These are copies of the e-mail updates that I sent out during our five-week battle with TTTS, as well as those sent out to spread the word about how our girls have been doing. If you've missed an update, you can find it here.
Subj: Requesting Your Prayers
I want to apologize, first. It's been quite a while since I've sent anything to most of you, and I had actually meant to write last week to tell you all how well our pregnancy is going and to wish everyone well. Unfortunately, things took a turn for the worse on Friday. Now, I'm asking for your prayers and "positive vibes" during a very difficult time.
On Wednesday (12 Feb) the doctor called and told us that he had seen something on the latest sonogram--done the previous Thursday--that worried him. He asked us to bump up what is normally a routine visit to the University of California at San Francisco Medical Center. It worked out for us, because we had planned on visiting San Fran this weekend, anyway.
At the appointment, we found that we are having two girls, which we thought was great, but then the bad news came. The girls are identical twins and have developed Twin-Twin Transfusion Syndrome (TTTS). I don't know if any of you are familiar with this, but it is a condition in which one baby provides all the blood to the other, sometimes due to unequal sharing of the single placenta. The problem results in an imbalance of fluid in the two babies (one produces too much, the other can't produce enough). Apparently, it happens in about 10-15% of identical twins and is a life-threatening condition for both babies. You can find out more at the websitewww.fetalmd.com.
Helen is doing fine, physically, but our daughters are having a rough go of it. Baby A has already become hydropic, which means she is in a condition of heart failure because of all the extra fluid she's producing and moving, while Baby B is working her kidneys very hard to provide blood for both of them.
On Friday night, the doctors removed about 2.3 liters of fluid from Baby A's amniotic sac, in the hopes that the removal of the fluid would balance out the condition, as it sometimes does. The doctors are not optimistic, however. When a baby has already become hydropic, the procedure only works about 6% of the time . The next step may be a procedure in which they will have to close the blood vessels between the twins using a laser inserted into the uterus, a procedure done under general anesthesia. As dangerous as this procedure is, it does significantly improve the babies' chances, as long as there hasn't been too much neurological or other damage done by the condition.
Yesterday, we had an early sonogram and learned that Baby A does not appear to be producing as much extra fluid, and the doctors were able to see Baby B's bladder, which means that she is producing urine. Those two good signs give us cause to be more optimistic, but we won't be certain about things until Monday.
At this point, I think our doctors' goal is just to get both babies past the 28-week point, when they have a chance at surviving outside the womb without long-term defects. We're at 23 weeks as of yesterday, so that's a long road to hoe.
Helen and I are asking that you keep us and our daughters in your prayers. We are holding together well, having faith in God that things will turn out as they are meant to and hoping that the babies will be fine. We have been blessed to be located in an area where UCSF is so accessible, since this is an area of concentrated knowledge on the syndrome. One of the doctors in residence there, Dr. Sandberg, is one of the top doctors in the world working on TTTS.
I'm sorry I haven't sent much out until now, and then I have to come with bad news. Helen and I pray that you are all doing well, and ask that you pray for us, too. Our e-mail will be accessible throughout our time in San Francisco (not sure how long that will be), so your well-wishes to Helen would be welcome.
Paris E. Crenshaw, III
Hello, again, everyone.
I want to start off by thanking you for your kind words of encouragement. They really do mean a great deal to us. I've passed on all your messages to Helen and she sends her thanks, as well.
So far, things are actually looking a bit better. Yesterday afternoon, the doctors decided to do another sonogram in the ultrasound lab. Orginially, they were going to wait until today to take a look, but I guess they changed their minds.
The preliminary results are encouraging. Baby A (recipient/hydropic baby) still does not appear to be producing an excess of fluid. Baby B (donor/smaller baby) has a clearly visible bladder, which means she is definitely making urine and there seemed to be more fluid around her than the day before. These signs are definitely positive.
Today's plan seems to be another sonogram, followed by an MRI, to make sure the babies haven't suffered any brain damage as a result of these difficulties. We are fortunate to be in one of the top hospitals for fetal diagnosis with sonograms and MRIs, so we should have the best possible idea what the babies' chances are after today.
We may still have to go forward with the surgery, depending on what we find out today. The doctors say that they do not like to do the laser surgery after about 24 weeks because the babies make open their eyes, which can be hurt by the laser if they do. If it looks like the amnio procedure helped, but didn't correct enough of the problem, we may have to take that next step early. We'll have to see.
Helen and I are feeling very good about our chances, right now. We are even able to enjoy the wonderful view from our hotel room. We're on the top floor, looking out onto the Golden Gate bridge and the rest of San Francisco bay. I can see no less than three churches from where I sit (That's good feng shui. Come to think of it, this hospital has great feng shui, but I won't bother you with details).
I'd better get going. Thank you again for all your prayers and well-wishes. It's nice to know that we have such a large network of supportive people. I will do my best to make sure you get updated regularly. We love you all.
Seeing how information comes in spurts, I have a difficult time figuring out when to send updates. I don't have time to write three of these a day so, I guess I'll just shoot for daily updates.
A lot has changed in the last 24 hours. We had our third sonogram yesterday morning. Unfortunately, the babies didn't respond to the first amnio. Donor baby is still making and releasing urine, but she's not making enough fluid. Recipient baby has not made any extra fluid, but the hydrops has not gone down. Basically, the progress of the condition has been slowed down considerably, but the doctors are not confident that it has been halted or reversed.
We knew that we had a very slim chance of the amnio working, but we were still very upset by the news that it didn't. The doctors fought hard to get Helen in for an MRI in the evening, even though it was a holiday and most of the techs were not working.
The MRI was an unpleasant experience for her. She's a little bit claustrophobic and the "tube" is very small. She did fine with that, but the biggest problem was that it took over an hour to scan each baby. The fact that the babies are very rambunctious and move alot has always been a positive sign for us, but yesterday it work against us. Helen's arms and back began to cramp about halfway through each scan. (Lying on your back is hard for a pregnant lady.) They did allow her to take some breaks and her discomfort ended in a few hours. I was able to stay with her the whole time, so that helped, too, I think.
The full results from the MRI are not in yet. We expect to hear those shortly. But the initial look is positive. There do not appear to be any anatomical problems (they have all their "pieces parts") and their brains seem to be okay. The doctor did mention some slight bleeding that she was quick to play down, based on the fact that it could be a subtle indication of a problem or it could be nothing. We won't know that for certain until the experts get a chance to look at it this morning.
Once we know the babies chances, we'll be able to meet with the surgical team and discuss options and our "plan of attack." Dr. Sandberg expects that Helen will go in for surgery this evening or, at the latest, very early tomorrow morning. We can expect that she'll be in the hospital at least until the end of the week.
Again, thanks for all your prayers and offerings of hope. We really are putting them to good use. We will keep you updated as things progress.
Well, it continues to be a really long day. Things started with another sonogram (basically a daily thing, now) that indicated pretty much what we've come to expect--no improvement, but no real signs of major decline.
That sonogram was followed by word that Helen was to receive nothing by mouth, not even water, which was our first indication that the doctors had decided to go ahead with the surgery.
We got word back on Monday's MRI, basically what we'd heard from the initial look. The babies' brains have some signs of bleeding, but the doctors say that they normally see that kind of thing and that there has been no correlation found between what they see and any long-term problems. That doesn't mean there won't be any, but it does mean that they didn't find any sign that there definitely would be. Additionally, the babies' anatomies are fine.
We then followed up the sonogram with an "echo," which is basically a sonogram that specifically looks at the babies' hearts. Donor baby's heart is just fine, as the doctors expected. Similarly, the doctors expected to see some wear and tear on recipient baby's heart, and they did. Her heart is slightly enlarged and shows some signs of being thicker, having some leakage on the heart valves, etc. The doctor did say that she had seen babies recover from the condition she saw on the exam, though, so long as the surgery works.
In all, the doctors have said that, this is the latest stage of the syndrome at which they have ever performed the surgery. The doctor at the Florida Institute has apparently stopped performing the surgery after the recipient baby has developed hydrops, but the doctors here were willing to give it a try--I guess since the other prognoses seemed to be better than in the previous cases of hydrops...I don't know. I think part of it is that they felt that doing the surgery couldn't harm the babies and may give them a chance. Doing nothing would definitely have led to failure in both babies.
The doctors took Helen into the O.R. at about 6pm (Tuesday). The laser portion of the operation lasted for about two and a half hours, followed by about an hour or so of time to put everything back in place and close the abdominal incision (since her placenta is located in the front of her uterus, the doctors had to make a large incision, lift the uterus out of her belly, and insert the endoscope in the rear of the uterus).
She underwent a great deal of anesthesia: the operation was done under a strong general anesthetic in order to eliminate the possibility of Helen having contractions and to minimize the movement of the babies during the procedure. After the surgery was over, the doctors activated an epidural that they put in place prior to surgery, to minimize her pain after the general anesthetic wears off.
It is now about five hours after she was brought back from the O.R. She has the sustaining IV drip, as well as a drip for the epidural, and a drip containing Magnesium Sulfate, which is intended to prevent contractions, which she's been having in a mild way since she came back.
The surgeons all feel that the procedure went very well. Helen is doing fine, although she is very uncomfortable and very groggy. She is dozing on and off, while the nurses and I watch over her and do our best to keep her comfortable. The babies' did fine and are currently awake and moving around with steady, strong heartbeats.
The doctors were able to close the majority of the blood vessels connecting the twins. We still do not know how things will go for them, but this procedure has given them the best chance they can possibly have. The rest is out of all our hands...we have to trust in God to do His work, now, if that is His will.
Helen's father is here. He arrived around mid-day and was there to see her into surgery with me. I've been very grateful for his presence, here. Without him here, I don't think I could have handled that few minutes after leaving her in the O.R. I think that was probably the scariest, most difficult moment of my life.
Helen's mother will be flying in to San Francisco tomorrow evening. Hopefully, Helen will be feeling better by the time she gets in.
In all, things are holding steady, now. Helen is trying her best to sleep, although the MgS04 makes her feel extremely flushed, and they are continuing to give her doses of different drugs to eliminate her contractions from time to time. The epidural seems to be working, and the majority of her discomfort stems from thirst (since she still can't drink anything) and a bit of a sore shoulder, which must come from lying in one position for too long. I'm doing my best to keep her cool and damp with a wash cloth and move her shoulder around when it begins to cramp up. The nurses are very attentive and everything is going very well, considering.
Well, I suppose that's probably way too much detail, but it's late and I'm rambling. Sorry. We've got another twenty hours or so before Helen is really out of danger and a bit longer than that before we'll know about the twins. In the meantime, we'll keep praying and hoping that things will turn out as we'd like them to. Please keep up those prayers. We've still got a ways to go, I think.
