NICU information

A neonatologist finally came to see me today to talk about what to expect in the NICU. She spoke mostly in terms of, "Well, once they get to be 32 weeks..." The NICU folks seem to have two major milestones - 28 and 32 weeks.

Once the babies get into the NICU, they'll get started on IV fluids and put in a warmer. How things go from there depend on how healthy they are. At a basic level, we probably won't be able to hold them much until they are more stable. We can be with them and hopefully hold them every three hours during care sessions (diaper changes, feedings, etc). The longer they stay in me the more likely we'll be able to hold them and bottle/breast feed sooner. Also, if they come out healthy-ish, we can start "Kangaroo Care" or skin on skin contact. If we can't hold them right away, we should be ale to hold their hands or stroke their faces (this is where you can cue my tears). The length of their stay obviously depends on how far along they are and how healthy they are. She said that babies born at 32 weeks are typically in there until 36 or 37 weeks. Babies born earlier usually have to stay until they would have been considered term babies. The girls will be allowed to co-sleep with each other once they are off some of their tubes. Speaking of tubes....

Here's what we can expect in terms of equipment and monitoring:
1) A cardio-respiratory monitor to measure heart rate, temperature, blood pressure, and breathing.
2) A chest tube to keep air from getting inside the chest. If air gets inside the chest, it makes it harder for the lungs to expand and breathe.
3) An endotracheal tube (ETT) that goes from the mouth or nose, past the vocal cords, and into the trachea. This is called intubating and it assists breathing. The kind of sad thing is that because it interferes with the vocal cords, we won't be able to hear any crying (again, you can cue my own tears at this point).
4) Feeding tubes. Preemies get fed by "gavage" or a method where a small tube is inserted into the nose or mouth and goes down into the esophagus and stomach.
5) An incubator to help the babies maintain their body temperature.
6) A ventilator to provide breaths of certain sizes at certain rates.
7) Catheters to allow them to take blood and give IV fluids.

We can expect a lot of neonatal tests including, but not limited to:
1) Blood tests for all sorts of things like infections, effectiveness of breathing, and other blood components.
2) Ultrasounds to look at brain hemorrhaging. She said babies born at 32 weeks usually don't get this. However, with mono/mono twins they'll probably do it no matter what because they're at an increased risk for passing blood clots to each other.
3) Depending on how old they are when they come out, a retinal eye exam.

Some of the problems they may have in the NICU include:
1) Anemia
2) Apnea (stops in breathing). She said that at this hospital, they don't really discharge babies with an apnea monitor for the home. Instead, they wait to discharge until the babies can go at least 5 days without an apnea episode. Apnea can occur with pretty steep heart rate drops. Almost everyone I've talked to with a preemie has had to learn how to tap on their babies to get them to breathe again.
3) Gastroesophageal reflux (GER) where the babies will spit or vomit up food.
4) Intraventricular hemorrhage (IVH) or bleeding on the brain.
5) Respiratory distress syndrome when the baby's lungs aren't fully mature.
6) Retinopathy which is an eye disease. I'm not sure, but I think this is mostly fixable with laser surgery.

And lots more - too many to list. In terms of lifelong disability, once we get to 32 weeks we'd be looking at learning disabilities, ADHD, etc. She said the earlier they're born and/or the sicker they are in the NICU, the greater the chances of these problems. The good news, I'm past 28 weeks so some of the really, really scary stuff is hopefully past. If they're born before 32 weeks they'd get an evaluation from a Part C agency (for those not in the "biz" Part C is the early intervention program. All of Alex's therapies came out of Part C).

I also asked (just because how the heck would I know) if the babies wear clothes in the NICU. She said not for awhile.

I think that's it.

Take care,
Kris

Ultrasound

I saw my other doctor today for an ultrasound looking at growth and cord notching (indicative, according to one article, of cord knotting). My two doctors seem to have different philosophies about this whole mono/mono thing. Today's doctor talked about going to 35 or 36 weeks. So, who knows?

Okay, here the scoop....Evelyn's weighing in at 2.9 lbs. Clara's a little smaller than I had hoped at 2.3 lbs. This means Clara only gained .05-.1 lbs in 2 weeks. My doctor seemed unconcerned. I, of course, will be kept up all night :) They also checked the blood flow in the cords and all looked well there. They also didn't see any notching in the cords. Oh...and my cervix is still long.

This doctor also talked about doing an amnio. My two doctors seem to disagree on two main points -1) when to deliver and 2) whether or not I should have an amnio to help determine lung maturity and, therefore, delivery date. I want to agree with today's doctor about the later deliver and the other doctor about not having an amnio. Basically, I want the best of both worlds. An amnio just seems a little dangerous with two babies in there. I'm worried about hitting one of them. I guess we'll see as we get closer.

In other exciting news one of my floater friends gets to go home tonight and the other will likely go home tomorrow. I'm excited for both of them even though I selfishly will miss the company.

Moustaches

Not much to post today. The girls have been behaving. My doctor stopped by earlier today to talk about doing an ultrasound tomorrow or Tuesday. We'll take a look at the cords and the blood flow in them. If I can make it to 31 weeks, this ultrasound will help decide when we schedule a c-section. It's looking more like 32 weeks instead of 34 weeks given the decels Evelyn's been having. We also talked about the contractions I've been having. She's not concerned at all since my cervix is so long. She said that since it's so long, tomorrow's ultrasound would also be the last time they measure my cervix. Cervical length is not my issue these days.

