Mackenzie's Birth Story

First of all, Aaron and I would like to say thank you for all of your amazing support, well wishes and prayers. It meant more to us than you could know and we are blessed to have so many wonderful people in our lives. From the bottom of our hearts, thank you. ❤️

After weighing the options of being induced or going home, we decided that the pros far outweighed any cons to just be induced and have our baby as soon as possible. Our thinking was that we knew her platelets were up in a normal range for the moment, and that if we went home... I could still go into labor at any time and we would have no idea what the platelet count was at that point. I was already at the hospital, already contracting and the NICU doctor who came to talk to us gave us a really good outlook for babies born at 34 weeks. So we stayed the night to be monitored and then around 4pm on Friday, I was induced. 

I was given pitocin to elicit contractions and started at a really low rate because of all of the contractions I was already having. We kept running into problems because Baby Girl's heart rate was fluctuating a lot especially if I sat up. A team of doctors and nurses would rush into the room, move me all around, put oxygen on me and try to get the baby's heart rate to stabilize. Eventually they asked me to get an epidural just in case anything emergent were to happen so I did. It wasn't pleasant, but I needed to get it in place with all the heart rate stuff going on.  I was mildly concerned that my epidural was not working correctly because only one side of me was getting numb. An epidural is gravity based so when I was laying on my left side, my left leg should have been numb, but instead my right leg was numb. The nurses and the resident assured me that when it came time they would be able to get both sides numb before I would have to push. 

My cervix wasn't really dilating even with the pitocin, so they upped it and also decided to give me a balloon catheter to expand my cervix artificially. Well... That didn't work. It hurt terribly and actually made me start bleeding. The resident who performed the procedure said she did get me to 2 cm and softened my cervix, so it wasn't a total bust! My nurse watched the bleeding and it was minimal so they weren't worried. 

After that, things were really quiet. We watched tv, hung out with my nurse-- who was such a cool girl-- and just waited. Around midnight, my mom, Aaron and I got ready for bed. My nurse said she hoped I'd deliver around 6 or 7am before she got off so she could meet my daughter. I joked that I would have her at 2am instead, so be prepared. I went to sleep and at 1:58 the team of doctors and nurse came rushing in, woke me up and said that Baby Girl's heart rate was way too low. They put oxygen on me and tried to reposition me, which was hard because my legs were numb from the epidural and eventually I was asked to get on all fours and they started ripping my leg massagers off, storing my catheter and throwing blankets over me and they started wheeling me into the hallway. They told Aaron I had to get an emergency C-section and I watched his face drop as another doctor was telling me the same thing and tears were rolling down my face. As I was being rolled away from my mom and Aaron, they told him to follow and quickly get into his scrubs. 

Once I was in the OR, the doctors and nurses were moving so quickly that I began to freak out. They were saying things like "She needs to get out now! Numb her NOW!" The anesthesiologist was doing prick tests on me to see what I could feel, and I could feel everything. The doctors were ready to cut so they said there was no time and I'd have to be knocked out. So I was put under and I was intubated. Baby Girl was born at 2:06am, limp and needing assistance. They very quickly got her to breathe and cry and rushed her to the NICU. Because of the emergent nature of my delivery, after she was born, they had to x-ray my body cavity to make sure nothing had been left inside of me and I had to get antibiotics because of the lack of scrub time.

Aaron was not allowed in the OR because they had to put me under general anesthesia... But no one had told him anything.  He was really upset and had been outside in the OR hallway, pacing because they hadn't updated him. Finally they told him, they were sorry, that he hadn't been allowed back because of the emergency conditions of my C-section, citing the general anesthesia needed for me, but that the baby was delivered and she was crying which was a good thing because it meant she was breathing!

I don't remember anything until I got to the recovery room and saw Aaron and my nurse and I was still really out of it. My nurse explained how the C-section went and the anesthesiologist came to explain why they had to put me under and he took my epidural out. I was given pain medicine via IV and waited for the doctor to come in to tell me why the emergency C-section was necessary. Apparently I had a placental abruption that caused the baby's heart rate to drop drastically. My placenta was prematurely detaching (and in my case shredding) from my uterus. Essentially I was bleeding heavily from the inside of my stomach and making it extremely difficult for Baby Girl to get any oxygen which left her very unstable. It happened very suddenly and without warning but the team of doctors and nurses were amazing and saved my life and our baby girl's life. The doctor told me that because it was such a large and sudden abruption,  if I had been at home, I could have bled out and baby girl and I would most likely have died. 

That statement and the craziness of my delivery was hard on us all. My mom had to go back to our room because she was so upset that she became ill. Aaron and I just sat there and cried. We were so grateful to God, that with everything that went wrong, the outcome was still a good one. I was alive. Baby Girl was alive. We were struggling a little bit, but we were alive. 

