Personal

Pregnant Once More: 13. 19 week recap

Things have gotten bad once more. I will copy and paste below my update on Facebook. We also switched hospitals but remain firm that we LOVE Dr.Maki and believe she saved our lives times before. I will also post some photos of what I wrote out upon choosing to find a new hospital. 
β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»
I’ve been asked to share the truth of this journey. Countless women experience what I have and need a voice. Here is a recap for recent events. 
Since early September , it’s now nearing Halloween, my family has spent 23 days with my being admitted into the hospital. Then another 6 days of trips(one I went with a parish member) to the ER, which last well into the night. We live 1-1.5 hours away from the hospital which means my children have not slept in their own beds on those nights. Often times my husband has slept on a tile floor or recliner. He is an amazing man and hasn’t once complained about his sufferings! Thankfully they’ve stayed with local family which has given stability to this. This also adds up cost wise fast between gas, food, diapers, car maintenance, and more. 
 

In this time there have been countless IV pokes and blood draws(6 in the same spot over 2 day period once). Countless blown veins and occlusions, even two arm swelling blow outs. A picc line removed with mrsa and sepsis then another placed for a few weeks before being removed as well. Heart scans under sedation, ultrasounds, EKG. Then 8 hours in radiology with tubes and wires being threaded in and out of my abdomen, and today marks the third surgery to place and fix a GJ feeding tube.{{Update: they are canceling today’s surgery and wanting to transfer me to a larger hospital. I’m in a very well equipment level 4 NICU but have been asked to transfer. }} I’ve not been able to consume and digest solid food in this time, going from dry heaves to vomiting blood. Various health state from being able to make an egg to being carried to the bathroom. 
The photos below is a typical time for us. Nursing cuddles with the 20 month old, daddy and the 3 year old asleep somewhere close by. 
I am 19 weeks pregnant and suffer Hyperemesis Gravidarum- severe nausea and vomiting. Before pregnancy I was a very healthy and moderately active woman. Even donating milk at one time and only needing an iron supplement. 
HG is a real disease, women often fight for proper care. I have, and was even told to abort my son who you see suckling. It shouldn’t take nearly dying and surviving by a tube to be taken seriously. Some HG moms do well on pills while others need a picc line. No matter the severity we ALL suffer and ALL deserve equal support. 
This isn’t about me or my family. My family is an HG family. Support HG families. 
I’m thankful for the family God has given me. If I can pray for you please let me know. God bless
   
   
β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»β€οΈπŸ‘ΆπŸ»
  
  

    

Waiting for more information and then we will be in go mode once more. It’s getting harder to keep up with posting but I am trying.  Currently thankful for the life God has blessed us with and praying that through our struggles others may begin to have the help they need and deserve. 
A little brightness for humor.  

Advertisements
Personal, Uncategorized

Pregnant Once More: 12

Hello once again. This week has been a long one. Firstly, the great news. My labs look better! We went to see Dr.Maki on Friday, who was thrilled. This woman has gone through the journey with us and I know at times felt hopeless with the pregnancy. When I walked in she just lit up. In the two years we have gone to her for care she has never seen me look this healthy. Obviously I’m still skinny but the skin tone is much better. We spoke for awhile and she was so glad we did this. 
I hadn’t gained any weight at that point but she didn’t seem bothered by it. We went on to talk about how it’s so hard to find studies on HG this severe because it requires a pool of people, and that just doesn’t happen for HG. 

I finally found my non slip band and wore a scarf again for the first time in weeks. 16 weeks along.   
In the end this protocol is what will save our lives. Such a simple concept, a tube. I’ve seen some amazing stories of little ones and tubes, truly they are life saving. 
 

Tea bag added to fluids. If you look closely a couple rosaries are hanging. 

 

Over the week I got my feeds to where I am comfortable and adding extras.  The feeds run at 85ml/hr for 7 hours while fluids go at 125ml/hr for 5 hours. Through the day I do fluids twice and feeds twice.  I’ve taken to adding things to my water for the pregnancy. Sometimes I do pregnancy blend tea(red raspberry leaf is good for uterine health and with planning a natural birth it’s a good idea). Then other times some cranberry gets added(helps prevent a uti), lastly some fiber powder to counteract  the zofran constipation.  All of this has been approved by our Doctor. 