Thanks for all your love and support,
I'm not sure how much of this will be helpful. I'm finding the process of writing things out very helpful. Please forgive me if my updates end up containing "too much detail."
Not much has changed since 2:30 this morning. Helen slept fitfully through the night. I slept fitfully between 4am and 4:30am. I also managed to catch about two 15-minute naps during the day so far. I'm doing okay.
Helen is very uncomfortable and still very groggy. The magnesium that keeps her from having contractions makes her very sluggish. The doctors have placed monitors on her belly to monitor the babies' heart rates and to keep track of her contractions. So far, the babies are still being pretty difficult with the nurses. They like to hide from the monitors alot. ;)
Helen is still having contractions fairly regularly, but they are getting farther and farther apart as the day goes on. She's very concerned about this and seems to be blaming herself for them...as though she had any control over this. We're doing our best to encourage her and make sure she understands that it's not something she can really do anything about. She's being a very strong patient and lets us know when things are uncomfortable or outright painful. For the most part, the epidural is doing its job nicely. She is aware of the contractions, but has no pain from them.
Our biggest hurdle thus far has been fluids. The doctors have been very strict about not allowing Helen to take any fluids (even water) orally until they have clear indications about her digestive system. Apparently, doing any type of surgery in the abdoment may cause problems for the intestines, which must "get going" again before the patient can take anything into the stomach without fear of sending it right back up. Unfortunately, Helen has been very insistant on at least having water.
She has been so dry and her "cotton-mouth" was so bad that she was desperate for something to drink. I managed to moisten her mouth through the night with a wet washcloth. Not the most tasty thing, but it's better than the glycerin swaps they offered her. They're supposed to taste like lemons, but she says they really taste like chemicals. Even with the washcloth method, Helen ended up "sending back" a few ounces of water early in the morning.
The doctors relented on sipping actual water at about 6am. Unfortunately, we had a repeat performance, but this time with more water at about 9am. With that, the nurse put her foot down and we were relegated to small ice chips at no less than half-hour intervals. By 2pm, she was able to sip water again and hasn't had any real problems with that since.
At about 1:30pm we got to see the babies on the good ultrasound machine. I'm no expert, but I do know that they were able to clearly see the donor baby's bladder. My estimate is that there is a lot more fluid in the sac around her than there was yesterday morning, too. The recipient baby looks pretty much the same, but Dr. Sandberg warned us this morning that we shouldn't expect to see the hydrops clear up in less than about two weeks. In general, I was pleased with what I saw, but we haven't been briefed by the doctors with the real expertise. I'll probably wait and send this out once we've heard the real news. If we haven't heard anything by midnight, then I'll send it out and give you the rest of the news in tomorrow's update.
Helen finally managed to drift off to sleep around fifteen minutes ago. It's been really hard on her, but she's doing great. The doctors and nurses are all very proud of her, but nowhere near as proud as I am. She's putting up with so much for these girls, there's no way that they can't know how much they're loved and wanted. I think that's part of the reason they're doing as well as they are. They seem to know how much their mommy wants them to be okay. Nevermind the fact that they're being precoscious little girls by hiding from the monitors so we know how they're doing. You can still hear them moving around and every once in a while, they will slide their hearts underneath the monitors so we can hear them beating. Then they kick the monitor and are off on their merry little ways.
Well, I'm going to stop writing for now and wait to see if we have any further news from the doctors. I'm not really hungry, but I'll probably eat something soon. Helen's father has gone to Oakland to pick up her mother at the airport. They should be back within an hour or two, depending on traffic.
Thursday, 21 Feb 2002
I haven't sent this out, yet, because I ended up sleeping last night. Helen's father stood guard for a while to allow me to get some much needed rest. I had intended to get up at 4am, but my watch alarm failed to go off (as usual...I don't know why I still trust that thing) and Mr. Fortner decided it was better to let me rest. I guess I must have slept pretty hard. I don't remember most of the visitors coming in and out all night. That's impressive to me, since I'm sleeping in the room with her. Of course, that's what running on 45 minutes of sleep will do to you. I finally got up about half an hour ago.
Helen has had a pretty good night. She was starting to get really uncomfortable and a little cranky right before I went to bed. The doctors were able to give her something to help her rest a bit, but she didn't really get settled until they gave her some medicine for her nausea. She hasn't been able to keep anything down since the surgery. She's finally resting and seems to be doing okay.
I don't have any other news on the babies, right now. Two of the surgeons on the team that worked with Helen came in last night and basically said that the had had a chance to see the sonogram results and that things didn't look all that different yesterday morning. Then again, we really didn't expect to see a whole lot of change.
Dr. Sandberg did mention that the hydrops probably won't clear up for a few weeks, if it clears up at all. He said that there was one main blood vessel that was causing the problem and that they were able to close that off. Now the biggest danger to Helen is fluid build-up in her lungs, which often happens because of the magnesium and the surgery in general. They are monitoring her blood oxygen levels and we are doing deep breathing exercises every hour, when she feels up to it.
We are scheduled for another sonogram this morning. Hopefully we'll see some improvement. It's been almost 36 hours since the surgery and it'll probably be over that by the time they actually do the check. I'm assuming that's enough time to see some change, but it will probably be a small change. The babies are still moving around and still have good heartrates. Helen's contractions have gone from 2-minute intervals to just a few an hour. We're anxious for them to get to less than three an hour for a good while, so we can take her off of the magnesium.
We'll keep monitoring and I'll let you know when we have more. Again, thank you all for your kind words of love and support. Thanks for letting me go through long technical explanations and minute details with you. Somehow, describing everything for people who aren't here seems to help me keep it all in perspective. We're doing okay. Helen is uncomfortable and worried about the babies. I'm worried about the babies and Helen, too. But we both have our faith and the best care possible. Combining that with your caring and love, I know we're going to be just fine.
Love to you all,
The doctors took Helen off of the magnesium about an hour ago. They say that most of her discomfort was caused by the side effects of that stuff. Now that she's on an oral medication that will prevent the contractions, they say she should be a great deal more comfortable.
Helen is finally sleeping. She's even started to adopt poses and behaviors that indicate she's in real sleep, instead of the drug-induced sleep she's been in. She is also starting to become a lot more coherent, when she is awake. Her heat flush is nearly gone, now that the magnesium is almost out of her system, and her contractions are very far apart. Looks like she's improving considerably. We're anxiously awaiting the next sonogram to see how the babies are doing. Their heartbeats are still strong and they're still moving, but we can't tell anything more than that from the monitors we have in the room.
Okay, now she's awake, but she's much more comfortable than she was before, she says. We chatted for a few minutes, then Dr. Lipschitz came it to check on her. She says Helen should be able to get up and move around a little today. It's a daunting proposition, but I think it'll be better for her, once she is able to stand up. They're also planning on giving her a clear liquid lunch, today, too. Things are definitely looking up. I just hope the sonogram looks good.
The day has been a pretty good one, so far. Helen is being weaned off the pain medication very slowly. They reduced the dosage on her epidural this afternoon and she's experiencing a little discomfort, but she's not in a great deal of pain unless she moves a lot. Speaking of moving, today she was able to actually sit up and stand for a few minutes. Her legs are still very weak and she didn't feel stable enough to try walking, but she did fantastically. The doctors feel that she should be able to walk on her own by tomorrow afternoon. She's not too crazy about the idea, but she understands that moving a little will mean faster healing.
Once again, the results from today's sonogram haven't come back yet. I still think there's a lot more fluid around Baby B (used to be the donor), but the tech couldn't find the membrane (which would provide the best indication of more fluid). He didn't really look very long, in my opinion, and I know the membrane is thin, so there's no reason to think the fluid is still extremely minimal. Her bladder is really full, which is a very good sign. Baby A (used to be the recipient) is doing pretty well, too, in my opinion. They're both moving around a great deal and their heartrates are no longer identical. They used to be within one or two beats per minute of one another. Now, the range is more like five or ten. Fortunately, they trade places for who will be faster, so I'm not worried that one is not doing as well as the other.
They're still dancing around in there quite a bit. When the heart monitors are on, you can hear them moving around a lot. It sounds like an amplified automatic coffee maker that's running out of water. Baby B seems to be the one who likes best to hide from the nurses. They will usually find her heartbeat after about five minutes of searching around with the monitor, but as soon as they try to strap the monitor into place, the little girl moves. It's actually kind of cute to think of her playing games in there.
Helen's parents have been great, since they arrived. Her mother and I kept watch today, while Ron went to the hotel to recover from his "all-nighter." I think Ron and I will be splitting the watch tonight, in order to ensure that we both are able to get some rest. Things should be much easier tonight. Helen's feeling a bit better and is sleeping more soundly, too. We all think she'll be feeling like a new person by morning. Of course, she'll probably have to be a few more "new people" before she's back to her old self. But we're all patient and certainly don't want to rush her.
The doctors say they're planning to release her from the hospital on Sunday. Hopefully, by then, we'll have a pretty good idea how well the babies are doing. I don't expect to get much out of the doctors until tomorrow. They never did come by and give us anything official, so I'll assume that Dr. Sandberg will talk to us when he gets back tomorrow. He was "off campus" today. I know that this medical center is part of the university, but I wish they wouldn't make it sound like the doctor is out classes for the day. Anyway, it's a small price to pay for such great care.
The nurses have been fantastic for Helen during the entire process. We have yet to meet a single one who isn't extremely friendly, caring, and proficient. I'm fairly certain that our babies won't be born here, but I kind of wish they would be. Of course, that is qualified by the fact that I don't want to see any complications that require them to be born here. I'll be happy to settle for the Community Hospital of the Monterey Peninsula (CHOMP) as long as it means there aren't any further complications.
Well, I suppose I'd better get going. Helen's sleeping soundly, again. She hasn't had a real contraction in hours, now, so I'm hoping the worst is over for her. We'll continue to keep you posted on her progress and on any news about the babies. We'll keep praying if you will!
Thanks and God bless,
This update is a bit earlier than I had intended, but I got a request for contact information at the hospital, so I thought I would send out the latest news with the requested information.
For those of you who wish to send cards, flowers, or whatever, the hospital's address is
Center for Mothers and Newborns
The doctors expect us to be going home on Sunday, so it might be better to have things delivered there, instead. If you decide to do it that way, our home address is
In case you don't have it, our home telephone number is [OMITTED].
Now, for the latest news:
Helen is definitely improving. They have decreased her epidural medication and are starting her on oral meds for the pain, of which she has had very little, really. Today, she was able to get up and take a few steps pretty much on her own. She gets a little light-headed when she moves too much and she's still a litte weak, but she's able to move without too much discomfort, now.