It was extremely bizarre to look down and realize my pregnant belly wasn't there anymore and I was very overwhelmed with many different emotions. I felt happiness that they said our baby was doing well, pain and sadness about the way it happened, guilt for being the reason we had to have the emergency c-section and excitement to finally meet her.  It had been 5 hours since our little girl was born and I hadn't been able to see her yet... So that emotion was taking over the others! 

I was still pretty out of it, my legs were still numb but the nurses wheeled my whole bed over to the NICU so we could see her. She was in an isolette with tubes, IVs, monitors and a facemask on to assist her with her breathing. The only part of her I could touch was her tiny, little hand. It almost didn't feel real, as if she wasn't really mine. I cried and told her how much I loved her already.  Aaron's huge hands made her look even tinier and seeing them together filled my heart up to the top.  We held her hand together and just sat in the moment; a quiet, happy moment that was just ours.  

My mom came back too and was able to see her beautiful grand baby and she was so happy.  I wanted so badly to hold her and it really upset me that I couldn't. They reassured me that I would be able to soon and that had to be enough for now.  We officially named her, Mackenzie Michelle Wright, blew her kisses and repeated how much we loved her and went back to our room. 

The very next time we went back to the NICU, they allowed us to hold her and honestly that's when it felt real for me. She was real, she was alive and she was ours. I began talking to her and Mackenzie recognized my voice, looked up at me and gave me a little half smile. Tears fell, my heart just about exploded and I knew that it had all been worth it. 

As of now, Mackenzie still has a tube down her throat to drain any excess swallowed blood from my placenta abruption, and she is receiving IV nutrition.  Her breathing is still shallow, but she isn't gasping for air anymore so her breathing mask has been removed. She's doing well overall and her platelet counts have been amazing. Isabelle has come to visit Momma and Daddy but hasn't been able to visit her baby sister yet. We've showed her videos and pictures and she really liked them. We need her immunizations record faxed over and couldn't get them until Monday, so by Wednesday she should be able to meet her and we cannot wait!!! I'm doing well also, obviously tired and sore-- I'm waiting to hear about a blood transfusion because my blood counts have all been low. But considering everything, my doctors are pleased with my progress. 

Thank you all once again for your amazing support, we love you all and are so very happy to be a family of 4 now. 💙💜💗💗

Fetal Blood Sampling

So as I sit in my hospital bed to write this I realize... This post is probably not going to be as eloquently written as those previous to it... My apologies.

We had our Fetal Blood Sampling today and it really didn't turn out the way we had hoped and prayed it would. We got to Johns Hopkins at 8:40am, checked in, got my IV started and blood taken. We then had an ultrasound to check Baby Girl's position and size. She was 5 pounds 8 ounces and they said she was in an awesome position for the procedure. Lots of nurses and doctors came in to introduce themselves and I signed a bunch of consent forms. We had to wait a bit for the blood bank to get the platelets and blood ready just in case... so by the time I headed back to the OR, it was around 11:15am. They began to walk me back and told Aaron he had to go to the recovery room to wait for me. I started to freak out and told them we were told he could be in there with me. The nurses said they would check on it and let me know. My eyes instantly welled up with tears as I walked away from him. I needed him to be there. I needed him. 

Once we got into the OR, they started to cover me, strap my arms and ultrasound my belly again. The anesthesiologist could see me starting to panic which also showed with my heartbeat, because Aaron wasn't there yet. She was SO sweet, held my hand and tried to distract me as tears rolled down my face. I asked Dr. Blakemore if Aaron was coming and she reassured me he was and was just getting dressed in his scrubs. Finally he came in... And I could breathe again. The doctors and sonographer were upset because of course Baby Girl moved into a not so optimal position. They took a bit to figure out where to place the needle and as they did I began to get Betadine painted on my belly and a privacy sheet was going up between my face and belly. I got a dose of anti-anxiety meds and they began to numb me.  Once I was numb, they started and I was terrified. 

I couldn't see but Aaron could and he said when the needle entered my stomach he could see it come in on the sonogram.  It was super uncomfortable, and borderline painful. Every time the needle would come though my uterus I would have a contraction and the needle would even start to bend due to the pressure of each contraction.  I also started having back labor, which is the worst pain ever and I couldn't move--which was so hard for me!  The anesthesiologist had given me the most pain medicine she could and it felt like she gave me nothing. It took an extra hour longer than expected and I was starting to freak out toward the end. I wanted so badly to move to relieve the pain and I started getting hot, wanting all of the blankets off of me. Aaron was my lifesaver, reassuring me that it was almost over, asking questions for me and just holding my hand and telling me how amazing I was doing. Positioning had to be perfect to get a sample for the baby and Aaron could see the difficulty they were having to get all the moving parts in place. Once they did they were able to take samples but the highest platelet sample they took was only 21,000 and some of the other samples were as low as 5,000. To give you some perspective, they were expecting them to be around 100,000-200,000. When we heard that, I broke down. They had to give Baby Girl a platelet transfusion and then pulled a last sample that showed she had a count of 207,000-- but no one knows for how long.

