By Julie, Greenwich, CT USAThis is the story of Miracle Maggie and Terrific Tom.
PROM at 16 weeksDelivery at 26 weeks + 5 days.
Story added: 2007-01-20
Maggie's amniotic sack had ruptured around week 16/17. She was leaking most of her fluid. Without it, she has no lungs and there's no drug or surgery that can fix it.
I was on home bed rest, the hospital bed rest. Meanwhile, we sought medical counsel, did an anmio-fusion, leaked & bled, and had the occassional contraction. Alas, my hospital say was not as long as hoped.
Maggie is a scrappy fighter! She breathed in what little bit of fluid was in her sack to build her lungs. She beat a fatal blood infection, necrotizing enterocolitis (NEC). She subdued jaundice from hyperalimentation fluids. She came home despite being born in her 2nd trimester. Then, she had projectile vomiting due to dairy allergies. And she's conquering a hemangioma (blood tumor) on her lower left eye. Despite all this, she is a happy, chatty baby ... Now a bit plump due to the steriod for her eye.
Tom is a prince. We're certain that he blocked the cervix from any incoming infection thus keeping his sister and himself gestating. But since he was not distressed in the womb, he was less well prepared. Regardless, both babies triumphed over respirators (with surfactant), sepsis, anemia (with blood transfusions and epogen), apneas (with amniophylline/caffeine), heart murmurs/PDA (with indomethacin), IVs & PIC lines, gavage/bolus feedings, retinopathy of prematurity (ROP), etc and now synergist to fight RSV. Tom is strong and has a strong personality, not unlike his big sister Ellie.
Below are the weekly email updates I sent to friends & family during my PPROM/NICU ordeal. I hope you find it helpful, as I did the stories on this wonderful website. Good luck with your pregnancy/child(ren).
Week 19/20 story: During my routine 20 week ultrasound, we discovered that Tommy (twin A) is a great size in a great environment. However, Maggie (twin B) is a very good size but in a terrible environment -- very low amniotic fluid. It matters most importantly because she need to breath in the fluid to develop her lungs. Without it, she's not viable outside the womb. I was in the hospital for several days to figure out why we have the problem as well as try some general remedies (ie, massive fluid volumes pumped via IV). It didn't work, so I'm now at home on bed rest -- I can only get up to shower once a day and go to the toilet, practically. The numbers are not good for Maggie, so hope for a miracle. And unfortunately I'm in a nebulous time in my pregnancy. If there is a demise, we're putting Tommy in jeopardy because my body may decide to abort the dead fetus instead of just absorbing it (normal at earlier stages of pregnancy). Being born at 20 weeks would be VERY bad for Tommy. Pre-term labor is defined at 32 weeks.
We're not quite sure what the problem is. And even if we did, there are very few remedies. a) It's probably not a twin-twin transfusion syndrome since it's rare in fraternal twin. Additionally, the ultrasound and Doppler shows no evidence of cord fusion. (Basically, this is when the placenta or umbilical cords fuse together and Tommy takes more than his fair share. men. ;-) b) The placenta should not be a problem because Maggie's a decent size. She's smaller than Tommy but within the range of normal. c) The production of amniotic fluid (ie, the baby's urine) is probably ok, since her bladder and kidneys appear fine on the ultrasound. d) There's probably a small tear in her sack. However, we can't find hard evidence of amniotic fluid at the only exit it's got (think "my water broke.") So, we're not certain about the cause. And even then, there's no medicine or surgery that can be done to fix it. I guess bed-rest is to pregnancy complications as chicken soup is to common colds.
So, despite my feeling great (went for a swim the night before my 20 wk u/s) we have to hope that staying horizontal and calm will hold fluid in Maggie's sack, at least long enough for them to reach a "safe" time to be delivered. Otherwise, we have to hope that she gets absorbed by my body leaving Tommy to continue to grow. Depending on which of the multiple outcomes happens, I may be back up in about 4-6 weeks or maybe on bed-rest until they are born in July/August. As much as I don't want to be horizontal (or quite for that matter!) for 4 months, let's hope for the later!
Week 21 update: We've had 1 hospital visit (bleeding, *sigh*), OB visit (scheduled) and Perinatologist (High Risk specialist at NYU, and 2nd opinion). We have 2 heart beats but fluid levels are still terrible on Maggie. She needs about 15 AFI and she has less than 1. The poor thing looks shrink-wrapped. Tommy is still happily swimming in his sack, thank goodness. The Perinatologist said that the down side for Tommy is risk of infection, which we can control with antibiotics, and premature delivery at hopefully a "normal but early" twin due date (ie, early, but not dangerously early). (Of course, there can be another unexpected extreme.)
