Transfusion #2

On Monday we got the news that, even though our little guy is still looking happy and moving around well, it was time to do another transfusion. I had sincerely been hoping that this wouldn't have to happen again, but somehow also felt a bit more prepared for this one. I learned so much more about the transfusions and all the changes that happen in a baby's body because of them.

Basically, once a transfusion has happened, Baby Boy 2's bone marrow stops making red blood cells because the body is showing that there are plenty to go around already. Naturally, these adult RBCs start to die off after a bit, and the little guy's body just isn't ready to make their own just yet. That's when the dopplers spike suddenly, and now the range has shortened. The cut off used to be 1.5, now it's about 1.32. He was at 1.34 Monday. They got me in for a non stress test to really be sure he was doing okay despite possibly becoming anemic again. Being at 31weeks, we're at this precarious spot of timing being good for a transfusion, possibly carrying him through to 34weeks without another one, and the procedure actually throwing me into labor because we're yet again bugging my uterus. Thankfully there are many ways to slow or stop labor, but I still want to get into that position needing them!

We got set up for the transfusion Tuesday. I packed a bag this time because, really, we could be having him and we need to be prepared. The important things to have were our Korbin Bear, the NICU booklet for me to peruse in case there was anything else I needed or wanted to be prepared for, and our birthing plan. Thankfully there are still some things we can have a say in, despite a possible emergency c-section and our little guy most likely being whisked away immediately to be sure he is fine.

Feeling as prepared as I could be for another extremely scary procedure that I still wish we didn't have to worry about in the first place, we checked in and the set up for the procedure began. I was having the occasional contraction, so they checked my cervix and then gave me a shot of terbutaline to stop them as they can interfere with the procedure. They immediately calmed down, thankfully.

This time I asked Ry to take a few pictures. They don't fully capture the controlled chaos I feel surrounded by, but they do show just how many people it takes to do this relatively quick yet risky procedure:

Everyone looks so much more spaced out from this perspective, but it feels so claustrophobic from mine. What I have to remember is that it is truly amazing that procedures such as this one exist to more safely bring children like our Baby Love 2 into this world. Without it, he'd be struggling, possibly having been born at 26weeks due to his anemia starting then.

Right now, he's a happy little active guy, squirming and kicking and punching and growing still. And he's still right here:

(All I have to show for the procedure is that band-aid, it makes it look like it was really nothing!)

Now we're just hoping to make it another few weeks, with 34weeks being our new goal now. Basically, he'll most likely be needing a transfusion by then, but the transfusions are easier to do on him outside of me at that point so we'd deliver and then he'll be treated as needed afterward.

My only concern at the moment is keeping him in my belly until then. I have been having contractions today, but the docs already determined I'm not laboring, my cervix is fine and doing it's job, and so I was still discharged. I have to keep reminding myself that they trust that my body is fine, so I need to trust that all is fine as well. Of course if the contractions do become more rhythmic and intense, I will call and go in if needed. Anything to be sure we make it as far as possible!

This whole process is just so stressful, and so I'm relieved to be done with the second procedure, and hopeful we don't need to go through this again. I'm trying to remain as calm as is completely possible. And I'm trying to trust that we can do this. That we can get through the next few weeks safely and without too much more worry (surely there can't be any more than what's already been thrown our way, right?).

Because we got a lotta love to give.

NICU Tour

Last Friday we took a tour of the NICU where our little guy will be for what I seriously hope is not too long. We also got to sit down with one of the neonatologists and hear her idea of how things will go knowing our case history, and ask any and all questions we may have. What an eye-opener this meeting was! I feel like I'm still trying to digest all of the info we got during the meeting.

The NICU is set up with very right security. No glass walls for random people to look in to see what's happening at any given moment. Ry and I will each be given an ID bracelet at the time of the little guy's birth, while he'll two first thing in the delivery room. These bands are Ry's and my entry into the NICU, just the two of us. The babies stay in groups of six, but each isolette has it's own fridge for breast milk, rocking chair, and a curtain for privacy when needed. There are a few rooms parents can request to stay in over night, however, we can only use them for two nights during his whole stay. We'll only really have immediate family members (grandparents, aunts and uncles) allowed to visit, and that can only happen one person at a time as they have to be with either Ry or myself to be allowed into the NICU.

