Cleft Repair/Ava's 2 Months Old!

Ava had an appointment with Cranial Facial at Children's Hospital in Seattle on September 10th. We had four back to back appointments where we were able to meet the whole team that decides her care plan and will be working with us through the process. After meeting Ava and evaluating her cleft lip, the surgeon said that the best fist would be to have the surgery done around six months from Ava's due date. He said that Ava with stay in the hospital over night for evaluation (we will be able to room with her). Then we will need to apply ointment over the first week and go back in to have the stitches removed a week later. The care team all agreed that usually babies are able to go back to nursing after the surgery without any need for assistance or special feeding. This news was a huge relief to me and made me feel better about the whole process. We also went in for Ava's two month appointment where she weighed 9lbs 10oz!!! I knew she was getting heavy. She is a happy healthy girl, starting to pack away her adorable newborn clothes as she grows out of them. It hard to believe that she is growing so fast. :) I guess they all do, since I can't believe how big Cam is getting either.

Happy Due Date Ava: 9/9/2012

Happy due date sweet baby girl. Wow, so much has happened. It's hard to believe I have gotten to know you over the past 10 weeks and you were not even due until today. :) We are so happy to have Ava home. Working on adjusting to our new life as a family of four. Cam loves his little sister sometimes it"s hard for him to give her a little space. It's tough learning to share mom and dad. I know he will be a great big brother though.

37 Weeks: Ava is Home!

Ava came home Thursday the 16th and is doing great. She weighed in at 3lbs 1oz when she was born and today she is almost 7lbs! We are so thankful to have her home and get to start our life as a family. Thank you all so much for your love, prayers and support through this journey. We love you!

36 Weeks

Wow, hard to believe that it has already been six weeks since the night the girls were born. Ava has doubled her birth weight weighing in at over 6lbs. No more preemie clothes for this girl. :) Ava is doing great in the NICU and we are really hoping to have her home in the next week or two. Before she can come home she has to prove that she can eat on her own. She needs to take full feeds (51ml 8x/day for at least 48hrs). At this point she is taking in some full feeds and some partials. What she doesn't eat on her own she is fed through her tube feeds. It feels like it is so close, but so far away since there is no date set, we just have to watch how she does with her feeds. Here's to hoping our next update is that she is coming home. Obviously we don't want to have her home before she is ready, but we want her home the moment that she is. We are ready to start this next chapter of our life together, as a family. :)

July 27th (33 weeks)

This has been an exciting week for Ava. On Tuesday morning the nurses moved Ava out of her isolette and into a bassinet/crib. This felt like a huge step and makes her so much more accessible. Grandma and Grandpa Douglas (Great Great & Nanaw)were in town on Tuesday and Wednesday, so they got to see her make her debut and got in a little much loved snuggle time. She seems to be doing great and not having any trouble keeping her temperature up and continuing to gain weight. She even broke the 4lb mark this week, weighing in at 4lbs 8oz today. She has been growing a ton this week. It looks like by the time we get to bring her home she won't likely be in preemie clothes anymore. Yesterday Jeff and I got to give Ava her first bath. Can you imagine not taking a bath in over 3 weeks? She seemed to like like it, especially once she was clean and dry and snuggled in some fresh clothes and blankies. To top it off, the Physical Therapist stopped in today to evaluate where Ava is at in regards to being ready to nurse/bottle feed. For the past few days they have had me pump and then let Ava get used to the idea of nursing - without all of the milk. It is still a bit early for preemies to get the whole such, swallow and breath down. Ava was super excited and got some great suction (this is a great sign that the cleft is not likely to be a feeding issue). Maybe a little too zealous since she didn't want to stop to breath without us making her. It is still early but we will be working with her slowly when she shows interest. We also have an appointment set up with Ava's Physical Therapist(PT) on Monday morning to meet and evaluate her on actually nursing. The PT said that some babies do better with one or the other and nursing may just be her thing- that would be awesome. Either way it's a big step forward to be at this step. We are so thankful for how well Ava has been doing and so look forward to the day when she is ready to come home!

Thank You

(I love this photo from our maternity shoot. It makes me feel a sense of peace and of letting go. This pose was all Cam. -photos taken by Vicki Zoller and Rachele Valadez)

(25 week maternity photos. It's hard to believe all that has happened in the past 8 weeks. -photos taken by Vicki Zoller and Rachele Valadez). I am constantly reminded of all of the wonderful people in our lives, and all of the new people who have entered our lives through this entire experience. I am so thankful for all of you. Thank you Vicki Zoller for the beautiful photos that you have given to us as part of the Now I Lay Me Down to Sleep. We will cherish these memories forever and love making new memories with Ava in our lives.

