So the journey begins...well it really began last Wednesday. We had been sent over to a specialist in Pensacola because my doctor said Riley's head was measuring a touch small, nothing was wrong, but just a precaution to have it checked out. We thought we would have an ultrasound...they would also say no big deal and we would turn it into a baby shopping day!
After a long ultrasound...we meet the doctor. He started to tell us of some abnormalities that are showing up that alone are nothing, but with so many little things such as Ascites in several areas, signs of anemia and extra volume in umbilical cord, he was concerned. This is the point where the tears started. We were told it looked like an infection causing it all and the doctor wanted to do a fetal blood sampling (PUBS) to find out what it is. After crying my eyes out, calling my doctor back in Santa Rosa Beach, calling our pastor for support and prayer we decided to move forward with the invasive test. I suddenly had a team of people in the room.
They gave Riley a shot of Rocuronium in utero by guidance of ultrasound to keep her from moving and then another needle was inserted to draw her blood. All of this went well until they pulled the needle out and she was bleeding from the site. By the grace of God and the awesome ultrasound tech, the bleed was spotted and pressure was applied to my stomach in order to get pressure on the bleed spot on Riley. The doctor was sweating pretty bad...I didn't know what to think. It was all happening so fast. They were able to get the bleeding to stop with the pressure and then basically gave us the option to walk out and leave it in God's hands or go monitor and most likely have to deliver the baby. What the heck!? This was not what we thought was in store for us that day. Joe and I looked at each other, decided that Riley was not ready to come into this world yet and knew God was watching over her. They ushered us out the back door to return in several hours to check on her.
With a deep breath the ultrasound tech (which had cried for us earlier when Riley was bleeding) turned on the machine and heart doppler! She had a strong heart beat! I started to laugh for joy! The doctor came in and we discussed the plan to do a blood transfusion. We asked the questions we could think of and left still unsure of what everything meant.
Second PUBS with Blood and Platelet transfusion, Diagnosis IN! CMV, Pretransfusion Riley's platelet count was 22K, Post 163K, During PUBS, the doctor gave Riley a injection of Ganciclovir SCARY! The yellow bag says CHEMOTHERAPY! I was admitted to the hospital for CMV treatment with Ganciclovir via IV twice a day 9am and 9pm. Also going to have CMV HIG (Immune Globulin) flown in.
I got a new IV-AWESOME! Met with the doctor about treatment decisions for CMV. We are in uncharted territories with our situation and treatment. We have lots of faith in God and trust in the doctor and are moving forward with treatment. Will be on 2x daily Ganciclovir for a week and the 1x daily for 2 weeks...that equals 3 WEEKS in the hospital. They took me off bedrest which helped my state of mind tremendously!
Met with the doctor and team in AM. Discussed PUBS procedure for Thursday. Learned Riley and Placentas blood volume is 150ml (equal to 10 Tablespoons), reason Riley is bleeding from puncture site after PUBS is because her blood is being diluted and the blood and platelets given have anticoagulation stuff in it (to keep it from clotting while stored), prescribed Vitamin D and Calcium to help with coagulation in Riley's blood. Order fresh frozen plasma (doesn't have anticoagulant stuff), Had U/S to check for any bleeds. Everything looked great. Met with the doctor in afternoon-CMV HIG came in, also going to give me a Vitamin K shot to help with coagulation (I think).
The doctor came in this morning to check on us. I made the mistake of asking him if we will go home on December 6th. The magic 8 ball says...possibly no. He wants us here until Riley starts producing and maintaining her own red blood/platelets. So we are just believing God for her body to rid of this virus and her bone marrow to come and do its job.
It is 9:45 and I am currently irritated for the first time being here. It is my last night for the 2 doses on the IV and the nurse STILL hasn't started it. It was due at 9:00 and takes about an hour to run. Don't they realize I get woken up throughout the night for them to check my vitals and then labor and delivery will come and pick me up at 5am for the PUBS procedure. Don't worry, I already went out there to try to get the ball moving...she came in and then left again...still no IV hooked up...GRRRRR. I just keep telling myself...this is the last night.