Once they gave me the go ahead to move, I sat up and tried to relieve my back labor pains and just cried. The looks on the doctor's faces were clear, even through their masks. They were shocked and you could see they felt for us. Aaron hugged me tight and told me how proud he was of me. I just continued to cry. The IVIG didn't do what it was supposed to... But my doctor said it kept her from having a bleed, or dying-- so it was still worth it. Apparently in this super rare disorder, I'm in that bottom 5% that is considered an anomaly... They don't know why it didn't work as well as it should have. 

We came to recovery, I still couldn't stop crying. They told me I had to stay and be monitored because I was still having contractions. The doctors and nurses all told me how amazing I did and kept saying I was a "trooper" and they've never seen contractions so strong or long during the procedure. The doctors then gave me 2 options... Have the baby the next day while we know her platelet counts are up, or wait 10 days, have the procedure again (and most likely another platelet infusion for Baby Girl) and deliver at 36 weeks. We are still at the hospital because my contractions are still coming. We are still weighing our options and still trying to decide what would be best for Momma and Baby. Please keep us in your prayers. ❤️

New Year, New Challenges, New Countdown!

Happy New Year!!! I am officially 8 months pregnant and we have been so busy over the past month.  Isabelle turned 2 and had the best birthday ever!!  It was Winter Break for me and with Christmas, friends visiting from out of town and New Years, we have been going nonstop! 

 

Because of how busy we were, and how much I was standing, holding Isabelle, and running around with her, I started getting some pretty gnarly Braxton Hicks contractions (which I didn't really get with Isabelle) and they were super uncomfortable.  I read to drink more water... which is funny to me considering how MUCH water I already drink with my treatments... but I did and they seemed to subside.  But then, at night I started to get real contractions in the bottom of my belly.  Some were so bad that I was scared enough to call the doctor... but they were irregular and I couldn't time them so I would just suck it up until they passed.  I think it was just Baby Girl telling me to slow down and put my feet up, which is super hard for me.  I know we are ready for the arrival of the new baby, but I constantly run through the million things I still need to do and I can't sit still.  Over the past few days, the contractions have calmed down so I hope that they will stay that way, even when I go back to work. 

My weekly IVIG treatments have continued and will continue until I have the baby.  I was recently given a new rate which has cut almost an hour off of my treatment and that feels amazing!  My nurse has been having trouble finding veins that won't collapse or roll away for my IV's and it makes the process so nerve-racking and scary all over again.  Last time, she stuck me unsuccessfully 5 times over the course of 3 hours.  3 of those times the needle ended up leaving some pretty ghastly bruises and those spots were super sore as well.  Eventually she had to call in another nurse and she ended up using this crazy flashlight thing to see my veins, to make sure she would only have to stick me once.  They were told they absolutely had to get the IV in because I had already taken my medicine out of the refrigerator to thaw overnight and it was room temperature.  So it had to be done THAT day.  My original nurse started at 7:30am but by the time the second nurse got the IV started, it was nearing 11:00am--which meant my treatment lasted until about 6:30pm.  It was an 11 hour ordeal that I NEVER want to happen again.  I tried my best to just stay strong and positive, but all I really wanted to do was cry.  It hurt, I was frustrated and felt very defeated.  I didn't want to seem weak or make my nurse feel any worse than she was already feeling, so I just held it in until later that evening and cried my little eyes out, worrying about how my last few treatments would go with my veins giving out. 

We have continued to have the bi-weekly middle cerebral artery brain scans on Baby Girl and she has passed the test every time!!  It has been harder and harder to get readings because her skull bone has thickened as she's gotten bigger.  The last time was a bit scary because they couldn't give me the instant answer that they usually do.  Baby Girl was face up and the sonographer was having an extremely difficult time grabbing the pulse of the middle cerebral artery for long enough to get an accurate reading.  They had to consult with my doctor and then call me if there was a problem.  Luckily I received no phone call and in this case, no news was good news.  It was not fun waiting around to see if I was going to be called, so I hope that never happens again!  Also at her most recent sonogram, they estimated that she weighs about 4 pounds and 3 ounces and is measuring 33-34 weeks gestational age (about 1-2 weeks ahead).  

