Fingers Crossed

Weston and I went to visit Angelyn this morning and had a thorough update from Dr. Gerstmann, her fantastic neonatalogist. He basically told us that Angelyn has overcome the two biggest hurdles (heart and brain) for preemies at this age. There will be more obstacles coming in the next few weeks; namely eyesight and establishing tube feeding. He strikes me as someone who doesn't like to sugar-coat anything...and even when things are looking up, he still reserves blanket statements about how everything is going to be fine for....never. He crossed his fingers a lot during our chat, which I suppose for him is a good sign that things are looking good. Anyway, since I can't think of a better way, I am just going to tell you in list format what we learned:

Heart- Now that Angelyn's PDA is closed, her heart structure is closer to that of a newborn than of a fetus. She still has fetal ventricles that open and close between the heart chambers themselves, but apparently those will close much more easily on their own. Again, now that the PDA is closed, I asked Dr. Gerstmann how much follow-up evaluation will be done on her heart. I was very surprised when he told me the recommendation from Dr. Judd, the cardiologist, was that we do a follow-up heart scan when she is 6 MONTHS OLD!! To me that speaks volumes about how confident they are that her heart is stable.

Brain-They performed a second brain ultrasound which came back perfect, as did her first. Dr. Gerstmann said the first two brain scans are the ones that determine the most. So they are confident that her brain is going to be fine. (By way of comparison, Adam's head ultrasounds were not so pristine. He had a very small area with Peri-Ventricular Leukomalacia (PVL) which is basically brain tissue that was damaged. He had to have a follow-up MRI at about 3 months and we just had to watch him carefully for physical developmental delay which, fortunately, was never an issue.)

Respiratory-Her lungs are still very premature. She has been on the nasal CPAP since she came off the ventilator on Thursday. She did have a pretty rough night last night. Since she has so many tubes and wires going through her facial orifices, they get irritated and have been creating a lot of mucous (and even some blood clotting). So they have been watching her nose and trying to keep it clean, always swabbing for bacterial infection. Dr. G said they will probably move from the nasal CPAP to a high-flow nasal canula instead, hoping it will be a little less irritating.

You can see the change here. She is on the nasal canula, not the CPAP which looks like an elephant trunk. (Photo courtesy of Grandpa Richards)

Feeding- A happy milestone for me, Dr. G told me that they have started giving Angelyn my milk! She takes only 1cc (less than 1/3 of an ounce) every 3 hours through the feeding tube to her stomach. There isn't much I can do to help her right now (I can't touch her or hold her), but since I have become a human dairy farm, I feel like I am part of the team. I'm the only one that can provide this for her and it makes me happy to know that she is taking it. They had me package the colostrum in syringes at first, so they could defrost it in the smallest necessary amounts. I think that is so clever, and something we didn't do with Adam. Another improvement since last time we did this; they print up labels for me with my barcode on it, so when they give her the milk,they scan it and confirm that the right milk is going to the right baby. Technology these days! Establishing tube feeding is the goal over the next 3 weeks, by which time if she is stable enough (fingers crossed) I will be able to hold her and start kangaroo care.

Well, that is probably more detail than you wanted. But I've had many of you tell me you are watching her progress on the blog, so I thought I would err on the side of thoroughness. I am home from the hospital now, and feeling better. I'm right at that stage of needing to remind myself to stay in bed. Since I feel better I think I am able to do more. Then the soreness hits me and I realize I've made a mistake.

Thank you again for all of the prayers and fasting on our behalf. We are so grateful and know that your support and prayers are making a big difference.

Great News

I just got a call from the nurse practitioner. They already did another ECHO and found the baby's PDA is closed!! I am so relieved and happy and thankful. She didn't even need the extra doses of medication. She is off the ventilator again and hopefully won't have such a hard time sustaining her breath. Thank you, friends!!!

More Prayers Needed

Well, this journey through the NICU is likely to be a two-steps-forward-one-step-back for the next couple of months. Remember that PDA blood vessel I told you about? The first heart scan showed that it was open and still very large. They gave Angelyn one round of medication (3 doses 12 hours apart) to try to help close it off.

I was lucky enough to be in the NICU when the cardiology tech came to do the follow-up study (called an ECHO scan). He allowed me to watch and patiently answered my questions. It was amazing. I continue to be amazed at the things modern medicine has achieved that enable us to keep preemies alive. I feel like I am mooching off of the hard work and dedicated study of other people. It is costing a fortune, and it should. I think anyone who has researched enough to contribute to this process deserves to be paid a LOT of money.