While I have been writing this message, one of the surgeons from the team that performed the procedure came in and reported on yesterday's sonogram (he's a day behind, but we still hadn't heard word back). He says that the sonographers are encouraged by the results from yesterday's look. Donor baby B does have more fluid around her (I must be getting good at reading thos things ;)). Recipient baby A is doing okay. The doctors say there isn't much change in her condition, really, but the measure is about 20 days before we'll see her better. The important thing is making sure that they don't get worse. He promised to take a look at today's results and let us know what he finds out. We'll see if that happens before tomorrow.
In general, we're both much more positive, now. We still have no idea if things are going to turn out the way we want, but the signs we've been getting (both in terms of Helen's recovery and in the recovery of the babies) are giving us reason to hope.
Well, it's about 12:15pm, now, and Helen's lunch should be here, soon. She's been on solid foods since breakfast and her IV fluid is being greatly reduced. She has a little bit of fluid in her lungs, but that's normal for what she's been through and we're dealing with it well. I think they'll actually remove the epidural this evening, at which point she'll be going on oral fluids and medications entirely.
Thanks again to everyone for your e-mails. I've been reading them to Helen when she's awake and she sends her love and thanks. I'll send more updates as they come in.
Yesterday was a very busy day. Helen's epidural medication was reduced at intervals throughout the day and the epidural cathiter was finally removed in the evening. She's now on oral pain medication that seems to be working very well. She's still feeling a bit of discomfort, but she isn't in a large amount of pain. I think she's just happy to have the epidural and IV connections out of the way. They left the "hep-lock" needle in her hand overnight, just in case, but that will probably come out this morning.
Her biggest accomplishments yesterday were standing and moving to a chair for a few hours in the afternoon, followed by walking to the door and back to the bed a couple of times in the evening. The whole ordeal makes her very tired, but she doesn't suffer too much pain or discomfort when she moves, so we're thankful for that. She was so happy to be up and out of the bed, that I think she was willing to put up with the minor discomfort she did experience.
Dr. Sandberg came to talk to us later in the afternoon. His report is not as glowing as we would have hoped, but it wasn't a bad one, either. Basically, he's seeing some minor improvements in Donor/Baby B, but not as much as he would like to see at this point. Recipient/Baby A is holding her own, and Dr. Sandberg is still saying that we won't be seeing much improvement in her condition for a couple of weeks, anyway. In general, he says things are going "okay." We had to chat about some difficult topics on what to do if there are certain problems with the babies in the next couple of weeks. That was tough, but he made it much easier by laying the facts out for us very frankly and letting us make an informed decision.
Our goal is obviously to keep the babies where they are (in utero, that is) for as long as possible. Dr. Sandberg says that they don't have much of a chance if they decide to show up in the next couple of weeks, but after that their chances start to improve with each passing week. The absolute dream situation (from this perspective) would be that the babies continue to improve with no complications and that the doctors finally decide to induce labor at 36 weeks. We'd settle for a naturally induced delivery at 34 weeks, too. Dr. Sandberg says there isn't much chance of that happening.
More often than not, this type of condition and treatment leads to something happening to induce delivery spontaneously by 32 weeks. If we can make it to that point, Dr. Sandberg says the girls will have about the same chance as full-term babies. Short of that possibility, they have good chances starting at 28 weeks. If her water breaks, but she doesn't actually go into heavy labor, the doctors can keep her in the hospital and maintain the pregnancy for a bit longer, if necessary. We have some options, but the point is that the babies are nowhere near ready to arrive and we want them to stay were they are (and healthy) for at least 5 more weeks. They'll probably be the longest weeks of our lives.
Fortunately, Helen's dad will be staying with us for the next couple of months to help out. I'll have to be getting back to school soon (how tough that's going to be), and he'll be around to do all the things that we won't want Helen to do while I'm trying to catch up on my studies. My professors have been very understanding, but I've lost a whole week's worth of class and reading time, so I'm going to have to work hard to catch up. With Ron here, I can focus on Helen and school without having to worry about as many of the daily chores as I otherwise would have. I'm so grateful to have such a great father-in-law. Elfie's been great, too. She won't be able to stay with us, since she has to get back to work, but her presence here has been really helpful to both of us.
Dr. Chang just came in to check on Helen. Apparently, they are going to remove the dressing from her incision. She's had a clear bandage over the incision since the operation. That's been a real help, but it's time for it to come off.... Well, that went quickly. It was a fairly quick and simple procedure to remove the bandage. Helen didn't really feel any pain from it.
After breakfast, they took Helen down for a surprise sonogram. We had not expected to hear anything until Monday, but apparently they decided to go ahead an take a look anyway. I'm glad they did. The initial results are very good. The membrane between the babies is clearly visible, and Baby B is no longer "stuck." She's got more room to move around and is practically dancing in there. Baby A still has the hydrops, but we expected that. In all, things are still looking good. Again, the good news is qualified by the fact that we have at least five weeks to get through before we can expect both babies to be okay. A lot can happen between now and then, so we'll keep praying.
Helen's finally sleeping, now. She didn't sleep much last night. She's suffering from a small amount of fluid in her lungs, which the doctors predicted would happen. With her history of asthma, she's having a little discomfort in her chest, so the doctors prescribed a round of nebulizer treatments. Unfortunately, the treatments make her jumpy and keep her awake, so she was up all night, practically. By now, with all that she's been doing, she's downright exhausted, so I'm glad she's able to sleep. Additionally, they did take out the needle from her arm, so the only tubes she's dealing with now are the cathiter for her bladder and the face mask for her oxygen support. Those will hopefully be unecessary very soon.
I don't have much other news at this point. I'll be surprised if they do another sonogram tomorrow. They're backing off on the monitors. The are no longer conducting the continuous heartrate monitoring on the babies (they were too small at this age to get a continuous reading anyway). They've also stopped checking for contractions all the time, since she hasn't had any for about a day. In all, things are looking up. We'll just hope that the babies are alright and move forward from here.
Hope you are all doing well. Let me know if you have any questions or need anything.
Take care and God bless,
Good morning, again.
We're having another rough day. Yesterday was a bit better in some respects. The news from the sonogram was very good. It was the first time we'd heard that there is improvement in both babies, although the improvement in Baby A's hydrops is slight. We didn't hear it from Dr. Sandberg (and we're always a bit skeptical of anything that doesn't come from him) but we were pleased to hear some good news.
Helen is continuing to heal and improve. She managed to take a walk out of the room and down the hall twice yesterday. She's improving so much, in terms of her incision, that is. They've removed the cathiter from her bladder and she's moving around on her own, when she has to.
On the down side, Helen is having one of those rare experiences available only to someone who has had abdominal surgery...the cramps that result from the re-awakening of the digestive tract. It's not pleasant, so I won't go into any detail, but needless to say that we had a long night of extreme discomfort. Eventually things began to clear up, but she didn't get a great deal of sleep. On top of that, this morning brought new challenges.
Helen has been having contractions since 6am. I am fairly certain that the combination of exhaustion and slight dehydration, along with the recent surgery, is working to cause these contractions. The doctors seem to be slightly concerned, but they don't have a strong sense that she's in pre-term labor, already. They will be giving her a heavy dose of nifedipine, a drug that supposedly will knock out the contractions, but the drug lowers her blood pressure, so they have to watch that as they increase the dosage. This will be one time that her slightly higher blood pressure is working for her...she can stand to have a higher dosage of the drug if she needs it.
If that drug doesn't work, they'll probably have to put her back on the magnesium, which has all of its inherent discomfort and dangers. Fortunately, the first doses of nifedipine seem to be doing their job. Helen's contractions seem to be flattening out. It was a bit scary there for awhile.
If Helen could just get some sleep, I know she would get much better, but with her stomach pains and other minor discomforts, along with the various doctor and nurse visits, she just can't seem to sleep for more than a couple of hours at a time. Her body must be totally exhausted.
In all, things are much better than before. The babies seem to be recovering, and the toughest part is just getting them to stay where they are. Helen needs to get more comfortable, so her body can heal itself, and we're hoping that will happen soon. I think she's going to try to take something to help her sleep, now that we're not quite as worried about the contractions.
Not much other news for now. I'll let you know how things progress.
Good evening, All.
Today has been just a little bit better than yesterday, which is a trend we hope to continue. However, I don't really have much to report. We're entering the phase where information isn't coming as rapidly, because the changes we're looking for won't happen very fast.
Helen has had a pretty good day. I'd venture to say the majority of the discomfort she's feeling now has more to do with simply being pregnant with twins, than with anything from the surgery. She is still a bit tired and not quite as strong as she was before, but she's definitely on the up-swing.
Today's sonogram yielded good results. It still appears that both babies are improving. Dr. Sandberg says that it's almost time for Helen to go home. The doctors need to monitor her blood pressure and a few other statistics for 24 hours to make sure things are going okay, and after that, she should be checking out of the hospital. We're anticipating that she'll be coming home on Wednesday.
After she comes home, she'll still have to come back to see Dr. Sandberg every week--probably for the rest of the pregnancy.
In the meantime, I'll probably be heading back to Monterey tomorrow morning. I've been out of school too long and I'm going to have a tough enough time catching up, as it is. As much as I'd like to stay here with Helen, I need to get back to work. Fortunately, I know she's in the best hands possible and that her father will be here to help her with anything she needs. And, hopefully, she'll only be away from home for another night.
Well, I'm going to get this sent out and sign off. More good news tomorrow, hopefully.
It looks like these updates are about to decrease in frequency, assuming our hopes and prayers have truly been answered as it seems tonight.
I have returned to Monterey in order to recommence classes tomorrow. Helen should be coming home with her father tomorrow. While the future is far from certain, we have passed through a very difficult time and survived to tell the tale. For that, I am truly grateful.
Helen talked with Dr. Sandberg this afternoon and learned that he had finally had the opportunity to look closely at the latest sonogram results. In his opinion (which has always been the most cautious of those we were given), the condition of both babies is improving. He ventured to say that there was some indication that the hydrops in Baby A is slightly reduced. At this point, we couldn't ask for more.
Helen is doing better and better. She is no longer on any medications. Having gone off of pain medication a few days ago, she was finally taken off of the contraction medication because the doctors felt that her contractions had reduced to a normal rate. Assuming her blood and other tests come back normal in the morning, she should be coming home by the end of the day.
From here on out, we will be making weekly appointments with Dr. Sandberg in San Francisco. It's a bit of a drive, but it's definitely worth the effort to receive such wonderful care. It also appears that the babies are likely to be born at UCSF Medical Center, assuming things don't move too quickly when the time comes. I have no idea how the logistics on that will work, but the doctors feel that it's in Helen's and the babies' best interest to have the hospital's facilities available.
Well, it's after 11pm and I really need to get some rest. Thanks again to all of you for your love and support. This would have been so much harder to get through without you.
Take care and God bless you all!
The only phrase that seems applicable at this point is, "when it rains, it pours."