After the tour we sat down with one of the neonatologists where we were able to lay out our (probably really my) biggest concerns/fears and then she laid out how she predicts things will go knowing his particular case.

My biggest fear is the idea of being discharged and having to go home with our little guy, because he'll be in there for a while compared to me. We've already left once before with empty arms, how can we do that again? It's such a difficult part of all of this to try and stomach. My other fear is not having their support in me being able to provide his nutrition while he is in the NICU.

Best case scenario, we get further than we think we will, and then we'd have an opportunity to spend a few hours together right after delivery. I would absolutely love this. But the reality is that he's going to need some immediate attention for many reasons.

First, being premature, they've got to make sure he's breathing okay, which he may not be on his own just yet. The steroid shots only work in the week they are given. So say we have him at week 34, but we've already most likely had a second transfusion (before which we'd have the second course of steroids), we're all just hoping he's developed enough to breathe on his own.

Another issue with prematurity is that the stomach and intestines actually aren't quite ready for actual food, even breast milk. So he'll have to be incubated and fed a basic sugar water type mixture. They can and will swab his mouth with colostrum/breast milk, which is so reassuring that they want to do this. It provides so many good antibodies for him that his body needs, especially being premature. Eventually they'll switch to breast milk, but it will most likely be via a tube at first, and then a bottle. And then hopefully he'll have the energy to do the rooting to attempt breast feeding. All of this takes a considerable amount of energy, so I just hope he's born big and strong as can be so feeding is easier on him.

The biggest issue he'll have is the bilirubin build up from my antibodies breaking down his red blood cells. He'll most likely need a transfusion immediately after birth (which would be why we have him preterm, it's easier to transfuse on him directly than in utero once you hit week 34). And then he'll need the bili lights on him for hours and hours. I asked about the bili blanket, but honestly, the risks of not using the light enough are just huge in my mind. Basically, a build up of bilirubin can eventually cross into the brain and cause permanent brain damage. And the antibody issue gives him a huge amount of bilirubin to deal with. Yup, use the lights.

Because he'll be a c-section baby, I won't be able to go with him to the NICU, but Ryan can, and will. Once I'm stable they'll take me to our new little guy on a stretcher. As much as I long for that immediate skin-to-skin contact time, I need to know he's going to be okay. That is first priority. I didn't think I'd get to that point, but I'm glad I finally have. It's been a long and difficult grieving process, mostly internal, but Baby Love 2's health is really what's most important.

There are still things I can fight for, like the breast feeding, and thankfully the neonatologists want the babies eating breast milk over their formula. However, this leads me to my first fear: leaving the hospital without him. They will even tell me to go home. Why? Because really, I can't produce a good amount of breast milk for him unless I'm sleeping and eating and healthy. Recovering from a c-section will take more time, but Ryan and I have already started making our daily plan if him dropping me off, he'll go to work, then he'll come and stay with us for a few hours before Ry and I head home for the evening. We do still have the dogs at home to take care of, and we can't just forget about them. It's going to be hard to balance it all and get through it. But we'll just have to do it.

Of course there were random things to go over. Like clothes; do we provide them? Can he wear clothes in the isolette? The hospital actually provides them, but we can certainly bring him his own, we just need to label them clearly. We can also slightly personalize his area. I'm thinking of bringing our Korbin Bear, as well as a blanket to keep there. It will be hard for me to leave Korbin bear there overnight, but he'll be needed there to watch over his little brother while we're away.

Overwhelming. I think I'm still overwhelmed. The perinatologists made it sound like he'd hardly be in there at all. But really we're to expect 4-6weeks. Basically, however early you have your baby, the time till they're discharged is what we weeks it takes to get them to their term due date. Sometimes they can be released earlier, but with the bilirubin issue we aren't expecting this.

Whatever it takes to be able to bring him home healthy and strong.

Because we got a lotta love to give.

29 weeks

Over the weekend I lost so much sleep as my anxiety built leading up to Baby Boy 2s check up on Monday. I even started having nightmares that we got the news that it was time for his second transfusion, which I am terrified of having to go through again. But the check up brought such relief I couldn't help but cry as I saw the numbers pop up during the ultrasound.