The ultrasound showed her heart pumping well. It also showed her PDA vessel to be smaller, a good indication that the medicine has helped. Unfortunately it is still open with blood passing freely. So, the plan now is to give her another round of meds (possibly with two extra doses if the docs think it's worth a try, for a total of 5) and to re-evaluate on Friday. If the PDA is still not closed, or looking like it is not going to close, they will start talking about having it closed via surgery. In which case, they will have to fly her to St. Marks in Salt Lake where she will stay for the rest of her NICU life.

After the heart scan, later that night, I got a call from the Nurse Practitioner. She told me that after I left, Angelyn started having more apnea spells; deeper and longer ones that she wasn't able to pull herself out of. They decided they needed to put her back on the ventilator. Not considered a major setback, but a minor one. She will probably stay on the ventilator until her PDA is closed. Her body is having to work extra hard to be expected to use her lungs as a newborn, yet pumping her blood with a fetal heart.

I feel like we are at one of those (many) critical crossroads. In the next 24-36 hours she needs to respond to the medication well enough to convince the docs she can do it without surgery.
I know all things are in the Lord's hands and He can do all things. Please continue to pray with us.
~Emily

Preemie Update -- Your FAQ's Answered!

How is Angelyn doing?

The nurses always tell me she is doing great. She tolerates the CPAP (one step down from the ventilator) pretty well most of the time. Not that that means she's out of the woods. The doc is worried about the blood vessel present in unborn fetuses whose purpose it is to bypass the lungs. (Google Patent Ductus Arteriosis). When babies go full term, that blood vessel constricts and disappears. In preemies they have to watch it and give meds to help make sure it doesn’t reflux blood back into the lungs. Apparently her heart scan shows that hers is exceptionally large. When I asked the neonatologist if he was worried about it, he said “yes.” When asked if he was surprised about it, he said, “no.” Hopefully she will respond to the meds that treat it. We will have an update on her response to the medicine later tonight. He's worried because this NICU technically only accepts 28-weekers and above, simply because they don't have quite as immediate access to specialists should the need for surgery arise.

How early was she and how much does she weigh?

She was born at 27.5 weeks. That’s about 12 weeks early….or for those of you on the 9-month plan, she was 3 months early. She weighed in at 2 lbs 1 oz.

How long will she have to stay in the hospital?

Probably until close to her due-date (Jan 5). It all depends on how well she does. We could bring her home late December or early January.

How early did Adam come? Is all of this territory you have traversed before?

Angelyn is 2.5 weeks earlier than Adam was. He was born at 30 weeks. It is amazing how much my perspective has changed. Now I think Adam was a big baby and we would have been so thrilled if Angelyn had made it even to 30 weeks. The neonatologist was expressing to me today that the road with Angelyn will be different. She will have a much different set of challenges and complications because of that 2.5 week difference. However, one advantage is that with Angelyn I had time in the hospital to get all the treatments that give the preemies a boost before they come. I did not have time for those treatments with Adam. So, thanks to the steroids, her lungs are doing fantastic already (she is off the ventilator) and thanks to that horrible 48 hour magnesium drip, her head ultrasound came back completely clean.

Why do you have so much difficulty carrying babies full-term?

I have an abnormal uterus. Some call it “bi-cornuate” some call it “septated.” Basically, when the uterus forms, it starts out as two separate tubes which are supposed to fuse and become one, making the uterus a pear shape. Mine didn’t fuse all the way. So my uterus is a heart shape and has a wall that extends halfway down the middle. This wall is called the septum and it is less vascular than the actual uterine wall. If and when the placenta decides to try to implant on the septum, the risk for placental abruption skyrockets. Placental abruption (when the placenta tears away from the uterine wall) was the cause of both of my premature deliveries. It is extremely dangerous and can cause fatality for both mother and child. Modern medicine is truly a miracle and I am so grateful we are all still alive.

How are you feeling?

I am feeling much better. My arms look absolutely dreadful from all of those failed IV and blood draw attempts. I look like I’ve been either beat up or a heroine addict. My incision will be sore for a while but I am so grateful to be on track for a full and complete recovery.

How would you rate your pain on a scale of 1-10? “Say 8! Say 8!”

It has leveled out at about a 4 or 5.

How are the kids handling everything?

The kids are doing great! I miss them much more than they miss me. They have been to visit me twice and they seem to be having a fantastic time with all of their cousins and friends. They have minimal comprehension of what is going on. Peter knows we have another early baby and asked to see her. It is very likely that they will not be able to visit her in the NICU at all. I was nervous when they came to visit me last week that they would be sad and scared. I tried to present myself as normal-looking as possible. When they came, I was relieved. They didn’t seem too sad. Yet they were affectionate and told me they miss me and love me.

What can I do to help?