Helen has not come home from the hospital yet, because the doctors are now concerned that she has developed pre-eclempsia. They are not 100% certain of this, but she has begun to display certain symptoms that may indicate the onset of the condition.
I don't know for certain what the plan will be, but the doctors are suggesting that Helen may have to stay in the hospital for the rest of the pregnancy. They will probably need to continue to monitor her to ensure the safest outcome for both her and the babies.
As I understand it, even if she has pre-eclempsia, Helen isn't in any immediate danger, right now. Pre-eclempsia is very treatable, but does pose some risks if it progresses too far. It will probably be tough on both of us for Helen to be in the hospital for so long, but she will be in the safest place possible.
I guess that's about it for now. Sorry I couldn't provide happier news, but it seems like one thing after another at this point. I will be sure to keep everyone posted as more information comes in.
Please keep up those prayers. God's will is difficult to understand at times, but I know that your love and caring will help us to get through all of this.
Well, here we are again on this roller coaster ride. The day has been frustrating for Helen and me, since the doctors have not been able to give us any indication on what the plan is. As of right now, she's still planning on being in the hospital for some time.
However, the latest lab results came back and her liver enzymes and urine protein levels (don't you love medical facts?...sorry, Helen) were within normal ranges. This of course means that the doctors are even less certain about what's going on with her. Her blood pressure is still high and she still has a significant amount of fluid in her tissues, but the fluid seems to be clearing up. In all, we definitely know that the doctors don't know anything for sure.
As far as the surgery goes, Helen has been recovering quite well. She's now able to move around with very little assistance. If we can figure out what's going on with the rest of her system, she should be able to come home and rest comfortably, rather than being continually poked and prodded at the hospital. Right now, that's just a hope, though.
The babies still seem to be doing fine. We haven't had a sonogram since Monday, so we don't know how much of an improvement, if any, the girls have made, but I suspect they'll take her in for a sonogram tomorrow.
As for me, I'll be going up to San Francisco tomorrow to spend some time with my wife. YAY! If all goes well, we might come home together on Saturday (that's just something we're supposing...the doctors have not mentioned that possibility, yet). If the doctors say that she can come home on Sunday, then I'll stay in San Fran long enough to bring her home, otherwise, I'll have to come home by myself on Saturday. I have two presentations to give in classes next week and I haven't even started on the reading. Schoolwork is definitely piling up. I just hope we can get some solid information from the doctors so I can at least focus on what we know, rather than worrying about the things we don't know. I still have faith that all will be well, but the bumps in the road seem to be getting bigger as we continue to move forward.
I hope everyone is doing well. We've received some nice cards and beautiful flowers. I'm going to be sending individual e-mails to thank the people who have sent flowers, but there's one problem. A basket of flowers arrived on the doorstep on Tuesday with no name on it. If you sent flowers this week, but you don't receive a "thank you" e-mail, please let me know, so I know who you are and can thank you properly.
Take care and God bless you and yours.
Lucky 13! It seems strange that just over two weeks ago life was so much simpler than it is today. Amazing what changes can take place in so short a time.
The good news is that I was able to bring Helen home last night. The doctors say that her protein and liver enzyme levels have gone back to normal. Her blood pressure in the hospital was still high, but they said that it was low enough that they didn't feel the need to worry quite as much.
We got home at almost midnight and Helen pretty much went straight to bed. She slept very well, with only a few interruptions and says that she feels much better today. We checked her blood pressure with our home monitoring kit and found that her pressure is almost back to her normal level. Hopefully, things will continue to improve.
Ron will have to take Helen back to San Francisco on Monday morning for a check-up and another sonogram. From here on out, every time she goes to the hospital, we have to be prepared for her to stay there for a while, depending on what the doctors find out.
Dr. Sandberg is fairly well pleased with the babies' progress so far. The donor baby is doing much better, and although she is very small, it looks like she'll recover from her ordeal. The recipient baby is improving, but she's not improving as fast as the doctor would like. He's a bit concerned that her amniotic fluid levels may be dropping a bit. While it is highly unlikely, there is some concern that the twin-twin condition might have actually reversed directions (with the recipient baby now acting as the donor). Dr. Sandberg says he has seen this in one other case, but that case was handled using the serial amnio reduction therapy. He is fairly certain that the surgical team closed all of the connections between the two babies, so he's a bit confused by the apparent changes.
At this point, we don't know for certain that there is anything additional to be worried about, however. We'll know more about the babies' status after the sonogram on Monday.
The way things are looking, the doctor believes that Helen will be back in the hospital within a few weeks. He thinks the pre-eclampsia will bring her back in before the pregnancy does, so we're prepared to deal with any emergencies that might arise. Either way, we're happy just to have her home where she can rest. As she starts to feel better, you're liable to begin seeing e-mails from her, as well. I'm sure she's anxious to communicate with you all.
I suppose I'd better get going. I've got a lot of studying to get done. We'll keep you posted.
The weekend has passed uneventfully, really. Helen has been resting comfortably at home; I think the change has been good for her and the girls.
Before we left the hospital on Friday, Helen had the first of two shots of steroids (betamethazone) designed to help the twins' lungs and other organs develop faster. The doctors wants to be sure that they have the best chance possible. We know they'll have to be delivered early, we just don't know how early.
The doctor told us that we'd need to go to the hospital here in Monterey to get the second shot, so we made arrangements with our local OB and headed to the hospital on Saturday night (about 24 hours after the first shot). We found out when we got there that the shot they have at the hospital here is "dexamethazone" which is a four-shot treatment. Supposedly it does the same thing, so we only had to get the last two shots. Unfortunately, the second shot has to be administered 12 hours after the first, so we went back to the hospital the next morning. Fortunately, we're all done with that.
Helen has been sleeping fairly well, with the exception of needing help to get out of bed in the middle of the night. She's fine if she's sitting up in bed, but it's still tough for her to roll over or to go from lying prone to sitting up. Still, she's able to sleep on her side, now, and that seems to be helping with the removal of the excess fluid in her legs.
Most importantly, her blood pressure has gone down considerably. When she left the hospital on Friday, her BP was still around 150/95. We calibrated our home BP monitor with the hospital's before we left, just to be sure. On Saturday morning, her pressures had dropped to 141/83. This morning, her pressure was 130/80! Hopefully, this means that the pre-eclampsia signs have all receded and she won't have to worry about that for some time.
We're at 25 weeks two days as of today. We have just under three weeks to go before the 28-week point. We're really hoping she can stay pregnant and out of the hospital and that the girls will stay healthy until at least week 30. Both babies are still underweight and still pretty sick, so they need all the time they can get to recover.
We'll know more after the sonogram today. As always, I'll be sending out updates as I can. For now, Helen and Ron are off to San Fran and I've gotta get off to classes.
Take care, All!
Hello, again, everyone.
I'm sorry it's been so long since the last update, but life has been a bit hectic for me. I've had two assignments due this week in classes and, while I have received deadline extensions from all of my professors, these were group projects that required immediate attention. The projects have been completed to the satisfaction of all members, and I am now free to send out another e-mail.
The other side of things is that the latest news isn't as happy as I'd like and I've been having a hard time figuring out how to present it.
Helen's appointment in San Francisco on Monday (04 March) had mixed results. Physically, Helen is doing much better. Her liver enzymes are down to normal, and her blood pressure is still acceptable. She's definitely a sufferer of "whitecoat hypertension," in that her blood pressures are fine as long as she's not being checked by a doctor or a nurse. Her urine protein levels are a little high, but we are monitoring those and things are looking okay.
As for the sonograms, there's good news and bad news. The good news is that the donor baby has shown marked improvement and the doctors are confident that she's going to be okay. Her fluid levels are back to normal and her organs seem to be working just fine.
Unfortunately, the recipient baby wasn't looking as good. The doctors are puzzled because it seems her amniotic fluid levels have actually dropped and they had a difficult time finding her bladder. Additionally, her hydrops (the fluid in her body) had not cleared up--in fact it had hardly improved at all. The doctors are assuming that her bladder and kidneys are not working well, which is not something they expected to see. Symptomatically, it's almost like the two babies have switched places. However, the doctors say that's not at all likely, since the blood vessels between them have been closed.
According to the doctors, the initial prognosis is not good. They are really not expecting the recipient baby to survive. The doctors did do some additional tests, including another "echo," which showed that both babies' hearts were still going strong. This fact threw another wrinkle into the doctors' theories. On one hand, the baby seems to be failing, but on the other, she seems to be okay. I'm sure you can see why I had such a difficult time figuring out when to send out this message and what exactly to say.
In short, the news from Monday's visit was: it looks very bad, but we're holding out hope for the recipient baby. The doctors are saying that, even if the recipient doesn't make it, the donor baby has a good chance at not only surviving, but also growing up to be completely healthy. The key is keeping Helen pregnant for as long as possible.
Helen had an appointment with our local doctor today and things seem to be going okay. Both babies' hearts are still beating and they continue to move around just fine. Given that, and with Helen's constant sensations of kicks and shoves (which even I can feel, now), it's hard to imagine that either baby might be sick. The doctor here, Dr. Vogelpohl, says that he can't tell the difference between the babies, anymore. What that means is difficult to say. Dr. Vogelpohl's equipment was sensitive enough to pick up the hydrops in the recipient baby before, but it wasn't good enough to be sure of what he was seeing. That's why we went to the San Fran hospital in the first place.
So, the fact that he can't tell a difference now may mean that there has been some improvement since Monday, or it may not mean anything. In the absence of anything concrete, I'm choosing to be optimistic. That's a tough choice, though.
I find that holding out hope has to be tempered with recognition of the possibility that things might not go as well as I'd like. I'd just gotten used to the idea of having two little girls, and now I have to admit that may not happen. It's very tough to balance the strong desires and hopes I have that both will be okay, with the acceptance that we have done and continue to do everything in our power and it still might not be enough.
Dr. Vogelpohl commented today that, had this happened even two years ago, there would have been almost nothing the doctors could have done. That's a sobering thought, really. That we came upon this extremely rare condition at just the time when medicine is taking its first steps at treating it is amazing to me. But it's also a reminder that these are just the first steps. The doctors can't anticipate everything and don't know exactly what to do in every circumstance. That knowledge is both a blessing and a curse: knowledge that their conclusions don't necessarily rule out hope on the one hand, and that they may not be able to help after all on the other.
At any rate, we knew three weeks ago that it was all in God's hands, so in that respect nothing has changed. We're passing 26 weeks this Saturday and both babies are still alive and kicking (literally). Helen is doing much better and is able to be at home. Her father is here helping with the daily tasks around the house. I'm able to focus somewhat on school and have the support and understanding of everyone in the faculty and staff. For all of these things and many others, I can be truly grateful, regardless of the outcome of all of this.