The little guy is doing great still, thank God! His dopplers are normal (multiple of the median was 0.8), and we also did what's called a BPP. This just monitors him throughout the ultrasound for how much he's moving, is he breathing, and a couple of other things. He was taking big gulps, which was so neat to see in profile, breathing through his nose, which is apparently difficult to catch as it's not something that happens constantly at this point. He even had a full bladder, and then peed! His heart was amazing to watch, and then the tech was able to visualize the main artery coming off of the heart. Baby Boy 2 still has his amazing lips, and was pulling on his feet, maybe to try sucking his toes? He's sucked his thumb a couple of times on ultrasound already.

These things are just so incredible to see. I know most don't have so many ultrasounds, so I feel so fortunate to be able to see his development and how much he's progressing on a weekly basis.

So now we have yet another week of relief, can we have at least three more? That would be just incredible. But, just in case he has to come sooner, Ry and I are doing our best to be prepared by touring the NICU this Friday. I have a million questions, and I am actually feeling some bit of excitement. Dare I say that it makes things feel more real? There is definitely a nervous excitement building now. Excited that we keep passing so many milestones, but nervous that I'm going to jinx things by even recognizing the excitement. I remember hitting 24weeks with Korbin and thinking, 'oh my god, this is really happening!' The excitement and joy in that thought were just incredible. I think of Korbin all the time, and I miss him so much. It's so unfair that he isn't here to help us get ready for his brother. And yet I get the feeling he is always with us, taking care of his brother and pushing him along.

We still have so much to get through, and I just wish, hope and pray through it all that we're bringing Baby Boy 2 home!

Because we got a lotta love to give.

28 weeks

Wow, another sigh of relief this week! I'm at the point now where I feel like we're on borrowed time, in a sense. I mean, we only got to 24w5d with Korbin. There was no gaurantee we'd get past that point with Baby Boy 2, especially with everything being thrown our way.

But I'm not complaining, and I will take it!

Another ultrasound today, and my cervix looks fantastic, and the little guy's dopplers are at 0.9 again. !!! Thank God!! He's super active, even kicking the ultrasound probe uber hard during the ultrasound, haha. The past two ultrasounds have been with an affiliate practice, and they love to give patients pictures. I love that they love to do so!

A perfect profile...and then we got a couple 3-D pictures:

Chubby chipmunk cheeks!

And he was breathing and sucking his thumb too. All in all, a very good ultrasound appointment.

Then I met with the perinatologist, and we went over my always long list of questions. After hearing about someone else's experience with the bili light being due to her baby being premature, I wondered if that's why this little guy would need it, and not for the blood breakdown byproducts like I had thought. Turns out there are many reasons, prematurity being one, but also the byproduct build up issue, which is what our next little guy will need it for. I wasn't worried about the light until I learned recently that it can take away from bonding time and even the ease of breast feeding, both things I so desperately need to go well as I missed out on them with Korbin. A friend mentioned that there is a bili blanket, which can facilitate the bonding and allow for easier breast feeding, so I will have to discuss this at my next appointment.

I had to ask about future IUTs, as we are still expecting to do two more during the pregnancy. Does the risk if preterm labor increase with each one? The risks to Baby Boy 2? Infection? No, except after 34 weeks which is why delivery is the best option instead attempting an IUT. Once he's born, he can receive blood transfusions much more easily and with much less risk than while in utero. Plus, just being at 28 weeks now increases his odds of viability by 90% already, and more and more with each week we get to at this point. That was so reassuring to hear, and we'll let this little guy keep cooking for as long as possible!

Such a major hurdle to have gotten past, and I didn't realize we were passing it just yet. I thought we'd have to get to 32 weeks to see odds like that. But it's good to know he'd do so well if he had to be born sooner than later.

Keep cookin' Baby Boy 2!

Because we got a lotta love to give.

Relief

Even though it's temporary, I'll take it. Baby Boy 2, Ryan and I kind of need a break right about now, and yesterday's check ups finally have us one.

I had an ultrasound to check the little guys dopplers. As time goes on I understand these more and more, and can even predict where he is depending on the numbers I see. Basically we're looking at the middle cerebral artery (the MCA) and checking the blood flow rate through that vessel. Ry and I had already prepped ourselves for the little guy needing another boost of blood this week, so the quick ultrasound left me totally shocked. His Doppler was fantastic, the MoM being 0.9! In the lower side of normal, instead of the higher and higher side since we first started this process.