Made this to help explain my routine.    
I’ve got to call and set up a delivery of Farrell Bags, or bags that attach to my drainage port. Right now I’m using a cath bag which is not the best thing but worked in a pinch. 
For the rest of the update I’m linking a couple videos. Please excuse the revealing nature of my clothing. It’s been hard for me to share a lot of these photos and videos because of how modest I usually keep, not to mention I’ve head covered over a year now! However I am praying that by doing this awareness can be raised. So please excuse my jumbled mess. 
A dress cannot be called decent which is cut deeper than two fingers breadth under the pit of the throat; which does not cover the arms at least to the elbows; and scarcely reaches a bit beyond the knees. Furthermore, dresses of transparent materials are improper.”

The Cardinal Vicar of Pope Pius XI

That is a simplified way of explaining my wardrobe.  It’s a very personal choice. 


This was a huge moment for us. I had not sat on that swing since July. It’s mid September. This was amazing beyond words.   
 
My husband recorded both videos so bear with me on the shaking and movement. The boys were keeping him on his toes. 

This is me explaining my little set up.  FB Link

 Also please remember the men in all this. Right now my husband is a single father and nurse. He works full time+ where his life is in danger each shift. He comes home to sleep 4-6 hours then wakes up to a mess. Every day. Do you know how defeating that is? Then he cleans what was clean the day before, prepares meals, cares for children, does grocery shopping, hospital runs, and caring for me. The men are so strong and mine amazes me. I pray for him and worry for his mental strain. Let’s not forget our husbands!

My husband and two boys playing outside on a nice fall day. 

 
Here is the video update we made last night. I was beyond sore and tired so please excuse the craziness. FB link #2

  Here is a link about Father Kapaun, well known here in Kansas. Once again I am Catholic and don’t expect people to share my beliefs but please understand this is a deep and personal system of beliefs for my family. 
Little man couldn’t wait any longer. πŸ˜‚  

Little ones eating. Notice the mess? This is HG life. Full bellies and clean clothes are more important than a spotless home.   
God bless 

Personal

Pregnant Once More: 11. 15 week recap

Hello everyone!  Let me try to catch you up. It’s been one week since my last blog and I’m finally home. 

  
Here is my Facebook status. 

I am home now! After 2.5 weeks in hospital. During which time a picc line infected with mrsa and sepsis was pulled. Two surgeries to place a feeding tube, along with hours in radiology to try and fix it before the second surgery. Given an antibiotic to save our lives that is likely to cause our child to be born deaf. Literally lowest recorded protein level in the U.S. The team of doctors had ever seen. My body was shutting down and I was going to die if something didn’t change 
Hyperemesis Gravidarum is not just vomiting. It goes far beyond that. I am 15 weeks pregnant and being tube fed in order to save our lives. Even so I thank God each day for this blessing and pray through my struggles others will find hope and a way to continue on.

🌻🌻🌻🌻🌻🌻

First off all the surgery. It went well and now the tube is working properly. However I lost control of my body after waking. For several hours I couldn’t control my muscles and went into spasms that sent my blood pressure up to 167/13x(forgot last number). For the next day after the tremors stopped my blood pressure dropped to the 90s/60s and my heart rate was at 110-130.  By Wednesday I was finally completely stable and tolerating 50ml/hr tube feeds. The Tpn was stopped. 

Cuddles  
We continued to argue over feeds. The nutritionalist finally put me on a 2cal/ml formula. This means for every ml I’m getting 2 calories.  I refuse to Bolus(multiple studies back me up on this being a very very bad idea for jejunem feeds). The rate was also a bit of a laugh so slowly my husband and I are figuring this out. 