After our last regular doctor's appointment, we have official dates for the procedure and induction.  I will be having the FBS (Fetal Blood Sampling) on January 14th and as long as it goes well and the baby's platelet count is in a normal range, I won't have to do it again and I can be induced on schedule.  Dr. Blakemore will be performing the FBS and she has been very informative and supportive of my million questions and concerns.  I found out they are opting out of giving me an epidural and that instead I will be given a small dose of anti-anxiety medicine to calm both me and the baby down, as well as a local anesthetic.  My recent blood work indicated that I have become slightly anemic and I will be going in before the FBS procedure to have even more blood work done to make sure everything is alright.  I was told that it is entirely possible for me to go into labor after the procedure and very probable that I will have contractions-- so I had to take off of work the day after the procedure so I can be on bed rest as not to exacerbate the inevitable contractions.  I'm so incredibly anxious/nervous/scared about the procedure and I just can't shake it.  I try to talk myself through it, tell myself it's going to be okay and also tell myself it's not worth worrying about until it is actually happening... but none of those things work.  It's always lingering in the back of my mind and I just can't escape it.  One of the ridiculous things that I'm anxious about is that fact that I will be awake in an operating room filled with 10-15 people (most of whom are strangers) and I will have to be naked under my hospital gown.  Yes, yes... I know it's for sterility and I will be draped but what the heck?!?  I keep telling my doctor that I will be wearing underwear and if they have to cut them off for some crazy emergency, so be it.  But I refuse to be awake and naked, it's awkward... lol.  Ridiculous I know... but I already feel like I have no control in the situation and that's the one thing I feel I can control.  I will be extremely relieved when it is all over.

I am scheduled to be induced on February 1st around 8:00pm.  We are hoping to actually have the baby on February 2nd because it's my Grandma's birthday and the date will be 2/2 (and that goes nicely with Izzie's birthdate of 12/12).  I delivered Isabelle very quickly, so our plan might not work... she could come right away after the induction starts or be stubborn and take forever to come.  I guess we shall see!!  I feel more nervous for delivery this time than last time, and I'm not sure if I'm just worried about the complications that could happen or if it's kind of freaking me out to have a specific date and time.  I am also really worried about leaving Isabelle behind because she has never spent a night without at least one of us with her.  I'm sure she will be okay but this Momma is going to miss her and I know she is going to miss us.  I am really looking forward to her meeting her baby sister though.  It's going to be one of those moments I remember forever and I'm sure I'll cry... but I'll preemptively blame that on my raging hormones lol.  We keep wondering what she will look like, and if she will look like Isabelle.  Baby Girl's sonograms look a lot like Izzie's newborn pictures, so I think they may end up looking similar. 

Going back to work this week is going to be harder than in the past, I just know it.  I have enjoyed my time with Isabelle during Winter Break so much and have been feeling all the feels about everything we do together.  I can't help but think, "this is the last time it's just her, as an only child."  We have had our 2 years together and we have our own rhythm.  That rhythm is going to have to change when baby sister arrives and I just want to cherish all the last little moments that I have left with Isabelle, while she's still my only baby girl.  I can't wait to see her become a big sister and I know that she will be so wonderful.  But for now, for the these last few weeks, I just want to enjoy my first born miracle, the one who made me a mother and the one I loved first. 

I'm sure I will get back into my work routine quickly and really I only have 4 weeks until I'm out for maternity leave, but I have SO much to do.  Unless you are/have been a teacher, or are married/dating a teacher, you don't really know how much work goes into being absent even just for a day.  And I have to make plans to be out for 3 months!! It's stressful and my class this year is a bit crazy... So I am definitely nervous to leave them.  I know I can get it done, but I need to get it done quickly--just in case Baby Girl decides to make her debut early or when I get the FBS done.  We are also looking forward to seeing our friends and family at our baby shower/sprinkle next weekend and getting our maternity pictures done! 

4 more weeks, WOW!! In 4 weeks we will be a family of 4. As hard as this pregnancy has been on my mind, body and soul... I've very much enjoyed it as well. The craziness of it all has become my normal and I feel so blessed to have been able to keep our little girl safe through it all. We are so grateful for our families and friends and have felt so supported and loved throughout this pregnancy. Thank you guys ❤️ It really means so much to us!! Next time I update the blog, we will know if Baby Girl's platelets are normal, so wish us luck and please continue to keep us in your prayers!

It's the 10 week countdown!!!

Ahhhh... This past Wednesday I made it the 27 week mark which means, I only have 10 more treatments!! Cue the Europe music... "It's the 10 week countdooooowwwn! Da da da da.... da da da da da.... da da da... da da da da da da daaaaa!"  It actually has my emotions pretty mixed up. On one hand, I am extremely excited to stop the treatments, stop getting IVs every week, stop having nurses and pharmacists constantly hound me about my weight and get my weekends back... But on the other hand, it means I'm only pregnant for 10 more weeks and as hard as it's been, I truly enjoy being pregnant.  I love feeling her kick inside of me and having Isabelle and Aaron feel her too.  So I guess it's a little bittersweet.