3 Weeks

(Ava 3 weeks/33 weeks, napping with mama) It's hard to believe that 3 weeks ago tonight I went in for an unexpected c-section and met our girls. So much has happened in the past month that at times it feels like months and other times I can't believe that Ava has already been the NICU for three weeks. Ava continues to do great. She seems to have bypassed many of the problems that preemies can run into early on and is just focusing on growing and developing. When she first started eating (until around 34 weeks this is all done by feeding tube), she was ~3lb 1oz and taking 3ml of milk, now she is ~3lb 8oz and takes 33ml. It sounds like pretty soon we will get to introduce Ava to nursing and see if she is developmentally ready and see how her suction is with her cleft lip. All of doctors and nurses have said that Ava's pallet looks great and that there is a good chance she can still be a great nurser. Jeff spoke with someone from the Cranial Facial Clinic at Children's who said that they expect Ava may only need one surgery to correct her partial cleft lip. They said that with a full term infant that is usually done between 3-6 months, so I'm not sure exactly when that falls with a preemie. They also said that they would want to follow up with Ava again around two years and then again around five to check on the development of her nose and pallet to determine if any additional surgeries are needed. It was nice finally getting abit more information. Thank you again for all of your continued prayers and support. Thlay

7/11/2012

(Ava's first outfit, 11 days old)

Ava is doing great. I was able to hold her twice today, once in her first swaddle and once skin to skin. I love their big cozy lounge chair, you can just kick back and fall asleep. The nurses always have good things to say about our little one. Babies in the NICU usually start to be introduced to nursing/bottle feeding around 33-34 weeks, because that's when they being to be able to suck, swallow and breath, instead of just suck and swallow. A few of the nurses have said that Ava shows signs of being on the earlier end since she loves her binkie (you can hear her sucking on it) and sucks her thumb/hand and will lick/try to chew you. The docs/nurses said that with a small cleft lip like Ava"s there is a good chance that it won't interfere with nursing but they will help with tip/tricks when the time comes. I also got to put on her first outfit today, so exciting! They have all sorts of cute little preemie outfits to pick from for while they are there. So glad that all of the NICU nurses seem to love babies. Jeff's parents wanted a sleepover with Cam so we were able to go out to dinner tonight, and I don't even know what it will be like to sleep in tomorrow before we head in to see Ava. Thank you all for your continues prayers and support. You are AMAZING!!! Thank you, Thlayla

Ava is One Week Old

Wow, it has been a week since Ava and Isla were born. In some ways I can't believe Ava is already a week old, and in so many others it feels like we have been through more than could possibly fit into one week. Ava continues to do great in the NICU. Yesterday evening Ava hit full feeds for her size/age/weight which is 26ml every 3 hours. Since she is on full feeds, last night they took out the IV that went into her belly button, that supplied extra fluid and nutrients. This morning Ava starting breathing room air without any assistance, and this afternoon they took out the nasal cannula completely. She seems much more comfortable with every piece of equipment that they take off. It's wonderful to see her face and makes me feel more comfortable being more involved. Today Jeff, Camden and I all went to visit Ava. Camden is in LOVE with her and will be an amazing big brother. He just wanted to touch her feet and tickle her. He said "want Ava come home," and "Stay here, not wanna go home." I have no idea how long he could have been content watching her, touching her feet and singing to her(itsy bitsy spider). It was beautiful to watch, I wish I had taken a picture. I got to spend an amazing two hours holding her (skin-to-skin, Kangaroo care). As soon as she is snuggled up on my chest, she feels so relaxed and happy, I love the feeling. There is no doubt that she knows I am her mama. I did have a scary moment holding her when the monitor alarms went off because she "forgot" to breath for a second or so (I have no idea how long it was, but it felt like forever). The staff didn't seem concerned at all, they just said stick a finger in her armpit and she bounced right out of it. The staff said that it is to be expected with preemies and that they grow out of it. It still made my heart stop. It continues to be hard juggling everything with a baby in the NICU and Camden at home, especially since I can't drive for at least two weeks after the C-section. Everyday we try and figure out what works and what doesn't and remind ourselves that as hard as it all is, this is temporary and someday we will be able to look back on it all. Thank you all for your continued pray and support. Thanks to all of you who have brought meals, shared advice, and just been there for us. Much love, Thlay