14 weeks. You can perfectly see uterine shape where the black is.   
Friday I was released after the final dose of antibiotics were given and the PICC line pulled.  The doctor who had ordered meds had me on 4mg every 6 hours for Zofran. I spent the ride home vomiting so forcefully that my insertion site for the tube began to ooze. The hour and a half drive finally ended and we all crashed. The next day was spent sleeping, a lot. 

Adrian tried to force feed me a corn dog. I showed him the bag and said its how mommy eats. Then showed him the tube. This is the moment he realized he couldn’t shove a corn dog into my tube. He wasn’t impressed.   
My three year old picked up so many new words and things. Like cartwheels. All day long he spins across the floor! The little guy is so cuddly. Right now I sleep on the couch for the incline(laying down will cause feedings to backwash and make me sick). At night Kai sleeps in one of the beds and Adrian ends up on the bean bag next to the couch. 

Well sometimes he rolls. πŸ˜‚   
The baby moves daily now! Small little rolls seem to happen about an hour after feeds begin, I’m sure it’s all those calories.  All medications are crushed, dissolved in water and pushed into the J port. My G port drains into a bag 24/7. The surgeon said to do this after seeing that 600ml drained from my belly in 24hours.   
Pill crusher and organizer. My husband was the genius who got the organizer!   
One day’s worth of pills. The noon pill isn’t there though.   

An old friend made and mailed these to us. Amazing!! Helps the raw feeling.   
Color is back to my face and the baby is growing. I stepped on the scale and wanted to cry when I saw 121. I began this journey at 147 pounds and a size 3/5. Then my husband did our photos and I saw that baby is better. It’s amazing what the nutrition does, plus baby moved out of my hips! πŸ˜†

I do not eat solid food. Sometimes I drink broth or coke so I have the feeling of it, but it drains out. 

15 weeks. One tube drains and the other feeds us.   

The children have been given several gifts of coloring books, little cars, and stickers. The day we got home was awesome for them. They decorated the pole for me with a rosary, cross, and lots of pretty stickers! Now we need to name it. 

  
I’ve had multiple people tell me how strong and brave I am, how amazing this is. Stop right there. I am not strong. I am not brave. I am not amazing. God is.  Last pregnancy I remember laying in nausea and nearly crying because “it’s not fair”. Being angry over people eating in front of me. So I promise I am not the strong one, God is.  I pray the same basic prayers each day. First of all I don’t pray for God to let me say, take the nausea or so on. I’ve been asking for the strength to endure this with grace and love. He answers this prayer daily. I don’t fight dry heaving but accept it and offer up that pain for others. When my husband eats something yummy I don’t feel upset but rather thankful he is able to. The mental view has changed completely this pregnancy and that is because of the Lord! I don’t feel as if I am better than another, or that my struggles are worse. Never! Several times people have told me “I feel bad asking you to pray for me”. Don’t you see? When you ask someone to pray for you it’s beautiful. In that moment you are not only entrusting that person with something that is obviously close to your heart, but trusting them with it. To take it all the way to God for you. To me that is absolutely amazing and beautiful, an honor. Lastly no prayer is less than another. Your struggles are important and they matter every bit as much as mine. Secretly I pray often for mommies to get that cup of coffee in the morning and manage to wrangle the kids in for mass. (Yes I’ve been there!) 

  
I will continue to offer all the negativity of this pregnancy up for those who are struggling with infertility. Please let me pray for you as well. 

Lord thank you for this blessing of new life. Please help my family to raise them in the Faith and bring them to you. Amen

Personal

Pregnant Once More: 10

Where shall I begin this time? I’ve avoided blogging because honestly, I’m tired.  I guess I’ll just go in order from my last post. 

Morning of GJ-tube placement  14 weeks pregnant.   
  
Wednesday the GJ tube was placed. This means that a tube goes directly into my stomach from the outside, then a second tube is threaded into that first tube and ends in the jejunem(instestines).  For this it was considered a surgery and much more detailed than the TEE. All nail polish and jewelry had to be removed, even my wedding band. However I did refuse to remove my scapular, which didn’t pose a problem since its cord and wood. I even had my rosary with me.  