We have been blessed by so many willing, helping hands and we thank you from the bottom of our hearts! We are grateful to be in UT with so much family around, and our ward has really come forward with so many offers for help. If you are not close enough to do anything but pray, PLEASE continue. We have felt the power of your prayers so much through the course of this little life experience. We came close to delivering the baby even a week earlier but we felt that, as a result of the many prayers offered in our behalf, things began to stabilize and we got almost a full extra week of gestation time on hospital bed rest. (My doctor gave me this formula: every day in utero counts as two in the NICU). So, please know that your prayers are needed, felt, and appreciated. The Lord has blessed us so much up to this point and we are still just trying to trust Him and hope and pray for a good outcome. Truly, if He blesses us with a good outcome then it doesn’t matter what we have to wade through to get there.

Well here she is

Our dear family and friends-

As predicted, they changed Emily's diagnosis to something like "placenta somethingus latinus" where the placenta is attached to the septum of the uterus (not everybody has a septum...and not everybody has a uterus). But that was yesterday or so. Today, Emily was not feeling as well as she was yesterday and started bleeding early this afternoon. By the time I got there, they were concerned for the baby's heart rate which had dipped to the 90s when it should be in the 140s. An LDS hospital staffer and I administered a priesthood blessing. Then things began to happen very quickly with hospital staff literally sprinting to get stuff and to run her bed into the operating room. Apparently her placenta had completely abrupted. Had we not been so "close" to the hospital things would have worked out on the other side of the spectrum. However, as a result of your many prayers and our good care here, they simply knocked Emily out and about 11 minutes later we had a new baby:

Angelyn Ricks

950 grams

35 centimeters long

(I'm giving the info out in metric because that's what hospital used and i figure it'll catch on and everything will be in metric soon. Especially 5Ks.)

When I told Emily about Angelyn's blond peach fuzz hair she simply replied, "big surprise." Both are resting well right now. They do have a lot of wires and things hooked up to them but most of it is simply precautionary or monitoring. Angelyn is very fragile, but they've got her in a warm incubator. She's on several medicines but nothing unusual for a girl who showed up so early to her own birthday party. The oxygen mix they have her on is very close to the same percentage that regular people breath (minus the smog), but it's going directly to her lungs.

I wish I could tell you more but it's still early and we're just getting to know her ourselves. Right now, even Emily has only seen photos I took of her baby and it's probably going to be months before Angelyn is ready to go home. She's got to grow and remember to breathe and know how to eat. But she's healthy for where she is in her life and we're optimistic and putting our trust in the Lord. Thank you all for your much needed support and prayers. The Lord has certainly blessed us through your many helping hands. We'll never be able to express to you how important it has been, is, and will be as we strive to help our little Angelyn climb this peak.

Thank you,

Weston, Emily, and Angelyn

Attached are a few photos of our family. Those who were not born today we're photographed on Thursday during a family dinner party in her "ante-natal" room. She'll be resting for the next several hours or day but feel free to send her an email. Angelyn has chosen to concentrate on growing and will not be able to visit with anyone for the foreseeable future but was happy to pose for the photos.

Hospital Update

Well, it has been a rough couple of days but I am feeling much better. Just wanted to post an update. As of this morning, the prognosis from my excellent doctors is that I will be staying in the hospital until I deliver. Initially we thought that if the bleeding and contractions could stop and I could prove stable long enough, the docs would see fit to send me home on bed rest. However, the concensus from the docs at the ultrasound this morning is that I have a blood clot draining from my uterus that was caused by a partial placental abruption. That being the case, it would be unwise for me to go home because it is impossible to predict when more abruption could occur.

I find a certain irony in the knowledge that the longer I stay in the hospital, the better. Technically I am not due until January 5th! But right now we are going to focus on taking it one week at a time. Our goal is to make it to 28 weeks, which is the cut-off age for the NICU at this hospital.

The first two days I was here I was bombarded with every treatment and precaution known to medicine to help babies that come so prematurely. Steroids, magnesium, you name it. It was brutal but now it is over and we get to just play the waiting game.

I called my parents' on Tuesday to talk to the kids and was flooded with emotion and memories of the hospital torture I endured for each one of them. And now they are the greatest blessings in my life. I know there will eventually come a time when these next few months will all just be a distant memory.

In the mean time, we are just going to do the best we can to get through and be grateful.
Thank you so much for all your thoughts and prayers. We know we have really been blessed and have felt the power of your prayers in our behalf. We are so grateful that our baby is still in utero will praise and be thankful for every precious golden day she stays there.

Hospital Bedrest....how we got here.