We'll be getting a 3rd opinion from a highly regarded Perinatologist in the area on Monday; and getting a 4th opinion in NYC on Wednesday. We'll also be seeing a Neo-natalogist soon, too. It's not that we don't trust the other doctors, but you never know what some else might know. We'll keep you posted.
Week 22 Executive Summary: Maggie and Tommy are both growing bigger at about 1 lbs each, +/-. It's a week ahead of schedule and statistically insignificant – but I'LL TAKE IT! However, Maggie is still shrink- wrapped. Well, after four specialists including two of the top 5 in NYC, we have 4 different "recommendations" (although their lawyers would not call them recommendations, understandably … crazy litigious society …). The two NYC doctors' recommendations are very similar but for different reasons. First is wait and see, since risk of infection is high with active reduction (ie, termination of fetus). The other, who's regarded by some measures as the best, recommends wait and see since a reduction does not improve the chances of not going into pre-term labor. Additionally, she's willing to do an amnio-fusion (ie, tank Maggie up with fluid). The research is not complete, with only some documentation from Italy. If Maggie losses the fluid immediately, 1) we know definitively she has a leak and 2) her prognosis is not good. If she holds on to much of the fluid, her prognosis is very promising. If the fluid disappears but does not leak out, we have other issues. We get tanked tomorrow, Friday. Cheers!
Week 22, annotation: sh*t. 4 doctors, 4 recommendations (reduce: 2, don't reduce: 2)… heavy bleeding… but healthy ultrasounds… but still no fluid… death in the family… major work projects for Julian… and as my husband (lovingly) describes it, I'm turning into veal.
Week 23 update: Even though most of the blue-dyed saline that was injected into Maggie's sack on Friday leaked out immediately, there was enough today, Monday, for Dr. Stone to be cautiously optimistic. We're to return on Thursday morning. If the fluid levels are still a bit higher, then we'll do another amnio-fusion. Who knew that Maggie's first "shots" would be like this! Bottoms up! (Yes, she's breech right now and it might be better for her to be bottoms up.)
Week 24: Apologies in advance. I'm not in a good mood and this may be more information than you really want. The summary is that I've been in the hospital. I'm really scared about giving birth any minute now (WAY too early). My husband and father are really scared that I'll have a massive hemorrhage and die (possible but unlikely).
If you want the bloody details … early warning, it's not pretty … I started bleeding heavily on Tuesday -- not good but not a big deal for me since I've been bleeding since April 8th (wk 21). But what scared me was the sharp pain in my belly on Maggie's side at 10pm. It eventually went away but it was pretty intense. So, when the bleeding didn't slow down on Wednesday – I usually bleed a night and slow down during the day – I called my OB (since I wanted to avoid having to call him in the middle of the night!). He was on call at Greenwich Hospital, so I went to visit him there for a check. Since I was feeling fine, I expected an ultrasound then to be told to go home.
They admitted me right away – not because there was anything obviously wrong on the ultrasound but probably because we're getting to the viable stage – and started the paper work to transfer me to my uber-perinatologist Dr. Stone at Mt Sinai in NYC (cr@p! I hate being in the hospital.) I spent the uneventful night and got to ride in an ambulance to NYC. (Neato! I've never been in an ambulance before.) I did LOTS of waiting in a very urban hospital (yes, very busy and a heck of a lot more diverse patients than my small but well endowed community hospital. For the IBMers: former CEO Tom Watson Jr. recently gave $120M to his local Greenwich Hospital. Yes, that's M for millions. There's an entire building/wing named after his wife and him.)
Dr. Stone told me the ultrasounds showed nothing new but would like to keep me overnight for observation. Boy, I am I glad we did! In the middle of the night, I woke up at 2.30am to intense menstrual cramping like pain in my lower belly. Turns out I have having regular labor contractions (yikes!). But the good news was that my cervix was still tight and long. PHEW! By about 5.30am the contractions stopped. When Dr. Stone came to visit the next morning, my usual interest in getting discharged from the hospital as quickly as possible was no longer there. Friday night was mostly uneventful and I asked/agreed to be discharged.
Over the weekend, my husband and I talked. We've agreed that if we're determined to have the best possible outcome, we're going to do whatever we can – including going on hospital bed rest, as recommended by Dr. Stone. I hate being in a hospital. But I hate regrets even more. Additionally, if we were to run into complications, Greenwich Hospital does not have a trauma unit and (to put it as nicely as possible), I'd rather have my babies under the care of the Mt. Sinai neo-natologists.
Week 24+: I'm in Mt. Sinai Hospital. No infection. No hemorrhage. No births. And, I have my first 5th Ave./Central Park view room. Life is good for the Committed Veal (hm, was that redundant?).
Week 25: No infection. No hemorrhage. No births. Had a few moments of drama, but back to status- quo. The longer I'm here means the longer I'm pregnant. And the longer I'm pregnant, the bigger the babies get. So, ironically, I want to be in my veal-box as long as possible.
