Monday, June 30, 2008

Plan for the Week

It's taken a while to make the determination, but it looks like Madeline will need to have surgery to close her PDA. Short of the ductus closing on its own (which is a long shot), the surgery will go forward later this week. The good news is that Maddy is otherwise doing well, and (amazingly enough) is actually bigger than many of the other babies that have undergone the procedure. The PDA has been a continuing distraction in her progress, so we're hopeful that the surgery will allow her to start making more positive steps in the coming weeks. Otherwise, Maddy is doing well. Her infection has basically cleared up, and her cultures indicate no other signs of infection elsewhere. Pneumonia is a persistent threat, but the doctors don't see any clear sign of it at this time. Other good news: Maddy has just about returned to her birth weight, which is an important milestone that she has reached earlier than expected.

As for our boy... Milo's PDA is slightly open still, but it's much smaller than Madeline's. The doctor is hopeful that it will close without surgery. Milo is still on SiPAP for oxygen, but his mask is a poor fit, and he's had trouble maintaining his levels. He may need to go back on a ventilator in the next few days, but this is a common scenario for preemies like our little guy. The good news is that Milo is also hovering around birthweight. The kid has impressive strength, and isn't afraid to let the world know when he's not happy.

Sunday, June 29, 2008

Early Morning Challenge

This morning Elaine and I got an early morning call from the babies' doctor with news about Madeline. Unfortunately she needed to intubate Madeline and put her back on a ventilator. Although she had done relatively well on SiPAP, Madeline was having a tough time yesterday evening (6/28) and early this morning. The doctor noticed that she had some swelling in her vocal chords -- which, ironically, may have come from being intubated previously. I received another update a moment ago, and Madeline is doing well on the ventilator. The current plan is to keep her intubated for the next 48 hours, and check her cultures to ensure that she doesn't have pneumonia (which is NOT suspected at this point, but let's all keep our fingers crossed). Madeline will also receive some steroids to relieve her swelling and prepare her for the 400 meter hurdles a the Beijing Olympics. Hopefully, she'll be back on SiPAP in the next couple days.

Quick explanation: The air we breath contains about 21% oxygen. As I understand it, the ventilators and SiPAP machines make it easier for the babies to breath for two reasons: (1) additional oxygen can be added to their air, and (2) the machine itself creates the pressure to assist in opening the babies' lungs. Currently, Madeline needs help with getting air into her lungs, but she is able to make due with very low levels of supplemental oxygen -- she usually receives less than 30%. Milo, by comparison, is OK on the SiPAP machine, but he needs around 30% to 40% oxygen. Years ago, the practice was to give preemies lots of oxygen under the assumption that it would improve neurological development. Turns out the extra oxygen didn't help much, but it did cause Retinopathy and create other lasting respiratory problems.

Saturday, June 28, 2008

Healing Update

A lot of folks have been asking how I'm healing from my c-section, so I thought I'd give you a quick update. I'm healing well and am feeling much more able-bodied this week. I'm off the heavy duty pain meds, and just on a little mega-dosed ibuprofen a few times a day. I'm glad to be off the other pain meds, as they made me pretty darn foggy. I had a hard time remembering medical details about the babies and oh, small things like Madeline's name (I am pretty sure I called her Elizabeth at one point in front of the nurses) and the city I was born in (needed it for the birth certificate info).

I can walk fairly well now, though not quickly, and getting up and sitting down has been more comfortable. Since my pregnancy clumsiness has stuck around and I drop everything I pick up, it's good to be able to bend down again! I have my 2 week postpartum check up next week, but all is looking well.

Madeline's First Cuddle

It was a bit of an up and down day for Madeline today. She was doing quite well, and around noon she was able to come out of her Isolette for her first contact with her parents. Since it was Dad's birthday, he got the honors and Madeline did very well for the entire 50 minutes or so. (She managed to keep her oxygen saturation high -- in the 90s -- with fairly minimal supplemental oxygen.) Unfortunately, later in the day she had some trouble with her ventilator, and she had several "brady" episodes -- all of which were treated with a little extra stimulation.

Milo did a lot better today, but he needed to rest. We kept our interaction to visiting and containment holding. Hopefully we'll be able to hold him tomorrow.

Friday, June 27, 2008

Milo's Tough Day

After a few good days, Madeline is still doing pretty well, but Milo has had some difficulty with his breathing, which has been scary.