7/5/2012 Update

(5 days old) Well after ten days, Thlay is back home. This feels bettersweet to all of us (except Cam, who is just glad to have his mama home). And most likely Gigi and Pops Potter, who have had Cam 24/7 for the past 10 days! Everyone has been a trooper. Life feels surreal. It seems kind of crazy to leave Ava at the hospital and at the same time a wonderful blessing to have world class care provided to her. It'll be a real juggle for Thlay and Jeff to find balance between a two and a half year old at home and a newborn who is a minumum of 45 minutes away. Ava is one fiesty girl! They took her off of C-PAP a couple of days ago. She hated that machine and actually managed to pull it off once. They're working on decreasing her 02 and increasing her feedings, all of which is going well. She's now on a little nasal cannula. She started out on 8 liters/min. and yesterday was down to 5. Today they'll see how she does on 3. We are constantly reminded that with premies Ava's age it is three steps forward and two steps back, but we are all grateful for the forward movement. She knows who Thlay is immediately and loves sleeping on her chest, with that sweet skin-to-slin contact. Ah... Mama. They say premies usually get to go home around their due date, plus or minus 2 weeks, so we're looking at somewhere around September 9th. The nurses are impressed by the headway she's making and they all agree that she already "Tells it like it is." She lets everyone know if she's hungry and is very vocal about diaper changes ar any other changes for that matter. This girl is a fighter and will hopefully contimue to hold a positive course ~ Weyshawn

Pics

7/2/2012

Well, it's Monday afternoon and Ava is a day and a half old and still holding her own. They have kept her on C-PAP and are talking about briefly intubating her to give her surfactant to help keep the aveoli open in her lungs. This will help her with her breathing, if they decide to do it. She has a feeding tube and has been tolerating Thlay's breast milk very well, eating everything Thlayla pumps. Thlay was able to hold Ava on her chest for an hour this morning and is over the moon in love with her baby. I am in love as well. Hoping for a great outcome! Thlayla is amazing. She's up and walking. She walked all the way down to the NICU, which is about a football field away from her room. Jeff is amazing and so are his folks. They've had Cam since last Monday and are in for the long haul to make everything work We feel blessed everywhere we turn. Thanks for your well wishes and prayers ~ ~Weyshawn(Mom)

7/1/2012 Our Girls

We welcomed Ava Potter into this world at 2:39 am. Isla graced us with her presence for an hour before we said farewell. She was a beautiful spirit and we all feel lucky to have had her in our lives even if it was for a brief moment in time. Ava weighed in at 3 lbs 1 oz and I think she was as shocked to be here as we were to see her. She cried heartily and hit 9 on the APGAR scale and then 10. She is in the NICU, and will be for a long while, but is in stable condition and holding her own. They did not have to intubate her but her breathing is being helped by a C-PAP machine. Thlay is doing great. Dr. Jolley wasn't able to make it in before the C-section. It ended up that Dr. Andy Warner did the surgery. When he came in to introduce himself he said, "Thlay?" and she said, "Andy?" It ended up that he was an old college friend of both Thlay and Jeff. He is now the Chief Resident here at the U and everyone loves him. It was pretty awesome to have an old friend their do her surgery. Thlay is out of the Recovery Room and has seen Ava and is now sleeping. Keep us in your thoughts and prayers, Weyshawn (Mom)

6/27/2012

Well, we're still here at the U of WA. Big slumber party here last night with Thlay, Jeff & I. When Dr. Jolly checked Thlay this morning she was dilated 1.5 cm & 70% effaced. This is a big change from yesterday. They're going to check her again in a few hours & if things are still progressing, they'll put her on a magnesium sulfate drip & hope it will completely stop the labor. The mag is a smooth muscle relaxant and should calm things down. It apparently also has a protective mechanism for the babies brain. Jeff left a while ago to bring Cam over for a vistit. Thlay is really missing him but it sounds like he is having a great time at the Potter's. We keep you posted as new info arises ~ Weyshawn (Mom)

6/28/2012

Yesterday afternoon I was started on the Magnesium Sulfate drip and it seems to be working. The contractions slowed way down and I was able to sleep last night. The girls continue to look great on the monitor, happy and active with great heart rates. If everything continues to go well, they plan on decreasing the Magnesium Sulfate drip and see what my body does. If the contractions don't return, there is a possibility I may get to go home.

UW Update

Yesterday I finally received the amnio-reduction around 2:00pm. It was a rather painful procedure, but they were able to take off about 1 liter of extra fluid from Isla's amniotic sack. Afterwords I experience a lot of pain and cramping, which is usual as your body readjusts. Immediately afterwards you could see a huge change in my belly. After a few hours things calmed down and my pain and contractions decreased just as my doctor was hoping. I received the second steroid shot before bed, so in case of an early delivery Ava will receive the full benifits of the steroids by tonight. This will help increase her lung developement and hopefully decrease her need for intensive breathing assistance if she is born in the next 2-3 weeks. Last night I experienced some painful contractions and unfortunatly when my doctor checked this morning I was dilated 1.5cm and 70% effaced. My doctor is planning to re-check this afternoon. If things have progressed I will be put on a Magnesium Sulfate drip to try and stop any labor progression. The magnesium Sulfate also helps protect babies brain in case of an early delivery. Jeff just left to take my favorite little man Cam back to Pops and Gigi's house. It was so good to see him, especially since we are always together. We are hoping to know more soon. Thank you all for your love, prayers and support. We would love to see these babies stay put!

