Baby Howard Coming (very) Soon

I am always amazed at the outpouring of love our family always seems to receive, in our fun wonderful moments, and in our difficult times! After our last blog post things were no different, thank you! We love you all so much!
With that said it's due time we gave an update.

31 Weeks: This was only a few days after we'd arrived home from the transfusion. I'd been taking it easy for a few days, but was still feeling anxious. Fortunately our levels were all low (below 1.5 the critical number). Baby girl Howard was still fighting strong with her new blood! I was feeling a little dizzy, but it turns out I was growing a baby but not eating enough calories for the both of us. After I started pigging out a little more it seemed to help a lot!

32 Weeks: Our scans were still low levels! We made it another week. We met with our general OB and started to talk dates for the 37 week induction. We felt like we were finally able to make stable plans, of course we had the "just in case" plans stirring in our minds as well. I started planning for my maternity leave at work, Mike and I made plans for his time off, and Will's care during delivery, and Marty's summer trip home, and grandparents.  We spent our Memorial weekend enjoying the warm weather, showing Will lake fun (wishing it was our Lake Tahoe, but feeling gratitude for the experience). We were able to feel relaxed and enjoy our family!

33 Weeks: This is our current week. Because of the three day weekend our appointment was on Tuesday rather than the usual Monday. The levels aren't all low. They aren't all high either. They're inconsistent, which means no rush to transfusion, which is great. But there always seems to be a calm before the storm. While we aren't rushing for another intrauterine transfusion we are watching the levels trend up. We anticipate all of the levels to be higher than 1.5 at our next appointment. As a reminder at 34 weeks intrauterine transfusions are no longer an option. The only way this baby girl is getting healthy blood again is if she's delivered and gets a transfusion outside of the womb. Our specialist told us we should probably pack a bag because of the likelihood of delivery. We will see our local OB on Friday to check for hydrops (fluid around her organs due to severe anemia) so we can make sure nothing severe develops before our Monday appointment.

So, we are planning on a 34 week delivery. I'm extremely anxious. I don't know a time line for NICU care, I don't know how the transfusion will look outside of the womb, I don't know if she'll be strong enough to nurse, I don't know. And it's scary to not know.

Ultimately right now we need prayers and good thoughts for a couple of things: first that on Monday our levels aren't higher, that we get another week to keep this fighting girl cooking; second that if she comes next week she's strong and well developed, that her NICU stay will be short and that we'll have our baby girl home with us sooner rather than later.

Again, I want to express my gratitude. You all are our supports and we can't say thank you enough.

All of our love, here's to what may come in the next week!!

Baby Girl Howard's Journey

I haven't blogged in over 4 years! In that time I've met my husband, had another little boy, Marty's grown into a teenager, we've moved to Kansas, and we are now expecting our little girl!

And this very special little girl is what leads me to start writing again. It's no secret I've always wanted a little girl (and I love my amazing boys), it was also no secret I'd been hoping this pregnancy would be a smooth ride after all the nausea with Will. It's been anything but smooth. While we've been able to inform most of our friends and family about everything that's going on, I've found it difficult to fully discuss with everyone, finding it draining to explain all the intricate factors that have played into this experience. So I'm writing about it, which has always been an easier way for me to express thoughts and feelings. I figure the best method is to break it out in a timeline, everything pregnancy is timeline related, so it feels appropriate!

So here's our journey with sweet baby girl Howard so far:

4 weeks: Mike was leaving for a trip and I just knew I was pregnant so I wanted to find out before he left...and surprise after a couple months of negatives we had a positive! Hooray for baby number 3!!

8 weeks: this is the time we usually go see the doctor, in Manhattan, KS we find out it has to be 10 weeks...they do have us confirm with a blood draw...another positive!

9 weeks: We announce to the grandparents while they visit for Christmas! Due date of July 17th...we also push back the first doctor appointment because I start new health insurance January 1,

11 weeks: First appointment, more blood draws, usual check ups all goes well.

12 weeks: The doctor finds antibodies in my blood. I have no idea what this means and start researching like crazy, it has the potential to be simple or really difficult. I go back for more blood draws to test the type of antibodies, and something called titer levels. 