Since my last post, I have continued to have IVIG treatments every Sunday.  They have gotten more irritating to me and I did reach a point a few weeks ago where I really wanted to quit.  I knew I couldn't quit, but I was so over them.  I cried every Saturday night thinking about having to wake up early to have them and was having a pretty hard time.  I snapped out of it, and told myself it isn't that bad and above all else, it's working! At our last few doctor appointments, Baby girl has been healthy and it's because of these treatments.  So while I still don't like having to get the treatments, I have renewed faith in them and feel better about getting up on Sunday to do it.  More recently, I have become discouraged and nervous because my veins seem to be giving up on me.  The main vein that was being used in my right hand has collapsed and my hand was very sore for a few weeks.  It has just recently stopped being tender to the touch but the vein is still unusable.  The main vein in my left hand has been bruised and battered as well and is becoming hostile.  It literally rolls away when the nurse tried to get the IV in... like "umm hell no, not again!". I have also tried a vein farther down my arm but it also rolled away, and then bruised up and was very sore for about a week afterwards too.  I'm hoping we can continue to find good veins to use and the soreness and bruising eases up. I only need you 10 more times veins, just 10 more times!!

We have also  continued to have brain scans on the middle cerebral artery for baby girl--and so far, so good!!  Some days she is more cooperative than others so the scans can take anywhere from 15-20 minutes to 45-60 minutes.  They have to get an accurate pulse rate 3-4 times--which means baby girl can't move while she is doing it.  Then they put the readings they capture into a calculator that tells them whether or not the middle cerebral artery is doing what it should.  It's a little scary when it's taking a long time to get the readings and even scarier when they put the numbers into the calculator.  It's only a few minutes but it feels like it takes forever for them to say that she's doing well and the artery is  pumping within the correct range.  I finally got up the nerve to ask what would happen if they readings were not within the healthy range and the answer I received was frightening.  Dr. Althaus said I would have to get the Fetal Blood Sampling of her liver done earlier and more than once... so I hope and pray that it never happens and her middle cerebral artery continues to function as it should.  One nice thing that happens during these sonograms is that they sonographer always tries to let us see baby girl's face.  She is not always cooperative but it is extremely reassuring and amazing to see her.  It makes all the fear and worry disappear, even if it's just for a few minutes while we stare at her tiny miraculous face.

Speaking of the FBS (fetal blood sampling), I dared to ask more about that procedure as well.  I will have to go into an operating room, get an epidural and then there is a waiting game while they wait for the baby to be in an optimal position.  Once the needle is in baby girl's liver, they pull the blood sample and rush it for analysis.  It takes about 5 minutes to get the platelet reading back and during that time the needle has to stay in the baby's liver--just in case. If the platelets are in the healthy range they will take the needle out, if not the needle will be used to infuse the negative platelets.  I will be monitored afterwards and if they do have to infuse platelets, it is likely I will need to have the procedure again or I will need to have a C-section instead of a vaginal birth.  I was told it could take up to 2 hours for the whole procedure to be finished and the doctor who would be performing the procedure is the person who has done it the most with the most success.  There are usually 2 surgeons, 2 fellows, 2-4 residents and 2-4 nurses in the operating room during the procedure.  My doctor said that it is sometimes overwhelming but they are all there to learn and want to be helpful.  I know that's true but I am an extremely anxious person and I don't want anyone asking questions about what's going on because I don't want to know.  There will be a curtain up so I can't see my belly and Aaron is allowed to be on my side of the curtain with me.  I know if people are asking, why did you do this instead of that or asking about risks and other things, it is going to freak me out.  I don't need that.  I do want others to learn so I just want them to observe and ask questions later, lol... Maybe that's unreasonable and selfish but I just don't know that I am strong enough to hear about all the things that are going on over on the other side of the curtain.  We were also told that we would have to have the procedure earlier than we expected, at 34 weeks instead of 36 weeks. They are just trying to make sure they know as much as they can about baby girl's platelets just in case I deliver earlier than my induction date.  I won't lie, when she said that it would be 2 weeks earlier than we originally planned, I freaked out a little bit.  I am still unsure if I want to do the procedure, and to have someone tell you that it's because they think you could possibly deliver before 37 weeks, really rattled me.  So at our next appointment on Dec 3rd, I will be asking 5 million questions and if we feel comfortable with it, we will schedule the FBS. Ahhhhh!!!!!

In other news, I'm starting to have a harder time getting up off the floor, or standing all day at work without having some pain.  She is measuring 2 weeks ahead and my belly is DEFINITELY bigger this time than last time.  I'm very emotional...I literally cried because I wanted CinnaStix from Dominos the other day-- what can I say, it was the hormones, lol!  And of course I am always tired... blame it on the treatments, working full time and having a toddler at home!  I passed my Glucose test, thank goodness-- but still need to have more blood work done to make sure my low blood pressure isn't due to anemia.  Isabelle is obsessed with pulling my shirt up and patting my belly saying "Baby sitter (baby sister)". Baby girl is constantly moving, rolling and kicking.  Aaron loves to feel her move and it's such a wonderful experience for us.  It's hard not to compare baby girl to my pregnancy with Isabelle.  Isabelle didn't move nearly as much and  I wonder if it's because her platelets were so low and she was essentially nearing death inside of me.  Such a horrible thing to think, I know... but I can't help it.  My doctor said it's a ridiculous thing to think and that all pregnancies are different, but the thought often crosses my mind, along with guilt.  The important thing is that Isabelle is healthy and happy and so is baby girl, and I am extremely thankful for that. 