I will start with last night. I got my vitamin K shot, which did not hurt a bit! I had been told the CMV Hyper Immune Globin had come in and kept wondering when I would get it. Finally they told me that it was going to take 4 hours to run through my IV and they would start it after my 9pm Ganciclovir. So, that put it starting at 10ish. 2AM it would be before it was over. No sleep for me. Turns out when I have 1 hour left I got the shivers/shakes, whatever you want to call it. So they had to stop it to give my body time to recover from the reaction...and then slow the pace down more. I ended up having the IV running for 7.5 hours last night, ending at 4:30am. My IV site was so sore.
They came to get me for procedure at 5am. We were wheeled to a Labor and Delivery room, I was given a new IV (such a relief...never thought I would say that) and hooked up to Fetal Heart Rate Monitor and waited for 6:30 to roll around to be taken to the Operating Room.
Here is the normal breakdown of happenings for the PUBS procedure:
FREEZING OP room to start, I lay on table/bed and they cover me in warm blankets.
Joe is given a chair to sit by my head.
Anesthesia people get me hooked up to monitors, IV stuff and usually oxygen nose tube.
The Ultrasound techs start their scan to get a good entry site and to check for anything the doctor has asked for.
The lab techs start rolling in.
The doctors come in. The doctor preps everyone on the plan for the morning.
They start rubbing me down with that orange crap and give Riley the shot of rocuronium to paralyze her.
They start the anesthesia on me. And then I get a numbing shot and then they insert needle into Riley and we begin.
The rest is a different variation of...pulling milliliters of blood, giving platelets, pulling more blood, giving blood and whatever else and tracking the net volume, usually ending up around 30ml when done.
Pull the needle out and we are done. Every time, Riley has bled from the needle site requiring them to apply pressure to my belly and praying for it to stop.
This time, the doctor made some changes. After figuring out why Riley was bleeding so much, he ordered the fresh frozen plasma, also gave some coagulation stuff and left the needle in a little longer to give the platelets time to circulate. It worked! Praise God!
I was a little nauseous this time after the PUBS, I think they gave me more stuff than normal. The rest of the day consisted of recovery, moved to high risk monitoring room for several hours, ultrasound to make sure everything was ok, no hemorrhaging or other issues and finally back home to room 260 around 3:30. LONG DAY with no sleep!
We had our regular visit from the doctor this morning. He said he was feeling great about everything. He also informed us we would get another ultrasound today! We are switching to 3x a day monitoring today from 2x and I apparently have an urinary tract infection...who knew?! So I am being started on an antibiotic for that. The lovely ultrasound ladies came to get me for my fun wheelchair ride to get our biophysical ultrasound. Riley got 8/8! She got an A+ on her first test!
We have made it 1 week! It really has flown by. Today is my last day of the 2 doses on Ganciclovir! Though it is annoying to have to get it for 2 hours each day it hasn't been horrible. 2 days ago I came up with a pain management idea. I had noticed that it didn't burn or ache when I got my dose after the PUBS procedure mornings in labor and delivery. I have Saline dripping with it then...Soooooo...I asked my doctor and the nurse the other morning if that was a possibility everytime, they said YES! I will take my nursing badge please. So anyway, that has helped the hours become more bearable.
I did get a new IV site yesterday. They had someone from Labor and Delivery come over so they could use lidocaine to help with the pain. Well thank goodness, because it took her 3 TIMES to find a good site. I am running out of places to put one. I hoping that after today they can start changing them every 72 hours instead of 48 since I will only be getting the IV once a day.
The doctor came in the afternoon to check on us. All is well! We are still waiting of the CMV viral load count from the last PUBS. He says Riley's strips from the fetal monitor look "beautiful"! She is reactive with great accelerations and such.
We had our 4th PUBS procedure this morning. It was another success! No bleeding when they took the needle out again. Praise God! The doctor gave Riley some Calcium something or another this time also. Platelet count was 27K pretransfusion, I didn't hear the post number. (update 99K was post #) The viral load count will be sent off to the lab, though we are still waiting on the numbers from the 19th. The 16th viral load was 600 something. We are scheduled for another PUBS on Friday at 9am.