Papa came in yesterday and it's been nice having him here. Alex is obsessed with his moustache since he now knows two people with moustaches - Papa and Mr. Potato Head. I'm hoping Papa will get to go to the ultrasound with me so he can see the babies and the cords.

Other than that, not much to report. We're just watching the girls and hoping their heart rates stay within the normal range. 5 more days until I'm 30 weeks. The survival rate at 30 weeks is pretty high, as is the handicap-free rate. It's amazing to me that I'm actually hoping for 30 weeks. My pregnancy with Alex was so carefree and I really took for granted his health. I just assumed everything would go well. This whole experience has shown me how fragile this and other situations can be. A friend who went through something similar about a year and a half ago said something very true - that most women don't experience the dark side of pregnancy. I hope that all those I know who are trying to get pregnant or who are pregnant continue to not experience it.

On a cheerier note, Lexie told me that if I keep clicking up on my remote past the radio stations there are more channels. I'm happy to report I've caught up on Project Runway.

Take care,
Kris

Bunk beds

My afternoon monitoring session was incomplete because the girls are laying on top of each other like bunk beds. This is making it basically impossible to detect the lower one's heart rate underneath the upper one. The resident did an ultrasound instead to make sure babies hearts looked good. She also checked to make sure they're moving (believe me.....they're moving) and that they are taking practice breaths. She said she was much more reassured by the practice breathing than by anything from the monitor. It's funny (well, not ha-ha funny...) because as the days go on and I learn more, I have less and less faith in the NSTs (non-stress tests, aka monitoring sessions). Basically, no one really knows what it means if the heart rates drop. The use of the monitors has done nothing over the last 30 years except increase the rates of c-sections. I also found out that plenty of c-sections have been done because of drops in heart rates that ended up being unnecessary. But, they do the monitoring because it's all we have. It's just, apparently, a pretty inexact science.

I signed my consent form today for a c-section and added on to it to do a tubal ligation while everything was open. No more babies for me after this is all over.

I hope my last session goes well tonight - although, again, who really knows what that means. If I had requested last night's session 10 minutes later we wouldn't have caught the first decel and I would have been off in an hour and, therefore, we wouldn't have caught the second decel. It's all a matter of timing. What looks good one minute could have been scary 5 minutes earlier. The only way around this is to do 24/7 monitoring. Given the inconclusive nature of the monitoring and the mental anguish that goes with the monitoring, I'm glad 24/7 was not my doctor's recommendation. Believe me...anyone who thinks being at the hospital is a nice break and relaxing is mistaken. Waking up each day fearful of an emergency c-section of premature twins is never relaxing. The monitoring sessions are scary. The variables are scary. The decels are terrifying.

Do I sound tragic enough yet? Whatever - it's my blog and I can be as tragic as I want to. :)

Take care,
Kris

More worry

Last night was another trying night. Evelyn had two more decelerations (she got down to the 80s during the first one and the 70s during the second). I got put on continuous monitoring from 8:30 last night until 7:30 this morning. We called the Hightshoes around 11:00 and had them stay the rest of the night with Alex so Greg could come to the hospital. They gave me an Ambien to try to help me sleep a little bit. It worked a little, but because I was stuck in the same position all night, I didn't sleep well. I was also having some contractions because my bladder kept filling up - apparently your bladder can irritate your uterus into having a contraction. The good news is that she's recovering well from her decelerations which, hopefully, means she's not causing herself permanent damage. My doctor didn't seem to think the heart rate issues were because of cord accidents. So, something else is going on. She said a cord accident would look more like a spike in the heart rate and not a gradual decline, plateau, and gradual incline.

I went back on around 10:00 this morning and everything looked fine. I'll go back on later today. For now, we're just watching them. Our doctor is "worried" but not rushing me off to the OR quite yet. If Evelyn keeps having issues a very premature delivery is likely. I'm 29 weeks today and I'm guessing I'll be pretty lucky to make it to 30 weeks.

So....all this information is mostly to let people know what's happening so I don't have to keep repeating the story on the phone or in person. I'm pretty tired and freaked out, so I'm closing up shop for most visitors and phone calls for a few days. I'll let people know if/when I'm for it again. If you really want an update, please call Greg on his cell.

Take care,
Kris

All is well

Babies have been monitoring fine since Monday. A few variables, but otherwise fine. I've got a little bit of a cold which seems to be making me kind of lethargic and prone to naps. I'll update more tomorrow.

Take care and have a happy Thanksgiving!
Kris

More decels

Each day keeps getting worse and worse. I'm hoping today is a turnaround day. Yesterday, Evelyn had another deceleration- this one longer, lower, and worse than the one on Saturday. So, their heart rates are supposed to be between 120 and 160. On Saturday she dipped to 100 or 105, but came promptly back up. Yesterday she dropped to the 80s, stayed there for almost a minute, and then took several more minutes to recover. A little while later, her heart rate jumped to the 180-190 range and stayed there for about 10 minutes. During that 10 minutes she continued to have variables meaning she'd drop way down, then go way back up, drop way down again, and go way back up again. It was torture just waiting for her to regulate herself. It all started around 3:00 yesterday when I went out to the nurse's station because I couldn't feel Evelyn moving. I ended up monitoring until 8:00 because every time she'd act up, I'd get assigned two more hours. Towards the end of the session, Clara then decided to hide from the monitor which bought me the 5th hour trying to get her on continuously.

I'm hoping today goes better and that the girls are doing well. Everything is really out of my control, but it's still really difficult to deal with all the heart rate issues.

Take care,
Kris