Aaron, Isabelle and I are so happy and excited for baby sister and I have gone into full nesting mode.  Poor Aaron has to deal with me constantly rearranging, organizing and purging things.  I am always tired and should probably sleep instead, but these things need to be done!! We are looking forward to Izzie's 2nd Birthday, Christmas and the New Year and then it's baby girl Wright time!! Crazy, it feels like time just started moving very quickly.  I am  so grateful to our friends and family for being there for us, whether it's to watch Isabelle during my doctor appointments or just letting me vent, cry or be unreasonable about the situation we've been put in.  I have to give the most props to my wonderful husband, without him--I'm not sure I could do this and I am so blessed to have him as my number one supporter, my rock, my best friend. Thank you for reading and keeping up with us. We really appreciate all of your support, kind words and encouragement.  It really means so much to us. 

 

Halfway there!

I haven't posted in about a month so there is a lot to say.  I just recently finished my 10th treatment!! My home treatments are going well and I've moved them to Sundays so that I can still go out on Saturdays and do fun Fall things with family and friends.  So every Saturday night I set up all of my medicines and supplies for the nurse and drink water until I feel I'll explode and every Sunday morning I wake up at 7am and wait for my nurse to arrive, start my IV of fluids and immunoglobulin and I try to sleep.  When Aaron and Izzie wake up, we watch football and go for walks (with my portable IV pump).  I have been receiving visitors during my treatments which is always really nice and comforting.  It really helps to break up the day and gives me something else to focus my attention on.  

 
 
 

 
The IVIG really takes a lot out of me and usually makes me feel extremely groggy and gives me body aches as well.  So when treatment is over I try to rest as much as I can so that I'm not a zombie at work the next day.  My small headaches, body aches and general exhaustion usually last through Monday and Tuesday.  Aaron is in NYC on Mondays and comes back on Tuesday mornings and that has exacerbated my exhaustion as well.  Izzie is quite the handful and really only likes to be put to bed by Daddy... so yeah, that's super fun on Monday nights, lol.  Treatments have become my normal and being exhausted has as well.  Some days are better than others but in general I think we are all adjusting to this life and doing pretty well.   I have also started a count down... only 16 more treatments to go.  Too soon? Oh well, it makes me feel a little bit better :)

As you all know, we are having another baby GIRL and we are so excited about it!! At our anatomy scan, the doctor reassured us that baby girl is doing very well, has no bleeds and has all the parts she should!  From now on, we will be getting a sonogram every 2 weeks to check for belly and brain bleeds. The sonographer will check baby girl's middle cerebral artery in her brain and do a Doppler on the blood flowing in that artery.  I was told the Doppler should show the same blood flow as the heart and should be a similar rate to her heartbeat.  If it is slower or faster than her heartbeat, they will have to do a full body scan and perhaps other tests if needed to determine if she has a bleed in her belly or somewhere else in her brain. If she does have a brain or belly bleed, they would try a platelet infusion while in utero to avoid having to deliver because she is not developed enough to thrive outside of the womb.  So every other Thursday, I will be a wreck until I get the all clear that baby girl is free of bleeds!!  We have had 2 brain scans on baby girl and so far the IVIG is working, so we are hopeful that it will continue to do its job.  Prayers are sent up every day and night that our little girl will be healthy and continue to fight off Mommy's antibodies.

We had a new NAIT knowledgeable doctor at our appointment, Dr. Althaus.  She also talked to us about my delivery and the procedure I will be having done 1-2 weeks prior to delivery. I will be induced 3 weeks early, so my due date has changed from February 24th to February 3rd (my mom's birthday).  Izzie was also born at 37 weeks, so I'm not too worried about delivering early.  They said they want to get her out as soon as she is considered early term because the longer she's in my womb, the more likely she is to have a bleed and towards the end of the pregnancy my womb is becoming increasingly more hostile.  It makes me sad to hear someone refer to my womb as an unsafe place for my baby.  I'm supposed to protect her and provide a safe place for her to grow, but instead my body attacks her and it's scary and dangerous.  I know I can't control it, but that doesn't make it suck less or make me feel any less guilty. 

About 1-2 weeks before I deliver I will be having a procedure to check on baby girl's platelet count.  I will receive an epidural, and they will use a sonogram to check on the baby's position.  Once she's in the optimal position, they will insert a super large needle through my belly, through the placenta and into baby girl's liver to retrieve a blood sample.  Then they will immediately test her platelet count.  If she has a normal platelet count, the procedure is over and we will be induced on schedule.  If the platelet count is below normal, they will have to use the same type of procedure to infuse negative platelets (the same as mine), so that my antibodies will leave them alone and the new platelets can thrive in her blood.  I asked as many questions as I could, such as risk factors and how long it takes, but I was so scared and nervous about everything they had just told us and I needed time to process it.  I'm sure as it gets closer, I will have more questions and concerns... but as of now I just don't really want to think about it.  I keep telling myself I will cross that bridge when I come to it.  I don't have the energy to worry about that on top of everything else. 