I continue to hope and pray, as I know you all do. I don't think there has been a time in my life when a week has seemed such a long period of time, but we take them one day at a time. We've made it through three weeks already and each day that passes means better chances for both babies. It's a perfect example of how each day should be greeted with joy and thanksgiving. I hope that I never forget that in the days, weeks, months, and years to come--no matter what the next several weeks may bring.
Well, I'd better get back to the books. Helen has an in-home prenatal massage scheduled for this afternoon, which everyone concerned says is a great thing for her. Thanks to everyone who has sent flowers and cards. I still haven't deduced the identity of the person who sent one basket of flowers, so I apologize if I haven't thanked that person individually. They've all been lovely and Helen greatly appreciates them.
I'll let you all know more about the results of this Monday's trip to San Francisco. The results from that visit should be more definitive than today's appointment.
Until next time, God bless you all.
Well, I'm not sure what to think at this point. Helen's appointment did not have any of the results we expected.
The doctors are now saying that the babies have definitely changed roles in the TTTS. The ex-donor is now the recipient, and the ex-recipient is now the donor. The ex-recipient has almost cleared up the excess fluid in her tissues, but now she's stuck because she doesn't have enough amniotic fluid in her sac. Her sister now has too much fluid, and it's starting to collect around her liver, which is the pre-stage for hydrops.
The doctors are completely dumbfounded. They say they've never seen this happen before. Of course, having only performed the surgery 25 or so times before, I guess that shouldn't surprise me.
At this point, we don't know what the next course of action will be. The "experts" weren't in yesterday. They're holding a meeting today to discuss options. My guess is that they'll go back to the beginning and start with an amnio reduction. It's too late to do another surgery, and I don't think Helen's body would tolerate it, anyway.
The positive side of all of this is that the babies are still alive, so that's something. A week ago, the doctors told us that the larger baby wasn't getting rid of her fluid and probably wouldn't survive. I just don't know what to think at this point.
Helen's only at 26 weeks, 3 days, as of today. I don't think the babies could survive at this point, although the doctors haven't said. If the amnio reduction can at least hold off the condition until the Saturday after next, then they'll be right at 28 weeks, which is when the doctors said their chances were better.
It's possible that the doctors may need to do more than one reduction. Of course, I doubt that they'll bother if the first reduction doesn't have an effect.
Either way, we should know more by 5pm this evening. The doctors promised they'd call by then. I don't know how worried they are at this point, given the fact that they let Helen come home. It may just be that they don't think she's in any danger, yet, and that they don't think the babies' conditions will deteriorate over two days or so. I really don't know.
Helen is doing okay, and that's important, too. Her protein levels were slightly elevated, but they seem to be stable. Her liver enzymes are normal and she isn't showing any of the other symptoms of pre-eclampsia. Her blood pressure at the hospital was high, but the doctors have come to expect that.
At this point, the only thing that seems to have a strong positive effect is they praying. The doctors are still trying to figure out this syndrome, I guess, so it's up to God to sort things out. We're hoping that He will, but it's not really up to us.
As always, I'll keep you posted on new information. Take care and God bless!
Welcome back to the rollercoaster!
I'd like to start off with a request for our friends and family. Helen and I got to talking last night and we came to the realization that, while you have all been very supportive, not all of you who have been receiving this e-mail may want it. If for any reason, you feel that you do not want to receive the "Crenshaw Twins Update" in your inbox, anymore, please do not hesitate to let us know. We are happy to be able to share our news with anyone who wants it, but we certainly don't want to clutter your inboxes with information that you don't want or that you find troubling. We realize that our troubles are not the only troubles in the world and want to be sensitive to your feelings, as well.
Now, for the daily news:
Helen underwent a second amnio reduction procedure last night. The ex-recipient-now-donor baby (getting confused, yet?) was showing the excess fluid and attendant fluid build-up around her liver, which is an early indication of hydrops. The doctors are disinclined to perform surgery again. As Dr. Sandberg puts it, "we are in uncharted territory."
According to Dr. Sandberg, the likelihood is that, during the first surgery, the team failed to find a blood vessel that went in the opposite direction (from the one that caused the first problem). The doctors feel that further laser surgery is not an option for a few reasons, all due to the fact that Helen is only 26 weeks and 4 days pregnant: 1-the babies are old enough for their to be a risk of them opening their eyes, which can be damaged by the laser; 2-at this point the blood vessels may be wider than the beam of the laser, which means that they may not be able to fully close them; and 3-the doctors didn't find this blood vessel last time, so there's no guarantee they could find it this time. In all, the doctors don't think the small possibility of success is really worth the risk.
Today, we are expecting to have another sonogram, which probably won't give us any conclusive results. The normal procedure is to wait 48 hours after the amnio reduction to determine if there has been any real change (good or bad).
As of right now, what we do know is this: Both babies are still very sick. The ex-recipient is the sickest of the two babies, because she still hasn't fully recovered from the hydrops and now has to deal with the problems of being the donor and not having enough amniotic fluid. The ex-donor is doing a little better, but is beginning to show signs of hydrops. It is still possible for both babies to recover IF (big if) the amnio reduction can balance things out and keep the syndrome from progressing. If the amnio reduction doesn't correct the problem, but does keep the fluid from building up in the ex-donor's body, it may be that we have to do more than one to carry us into a time period where we can deliver both safely.
If the amnio reductions don't work, I don't know what our options are. We'll have some difficult decisions to make, I think.
Well, just as I was starting that last paragraph, they came in to take Helen down for the ultrasound. The results are not conclusive, but I do think they're encouraging. According to the measurements, both babies are now about 24 weeks in gestational age. Baby A (ex-recipient) is now at 24 weeks 3 days; her sister is at 24 weeks 6 days. This means that not only are they both of about equal stages of development, they are also only about two weeks behind their actual gestational age. The smaller baby has now managed to catch up and pass her sister. Catching up is good, but I'm not to sure about whether she should be passing her sister in development. It makes sense that this would happen, since she is now the recipient and getting more blood than her sister. The main question is whether the gap will widen or not.
Despite that, the babies are developing at the proper rate. Two weeks ago, both babies were at about 24 weeks but one was the size of a 22 week-old fetus and the other was the size of a 20-week old fetus. Now, here we are at over 26 weeks and they are both the size of 24-week old fetuses (feti? no...guess not).
We still haven't heard from the doctors, but the sonographer has given us some reasons to hope. It looks to her like there has been a slight decrease in the hydrops in the ex-donor (although she also says that there may be a slight increase in the ex-recipient--which doesn't make much sense to me). She also said that the fluid level in the ex-recipient is almost normal, while there hasn't been a large recumulation of fluid in the ex-donor. All of these are good signs, which combined with the fact that the girls are continuing to grow at a decent rate, means that we once again have reason to hope. Of course, on this ride, we don't know how long the current trend will last.
Well, I guess I'm going to sign off for now. I'll wait until we hear from the doctors before I send this out. I want to add their opinions before I make anything final for today. By then, we should know when we'll be able to go home.
We just got back from an unexpected echocardiogram with our friends down in sonography. The results are about what we expected. Both babies' heart walls are a little thickened and there is a little bit of leakage between the upper and lower sections of their hearts, due to the fact that they have both been recipients. Both babies have a little bit of fluid in their tissues (basically another statement of what we knew before). The doctors say the only thing that causes them a little more concern than normal is that the ex-recipient-now-donor is showing a slight shrinkage in the blood vessel going from her heart to her lungs. The blood vessel is still large enough, however, so the doctor was not entirely worried. He also said that these are all symptoms that the babies could recover from if the pregnancy can go long enough. That, of course, is always the trick with this.
Right now, we're waiting for Dr. Sandberg to come in and tell us the combined results of today's tests and what they all mean for us. We expect to be here one more night, but we have no idea about that. It may be that they tell us at 7pm that we can go home...like they did last time. Who knows? If we don't hear any word soon, I'll go ahead and send this out, so there will be at least some information flow.
Well, I'm about to head to bed (it's actually a cot, but it'll suffice). The end of the day results came in at around 6pm, but we had phonecalls to make and dinner to eat, followed by reruns of some of our favorite shows. The end result is that Helen is trying to drift off to sleep as I finish up this letter.
We never did get to see Dr. Sandberg, but Dr. Parer, the attending physician, came in to tell us that both babies seem to have improved today. This is the general feeling we had gotten from our various tests, but it was nice to have it confirmed. The doctor said that we can expect to go in for another MRI so they can check the babies' brains and make sure they are okay. I expect that we'll do that tomorrow. It's not the most fun thing for Helen, since she has to lie on her back and be very still for a long period of time, but it's not as bad as the amnio reduction.
In all, it's been a positive day. I think we needed one of those. Helen's holding up, but she's starting to get tired of being the guinea pig. It has seemed that every step forward has taken us into a wall until now. Today's results give us some inclination that we're actually getting somewhere. Both babies must be very strong to have lasted this long, considering all they've been through. I just hope they're tough enough to see it through. Then again, I hope we all are.
Well, I guess that's about it. I'll send out more information as it comes in. Thanks again to everyone who's sent us messages of love and support. They really do help.
Hi, again, everyone.
Sorry I haven't written sooner. To be honest, there wasn't much information to report. Yesterday was a frustrating combination of late and cancelled appointments. Our sonogram was set for the morning, but didn't happen until 2pm. Our MRI was scheduled for 3pm, moved to 4pm, and then cancelled altogether. The MRI was finally accomplished this morning. We still haven't gotten word back on the results.
The latest news is pretty much the same. The sonogram showed that the membrane is still intact, which is a good thing. The babies are not showing much improvement, but they're not getting any worse, either. There has been no recumulation of fluid in the new recipient, which is good, but there hasn't been a real improvement in the hydrops in either baby, nor has there been a large recumulation of fluid around the new donor.
Helen's latest protein levels are slightly elevated, indicating that she definitely is pre-eclamptic. As a result, the doctors have decided that Helen will stay in the hospital for the remainder of her pregnancy. As of tomorrow, we will be 27 weeks along. The doctors say the magical week is 28, but we really want to get beyond that, if we can. Our babies are still very sick, and they need to stay in the womb for as long as possible. A normal, healthy baby may be able to survive at 28 weeks or even earlier, but our girls have serious problems that greatly reduce their chances.
In general, the doctors are still not confident that both babies will come out of this. They are trying to prepare us for the possibility that the ex-recipient might pass at any time--before or after they are born. That's a tough thing to wrap my mind around. Helen and I both have a difficult time thinking of our babies as being sick, when they are so lively--they move and kick so much and with such vigor, that it's hard to imagine that they are having such a hard time. The doctors say that the fact that they are so lively is a good sign, but they emphasize that the babies still might not make it.
