Wednesday, February 26, 2014
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.
Friday, February 21, 2014
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.
Wednesday, February 12, 2014
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.
Monday, February 3, 2014
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.