Blessed Day

It's been a rough few days. On top of everything else, I'm having horrible pain in my right shoulder area on my back. My blood pressure has also been rising again. I saw my OB yesterday to be sure it wasn't something serious. She ordered labs, a chest x-ray, and an EKG, because the preeclampsia / HELLP Syndrome comes with risks of lingering organ strain or even damage. Thankfully the tests were all normal. We have concluded the pain has to be muscular and although it's very painful, I am relieved it is nothing more serious.

After all this, I was thrilled to have such a wonderful day with our girls today. Both girls are off their IVs and Elizabeth came off her nasal cannula. Best of all...

Robert got to hold them together for the first time ever (for just a minute).

AND... I got to nurse them. They did an amazing job, both sucking and swallowing so well the nurse could hear them across the room. It was so amazing how naturally they took to nursing (though having nursed Leland at nearly the same age, I know srveral skills that help them succeed). I have been dreaming of nursing these sweet girls for months!

NICU Day Six

The girls are six days old today. They continue to progress. Both are off the lights (for jaundice) and off their c paps. Their feeding tubes and IVs are still in and they both have nasal cannulas (oxygen). Today they decreased the flow on the nasal cannulas from 3 to 2 for both girls. And they increased the feeds to 26cc.

We made the girls home away a little more cozy today, adding their pink and white monogrammed blankets to the top of their isolets. We also brought in the baby caps with their names as their wubanub pacifiers.

Some moments I am holding up well. Other moments are much harder. It's difficult to fully describe. Tonight is our third night away from the hospital.

Here are some pictures from our visit today:

Introducing...

Merry Christmas! We have finalized who gets which name and are eager to introduce you to:

Charlotte Victoria

Elizabeth Adeline

We are beyond blessed. We started one of our favorite family Christmas traditions with them last night. Robert read them the birth of Jesus from Luke.

Thank you for your continued prayer. I've never felt the power of prayer quite so strongly as I have these past few days - God has truly answered my prayer for peace helping me to stay calm and find joy at this difficult time of being away from all three of my babies in different ways over the last several weeks.

Babies are Here!

They were born around 10:30pm Monday by c section. They are in the NICU on a cpap. Their initial platelet counts are great! I lost a little extra blood, but am recovering well.

I'll post more once I really get to meet them. And after I've gotten some rest!

Tonight is THE Night

The girls should arrive in the next 1-3 hours. They are 33w6d today. I am nervous, but trying to keep calm. Please keep us all in your prayers.

Last Thursday at my OB appointment everything looked good. Today I have lots of swelling, my blood pressure is up, there is substantial protein in my urine, my platelet count has dropped, and most concerning, I have fluid on my lungs.

Today is Robert's birthday too!

Other than a possible brief view in the OR I likely won't see them till tomorrow morning or afternoon. Please pray for peace for me, health for us all, and that my milk will come in okay.

I'll keep you posted - it just may be a little while. Your support through out this pregnancy has been invaluable and so, so encouraging!

Birth Date(s) + IV x 2 + Ultrasound (of my leg...)

What's better than one IV?

Two IVs! I've started getting fluids with my infusions, which is a good thing. The complicated part is that my IVIG can't be run through the same line as the fluids. The solution is...just run two IV lines!

I saw my OB this morning. I am measuring 41 weeks (this is based on average singleton growth). We will be scheduling my c section for either the afternoon of January 13 or the very early morning of January 14. My OB is on shift during this time and she has sent orders to scheduling for this time window. I should hopefully know soon a specific time!

Finally, I get to have an extra ultrasound today. Of my leg! I am at very, very high risk for a blood clot with pregnancy + twins + IVIG. And I have just enough minor symptoms is my left thigh to warrent further diagnostics to be safe. I'll keep you posted!

UPDATE: legs look good. No blood clot!

33 Weeks

I'm 33 weeks (and 1 day) today. Just trucking along, taking things one day at a time. Some days are physically or medically easier than others, but even on hard days I remain thankful.

Baby B flipped head down this week. So both girls are down. This would be exciting if I were hoping for a vaginal delivery. Since a c section is my only option, it was more comfortable when they were laying in opposite directions. Both of their heads are one on top of the other on my lower right - right on my bladder. They are both very active and can get moving so much my belly looks like it's dancing. We are now doing weekly ultrasounds, but will only measure growth every three weeks.

My weight is up 40 pounds total this week. My thyroid is still off so we are upping my dose again. Swelling is getting more frequent, mostly in the legs, ankles and feet. My belly itches like crazy from the stretching of my skin. I think I have about 5 tunic length tops that still fit.

I have an OB appointment in the morning. I've been told I will be able to pick my delivery date then - I am really excited! I hope to be able to meet with the neonatologist and the pediatric hematologist next week to discuss post-delivery logistics. It's starting to get real!

And...the big countdown is for 6 days from now when I will be 34 weeks. From that point on they would do nothing to stop labor. Rather they would just rush me in for delivery!

Finally I'll leave you with a badly taken (slightly blurry) infusion center bathroom selfie. It seems I only have free time lately (for picture taking) when I'm waiting at the doctor.

32 Weeks

It's been a week filled with blessings and sadness.

My girls are growing great and I'm growing too. They now weigh an estimated 4lbs 10oz and 4lbs 12oz - that's 9 1/2 pounds of babies! I'm up to a total weight gain of 40 pounds and my belly is so large that I have very few clothes that still fit over my belly. I'm having a significant increase in swelling this week too.