At the same time, I'm feeling strangely optimistic. I know that the doctors are being realistic, but they have been predicting the worst since the beginning of this whole thing. They told us two weeks ago that the chances weren't good, but the fact is that the chances improve with each passing day. At least, that's the way I see things. As long as the babies don't get any worse, then each day they grow increases their ability to overcome the physical problems they face.
In general, Helen is holding up really well. She's taking the whole thing with a realistic, yet positive attitude. She puts up with all the tests and restrictions. She talks to the babies a lot, letting them know that she wants them to keep kicking or do anything to let her know they're okay. She's such a trooper. I'm really proud of her.
As for me, I'm doing okay. School is a pressure, but it's not my greatest concern at the moment. Still, I guess I'll have to catch up sometime. My plan for now is to stay with Helen for as long as I can. I'll be going back to Monterey tomorrow, where I'll get my books and a few other supplies together before coming back on Sunday. I'll try to get some schoolwork done. I'll see how that plan works. It won't be easy to focus anywhere, so I'm hoping that it will be easier to focus here, where I won't be constantly worried about Helen's condition and that of the babies.
Well, I'm starting to get tired, now, so I'm going to sign off. I hope everyone is doing well. Please take care of yourselves and each other. I'll send more word as it becomes available.
Okay. I don't want to get anyone's hopes up, but for those of you who get your e-mail at work, I wanted to make sure that you all get the news as soon as possible.
We don't have the official results, but the preliminaries on our latest ultrasound are actually pretty good. The sonographer was unable to find any hydrops in either of the two babies. This is perhaps the best news we've heard in weeks. If it's true, then it means that the latest amnio reduction had a good result and the babies are actually getting better.
We still have the problem of Helen's pre-eclampsia and just making sure she stays pregnant in general. We still have a very long road ahead of us, but we've finally had a small ray of sunshine on our path. Hopefully, things will continue to get brighter as time goes on.
We hope everyone is having a good day. I'll send more information when I have it.
Well, two updates in one day may seem a bit excessive, but we've had an eventful day. I thought I'd let you all know the latest at the soonest. ;)
As I said earlier, the results from the sonogram were very good. According to the doctors, the hydrops in both babies is completely gone. We have no guarantee that the twin-twin syndrome won't return, but the important thing is that the babies are now able to start healing, finally.
Of course, as has been the case with all of this drama, the good news was immediately followed by a moment of fear and concern. At around 4pm today, Helen started having contractions. She was put on the contraction monitor and was found to be contracting about every four minutes, even though she wasn't really feeling the contractions. Once she started to realize what was happening, she did begin to feel them.
The doctors gave her two courses of turbutilene, a drug designed to stop the contractions, and suggested that she should start drinking lots of water. It turns out that she was probably a little bit dehydrated. The combination of the medicine and an increased fluid intake seems to have eliminated the contractions, for now.
And last, but not least, the other good news is that all of Helen's lab results came back completely normal. Her protein levels are back down, after having been elevated for a few days; her liver enzymes are normal; and her blood platelettes are normal. In all, her blood pressure is the only symptoms of pre-eclampsia she is showing as of today. As always, this could change considerably at any time. We are optimistic, however. We're just happy to finally have some good news.
So that's pretty much it, for today. The babies are doing better, and our next task is to make sure Helen takes it easy and that the babies stay inside for as long as possible. At this point, every day they are inside improves their chances for being happy, healthy little girls. We're hoping for at least 30 weeks...;)
Well, take care, everyone. I'm off to bed. Helen's about ready to drift off to sleep, and I'm tired. I took advantage of the fitness center across the street to finally get in a decent hour of exercise.
Good night and God bless!
Although I've basically been sticking to the "no news is good news" principle, lately, I thought I'd share some of the latest good news anyway.
Today is the first day there's really been anything new to tell. We had another sonogram today and the results were once again positive. The sonographer commented that she thought there was a little more fluid around the "stuck" baby. Everything else is pretty much the same. So what that means is that there's a net improvement.
It's been getting more and more difficult to differentiate between the babies, lately. For simplicity's sake, we've decided to go back to old nicknames that we'd been using before the TTTS was diagnosed...the stuck baby (on Helen's left) is "Bean" and the other baby (on her right) is "Sprout".
The doctors have been concerned about Bean lately, because she hasn't been recumulating fluid as fast as they'd like. They are afraid that there has been some damage to her kidneys, since the lack of fluid may mean that she's not producing as much fluid as she should. However, there is plenty of evidence (i.e. her bladder is always visible) that there isn't a problem with her kidneys, so the doctors are kind of stumped. The added fluid is good, but it's still not as much as they'd expect to see. It may be that some fluid is moving from one baby's sack to the other, but the doctors just don't know.
In general, though, the girls seem to be doing okay. Dr. Sandberg admitted today that he hadn't expected Helen to still be pregnant by this point. We've only got two more days before we reach 28 weeks! It seems more like 5 years than 5 weeks, but all four of us have made it this far. We're hoping for a few more weeks, but we're very grateful for the time we've had. The babies have come so far and their chances are so much better, now.
Overall, we're feeling like we've made it through the really scary part of all of this. We know that the babies will have to spend some time in the Intensive Care Nursery after they're born, but the girls are getting far enough along that they won't need quite as much help to survive. We got a tour of the nursery on Tuesday after Helen's massage. Both events helped Helen considerably. The massage had obvious benefits. The tour allowed us to dispell some of our fears about how the babies will do. I think both of us were very nervous about the idea of seeing the babies in the incubators with all the tubes connected to them and everything.
We saw several babies who were born earlier than our girls will be and they seemed to be doing quite well. It wasn't as bad as some of the pictures we'd seen on TV, so it definitely helped us to get an idea of how things will go.
Well, I'm starting to lose my train of thought here, so I'd better get going. I just wanted everyone to know that we're doing much better and that the girls seem to be getting better every day.
I hope you're all doing well, too. Keep up those prayers...but not just for us. There are lots of other people who can use them, too.
We love you all.
Yesterday was another long day after a slight dip in the road. Another sonogram yesterday confirmed that there was a slight build-up of fluid in Sprout's abdomen. I thought I had seen it on Thursday, but the sonographer said she didn't see it, so I convinced myself it wasn't there. Fortunately, the doctors saw it after the fact.
The doctors had told us that the excess fluid might build up again, so this wasn't entirely unexpected. The last amnio reduction was not likely to completely correct the imbalance of blood flow, but the hope was that it would slow it down for the rest of the pregnancy. Unfortunately, that didn't happen. It did, however, get us through almost two more weeks before the TTTS showed up, again.
Helen underwent another amnio reduction last night, and the hope is that it will buy us another week or more. The babies are definitely going to arrive early, but it is dangerous for a baby to be delivered with hydrops or any excess fluid in her body. We're hoping that the latest reduction will allow her to eliminate the small amount of fluid that has built up, so that she can have the best possible chances when they do arrive.
We're handling things okay. We knew this was a possibility and just dealt with it when it happened. The doctors changed Helen's pain medications and gave her something to calm her down, so the procedure was not as hard on her as the previous two. It still hurt and certainly wasn't easy, but it could have been worse.
The babies seem to be doing fine, today, so we're grateful to have made it through another difficult moment. We'll be having another sonogram today just to check in on the girls. We don't expect to see much change, but it'll be nice to know how they're doing.
Well, I guess that's about it for today. As always, I'll send more information when I get it. We hope you are doing well.
Once, again, I'm sorry it's been a whole three days since the last update. We've just been through another one of those parts in the rollercoaster that make most people lose their lunches.
As I mentioned in the last message, we had a third amnio reduction on Friday. The doctors didn't report the results of Saturday's sonogram until Sunday morning. They said that the results were encouraging, in that there was no change in the baby's ascites (the fluid in her tummy) but that there was an improvement in the profusion of blood to her brain. This was something new to us, since we didn't know that there had been a problem before. The doctors were encouraged, however, so we took the good news at face value.
Shortly after that we went down for another sonogram, which is when things got scary for awhile. I'll preface this by saying that Helen and I have been looking at these sonograms for five weeks. We've learned what to look for in certain instances and we've gotten pretty good at seeing the trends. As a result, we were devastated when we both saw the sonogram and were convinced that the ascites had gotten worse. The sonographer wasn't overly encouraging, because she hadn't had a chance to look at the previous day's pictures.
When we got back to the room, I started making phone calls telling our close relatives the bad news. I had just finished telling Helen's mother that things weren't going well when the doctor came in to talk to us. His take on things was quite different.
The doctor said that the ascites in Sprout's belly was unchanged, it had not gotten any worse. Not only that, but there was more fluid in Bean's sack. While we had hoped to see a decrease in the ascites, the net result was an improvement in both babies. Of course, I had to make a few phonecalls to take back our dire predictions.
Yesterday's sonogram results were reported to us last night. Sprout's ascites is holding steady. While we'd like it to decrease, it's too early to see that, really. However, the doctor made a distinction between ascites and hydrops. Apparently, fluid in the abdomen is not as dangerous as full-blown hydrops, which includes a profusion of fluid into the actual skin tissues. Neither baby has hydrops at this point. The fact that the ascites isn't getting any worse may be an indication that Sprout won't develop it. The doctor says that a baby can be born with fluid in the abdomen without any more danger than they face already. It's actual hydrops that we need to worry about.
And for another positive, the doctor also said that the fluid in both babies' sacks is within the normal range. Bean still doesn't have as much fluid as Sprout and technically she's still considered stuck, but she isn't quite as stuck as she was before.
So, in general, the babies are still improving, despite the fact that we still have little bumps in the road along the way. They are getting bigger, now, which makes it easier to monitor their heartrates. They are definitely giving their mommy strong kicks and shoves, too. Last night we had our first "alien-esque" experience, when Sprout decided she needed to stretch out for a bit. Helen's belly moved in several directions at once! It was so amazing to see.
Helen continues to do well, too. Her blood pressures are pretty much holding steady and all of her lab results are within normal ranges. As of this morning, they've started taking blood samples every day so they can catch any changes early. She's officially been pre-eclamptic for about three or four weeks, so I think the doctors are expecting her condition to change any time now. We're hoping things will continue to be stable for a while longer, but that's not really something we can control, so we're happy the doctors are taking a close look at her condition.
We'll be going down for another sonogram today. At this point, I'm not sure what differences they expect to see. Very little changes within a 24-hour span, but we always hope to see something good. I'm hoping that the ascites will be gone by the end of the week.
Of course, I'll have to go back to Monterey by Friday. The next quarter at school starts on Monday and I'll have to make arrangements for my new classes. I have been verbally granted a three-month extension at Monterey, so I'll be able to take things slower next quarter in order to take care of Helen and catch up on the work left from the classes I've been missing out on.