We got a couple of pictures for the first time since 18weeks, and one is my favorite:

Look at those lips! So adorable.

Later in the day I met with perinatology to review things. Since last week's transfusion, my list of questions just kept growing, but the doc was patient and went over every one of them in detail for me.

One thing I was worried about was bruising of the vessel in the umbilical cord that they have him blood through. I only just got a bruise yesterday from the IV I had, could it still bruise and cause harm? Fortunately, a reaction like that would be immediate, and they look for it before they decide the transfusion is completely done. Whew!

And it turns out that it's safe to do two courses of the steroid shots for lung development. The next and last course will happen when the need for another transfusion comes up (which I seriously hope isn't for another week or even two). I thought it was just the one course I already received and that was it. I know they can help, but the doc assured me that babies born after the steroid shots do so much better than those without any steroid shots at all. Good!

We still have at least two more transfusions to look forward to, and that honestly scares the shit out of me. I don't think it's the preterm labor worry so much any more but just the small percentage of the time when the baby doesn't do well. The first one went so well, can that happen again? Twice more even? Almost seems like too much to ask for, but they just have to go well. They have to. Because we're bringing Baby Boy 2 home. 

One other thing that totally shocked me was the doc telling me how stoic I was for last week's transfusion. I was a wreck inside and out, or so I thought. Maybe it was just inside and all the amazing people saying their prayers along with us gave me the outward boost I needed to have to show that our little guy could handle this.

Through all the fear, I've got to have faith. The procedure is life-saving for Baby Boy 2, but knowing the risks doesn't make walking into each procedure any easier. We just need to keep praying and having our pep talks with the little guy that we'll get through this and being him home in the end.

Because we got a lotta love to give.

Overwhelmed

Exhausted. Relieved.

That's the simplest, quickest way to describe this week so far.

Monday was the start of 26weeks for Baby Boy 2 and me. We had our usual check up and ultrasound set with perinatology, and despite last week's appointment going so well, I knew we were headed into dangerous territory.

Call it a mother's intuition, but last week I felt so calm and confident that this little guy was holding out and able to keep up with making his red blood cells despite my antibodies continuing to break them down. Sure enough, his do pokers looked good and we were free to go. Monday went so differently.

I was nervous, anxious, and I just knew somethig was wrong. The numbers looked high even to me with my little bit of understanding. What sealed in my fears was when the ultrasound tech came back after reviewing with the physician to take just one more picture: the exact location of where the umbilical cord enters the placenta. There's no other reason to know that at this point (at least that I know of) except to plan for a transfusion.

Despite how active our little guy always seems to be, he was now on the losing side of a battle between himself and my body, which is supposed to just nourish him and support him till he's ready for the world outside. I broke down completely when the perinatologist was reviewing everything with me. It's a life-saving treatment for our baby, but it definitely comes with great risks. Preterm labor, fetal distress, even fetal demise in 1% of cases. That's what totally killed me. We've been in those small percentages so consistently (with losing Korbin, having these antibody issues, and now with Baby Boy 2 actually needing a transfusion) that I just lost all hope for a moment. I broke.

Despite my reaction, the perinatologist seemed quite positive about entering into this next phase. With my placenta anterior again, the entry for the umbilical cord has ended up at the top edge, leaving it extremely easy access to the perinatologists when doing the transfusion. Something I was frustrated to learn early on in pregnancy has now become a huge relief.

Going back to work Monday was not an option. I could not stop crying and was just a total wreck. Thankfully I work for extremely supportive employers who understand it can be hard to give your best when you're feeling the worst. I took Monday to try and collect myself, and tell immediate family what was happening now.

Tuesday I went back to work, but it was mostly to clean up things in preparation for my absence. I had prepared myself for having Baby Boy 2 this week, but hopeful he'd be fine. So I needed to leave  work in a good place. Plus I had appointments all day long in preparation for Wednesdays transfusion. I received the steroid shots to help Baby Boy 2s lungs develop in case of early delivery. I had my usual check up with my OB (which became my last with the new developments). I had to have blood drawn at the hospital to ensure we got the correct blood for our little guy. And then I decided last minute to check out the lactation specialists at Swedish.