Just discovered that Gwenyth Paltrow gave birth to baby Moses at Mt. Sinai a few weeks back. I feel very glam now, ha ha.
Week 26 and still pregnant, hurray! We did have 2 episodes of heavy-ish bleeding that sent me down to Labor & Delivery Triage, ugh. And my hematocrit (blood measurement) is moving towards "not good" (medical term, not) which lead to discussions of blood-transfusion (ugh, but just discussions for now). The good news is that Maggie's fluid levels are rising. Dr. Stone thinks that some of bloody chunks may be building a dam at the tear site, allowing fluid build up in Maggie's sack. The other good news is that the veal-box with lousy internet access (ie, limited surfing/shopping) is doing wonders for my AMEX bill. It's not been this low in years!
Week 26, updated: Well, after not bleeding all day Wednesday, I bleed like crazy on Thursday. I was sent downstairs to L&D, but this time I was put on Magnisium Sulfate. UGH! Everyone reacts differently to it, and for me it was like my body/muscles were weighted down with a ton of bricks. My cervix was long and tight. But after two days the doctors checked again. I was 9cm dilated. SH#T. It was too early for the babies to be born. I sobbed. I was rushed to emergency C-section. My husband was not there and I asked the anesthesiologist if I could hold his hand. It was a really bad moment for me.
Saturday, May 20, 2006
Thomas was born at 5.04pm weighing 1lbs 12oz and measuring 13 inches long.
Margaret was born at 5.05pm weighing 1lbs 13oz and measuring 13.5 inches long.
Both cried when born. I didn't see the babies and I didn't believe the doctors and nurses. But as it turned out, we had a miracle. Maggie was born with lungs.
This C-section was really tough on my body and mind. I used all the energy I had to visit the babies in the NICU (in another state). After about 3 weeks, I finally started to feel human again. In the end of the pregnancy, I got contractions that wouldn't go away, per usual. I was put on Magnesium Sulfate which really knocked me out for a few days. That, plus the spinal and the pain killers post partum really did a number on me this time. I have some pain/discomfort in my abdomen but at least I'm lucid now (after 3 weeks).
Week 29, adjusted: Well, what a difference a day makes. If I had sent out this email on yesterday, I would have written that the twins were doing exceptionally well. Alas, Saturday we had the step back in the NICU dance: two steps forward and one step back.
Miracle Maggie has been living up to her name. Yes, she was bigger than her brother at birth and her respiratory system has been stronger since then. Distressed babies are stronger. Girls are stronger (duh ;- ). We're hoping her strength will pull her out of a blood infection which started in her digestive track Friday night. This type of infection, unfortunately, is not uncommon for premature babies. The worst case scenario is that and a step down is brain infection/damage. (very upsetting)
Tommy was off the respirator after one day; and Maggie was off after two days (but she's back with the infection). They passed their birth weights after a week. The original brain scans for both are OK (phew!). The heart murmurs have gone away after the "standard" medication for preemies. And they've had blood transfusions (O+ if you want to donate!). Before the infection, they were both feeding "milk" through tubes into their bellies (but getting most of their nutrition through an IV). Their isolettes' (aka incubators') temperatures are set slightly lower than their body temperatures – meaning they're somewhat able to maintain their body heat. We'll know about their vision and hearing later. We hope to have them home by late July/early August.
DETAILS: Well, I guess my body knew that it was better for the babies to be outside than in (maybe?!). I write that because there was so much gunk in Maggie's tummy (ie, blood, blue dye, etc), plus I had an infection but it didn't cross over to them (thank goodness!). Since we didn't expect Maggie to have lungs, I just didn't believe it when the nurse told me that Maggie cried (!!) And I didn't believe it when she graduated from the high care NICU room to the medium care room after 10 days (!!). Poor Tommy – the protector of his sister, blocking the cervix from labor and infections – is back on the CPAP (continuous positive airway pressure, ie huge tubes up the nostrils) versus the high flow nasal canula (petite tubes up the nostrils). He had the first transfusion (day 7 vs her day 10) but only got one dose of the heart murmur medicine (vs her 2 doses). (Hm … I have a feeling I should not be comparing them like this – bad twin parenting??) His weigh fluctuates more but his body temp was quicker to semi-self regulate. I try to visit them regularly. Julian will take his "paternity leave" when they come home. I want all available hand then! One newborn is tough. I can't begin to imagine two!!
Alas, another test for Miracle Maggie. She developed a gastrointestinal infection (NEC) that's moved to her blood stream on Friday night. We'll know more about the antibiotics effectiveness later this week.
Celeb gossip: For the post-partum stay, I upgraded to a private room. It's the one used by Elisabeth Hasselbeck from "The View." And Ms. Paltrow's room was directly across the hall.