Madeline came off her vent on Thursday and is just on CPAP like Milo. This is a little mask or pronged fitting they wear on their nose that delivers pressurized bursts of oxygen to assist them in breathing. It makes them do more work, but is gentler on their lungs than the ventilator. She is tolerating the change well. Her skin has also healed very well, though the infection is not quite over yet. Her last cardiogram showed that her PDA is now categorized as "tiny," down from "small." Because Madeline's lungs are in pretty good shape for her age, they are going to monitor the PDA and see if it closes on its own rather than do surgery at this point. It seems the infection was interfering with the PDA closing, as they suspected. That said, PDAs in children this young can open and close on their own at varying times, so it still needs monitoring. Madeline also has both her eyes open now, and occasionally peeks out to see what's happening when someone is handling her. It's absolutely amazing to see those little peepers. Madeline also had her first breast milk yesterday, fresh from Mama Cow. We hope it agrees with her.

Milo's lungs are unfortunately not as strong as Madeline's, and he has also had a lot of difficulty with the fit of his CPAP. The mask and prongs are simply too big for his little face, and he loses pressure easily and then goes into desaturation. This is very scary, as sometimes his heart rate drops with it, and he has to be stimulated to bring it back up. The doctors have a smaller device they can use, but the nurses need to be trained to use it first, so it will be about a week before he can have it. In the meantime, when he moves too much or touches his face, the mask can move or lose pressure. He had a terrible day of this yesterday (6/27), and it was really horrible to be in the room while he was desaturating and struggling. He looked absolutely exhausted. He did better overnight, perhaps because it was calmer in the NICU then, so we're hopeful he'll stabilize again and not have to work so hard. If he doesn't improve, he might need to go back on his vent, which we knew could happen, but we'll see how it goes. Milo is still tolerating breast milk well, and is up to 1cc every 6 hours, to be raised to 1 cc every 3 hours in a few days. If he tolerates that dose well for 5 days, he can start eating for real. He has been slowly gaining weight on his IV diet of dextrose and lipids, but obviously he will do much better on mama's milk.

Today is Rob's 34th birthday and our anniversary. We hope it will be a good day for the babies as well.

Some pictures from this week:

Welcome to mission control. This is Madeline's Isolette. The computer monitor directly above the Isolette basically gives us all the stats on the baby. Whenever the babies start to have troubles, alarms start sounding. The most common problem is their oxygen saturation -- the doctors like to see it between 83 and 93%.

Madeline resting with her CPAP mask on. You can still see that her left arm is bandaged due to the infection. It's looking much better and will hopefully be entirely gone in the next day or so.

Elaine using a containment hold on Milo to help calm and comfort him. We were unable to hold him yesterday (6/27) due to his de-sats. But things looked better overnight, and hopefully we can begin the kangaroo holding again today. With any luck, we'll be able to hold Madeline for the first time today.

Thursday, June 26, 2008

Milo & Madeline's Birth Story

Word of warning for the squeamish: I don't go into any gory details here (because there really aren't any), but there are some fairly frank descriptions of obstetrical practices.

On Sunday, June 15 (Father's Day), Milo and Madeline were born at 25 weeks, 2 days gestation. I woke up that morning feeling a heavy pressure in my lower abdomen, and like something was weighing heavily on my cervix. I'd had this feeling before, but it had always subsided as the babies moved off whatever they were sitting on. This time, though, the feeling persisted even after I was up for an hour or two. I also had some very, very mild cramping (sort of like menstrual cramping). I looked up preterm labor in my pregnancy books and saw I had two of the common signs, so called my doctor. They had me sit for an hour and monitor how many cramps I felt. In an hour I felt 3 distinct, but not strong, cramps, and a few others that might have been cramps or might not have been. I waited one more hour with the same results and called the doctor back. They told me I should come in to be safe.

I arrived at the labor and delivery department at Alta Bates Summit Medical Center in Berkeley around 1pm. They hooked me up to a monitor, and saw I was contracting every two minutes, but I was only feeling a few an hour. At first they figured I was just having a persistent series of Braxton-Hicks contractions, but when they examined my cervix, I was soft and 2 cm dilated. Then the mood changed dramatically.