After my milk did not come in when I had Korbin, that has been one of my biggest fears with this pregnancy. We know we're having this little guy early, so will it not come in again? Well I'm so glad I walked in and got an appointment right away as I learned so much about what I can and need to do to ensure my milk comes in and I can feed and nourish our next little guy, even when he's in the NICU. Somehow this appointment helped me feel prepared for whatever was to come on Wednesday.

Wednesday we got up and ready to get to the hospital early for an ultrasound first. Sometimes the steroid shots can temporarily lower the affects of my antibodies, letting baby catch up a bit and not be anemic at this moment after all. I was really holding out for this, but it was not the case. Ry said he'd rather just do the transfusion and know our little guy is just fine instead of waiting and maybe things getting worse. While I agree, the procedure still scares the shit out of me, and I just broke down again for a bit.

Next was prep for the transfusion, which happens within a labor and delivery room. It was a whirlwind of doctors and nurses and staff prepping me and everything they needed. Each one took a moment to ask how I was doing. I was just doing my damnedest to be as calm as possible. Our baby's life is now truly in their hands and I had to find some trust in them.

I went under conscious sedation at about 11:30am while Baby Boy 2 was paralyzed temporarily (such a scary thought). I could only look at the ultrasound machine and watch the blood flow in, and that's all I really remember. Then it was done and they were out and I was passing out exhausted and relieved after hearing them say it couldn't have gone better. Thank God.

Baby Boy 2 was monitored for a good heart rate and return of movement, while I was then monitored for contractions. Three hours later all looked good, it was noted repeatedly that we have such a happy little guy, and we were discharged. I did worry all night that I'd feel contractions, but nothing. Again, thank God.

We made it through and it went so well! We're still pregnant with our happy little guy kicking and squirming away, moving forward to 27weeks next Monday. Every day past 24w5d is a day of increased viability. Ryan was born at 28weeks. And Baby Boy 2 has had some steroids now to help with lung development. All good, positive things right now.

We're not in the clear just yet, however. Baby Boy 2 has had a good boost of healthy blood cells, but he'll need more to keep getting him through this pregnancy to a healthier delivery date. Possibly next week for the next one. Then hopefully we can space them out about 2-3weeks between transfusions.

So now we're looking at maybe mid-March for having our little guy. We're ready, and yet we can wait till then to meet him and take him home.

Because we got a lotta love to give.

Perinatology, take...???

I've lost count already. Four? Five? Anyway, the next blood flow check was today, new doc met, and much relief felt. We're not in the clear, but we are STILL so far so good. Whew!

The ultrasound was a full anatomy scan, as well as checking Baby Boy 2s blood flow. What they need to know now is how big he is in the off chance they need to do a transfusion. At this point, that would still be about three weeks out, so I don't want to focus on that. It was so good to see how well he is developing, and before even seeing the doc, the original doc I had been seeing (who reviewed today's ultrasound too) actually came in to tell me herself that things look good today. Yay! And my cervix is still cooperating. Yay again!

Next I met with the doc to review everything. I think I finally understand what this cut off number is, the 1.5 I've been freaked out about. The measurement of blood flow through an artery in Baby Boy 2s brain is taken in cm/s^2. This rate is then compared to a median that is known for each gestational age (it changes as baby grows and develops) by dividing the measured rate by the median rate to give what multiple of the median baby is at, 1.5 being one and a half times the median rate, and the cut off for normal to abnormal blood flow. Today he was at 1.2! This can fluctuate and change as he keeps growing, and is good in normal range right now. When I found out it was okay today, I sat and had a chat with Baby Boy 2 about how well he's doing, and continuing to grow and be strong and make his red blood cells so he can stay healthy for as long as possible.

We also talked about my cervix. Apparently at this point it's become a non-issue. At 24weeks, if it measures normal, then the likelihood of anything happening to it (aside from contractions causing it to go away) is next to nothing. We'll still monitor it, but it is no longer a reason I'd go into labor early. Just need to keep hydrated and calm and relaxed as possible!

So, good news today. Definitely needed! I still have an appointment next week, but if things look normal still, we're back to monitoring every two weeks. Another yay! Can we keep the good, relieving news coming?

Because we got a lotta love to give.