We were in recovery until 3pm and then had another Biophysical Ultrasound. She got 8 out of 8 again! Such a good girl! We saw her open her mouth during the ultrasound. She has been pretty sleepy today, not beating me up too much and is Breech again since Thursday.
Well, 9 needles later today, I am off to bed. Pray for my arms to heal quickly so that they can find a place for an IV next time, it took 3 tries again today and 4 people...UGH!
I had my blood drawn and new IV put in this morning...IN MY WRIST...ugh! Handicapped again! We are spending the night in Labor & Delivery tonight, which we have never done and have a PUBS at 9am tomorrow.
In other news: I used my belly for the first time today as a table! It worked out quite well! (only because I couldn't hold it with other hand, by the way).
The doctor came in and spoke with me after Joe had already left this morning. He confirmed that we would do another PUBS on Friday and then he feels he wants to stress Riley's system and wait a week to do another one so that we can give her an opportunity to start producing her bone marrow. I have great hope that she will! He also said that he felt so reassured at all of her tracings from the fetal heart rate monitoring and that she has the brain development of a full term baby. We are still waiting on labs for the viral loads from the last 2 PUBS so no update there yet. So that's that!
Today was a great day! At the end of my Ganciclovir drip my vein had had it! It was starting to swell a little and get sore. The nurse said it was no good and was going to take it out! HOORAY! IV Therapy said they will come in the morning to give me another one. So I have not had an IV in all day. It has been wonderful! I was able to enjoy a shower and I felt different walking around the hospital. Just like a regular visitor or something. I was also able to enjoy some sunshine outside on the bench today. It has been overcast lately.
In other news, this baby girl has been then biggest wiggle worm today. She's getting more jabby. Sometimes I feel the need to let out a little "ouch"! I spent the day alone since Joe went to do laundry, so I did some work and just enjoyed being IV-less. (Here I am today at 28 weeks 5 days!)
I have been wanting to write this for a few days. As most of you know our baby girl went to heaven last Friday night (November 27th).
We had our normal PUBS procedure that morning at 9am, all went as normal. I stayed on the monitor as normal, but they weren't liking her heart tones. There were dips in her heart rate so they still weren't letting me eat yet. I wasn't worried...I knew she was still sleeping from the procedure. We had a couple ultrasounds in the room and all the doctors and nurses were watching the monitors throughout the day.
Day turned to night and the doctor came in to speak with us and told us we needed to deliver Riley and couldn't wait any longer. This was around 6pm. Before I knew it there were a ton of people in the room prepping me for the surgery...signing papers, putting in catheter, asking me questions and then I was wheeled into the operating room I had been in that morning. I was trying to be strong, but my body was so tense and shaky. I took a couple deep breaths into the mask and was asleep.
When I woke up I was in recovery, I was drowsy to say the least and I knew that a bunch of people had come to the hospital, but don't remember it all so well. Joe had to go sign some paperwork and got to go see Riley around 8pm. Eventually I was taken back to my room and was told I would get to see her in the morning. I remember family and friends being in my room with me. We took pictures and I was still drowsy.
Around 10pm, a nurse came to the room and told me Riley was not going to make it and they needed to get me to see her. They wheeled my bed to the NICU. I got to see her beautiful wavy hair and touch her little hand. She was so little and perfect. I chose not to hold her...I was at peace at the moment. She then went to be our little angel in heaven.
My heart is so heavy, but God is carrying us through and I know Joy will come. God has given Joe and I a peace and comfort. I know I have mentioned before, but cannot express the love I have for my wonderful husband. God has blessed me greatly with him. He is the strongest, most compassionate, loving man I know. He truly completes me and I am so very proud and happy to call him my husband. He has been such an amazing father and I look forward to seeing him interact with Riley's little brother or sister.
As for my family and friends, doctors and nurses, you all know who you are. I am beyond blessed that God has placed each and everyone of you in our lives. Thank you to all the medical staff and to the doctors, for doing all you did and trusting in God...For allowing us to meet our baby girl.
- Shared by her mother, Brittany