I was put in a delivery room and given magnesium (a mild paralytic) to try to slow down and stop my uterus from contracting. I was also given steroids to try to mature the babies lungs in case they had to be delivered. After 4.5-5 hours, I was still contracting every 2-4 minutes. When they examined my cervix again, it was low, extremely soft, and 4.5 cm dilated. Then the mood changed dramatically again.

The doctor had explained to us that if I had to deliver, they would do a c-section, as it would be less stressful for the babies given their age. They needed to preserve their strength for what lay ahead for them, and vaginal delivery would tax them too much. Because my labor wasn't stopping, I went in for an emergency c-section. The babies were born at 8:20 and 8:22 pm. I heard Madeline cry a tiny bit when she was born, but could not see the babies. Two separate teams of neonatologists and nurses immediately took each baby and brought them to the NICU. Rob went up with them and stayed with them while I was closed and in recovery. The NICU brought down photos of the babies for me to see while I was there.

I saw the babies for the first time in person on Monday morning in the NICU. I remember thinking the looked quite good for how old they were. They were still very pink and full of fluid from being in the womb. (They lose the fluid and get darker as time goes on.)

No one knows why I went into preterm labor. I had none of the risk factors except for carrying twins and was feeling very well the week before and even the day before this happened. It was all a shock to say the least, and the speed with which I went from being a healthy pregnant woman to a non-pregnant woman was astounding. Despite the difficult circumstances of their birth and how much we all have to face together as time goes on, we're so thrilled to have our children here with us, and take such joy in seeing them every day.

Two Good Days

Milo and Madeline have had two good days in a row.

Milo is still doing well breathing off his vent, though he has assistance from pressurized oxygen. He has been having a little trouble with his mask fit, which causes is blood oxygen level to fluctuate at times, so the doctors are working on getting him a better device that should help. He can now get his fingers and a pacifier in his mouth with his breathing tube out and he absolutely LOVES his pacifier. It makes him very, very happy, which thrills us. Milo's skin is still very delicate and he has some areas of irritation, but it's doing pretty well overall. He has opened one eye a tiny bit, though not enough to really see much. Milo is getting 1cc of breast milk every 6 hours now, which he seems to be tolerating well. This is not to feed him per se but to get his digestion system going. He is passing merconium, too, which means things are working. When the breast milk hits his stomach, he reflexively sucks, which is just amazing. I have been able to "kangaroo" hold Milo outside his incubator for the last three days, directly on my chest, skin to skin. This helps with bonding and neurological development, and calms him down very nicely. I was able to hold him for over an hour yesterday without him getting overstimulated, and his oxygen levels overnight were very stable, perhaps as a result. Rob gets to hold Milo for the first time today.

Madeline developed an ugly staph infection on the inside of her left arm earlier this week, which we were all very worried about. Her skin is much more delicate than Milo's, and not thick enough to repel any bacteria. (Milo's is really only slightly better in that department.) Thankfully, we have a wonderful skin care clinical specialist and nurse who have got the infection under control and it is going down in both size and intensity. She also has trouble spots under her right arm and on her wrist, but they seem to be healing better. Her blood, thankfully, is clear, meaning that the infection has not spread to her entire system. Her tracheal secretions also are infected, but the targeted antibiotics for this type of staph are expected to clear it all up.

Madeline's PDA (see this link for more information) is still open, and originally the doctors thought they could get it closed with medicine. Unfortunately, the medicine didn't seem to be working, so they were planning to close it surgically. As it turns out, her infection may have been preventing the duct from closing, and it seems that it is getting smaller on its own as her infection clears. So we're hopeful she won't need the surgery. Milo's PDA closed after 3 rounds of medicine, so he was able to come off his vent and eat a bit to stimulate his system. Hopefully Madeline's will close soon and she can start eating a bit and in time be held outside her incubator.

Madeline opened both her eyes a bit yesterday, but is very sensitive to light, so keeps them shut unless she's really interested in what's happening around her. We're of course thrilled to get to see Milo and Madeline eye to eye, but since their nervous systems are so delicate, we don't want to overwhelm them too much.

More pictures soon!

Wednesday, June 25, 2008


Welcome to Milo & Madeline's blog. Though they are still too young to blog themselves, Mom & Dad are here to keep everyone updated on how they're doing and share their photos, accomplishments, and challenges. Thanks for coming to visit with our little ones!

Elaine & Rob

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