 I asked for a binder from maternity. It helps so much.  
For the procedure they completely sedated me. It’s done by threading an endoscope down your throat along with the tube. The stomach is blown up with air and an incision made from the outside. Through that incision the g tube is pulled through and into place. Next the j tube is threaded into the stomach, and with the help of the endoscope guided into the jejunem. 

Kangaroo pump and food!  
  
Four hours after the procedure slow feedings began. It was very painful at first, worse than a c section. However by day three I don’t even need Tylenol. When I first got to my room I felt so ill and so much pain. My OB came in and told the nurses to make sure pain was under control since I hadn’t been given anything yet.  That night I told the nurse I needed to vent my g tube because the pressure hurt so much. She wouldn’t listen and said no. I finally popped the cap and felt such relief. 

Venting the G tube.   
I’ve discovered that very few staff here understand feeding tubes. The venting of my g tube has freaked out so many people, but it’s harmless. I do this a couple times a day to release stomach acid, or else vomit the acid. My doctor is aware and fine with this. 

  
Day two of the tube was no fun. We discovered it was kinked and he next day I was taken to radiology. This was by far the worst thing since being admitted. These two men were almost looking at this as a challenge. For over three hours they tried tube after tube, guidewire after guidewire. I had nothing for pain. I kept trying to tell them it hurt but they didn’t stop. I was in so much pain I was literally fainting. At one point the tech was trying to tell me to breath normal because I was hyperventilating. Even so these two men continued to pull tubes in and out of my raw abdomen. They were trying to force my piloris open. This is the muscle between the stomach and jejunem. I finally said to stop when I could speak again. The man tried to argue with me to try again and the tech finally said I had enough. I had contractions the rest of the night. 

Tpn is the milky looking bag.   
Because of my lab work being so poor it’s too dangerous to let me go without nutrition for even a few days. I have surgery again Monday to redo the GJ-tube. Until then, and for a few days after I am to be on Tpn.  This is basically nutrition through a vein. Very hard on organs but life saving. After two days of it my blood pressure has gone from 90s/50s to 120s/70s. 
Little man eats for mommy now.   
Food isn’t digesting anymore. Two days ago I had one handful of chips. The pressure was so intense the nurse suctioned out my stomach 6 hours later. Nothing was broken down. The next day while venting more chips came out. Today blackened chips come out. Even juice will sit for 8 hours until I finally vent my g tube. I don’t get it. 

Twice a day I clean the site and place a new pad. That is stomach bile backing into my tube.   
Today is Sunday. Today we rest and wait for surgery tomorrow. Once this tube is worked out I will go home. All nutrition, fluids and medication will go through my J port. Once the kinks are worked out this will be wonderful. 

My little one and cuddles.  I’m dried up now but he did this. A moment later I unlatched him and we napped.   

I am continuing to pray.  I’ve gotten to where I don’t ask God to take away the pain, or to let me eat. Instead I ask God to grant me the strength to handle this with grace. There is no anger, no “why me”, or even “it’s not fair”. I am so very blessed by the Lord. Through this suffering I offer it up for those unable to conceive, praying that through my pain God will give them extra graces to bear the pain of infertility. In the end a new soul will be in our arms, what more of gift could one ask for?  If I can pray for you then let me know. 

God is good all the time. All the time God is good. 

Personal

Pregnant Once More: 9

Thirteen weeks and four days pregnant. 

It has been four days since my last post.  Four days filled with much learning, and many doctors.  The hospital that is taking care of us, is fantastic. There were a stream of infection specialists called in to handle the mrsa and sepsis that developed. Then there were surgeons and anesthesia techs that spoke with me. Oh and let’s not forget LOTS of students (both niave and full of that love for their new profession). Lastly my wonderful OB and a maternal fetal specialist who is highly educated.   It’s been almost like a revolving door, but that means the best care for baby and I. 

My youngest one eating the soup I couldn’t. He loved it!  