12 weeks (a couple days later): We meet with the doctor and are informed I have antibodies to Kell. I'm asked if I've ever had a blood transfusion which I have not. The doctor informs me I was probably exposed to Kell through delivery of Will, which means Mike probably has the Kell antigen. My body, when exposed to Will's blood and the Kell, thought it was an invader and did what it was supposed to and developed antibodies against it. Having the Kell antigen is harmless, it's the fact that I have antibodies to fight it off that is worrisome. If this baby also inherits the Kell my body will basically be fighting it off. We are also told I have titers at 1:16. At this point we have no idea what that means just that it's not good. We are referred to a specialist an hour away from us. The specialist schedules us for many weeks out. Until that time they order blood draws weekly to measure my titers. 

17 weeks: We meet with the specialist in Topeka. At this point I have researched my heart out about Kell. It's been an in depth biology and genetics course. This specialist we see explains to us that there are multiple antigens out there and the one we've got Kell=kills. It's a terrible thing to hear. We've both never forgotten how that was his explanation to us. I asked about Mike being tested for Kell to find out if he was heterozygous or homozygous (I told you I did my homework) and that test was ordered. At this appointment they also measured the baby's size, and were able to identify gender! We asked them to put it in an envelope and had an amazing baker from Mike's work make us a reveal cake...pink! Hooray for a little girl!

20 weeks: Another specialist appointment. This time we met with Dr. Jackson. She revealed our results for Mike's blood test, he is indeed positive for Kell, but he's heterozygous. So good news there is only a 50% chance this baby will have Kell, which would mean if the baby did not have Kell my body would have nothing to fight off. Our next course of action would be to make some big decisions. She informed us of the method they would be monitoring the baby to see if she became anemic (which would be the results of my body fighting her off) was through Doppler scans of her brain. They look at blood flow into her brain and if levels of blood flow get too high in the brain it means she is anemic and her body's response is sending blood there. Our choices for action could be to continue to monitor these levels, or we could do an amniocentesis to find out 100% if she has the Kell. At this point we were informed our titer (remember all of those blood draws) level was already at the critical level meaning I had enough antibodies to fight her off if she had the Kell, but we showed a slightly elevated level on the Doppler so we wanted to take more time to decide before doing an invasive amniocentesis. 

22 weeks: We headed back to Topeka. Our plan was in place, if the Doppler showed elevated levels in her scan then she clearly has anemia and the Kell antigen. If the levels were not elevated, then we would proceed with the amniocentesis in hopes she was Kell free and we'd be done traveling to Topeka and go about pregnancy as usual! The scan showed low levels, we were very happy. We did the amniocentesis and expected results in 2 weeks.

24 weeks: Mike had to travel for work so he wasn't with me when I got the results of the amnio. Baby girl Howard tested positive for Kell. This was confirmation that we had a tough road ahead of us. I told Mike over the phone, and I planned to go to my appointment two days later without him. We discussed a backup plan in case the levels were high and he wasn't here. We now knew that at any point if her scans got high we would be sent to Kansas City where I'd undergo a procedure called Intrauterine Blood Transfusion. Basically if she gets anemic she needs blood my body wont fight off. And of course this appointment where we just learned that she has Kell, and Mike was gone, was the first time her levels looked high. Mike was in Oklahoma and rushed back. Someone had to drive there to take over his space and we had to go to Kansas City the next day. 

Kansas City was awful. We found out we had a false positive (there is a 10% chance of a false positive), but the worst was the doctor we met with. He treated us poorly and talked down to us. He ordered unnecessary blood draws, and he told us we would need to be seen again by only his office. I left this appointment in tears. The next day Dr. Jackson called me and we discussed the experience and she was very disappointed as well. We decided we would not be following up with Kansas City and I'd see her in a few days to remeasure the levels.

25 weeks: We met with Dr. Jackson and discussed the issues we had with the doctor in Kansas City and developed a different plan for the next time we had any elevation in the levels. The levels had indeed dropped indicating that our last high measures were false positives. At this point though with the knowledge that baby girl is positive for Kell she decided we should be seen at least weekly. 

26 weeks: Levels are low!!

27 weeks: Levels are fluctuating, there are some high some low. They are really inconsistent. Dr. Jackson calls the new doctors we will be seeing in the event of an intrauterine transfusion. They say to wait until the levels are consistently high, but to check again very soon. We are scheduled for Monday which is only 5 days away. She then says I will need to take steroids in the event that I do need a transfusion, and something goes wrong the baby will have stronger lungs due to the steroids. So the next day I am scheduled to bump up my glucose test (steroids will higher my blood sugar levels), I failed the 1 hour so I have to do a 3 hour glucose test before they will give me this steroid I need. Frustrating yes, but I passed and received my first dose. The lovely shots are given twice so we spend our Saturday morning in the hospital waiting for a steroid. 

