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. 
❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻
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
   
   
❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻❤️👶🏻
  
  

    

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.  

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. 😂   
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! 😆

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

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.