The sepsis and mrsa are now gone, but antibiotics will need to continue another week and a half. This is slightly worrisome to me because at this window of pregnancy the medicine is known to cause children to be born deaf. My husband and I both agree this is God’s will and we will cross that bridge if it comes.  

My vein nearly blew out from all the medications so another picc line was placed for the time being. My arm swelled horribly from the vanco!   

Because of the seriousness of the infections all who entered had to suit up in a blue gown and gloves. This was quite comical to see! Also, a scan of my heart was done. If the heart valves showed bacteria then a longer dose of medicine would be needed. Thankfully that went well. The procedure itself wasn’t too bad. The anesthesia normally used is a class D and dangerous to baby so I was put fully under. There were endless patches and monitors covering my body. The scan is called a TEE and over quickly.  

 Here is a google image of the procedure.   
This was written by a staff member. 


Here is a visitor in lovely blue.  

 

I have been able to eat around 2-5 bites of food a day.  Many of the medical staff cannot fathom this, or believe that is considered good for me. I try each day to do just a few bites and my doctor is okay with that. Today I had a few sips of cereal and was done. Because of my issues with eating a feeding tube will be placed.  This is possible due to Vanessa Pack. She is an amazingly strong woman who suffered severe HG.  I don’t think she realized then, but she would help save an unborn child’s life. She is proof for the staff here that the tube works for HG. Without her pain I would be continuing to decline. 

The hardest part is only seeing my children every few days for an hour.   
Tomorrow morning I am to have the tube placed. Through this all fluids and nutrition will be given. Eventually medications as well. Once antibiotics are done my new picc line will be pulled.  A nutritionalist will come and help me learn to use the PEG and determine what exactly baby and I need. 

Here is a Google image once again.   

My lab work isn’t good. Apparently it’s the worst my doctor has ever seen. My protien level is less than a 1, normal is 10. A few weeks ago my pre-albumin was a 10 when normal is around 18-20.  The level then was that of a coma patient, and it’s since dropped.   I’m starving! Which explains why I am unable to handle sitting more than 45 degrees. Why bathing is nearly impossible and walking to the restroom is that of running around the block with asthma. 

Now I see how much 15% body weight matters. My clothes are too big as well.  
If your doctor tries to pull the small bite and small sip card show them this! I have been told that countless times( and don’t get me started on the suggested foods). Last week I finally proved my point, ordering half the menu. Bite after bite I vomited back up. Then did it again for hours! Then I called the nurse in and demanded she chart this, and bless her heart she did. It didn’t even have time to digest.  I’m lucky to do 1/2 a cup of food a day and 5-10oz fluids. Because of this my health continued to decline and 15% body weight was lost within a month. I was doing small sips and bites all day long, as well as IV fluids and medications.  Do not be bullied. You know if it will stay down or not! 

Cuddles upon waking from the TEE   
 
Now a religious bit. I keep being told how strong I am and so forth. No. I am not a strong woman, God is my strength. The example of this is yesterday. As they were prepping me for the scan my heart began to race, I felt terrified of being put under, and terrified of feeling that tube down my throat.  At that moment I decided to being praying the rosary, offering those graces for all of the people praying for my family. As each bead slipped by I felt more and more peace. A decade later they started the anesthesia and I was out. When I came to the rosary was still in my hand.  Many many times I can’t say a Hail Mary, my words run together. So, I grip my rosary and just focus on praying for others.

I believe God is using my pain to one day help another. Even with all the pain, all the testing and treatments, I am thankful. God chose to bless my family with another perfectly made little soul.  One day soon this will all be a memory and our child will be here growing quick. I’ve decided to offer these trials up for those who are unable to have children of their own. If that is you, I pray for you daily.   

So please. Do not call me strong. Call God merciful and kind. Through him all is possible. After all

I can do all things through Christ who strengthens me. 

  

My poor husband. He had dental surgery and still took care of little man. Even building forts here and putting him to bed each night. Men struggle too and need just as much help. Remember that please 

 
  

Here is a video taken 15 minutes after waking and five of being in my room. 