Dear Family and Friends-

Some of you know Emily has gone into the hospital due to pregnancy complications. First, let me assure you who may be learning this for the first time that things are going well. Second, if you don't mind, I'll give you some of the details because we'd very much like to share them with you and let you know our status, but I'm also lazy so I want to get most of the story out there all at once. Emily had some vaginal bleeding and went into the hospital last night (Sunday night) around 10:30pm. Things simmered down and they released us about 2am with a prescription for antibiotics for a bladder infection. I went to bed and Emily ate a sandwich ( I cut up some tomato for her). Anyway, the bleeding started up again and at five am Emily and I were off again to the Hospital. She was losing anywhere between 50 to 75 cc's of blood an hour. Contractions were about 5 minutes apart. The doctor was getting everything in order for an c-section just in case. That means, no food for Emily. An active I.V. in one arm and another ready in the other arm. A bunch of different drugs, via the IV: an antibiotic for the infection, an anti-inflammatory for the bladder discomfort, a magnesium sulfate that disperses the contractions, a steroid for the baby's lungs. At one point the doctor was getting us ready to airlift Emily to a more NICU intensive hospital in SLC but the perinatalogists wouldn't let her go while she was still bleeding. Plan B was for them to try and manage the case here (in Mt Timpanogos Hospital). This hospital is set up to take care of babies who are at least 28 weeks along. Emily is at 26.5 weeks and the ultrasound measurements put the kid at 25ish and weighing in at 1 pound 15 ounces so the little one would be stabilized right after c-section and then whisked up to St. Marks in SLC. Even at this point, 80% of the babies born at 26 weeks do well but at 28 weeks it bumps to 90% and the group with long-term challenges is reduced further.

Luckily, Emily's bleeding slowed down some but the clotting factors in her blood also went down (normally an inverse relationship). The lab ran the test twice to make sure the results were correct. Both results showed that she was dangerously low and could risk bleeding a lot more. Plus, with her outward bleeding slowing down (to 40 to 50 cc's), the blood must be going somewhere else, possibly pooling above the cervix. She was prepped for some blood transfusions which, if they didn't restore her clotting factors to proper levels, would push us to the c-section immediately. Luckily, throughout this whole ordeal, the baby's heart-rate was undisturbed and strong so instead of immediately getting the transfusion, the doctor took the time and ordered one more round of blood tests. Please understand that Emily was getting blood drawn (not counting the blood loss she was having) every one to two hours and they kept poking a needle into the one arm without the active IV (they even tried once on her foot), each time more painful it seemed than the last. And her veins we increasingly difficult to draw from. At one point they even had the anesthesiologist give it a go and it took him several attempts to get it done. She's been a bit of a pin cushion and her left arm is bruised from it all.

Even as the transfusion supplies were prepped and wheeled into our room, the new tests came back with an amazingly high count of clotting factors. The nurses rushed in with the good news that the transfusion was no longer needed (at least for now) and a moment later they also found out that the doctor reduced the blood draws from one hour to two. Emotionally, it was a huge release for the two of us. It pushed back the inevitable c-section to give Emily's body time to continue to work out the bleeding and give the antibiotics time to have an impact on the bladder infection (the presumed cause of the early labor). We also learned from the ultrasound that the placenta is secure but has a bit of a node that has grown over the cervix making it placenta previa instead of a blood clot over the cervix (thats kind of like finding out that contrary to news reports your house didn't burn down, instead, it was an earthquake) Still, pretty good news since that meant that it wasn't a placenta abruption (a likely cause for unexplained bleeding).

Over the last hours, things have simmered down enough that, as I write this, it is about 10:30 pm and she has snatched a few moments of sleep. The last pad they pulled from her bed didn't have any blood on it. The nurse just told us that they won't probably have to draw her blood again. Medications in her IV will go at least until 6am on Wednesday but she might be able to eat again tomorrow afternoon. Right now, regardless of how things go, Emily will be in the hospital at least for observation for the next several days.

Throughout this ordeal, I've been reminded of the strength of the mothers in my life: Emily, my mom, my mother-in-law, my sister and sisters in law. Each of them work a wonderful miracle with each new spirit they bring into this world. Emily has shown tremendous courage in her efforts to nurture and care for the dear little life developing within her in the face of very real dangers to her own wellbeing. It reminds me of some thoughts Elder Holland shared about motherhood: http://www.youtube.com/watch?v=WbYLKVgwztY&feature=player_embedded#!
Indeed, angels have watched over Emily today and we have relied on the Lord. As of this writing, things are calm. The baby's heart-rate continues to be strong and distinct. She must be a brave little trooper to put up with all the extra noise and the probing and the poking of her mother and we look forward to meeting her and introducing her to you. However, with your continued prayers, we hope that meeting will not happen for another few weeks. We are grateful for each of you and for your friendship and your prayers.

Weston