syndrome.  This syndrome occurs in 1 out of every 100,000 births.  This syndrome is caused by lack of blood flow from the umbilical cord.  We had been told early on that Angel had a two vessel cord versus a three vessel cord, so this is what caused the sirenomelia.  They told us they would do a full autopsy and should be able to determine Angel’s sex by the chromosomes.  My ob came in also that afternoon.  He told me that he was sorry they hadn’t known about the sirenomelia.  I told him that it didn’t matter.  We wouldn’t have done things any differently had we known.  Angel had so many difficult obstacles to overcome and the fact that we got to spend 3 hours and 19 minutes with baby while Angel was alive was truly a miracle.

There were many tears that day, but there was also laughter, and there was abundance of love. I took a nap with Angel that afternoon and I spent so much time kissing Angel’s cheeks I am surprised they didn’t get chapped.  I wasn’t sure when would be the right time to let Angel go and thank God for my husband who said we should do it that night before we went to sleep.  He is so good at stepping in and making the hard decisions when I am just unable to.

That evening, a couple more people made it in time to hold Angel before we gave baby to the nurses.  A very close family friend and also Arturo’s oldest sister dropped everything in her very busy schedule to drive up and see baby. I was so happy that they got the experience of holding Angel.  Our parents and our Pastor left that evening with the knowledge that they would not see Angel again.  Arturo and I spent a little more time with baby before we let the nurse come and get our Angel.

I realized that this was not goodbye.  Angel is the lucky one.  Angel is in heaven with Jesus, whole and perfect, and happy.  We are the ones stuck here on earth in an imperfect world.  Angel is running and playing in heaven and when we get there, Angel will greet us.

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