Well, I suppose that's it for now. Things are still going as well as can be expected, I guess. I spent six hours doing two loads of laundry in the hospital-provided machines last night. That was fun. I've never seen dryers that ran for two hours and still left the clothes damp. We'll hope for more good news as the days go on. We've made it to 28 weeks, 3 days as of today.
I hope you are all doing well. I met a grandmother last night while I was doing laundry. Her granddaughter is in the Children's Hospital here with a very rare condition (I think she said something like "meningial sclorosis") that is making her very sick. They've been in the hospital since January and the doctors seem to be stuck in a mode of reacting to the next infection. They are afraid she might have suffered a stroke which causes tremors in one arm, and they think that she will eventually need a kidney transplant. All of this is happening to this girl who celebrated her first birthday in the hospital. Hearing things like that make me realize how lucky we are. Despite the problems that are happening to us, our babies are showing no signs of any disorders or defects. They are sick, but it's not because of anything that's wrong with them. The problem is in the placenta. I pray for that little girl and her family. They have been through so much more than us. It gives me hope that we'll be able to weather this storm, too.
Take care of yourselves. I'll send more information when we have it.
There's been a major change in the flow of things, here. Today's sonogram showed that Bean has a tiny amount of fluid in the tissues of her scalp. They doctors are concerned that this may be a very mild, very early case of hydrops development. The fetal surgery team has decided that at this point, the babies are better off outside, where the TTTS is no longer an issue.
Thus, the plan is to deliver the babies by caesarian section tomorrow (27 March) at 10:00am. The doctors say that both babies have a very good chance for survival at this stage, even with the mild hydrops they may have developed. There are always problems that can arise with very premature babies, especially those suffering from TTTS, but the doctors do seem optimistic.
The evening seems to be crawling by, now. The babies' heart rates will be monitored throughout the night, because the doctors are a little concerned about some things they saw during the monitoring for this shift. So far we've had a couple of scares with racing hearts followed by really slow hearts. The babies seem to be doing fine, now, but we'll be watching them closely to make sure they don't get too anxious and show up even earlier than they are supposed to.
Despite all of our problems, Helen and I are thinking positively. We've seen the NICU and have a good feeling about the people working here. We've made it through these five weeks and attained the "magical date" of 28 weeks. We even got to 28 weeks, 4 days. We're happy that God has allowed the babies to make it to this point. I know that things are still entirely within His hands, but I just have a feeling that He will continue to protect our girls and help them get well.
I guess that's it for tonight. I'll be working up a site with a few pictures of our babies so that our friends and family will be able to see them as soon as possible. I will warn everyone that they will have to have tubes and other contractions connected to them. If the pictures might bother you, you'll be able to avoid them. I'm including some pictures of Helen and the hospital room, too, so there will be something for everyone. Having seen the babies in the NICU here, I know things aren't as bad as one might imagine.
Well, I'm going to quit babbling, now. I'll send out an update as soon as the babies are born (or as close to it as possible). Please keep up those prayers.
Well, the big day has finally arrived. Things didn't go quite the way we'd expected, though. We were awakened at 4am when the doctors came in to tell us that Sprout was experiencing some decelerations in her heart rate and that they were going to go ahead and deliver them because they were worried about her condition.
As such, Tatiana Leilani Crenshaw was born at 5:15am, followed by Natasha Kelani Crenshaw at 5:16am. Tatiana weight just about 1 pound, 14 ounces and her sister weighed about the same, maybe slightly more, but they were within half an ounce. They are both about 13 inches long. Both babies cried when they entered the world, which is a very good sign. Currently, Mommy is doing quite well, as she recovers from the surgery which went off without a hitch, so to speak.
The doctors say that the babies are "okay," in that they are stable and the doctors haven't seen any real complications that they didn't expect. Both babies have a little bit of lung disease, showing a little bit of fluid in the lungs due to their current state of development. They are needing help to breathe for now, but have received one and a half courses of steroids to help their lungs develop faster.
In general, the babies look okay. I've taken a couple of pictures, even though they have a few tubes connected to them. I'll upload those later. You can see some pictures of Helen and the hotel room, as well as some basic info on TTTS, plus copies of previous update messages. Check back later and there will be some baby pictures up there...hopefully tonight.
Well, I suppose I should get going. Helen's resting, now. I'm running on very little sleep and need to take a nap, myself. Thanks so much for everyone's prayers and support. We couldn't have come this far without you. We'll send out more baby info when we have it.
Wow. I can't believe I've written over 25 of these updates already. It's been such a wild ride and I know that "it ain't over, yet."
I was planning on waiting until the doctors came to talk to us today, but it looks like that won't happen until mid- to late-afternoon, so I thought I'd share the latest news with everyone.
Tatiana and Natasha are still doing pretty well. They are both very active little babies who like to kick and squirm whenever they can. However, they are getting to the point where so much room combines with all the activity in the nursery to agitate them quite a bit. Usually, they seem to do better when they are balled up and lying on their bellies.
Tatiana is still very scrawny and will probably be that way for some time. As of this morning, she still hadn't been placed into an isolette (an incubator, basically) because the nurses apparently want to monitor her for any additional trouble. However, she is oxygenating fine and the nurses continually adjust her respirator as her needs decrease or increase over time. As with both babies, the help she needs will change over time (getting better and worse and then better again), but in general, she's still doing better than she was right after she was born.
Natasha has been placed in an isolette already and seems to enjoy the relative quiet it provides. She still really likes to suck on the little pacifier the nurses gave her. Additionally, she tends to be extremely fiesty from time to time. The nurses had to move the little IV from her foot to her hand after she literally kicked it out yesterday morning. She's already figuring out how to tell people what she wants. ;)
Both babies are dealing with the things common to most premies. They both still have the little heart murmur that may indicate that the ductus connecting their heart and lungs has not yet closed. They are receiving medication that will hopefully cause the ductus to close, but the first two doses haven't had much of an effect. The doctor said that they may need two three-dose courses of medication before they see an effect. If they don't get any response by then, the girls might need a little surgical procedure to close it for them. This is something common and the doctors know how to deal with it.
The other problem is that the girls' skin is still very sensitive. They've had problems of getting little burns from the CO2 monitors attached to them, but the nurses realized the situation and now move the monitors to different areas every once in awhile.
For the most part, both girls are doing quite well. We are passing out of the "honeymoon" phase where they will begin to display more discomfort and exhibit more difficulties, but the nurses are very positive and have done a good job of warning us that there are always little roadbumps when it comes to premature babies.
Well, I suppose that's about it. Helen is doing much better. She's experiencing more discomfort as the pain medication they gave her after surgery has finally worn off, but she's up and about, able to spend some time on her feet. She's doing the things she needs to do as a new mommy and getting plenty of rest.
We have moved to the post-partum section of the hospital and are now in Room 1514. Assuming she continues to get better, they will discharge Helen on Sunday or Monday. After that, we'll hopefully go to a hospital-provided guesthouse or to the Ronald McDonald House, if they have a room available. The nurses say that we should expect Tatiana and Natasha to be in the hospital at least until their original due date, so we don't expect to have them home until after June 15th. Helen will obviously be in San Francisco 99.999999% of that time, I will be spending 3 or 4 days a week in Montery, depending on my school work load.
We're looking into trying out a cassette recording of my voice to play for the babies when I can't be with them. Helen's cousin worked in a NICU for many years and suggested that among a wealth of other great advice (Thanks, Cindy!). I thought it was a neat idea. The nurses say that it doesn't work with every baby, but we can give it a try. We certainly don't want to do something that will bother them.
I guess I'd better scram. Thanks so much for all the words of encouragement and congratulations. We're very pleased with our little girls, and I'm extremely proud of Helen. Ron, her father, has been a fantastic help, too.
Take care and God bless.
Good morning, All.
Well, the girls have made it to 29 weeks of "post-conceptual" age. That's a funny little term I learned from one of the books on premies that the hospital loaned to us. It helps keep things in perspective on their development. As many of you will know, a full term baby would be about 40 weeks post-conceptual age at birth.
The doctors came to speak with us yesterday afternoon and the news was generally good. The girls underwent ultrasounds on their heads and each one got a cardiology review. The head ultrasounds came back with great results. There are a few issues that the doctors are looking at with both girls' hearts, but the good news is that the endomethazone (sp?) treatment has worked. The ductus of each girl has closed, so that part of the worry is over. They each still have a little bit of a heart murmur, but the doctors are confident that they can deal with any problems that may be causing them--and that's assuming they even need to deal with them. Sometimes things like that fix themselves. Additionally, the doctors are watching the girls' lungs with are displaying problems common to very-very premature babies.
The girls had a really good night last night, too. They are still losing weight, as all babies and especially premies, do when they are first born. Tatiana now weighs 1 lb 6 3/4 ounces and Natasha weighs 1 lb 10 ounces. This weight loss is very normal, and I really couldn't see any difference in their sizes. To me, they look better every day...but then, I think I can see little halos over their heads, too. I'm the daddy, after all.
Both Tatiana's and Natasha's hemolitics are a getting low, so the nurses say that they will probably need to have blood transfusions within the next 24 hours. This is also a normal situation for premies, since they can't make blood as fast as full-term babies. Unfortunately, the requirement for blood samples draws usually is greater than they can keep up with. Granpa Fortner has already donated some blood for them, so we're ready for that eventuality.
Once Tatiana's hemolitics are back up, the nurse says they should be able to start feeding her mom's milk through a little tube, rather than providing nutrition through an IV. That's a pretty big milestone and we're very proud of her. ;) The nurses say that there may be problems with the first feeding and that she might have to go back on the IV, but it's still a step in the right direction.
Natasha's still on medication to regulate her blood pressure, so it will be few more days before she is able to get mile, but she's improving, too. Natasha was the recipient when she was born, so she still has some extra fluid to get rid of. As a result, they nurses are balancing her fluid levels carefully and will need to work with her a bit before she's ready for such a big step as feeding.
In general, they're both doing really well. That makes me feel better about getting back to Monterey to start a new quarter. I'll probably have to spend Monday thru Thursday in Monterey and will spend Friday, Saturday, and Sunday in San Francisco.
We were incredibly fortunate to have the help of the Center's social worker in getting a room at the Ronald McDonald House of San Francisco (I think it's actually "of the Golden Gate"). Grandpa stayed there last night. I'm so impressed with the facilities there. I really didn't know much about the Ronald McDonald Foundation until a few weeks ago. The work they do is fantastic...if you're looking for a charity to donate to, you might want to consider it.
Helen will be discharged tomorrow and will go directly to "Ronnie's." Once she's settled in, I'm sure she'll want to hear from you, but she'll need some time to get comfortable, so I'll let everyone know when she's ready. I appreciate everyone's patience and can assure you all that I'll be keeping you up to date as much as possible. I should also be adding a few more pictures to the website once I get home and have access to a higher-speed internet access.