We've been blessed to have lots of family support this week. Robert's brother came up over the weekend. He was able to help with several small tasks and was a great distraction for Leland while I was in the hospital. Then mid-week we have had Robert's parents and sister. They have been a huge help moving us towards completion of the nursuery - hanging a fan, hanging curtains and a rod, hanging book/picture ledges, hanging a mobile from the ceiling, painting and hanging a huge mirror, handing picture frames, washing and sorting baby clothes, etc.

Another wonderful blessing this week is the birth of a sweet friend's baby. She is local and we met just as her journey with the NEDC was beginning. Her beautiful baby boy is finally here! And I was able to meet him this morning. She delivered at the same hospital I get my infusions, see my OB and will myself deliver - making it easy for me to stop in before my infusion today.

On the harder side, I have been having issues getting my infusions. There is a huge communication breakdown between my doctors and the infusions nurses. Plus, several of the nurses have made it abundantly clear to me that they don't want me here. They make comments about me really needing to be inpatient and have made scheduling a nightmare, trying to require me to arive at 7am - which would require me to find childcare for Leland at 5:30 am befor he goes to school. They also threatened to stop my infusion on Tuesday without giving me the full dose becausethey didn't want to stay ling enough to give me the whole thing.

And on the sad side - it's been a year this week since my dad died. Some days this week have been easier than others. If I can find time and strength, I would like to write a post just about how I am coping on this front. Interestingly, it's actually been emotionally harder having Robert's dad here this week. It reminds me of all the things my dad would be doing for me if he were still here and healthy.

Admission #3

Yep. They admitted me again. I went in to see the OB and was scheduled for an infusion right after. The OB sent me down to assessment. They were concerned that the headache was still present, along with a few more symptoms (shortness of breath at times, rash, abdominal / low back cramps, some blurred vision). They've run lots of labs and have decided to keep me overnight to give me an infusion at a slow rate while monitoring. From networking with other NAIT moms I leared that I've been getting my infusions at 3-4x the rate of most other women (my rate has been the max within the medication dosing, but still much faster than most women receiving this type treatment can tolerate).

I'm still in a lot of pain which there seems to be litte available to help, but trying to keep a "mind over matter"..."I can do this"..."it's only for a short time"..."all worth it in the end" attitude.

On a funny note, I'll share Leland's question to me earlier this week. We had been discussing my growing belly and the babies getting bigger. About a half hour later Leland candidly asked me, "Mama, why is your bottom getting bigger?" A little surprised I just answered, "I didn't know it was."

With God, All Things Are Possible

Prying myself off the sofa last night, my maternity clothes barely fitting over my growing belly, I looked at Robert and asked, “did you ever think you would see me this pregnant?”

Quietly he answered, “I never thought I would see you pregnant at all."

Embryo adoption is such a beautiful thing. Such an overwhelming blessing. Even as I navigate this less-than-easy pregnancy, I am still so thankful to be right where we are. So overwhelmed with joy; blessed beyond measure. Despite the discomfort, pain, and fear, I am trying to savor the final weeks I will ever be pregnant. A miracle that once seemed impossible.  

End of Month Totals (November) + Aseptic Meningitis

So…here are my November totals:

6 – Blood Draws

5 – Doctor’s Appointments

5 – IVIG Infusions (+ 1 cancelled IVIG Infusion)

1 – Ultrasound

0 - Hospital Admissions 

Leland: 
1 – Urgent Care Visit 

Robert: 
1 – Urgent Care Visit 

Overall I think November was a pretty “light” month medically. Though health wise it has been hard. I started having a severe headache the Sunday prior to Thanksgiving. Like worst headache of my life bad.

At first I thought it was a sinus headache and saw my doctor who treated me for another sinus infection. When the headache continued to get worse I started to worry about my blood pressure. I began monitoring it on Tuesday (prior to Thanksgiving) and was getting readings in the 130’s / 80’s – not too high, but a tad high for me. Wednesday when I went in for my infusion my blood pressure was 142/90. Again not off the chart, but questionably high.

So while the infusion center was running my pre-infusion labs I walked over to my OB / MFM office to touch base about my blood pressure and headache. They took my urine, told me to have the infusion nurses monitor my blood pressure throughout the day and to check back in that afternoon after my infusion.

My blood pressure improved throughout the day (several 110’s / 70’s readings). There was no protein in my urine. My blood work looked great. So the good news was – no pre-eclampsia! So why the debilitating headache….

Aseptic Meningitis

Basically, meningitis is the inflammation of the meninges. Typically you hear of bacterial meningitis (very scary – can kill you in hours or days) or viral meningitis (serious, but not as scary as bacterial). Aseptic means non-infections; so basically Aspetic Meningitis is “inflammation of the meninges without an infection.” And, it’s a common side effect of the IVIG. It comes with all the unpleasant – seriously painful - symptoms of meningitis, but low risk of long term problems. Making things more unpleasant, I have had to stay off of all pain medication, etc. including Tylenol to prevent the risk of masking a fever. It would be very important to identify a fever quickly because that could indicate an actual infection.

My doctor offered to admit me to the hospital for monitoring, but really the only thing to do is wait it out. That and stop the IVIG, which is just not an option in my case. I declined being admitted and have just stayed in regular contact with my doctor. I logic I can be in pain at home with my family just as well as in the hospital and I can do my own monitoring (multiple blood pressure and temperature readings each day). Plus I have discovered that it hurts the same if I am resting or getting things done in moderation.

I am at day 10 with this headache. I have seen a slight improvement, but it still hurts a lot. Please join me in praying for healing - that the headache goes away quickly and does not come back. And that I can keep focused on God’s blessing of the continued growth and health of my girls.