Week 30 adjusted: It's with mixed emotion that I write this update. (Both twins are fine.) The last surviving triplet in the incubator next to Tommy got the same gastro- intestinal infection as Maggie. Sadly, the baby passed Friday night. I became friendly with his mother since our babies were next to each other and had similar due dates in August. I can't imagine what she and her family are going through, especially since (like Maggie) her baby was doing well the day before the infection hit.
Miracle Maggie has passed another grueling test. She licked the (NEC) blood infection and it didn't travel to the neuro system – what a FIGHTER! She's stable now – feeding again and on the nasal-canula.
Tommy must have had sympathy pains – he got a blood infection, too. But his was not life threatening. (Crazy. Blood infections are VERY bad things. But when a non-life threatening infection is "just" a blood infection, I know I'm warped.) He's licked his infection, which also did not travel to the neuro system. He's going well – he's feeding, on the nasal-canula and graduated to the medium care section of the NICU today!
Week 31 adjusted. Happy First Month Birthday!
Tommy is no longer on IV fluids and taking all his nutrition from expressed milk via a gavage (a small tube to his belly). We're pushing him to keep his body temperature even at room temperature. He's in a newborn T- shirt – it looks like a full length robe on him (!). He's generally doing well; however, he does continue to have Brady's and Desats (slowing of the heart and blood-oxygen desaturation).
Maggie did it again. She graduated to the medium care area only to have abnormal abdominal x-rays the next day – the gastrointestinal track is inflamed. (I really don't like these "one step back" moments.) She's pulled through and has started feeding again. You Go Girl!
They're the same weight on their month birthday. Any bets on what dates they'll leave the hospital and who'll be heavier on that day? J (Yes, she has Brady's and Desats for full disclosure.)
Week 32 adjusted: Today is a good day. Actually, we've had a few good days. *knock wood* The babies are stable – and they're starting to look like babies instead of adorable little monkeys. (And they sound like kittens.) They had their first (of many) eye exam – results are "normal for preemies." They continue the "caffeine" for breathing, blood transfusions/epogen and B&D (Brady & Desat).
Maggie has finished her antibiotics and is feeding small amounts of expressed milk continuously through the gavage. She's still on IV for some fluids/nutrition. She's hit the 3 pound mark.
Tommy started bolus feedings today. Instead of the continuous feeding of 90ml over 10 hours, he's getting 20ml every 3 hours – like a "normal" baby feeding schedule. He's a few ounces shy of 3 pounds.
Week 33 adjusted Happy Birthday USA!
Good news: Tom and Maggie are stable/good.
Bad news: We've gone minivan shopping. Ugh.
I got to hold/kangaroo both of them at the same time!! The twins are off IVs, are bolus feeding (25cc of milk every 3 hours which is the max for their weights), getting epogen shots (to build red blood cells) and on the nasal canula at the lowest (or near lowest) settings to help them breath. She's still 3 lbs and he's pushed ahead by 2 oz. They're still in the isolettes but the temperature is set to "room temp."
Week 34 adjusted: The bovine analogy continues: I've graduated from bed- rest veal to dairy cow (ie, pumping milk for the babies).
They're doing well. This past Friday, they both graduated to the low-flow nasal canula. And today, Tommy has been off all respiratory assistance (!!). They're both about 3.5 lbs and 17" (Tom) and 18" (Maggie) long. (FYI, they'd be about 5 lbs in-utero.)
Many of you asked when they'll leave the NICU. The short answer is probably +/- 2 weeks from their estimated delivery date. That's August 21st for 40 weeks (normal singleton) and August 7th for twin gestation. The Mt. Sinai measure is:
Can coordinate suck-swallow-breath, which usually develops around this time.
Can hold their body temperature in the open air (ie, do not need heated or covered cribs)
Not have any Brady's and Desats for 5 days (ie, no slowing of the heart and keeping the blood oxygenated). This last one is usually the final hurdle.
Week 35 adjusted: This is a great week. Maggie is off all respirator assistance. I nursed both babies (er, we tried to nurse but babies and I are not getting it right yet). The are co- bedding in the NICU!
Week 36 adjusted: Maggie's ROP exam not good, but too early to make any definitive statements. Both babies passed their hearing tests. And since they're 2 months old now, they got their first set of vaccines. Ugh. They're not quite 4 lbs yet.
Maggie is having billirubin issues because she was on IV for so long. It's not the type of juandice that can be fixed with the lights. She needs to take medicine.
Week 37 adjusted: Their gavage feeding tubes have been taken out. But 2 day later, Maggie's tube is back in, then out again.
Week 38 adjusted: HOLY MOLY! Maggie is ready to go home. She has not had a B&D in 5 days and she's feeding well. What a mixed emotion day. I'm very happy that Maggie's well enough to come home but tremendously sad that Tommy has to say in the hospital.
Week 39 adjusted: Tom is coming home!