Personal

Pregnant Once More: 8

Currently dealing with a mess of things. I will post photos below of posts I made to a private group. Energy is simply not here right now. 

  
At this point I didn’t have a fever yet, but it quickly rose.  Below is the photo when I was in the ER. 

  

  
(Read together)   
Picc line was pulled and cultured.   
 
My hook ups. Fluids with dextrose, potassium, magnesium, and the only antibiotic that works.    
Right now I am worried but I know all of this is in God’s hands and he needs to be trusted. The Lord has never let me down before, I’m giving him my all.  I’ll finish with some photos my husband snapped the day I got here. 

   

  

  God Bless

Personal, Uncategorized

Pregnant Once More: 11 week update

Oh boy did hyperemesis hit me hard. Since my last post I’ve been to the ER twice, admitted twice, and had a feeding tube placed. 

 First stay this pregnancy. Since weaned Adrian 

Even looking at my phone now causes nausea. I couldn’t keep anything down for 9 days. Instant vomit with even a sip or bite. HG hit harder than ever before. First overnight stay was just to view baby(who is slightly small but has a great heartbeat) and monitor me. More fluids were added and I was sent home.

  
  Mid week I had a doctors appointment and found out I’ve lost over 15% body weight in one month. A dobhoff was placed. This is a tube the thickness of a regular straw that goes into your nose, down the throat, pass the stomach, and into intestines.  From the time it was placed to us pulling away from the hospital I was vomiting blood. I’ve never felt such burn and each retch curled that tube up, choking me. We went to the ER where the dr on call raised his voice to me for not sitting up and talking normal, then mocked me for only having it in two hours. I was left for another hour when it became scary. I could not stop retching, it coiled, and I couldn’t breathe. As the room went black I pulled the tube out myself, to which the nurse was not happy! It was out 15 minutes before anyone came in, during which time my husband arrived. I broke down and left, being forced to sign a paper refusing treatment. It was horrible.

I could not move or else dry heaving hit harder!!

  

A few days later my lab results from the appointment came in and the nurse called. I was being admitted that day, so we were off again. During this stay I had to speak with not one, but THREE psychologists! This was to make sure I wasn’t forcing myself to be sick, afraid to eat, depressed from the sickness, or having thoughts of self harm.  All three said there was nothing they could do for me, because I was fine mentally.  Go figure? 

My comfort items while in hospital. Bible, rosary, and Mary statue.   

Later a nutritionalist came in. This had me laughing so much because her paper read “morning sickness food guide”. I told her point blank that only pretzels and liquids do okay for me. When she pressed I said I had hyperemesis not morning sickness and last time I didn’t eat for 7 months. She left soon after. 

 She demanded I eat these. I couldn’t keep either down.  

I am home now and on more IV medications, along with more fluids that run 20 hours a day. Also, bed rest. I didn’t realize how bad this was honestly. I figured “I’m sick but it will pass”. My doctor actually cried as she spoke to me. Said my lab work was so bad it looks like someone who is in a coma, that I could die from this and my baby could die. That I needed to rest and be completely selfish right now because I will die, or my baby will if not. I didn’t realize HG could be so bad in 2015. I am starving, my baby will eventually starve too.

 Noon dose of medications.   
  

Since coming home I’ve laid on my couch and done around 1/2 a cup of food a day. Usually soup. This is huge guys, huge. At night my husband turns the recliner to face the couch and our 18 month old sleeps on it beside me. There are not enough plug ins to sleep in our room with the constant fluids I must have.  It’s also easier to drop to the floor and puke in my bucket. 

  A kind woman mailed these for the boys. They opened it as soon as we were in the door!

    

On a funny note my three year old was a turd this week. I had a kit Kat bar in a secret spot by me. Awoke to Kai opening it and when I told him no he said “mommy you too sick to eat, I eat it for you”. He did. 

 Our fetoscope came too, but won’t be able to hear baby for another month. The kids played doctor.  In my hand is a syringe, because medicine must come on time.  

“I can do all things through Christ who strengthens me”. 

Repeat that often.