28 weeks: Monday morning! The levels are still inconsistent. But for the most part they look lower, we are feeling pretty decent about things. Just in case we are scheduled to come back Friday. Friday levels look low we are feeling great!

29 weeks: Levels look good again! Dr. Jackson says she's very surprised we've done so well with my titer levels, and her being positive. She's a tough little girl! We begin discussing delivery. We know we will induce at 37 weeks, but if she shows signs of anemia past 34 weeks we will not try to transfuse inutero at that point but deliver and transfuse her outside of the womb. It's scary to think of NICU but we feel informed and prepared. To be honest at this point we feel confident we will not have any issues until 37 weeks.

30 weeks: Dr. Jackson isn't in for our appointment. At this point we are able to see the numbers scanned in and know if it's high or low before they calculate it. We know already what the numbers are saying. Baby girl Howard is anemic. The other specialist isn't aware of our plan to head to Overland Park, he thinks we should come back in a couple days. We know this is dangerous so we inform him that when our levels are this high we get scheduled with Midwest Perinatal for a transfusion. Thankfully he agrees and calls them, they tell us to go there now and plan to be admitted. At this point we have to figure out who will pick up Will and Marty, I have to call work and let them know, Mike has to call work. I'm scared, the levels were really high, this isn't a false positive. We arrive in Overland, we get scans from them we measure a 1.78 (1.5 is our critical level). They tell us they'll be keeping me overnight, we will transfuse tomorrow. We ask when I will be released and are told indefinitely. I thought it was an outpatient procedure and I'm extremely nervous. 

The first night we get me checked in and strapped to a monitor to monitor baby's heartbeat and  movement. I realize we are completely unprepared, I have no charger for my phone, no change of clothes, no toothbrush. Mike and I plan out the next couple of days the best that we can with limited information. The kids are taken care of for a couple hours tonight but Mike will need to go get them. Tomorrow Will will need to come with him so that he can be with me before and after the procedure. We aren't sure what happens from there. 

The next day I go in the morning for an ultrasound just to see placement. The doctor who will be performing the procedure needs to get a visual on needle insertion (these transfusions are done through the womb, and blood is put into the umbilical cord). We were informed yesterday that the placement of my placenta may make it more difficult. The doctor today lets me know if it looks too complicated based on where the baby is lying when we go to do the procedure that we will postpone another day. The procedure is scheduled for 4:00. I text Mike to let him know all the details. I'm then visited by NICU staff. They want to make sure I'm aware of the procedures in the event something goes wrong and the baby is born today. They discuss the possibility of needing boarding with Ronald McDonald because we will want to be here for baby (of course). They let me know Mike will follow the baby up to the NICU and we will find someone to care for Will who we will have with us. It's overwhelming, Mike isn't with me, and I'm scared. When Mike finally arrives I feel less anxious. Will isn't sure what to think he's nervous about me being connected to machines, he says "uhoh mommy stuck." The nurse has to start a medicine for the baby that will cause me to be a fall risk, which means hooray a catheter. It all starts to get painful. I'm wheeled out later than expected and Mike and Will head to get dinner. The operating room is freezing, they scan and the baby is laying in a perfect place. But, they have to go scrub in, of course this little wild girl flops around. When they get back she's moved. They still proceed but it's more difficult, they can't give her medicine to keep her still, they get in as much blood as they can and then her little hand starts reaching for things. They decide at that point it's safest to be done and feel comfortable with the amount they gave her. 

The doctors contact Mike to let him know it went well. He and I meet back in the room. I say a prayer of gratitude. It went so well! At this point we just monitor her, and me, to make sure all looks well. They say if everything looks good tonight and tomorrow morning I get to go home!

Overnight baby girl did really well. Her heart rate was "rock star status" according to the staff. The scans in the morning were lowered levels and she looked good. Mike was back (at this point he'd driven 8-9 hours this week, with 2 more to go to get me home). We were discharged with the plan of seeing Dr. Jackson on Monday and no work for me until then. 

It's been a stressful week. I couldn't be more grateful that we still have a baby cooking, she's healthy because she has good blood, and she is kicking strong! 

Our prayers now are to have low levels until 37 weeks...only 6 weeks and 2 days until then!  

So much for my easy pregnancy. But it's these times that we've really been able to focus on what we have and we are so incredibly blessed. We have had so many people sending us their best and keeping us in their prayers. We love you all, and feel so loved. This baby girl is so lucky to have so many people sending her love so early on!