Well, I'm going to get going and see our babies before we head out of town. I hope everyone has a wonderful Easter full of all God's promises for new life. I know that we've certainly seen the fulfillment of that promise in our two little beauties.
Take care and God bless.
I hope everyone has had a wonderful Easter!
I know I should be in bed. I have to actually go back to work tomorrow, but I thought I would send out one more update.
The girls (all three of them) are still doing well. Tatiana and Natasha have had their first transfusions and seem to be doing well. Tatiana had a little bit of a fever, so the doctors ran several tests to make sure everything was okay. They didn't find anything and her temperature came back down after a while, so there probably wasn't much to worry about. The nurses say that the babies' systems just aren't very good at regulating body temperature, yet.
There really isn't much new to report on the babies tonight. I'd be more than happy if the rest of these updates were boring little messages like, "They're still growing and doing fine" or "Well, we had another uneventful day." I'm pretty sure that things won't be quite that easy, but we'll take them as they come. I still have a good feeling that our girls are going to be just fine.
Helen is doing fine. She's settling into the Ronald McDonald House and continuing to heal from all she's been through. I have conveyed all of your well-wishes to her and will continue to do so. I'm sure that she'll feel up to getting in touch with people before long. She hasn't had much time to herself within the last several weeks, however, so I'm hoping she can relax a bit, for now.
As for me, it's time to get back to the books. I tried to get some studying done while I was with Helen at the hospital, but I just couldn't seem to get my mind on academics. Now that the babies are in a more stable environment, I really need to buckle down and get myself back on track. After all, those girls are going to need money for their education...not to mention for all the incidentals that a daddy is supposed to provide for his little girls. ;)
I did manage to get more pictures put up on the website today. You'll find two new pages containing photos from the first three days, as well as pictures of the girls at 29 Weeks Post-Conceptual age. My plan is to get pictures of them weekly to show their project. That was Grandpa Fortner's idea and I think it's a darn good one.
Well, I guess that's about it for the night. As always, I'll send out more information as I get it.
Again, I hope your Easter was peaceful and joyous. Take care of yourselves and each other.
Well, I'd say that today was a pretty good day. I managed to get myself back into the school thing without any real problems. I've got a busy quarter ahead of me, but I don't think I'm facing anything I can't handle. I've got three months to finish up the work from my previous classes, and I only have a couple of current classes to worry about, so things are looking pretty good on that end.
As for Helen and the girls, they seem to be doing pretty well, too. Helen got to help take care of the babies some, today. She helped the nurses change diapers, take temperatures, and also got to help give the girls their first feeding! I'm a little jealous, but I'm more happy for her than I am jealous. She sounded much happier when I talked to her tonight. I think that actually doing "mommy things" for the babies has really lifted her spirits.
In general, the littlest ones are doing well, too. Natasha had another blood transfusion, so I think that makes three for each of them. That's supposed to be normal for them, though, so we're not too worried. The nurses are still weighing them every day and it looks like Natasha might have stopped losing weight. I don't know what Tatiana's weight was because they had just fed her when I called. The nurse wanted to let her food settle before she disturbed her.
There really isn't much more to report today. The nurse has officially reported that they're both really cute, so that's settled. Beyond that, it's another day that we can be thankful for.
I hope you all had a day you could be thankful for, too. If not, I hope that tomorrow is better than today, but not as good as the day after tomorrow.
Good afternoon, Everyone!
It's been several days since I sent anything out. Sorry for the delay, but I've been in San Francisco with my girls all weekend. This is the first opportunity I've had to write another update for everyone. I've got some work to get done, so I'll keep this one short, today.
In general, both girls are still doing fine. Tatiana has gained a good deal of weight and now weighs 930 grams, which is almost three ounces more than her birth weight. Natasha is trying to catch up to her sister, but she still only weighs about 850 grams or so. She's almost back up to her original birth weight.
Both little angels are tolerating feedings very well. They're up to 11 milliliters of milk every three hours. I think the doctors plan to take them off of the intravenous supplemental nutrition today, since they're doing so well with their feedings. They can't actually coordinate swallowing yet, so they are getting all their feedings by mouth through a tube that goes directly into their stomachs. They usually don't even wake up for feedings. After all they've been through, I think they're entitled to be a little lazy for awhile.
Neither Tatiana nor Natasha has opened her eyes, yet. This is more of a curiosity for the doctors than a matter for concern. They think the girls will probably open their eyes sometime within the next couple of weeks and that everything will be just fine with their eyesight. There's no reason to think there is anything wrong with their eyes. We jokingly say that the girls are still in denial about having already been born. They'll open their eyes when they are good and ready.
In general, they're doing really well. The doctors say that they are probably the healthiest babies on our wing of the ICN. Of course, that doesn't mean they don't give us little scares every now and again. They like to wiggle around sometimes and they are very particular when it comes to being comfortable. They can easily get irritated with too much stimulation, handling, prodding, and poking. They hate having wet or messy diapers, too. In general, they tend to show their discomfort through lower blood oxygen levels (called "desat-ing"). If you leave them alone, they will usually normalize.
Well, I guess that's about it. I'm hoping I can continue to provide boring reports about how the girls are just growing and that we've had nothing exciting happen in the last week. Usually, excitement is a bad thing in these situations. ;) If they continue to do well, there are rumors that the girls may be able to leave the hospital in as few as six weeks. It seems like such a long time, but we were told that some babies leave as early as 35 weeks of post-conceptual age. Of course, I think babies need to weigh more than 5 pounds before they can go home, so we may have to wait a bit longer.
We'll keep you all informed. I've done some juggling of web-sites and have moved the update site to http://www.thecrenshawfamily.net/ All the old information is still there and I've added another picture gallery, plus the weekly progress picture. Feel free to check them out!
Well, I'm gonna scram. I've got to get some reading done. Take care all, and God bless!
I need to be studying and taking care of some things around the house, but I wanted to get the news out.
Tatiana opened her eyes, yesterday!
Sometime before 9am she opened one eye, but didn't open the other. By noon she had both eyes open. I didn't get to see them with their eyes open, obviously, and by the time Helen got to the hospital, the nurses had already put the antibacterial drops in her eyes, which causes her to keep them closed most of the time. Helen did get a little peek from her, though.
Natasha is still being stubborn. She's been lagging a few days behind her sister ever since she was born. We're confident that she'll open her eyes when she's good and ready.
Both girls are still tolerating their feeds. Tatiana is completely off of the IV supporting nutrition. She's up to 14 mL of milk, fortified with 27 extra calories-worth of formula. Natasha is still at 13 mL of straight milk, but she's tolerating her feeds just fine. Her system seems to be a bit mor delicate than her sister's.
Well, I guess that's about it for now. Helen continues to do well. She's still battling the problem of the incision that won't quite heal. The doctors think it should be completely closed within a couple of weeks. She's getting good care in keeping it clean and dressed properly. Fortunately, it doesn't cause her any real pain...just occasional discomfort, she says.
Hope you all are doing well. We'll be talking to you again, soon!
Not to be outdone by her sister for too long, Natasha has decided to open her eyes and see what's going on. Apparently, it happened sometime between 8am and 10am this morning.
The goal is to get Natasha on the supplemented milk after the next three feedings. Once we know Natasha is tolerating the change, neither one of them will need to be on the TPN (IV nutrition). (My thanks to everyone at the DoubleBlessings group who warned me about the possible problems associated with TPN. I was planning on asking the doctors about that on Friday, but hopefully it will be a moot point by then.)
Finally, some big news I neglected to mention in the last letter. Helen may actually get to hold Tatiana this evening! The nurses said yesterday that Tat was probably stable enough to cope with actual skin-to-skin contact. I'll let you all know how things turn out.
Hello, again, everyone!
Well, it's Monday and we've had an eventful week. The website has been updated with all the pictures, but I'll fill you in on the important details.
Helen continues to get stronger and it won't be long before she's completely recovered from the surgery. Her incision is healing nicely, even if it is a little slower than we'd like. She's still required to change the bandage everyday, but that's a minor issue.
The girls are progressing very well. They are both feeding without any problems. They're gaining weight, too. Tatiana now weighs 2 pounds, 1.5 ounces, and Natasha weighs 1 pound, 13.5 ounces. The increase in weight has been accompanied by an increase in size, too. Both girls are measuring in at 14 inches in length. Tat is still gaining size and weight faster than her sister, but there doesn't seem to be anything to worry about, because both babies are doing all the things they're supposed to be doing at this point.
The number one change was the opening of the eyes, which I mentioned in the last update. However, the coolest thing this week was that Helen and I actually got to hold the babies. As usual, Tatiana was first, because she has always been the most stable and tolerant of handling. But Natasha wasn't too far behind and really seemed to enjoy the experience. I know that Helen and I really enjoyed it, too. We both held them directly to our skin, since that is supposed to be very good for premature babies. It's amazing how tiny and light they really are. I definitely chalk that up as one of the best experiences of my life.
Natasha did scare us a bit by showing us that she can make her hand change colors. While Helen was holding her, Natasha's hand would occasionally go completely white. When we showed the nurse, we discovered that her hand was still warm, but the nurse was unable to find a pulse in that hand. We straightened our her hand and after a few moments, the blood would come rushing back into it. This happened only about three or four times a few days ago while Helen was holding her and hasn't happened since. The doctors and nurses say they've never heard of that happening before, but they also warned us that babies, and especially premature babies, tend to have very poor circulation. They will continue to monitor the situation, but don't think it's anything to be worried about.
In general, both girls are doing really well. Natasha's heart is basically back to normal, having recovered from the damage she suffered as the last recipient in the TTTS ordeal. Tatiana continues to display the heart murmur she had from birth, but the doctors feel that they won't need to do anything about it. Many people go through their whole lives with a heart murmur. The doctors say that Tat has a slight case of pulmonary stenosis, which means that the valve going from her heart to the pulmonary artery (to her lungs) doesn't open quite enough. However, the murmur is very loud, indicating that the valve is still opening fairly well (if it didn't then the murmer may be almost inaudible). Either way, they think she'll be fine.
Everything else is proceeding according to the textbook for very very premature babies. We're so blessed to have strong healthy girls who have apparently decided not to scare us anymore with their health problems--well, at least for a while. I'm sure they'll find all sorts of things to get into when they get older.
We've been told that they might try to extubate Tatiana within a week or so. She seems to be handling the breathing thing well and it may not be long before she's able to do it without help. We're anxious for both girls to be free of all their tubes and wires so they can sleep in the same bed. I think they miss each other. ;) Either way, they'll be together soon enough. We just want them to be healthy, and they seem to be doing just fine.
Well, I suppose I'd better go. I've done my duty for the website and updates. Now it's time to hit the books, again. I hope everyone has a nice week. I'll send more news when I get it!