For now, we are taking things one day at a time and I am trying to enjoy this pregnancy as much as I can.  I am loving knowing that she is a girl and feeling her kick and move around inside of me.  I'm grateful to have such a wonderful husband and daughter who put up with me on my bad days, make me smile when I feel like crying and love me through it all. Thank you for reading and for your continued support.  We so appreciate the prayers, kind thoughts and love. 

Home treatments!!

So, I was approved for home treatments!!!  For the past 2 Saturdays a nurse has come to my house and I received my medicine from my own couch!! Pretty exciting stuff!!

I've never been a recipient of home treatment, nor have I known anyone who has been so I didn't really know what to expect.  The company that handles my treatments is called IgG America and every week they call and ask me a million personal questions and schedule a delivery.  The first delivery I got was a HUGE box sent via FedEx and included a ton a medical stuff, and IV pole, saline bags and my immunoglobulin.  It honestly kind of freaked me out.  I wasn't really sure what some of it even was or what to do with it all.  I was especially concerned with how to keep it out of reach of my nosey toddler, Isabelle.  The only direction I was given was to refrigerate my immunoglobulin and make sure to take it out the night before my treatment.  So I hid it from Izzie and freaked out every time she opened to fridge. 

When Saturday rolled around my nurse came to my house around 7:15am and I wasn't expecting her until 7:30-8:00am so I was a hot mess, lol.  She started my IV and my saline, I took my pre-meds and tried to get comfortable.  My first nurse's name was Maggie and she was very sweet and super efficient.  She helped me fill out my paperwork and checked out the things that had been sent to me.  When it was time to start my IVIG, she hooked it up to a portable, battery operated pump.  It came in a little bag/purse thing and would allow me to be mobile during treatment.  Which for me, was most beneficial because I had to pee at least twice an hour!! I guess that's what drinking tons of water and Gatorade will do to ya though. 

Throughout the treatment, I played with Izzie, napped, watched TV and planned for school.  I also had my temperature and blood pressure checked every hour.  I'd like to say I was more productive, but the Benadryl that I take makes me very tired and the IVIG gives me slight body aches.  Aaron stayed home the whole time except to take Isabelle for a walk.  When they did go out for a walk, I was a little sad because I wanted to go to... but couldn't.  I just had to think how grateful I was that I didn't have to get a sitter for her all day, or sit in a hospital bed either. 

My treatment ended around 5:30pm and Maggie asked me a few follow-up questions, took out my IV and she was out the door.  So much better than getting out of the hospital at 8pm and still having to drive home.  Maggie was very talkative and was so wonderful with Isabelle and with my dog, Sophie.  She won't be my permanent nurse, but she is my alternate.  So I will be seeing her again! She followed up with me the next day, making sure I hadn't gotten any headaches and that I felt okay which was super nice.

At my second treatment I had a nurse named Bernadette or Bernie as she likes to be called.  She was also an awesome person who really got along well with my family!  She had never had a NAIT patient before so she was extra cautions with everything that she was doing and made sure to double check the protocols set for me.  She was also very talkative but stayed a little bit more out of the way in my tiny little house.  We played with Izzie, we watched TV and I had my temperature and blood pressure checked every hour again.  Isabelle was absolutely terrified of the blood pressure cuff and freaked out every time Bernie went to check it.  She cried and screamed at her because she thought she was hurting me.  It was really sad but super sweet that she wanted to protect me.  Bernie let Isabelle push the button on the cuff and after a few times of that she was less concerned. 

I had a lot of time to lay around again which honestly was really nice considering how tired I've been.  My treatment ended around 5:30pm again and Bernie took my IV out, filled out some paperwork with me and was on her way!

Overall my experiences both times were very pleasant and much nicer than going to the hospital.   I still had slight headaches and general body aches but overall my side effects are minimal.  I'm always really exhausted after treatment and usually for the next 2 days afterwards as well.  I've been trying to fight through it and still go out and live my life but it's hard.  If I stop drinking water and Gatorade in the 48 hours after treatment it gets pretty bad. So I've learned to keep up my fluids to keep away the headaches. 

One thing I was spoiled with at the hospital was that I was always given an ultrasound to get the baby's heartbeat.  Obviously at home I don't have an ultrasound machine so I use my Doppler to get a heartbeat as often as I can.  I am only barely feeling the baby move and if I can't find the heartbeat with my Doppler, I start to freak out.  Terrible thoughts go through my head and I wonder if the baby is okay.  Many NAIT babies die in utero from strokes and brain bleeds and doctors don't always know why some do and some don't.  They say it's spontaneous... and that's a scary word for a mom to hear.  That your baby could spontaneously have a horrific complication.  So for the past 2-3 weeks, I've been a bit of mess.  Worrying constantly, praying and hoping that my baby is healthy and that I'm not causing him/her any pain. 

