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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.  

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