My husband is amazing and he knew that I was a wreck about the baby and also that I'm super nosey about it's gender, so he scheduled a 3D sonogram for me on my birthday.  One of the best things about this sonogram is that Izzie was allowed to come too and she FREAKED OUT!  She was so happy and kept pointing at my belly and then pointing at the screen, saying "OHHHH, Ba-by!!" It's a memory that Aaron and I will never forget and I am so indescribably happy to have been able to see my sweet little baby and be reassured that he/she is doing well in there.

For now my treatments will stay at home on either Saturdays or Sundays in September and then all Sundays in October.  While I know that this will never be easy, I am very grateful that it has become easier than before.  I know I can do it and I'm so thankful for all of the support my family's been given.  Thanks for reading and thank you for your support!


 

My last hospital treatment... hopefully!!

2 Saturdays ago I had what will hopefully be my last treatment at the hospital.  We didn't have a sitter for Isabelle, so Aaron stayed home and my mom came with me. I packed up all of my things and my million bottles of water and off we went.  When we got there at 9am, it was the same routine... pre-medicate, fluids and finally around 11am I was given my IVIG.  My nurse was so awesome and I definitely ended up with another girl crush by the time we were done.  Once again, I was her first NAIT patient and she had a lot of questions for me.  I was happy to tell her what I had been through and she gave me some good options for other places I could look for research articles on my condition. 

During the treatment, my mom was adorable and asked everyone a million questions (just like a good momma should).  One of the main questions that we wanted an answer for was, "What is the difference between this brand and the previous brand I had?"  No one had an answer though, which was a little bit frustrating.  We asked the nurses, the pharmacist and the doctors to which they all answered, "I'm not sure," or "That's a good question." The general consensus we all came to was just what my doctor had said before, that this brand just had less side effects than others.  The ladies in my support group were very helpful and many of them said they switched brands multiple times until they found one that was right for them.  So, I was feeling optimistic that this new brand was the one for me!!

My mom and I haven't really had a lot of girl time lately, so it was nice to be able to hang out with her all day.  She even gave me pedicure (well the best one she could with what she had, lol).  Unfortunately, while we were there my mom got a phone call from our relatives in Texas and we found out that my Great Aunt Cornelia had passed away. She was the sweetest, most caring lady and gave the best bear hugs around.  We were sad for ourselves but she was trapped in a body that wasn't hers anymore, so there was a sense of relief that she can now be free of that and go cause some trouble in Heaven. 

My bestie Natalie came up to visit also because I wouldn't be able to make it to her end of summer cookout that day.  I broke down and I cried for a bit about having to miss out on all of my Saturdays, especially in the Fall-- my favorite season!! So, she brought me a magazine filled with yummy men and some yummy snacks and of course we talked nonstop, laughed obnoxiously and exchanged school stories.  It was really nice and helped to break up my day.  Love you, Nawee!!!

After Nat left, Dr. Blakemore came in and asked the nurses to get me a sonogram.  My mom videoed it for Aaron and it is now one of Isabelle's favorites to watch (mine too).  Baby Wright's heart rate was 150 and he/she was moving all over the place!  I'm still not really sure if I can feel the baby move or if it's just something else... but it was so fun to watch him/her move on the screen.  Around 6pm, my mom had to leave and Aaron was dropping Izzie off at Uncle Danny & Aunt Shara's (and she had a blast), so he couldn't come up until about 7:30pm.  I had a little bit of time to myself and as much as I tried I just couldn't sleep... too much on my mind. 

When Aaron got there we were wrapping up, getting the rest of my IV fluids and discharge papers.  I had a slight headache but per Dr. Blakemore and the ladies in my support group, I took Tylenol and starting crushing Gatorade and water.  The next day, my headache lingered but it was such a baby headache that it really wasn't bothersome.  I was extremely exhausted so Aaron let me sleep in and I made sure to try and get as much fluids and rest as I could.  School was starting on Monday so I really wanted to make sure I was feeling okay. 

I made it though the first week of Kindergarten, just feeling tired both mentally and physically.  I had a gnarly bruise on my arm from blood work so some of my co-workers were a little bit rude about that, and many of them don't know my situation or the extent of my treatments.  However, many of my coworkers are aware of my situation and are incredibly sweet and supportive.  I had surprise chocolate, laminating cut out for me and words of encouragement throughout the week. I feel very blessed to work with people who are also my good friends and have made me feel so loved. 

Since my headache was so minimal this time, I was approved for home treatment... YAYYYYYYY!!!  So my next post will be about that experience and hopefully I will not have to go back to the hospital unless complications arise!  I am feeling very thankful that things are looking up and that my body is responding to this brand better than the other.  Sorry I'm so behind with my posts... School, chasing Izzie and being pregnant are exhausting! Thanks for reading and supporting our journey!!