29 Weeks, First Hospital Stay

Sunday marked 29 weeks for the girls. Up until this weekend things have been relatively uneventful. Friday morning I woke up extremely dizzy. Jeff stayed home to take care of Cam and I had to lay low. When I called in with my symptoms, the consensus was that the dizziness was likely caused by the cold I had. I took it easy on Sunday and by Monday when I was having lower back pain and a general uneasy feeling my doctor recommended coming in. On the ultasound my doctor noticed right away that Isla had a lot of extra fluid in her sack. Likely because she is unable to swallow and process the fluid normally due to the abnormalities from Trisomy 13. Ava's fluid levels are normal so the aren't worried about it being from twin-to-twin-transfusion. My doctor believes that all of the excess fluid is causing my uterus to contract because it is so strained it thinks it's time for labor. Later this morning I am planning on getting an amnioreduction, where they remove the extra fluid in hopes of stopping the contractions and keeping labor from starting. There is a small risk that the procedure could break the amniotic sack/start labor. At this point I am not considered to been in labor, which is exactly how we want it to stay. Last night they gave me the first of two steroid injections to help develope Ava's lungs in case of an early delivery. I will get the second injection tonight, 24 hours afterwards Ava will have the full benefits. I expect to stay here on the monitors through tonight and if everything goes well, there is a possibility I could go home tomorrow.

28 Weeks

28 weeks pregnant with Ava & Isla

Wednesdays appointment went really well. Both girls continued their great growth, Isla at an estimated 2lbs 8oz, and Ava 3lbs. I was so happy to hear that they are both growing well and that I am still not showing any sign of pre-term labor! During the ultrasound, both girls finally showed their faces, it was great getting to see them. We were also able to get a better look at Ava's cleft lip. Again the Ultrasound Tech noted how small it was (2mm), and after taking a good look said that Ava doesn't appear to have a cleft pallet, but that is difficult to detect 100% by ultrasound. Our doctor even said that if Ava just has the small cleft lip, I will most likely be able to nurse. After talking in depth with my Doctor we decided that the best form of delivery would be by c-section, due to the risks associated with twins sharing a placenta and the fact that Isla is twin A (in position to deliver first) and the possible complications if something were to happen to Isla before Ava could be delivered naturally. It is so funny how different it all is from my experience with Camden (working with the midwives and no need for any intervention), and I am totally fine with that.

There is not set delivery date at this point since it is all dependent on how the girls continue to do, but we expect to meet the by the time they are 37 weeks if not before. So crazy knowing we will most likely be meeting them before August 19th. My original due date was September 9th.

Starting at my next appointment in 2 weeks (7/3) we will have increased monitoring with at least weekly appointments including NST (non-stress test) to make sure that there are no indications of a need for an earlier delivery.

Thank you all for your continues prayers and support, it has been amazing!

27 Weeks and Counting

27 weeks w/twins

27 weeks w/twins

Wow, I remember thinking 24 weeks was a long way off. So happy to make it to 27 weeks without any signs of additional complications. Here's to 28 and beyond!

26 Week Appointment: 6/6/2012

26 weeks

The day before my scheduled two week appointment I started getting a lot of Braxton Hicks contractions (practice contraction), so I was glad to already have an appointment set up with my doctor. At my appointment they checked for any physical signs of pre-term labor (shortened cervix ect.). My doctor said that everything looked great. She also said that since I am carrying twins, she wouldn't be surprised if the Braxton Hicks contractions continue until the girls are born. Both girls are still growing well. They are big enough now that they will be able to start giving us an idea of their weight at our ultrasound appointments. Isla measured at 1lb 12oz (41% for singleton babies, they don't have charts specifically for twins) and Ava measured at 2lbs 3oz (60% ). This is great news! Our doctor expects that Isla will lag in her growth because of the Trisomy 13, but was happy with both of their progress. My next appointment will be in two weeks and then after that we may be transitioning to weekly appointments.

The further along we get the more closely they will be monitoring the girls, especially Isla for signs of stress. At this point our doctor said that if Ava showed signs of distress she would not recommend delivering Ava this early, because the risks are still too great. The fear is that if something happens to Isla and she passes away before Ava is delivered there is around a 30% something catastrophic would occur in Ava at that moment (a stroke resulting in brain damage, death ect). As we get further along and pass the 30/32 week mark our doctor would strongly consider delivery if Isla appears to be doing poorly. For that reason in the next few weeks I will start going in more regularly for monitoring and non-stress test.

Yesterday's appointments were reassuring, seeing that both girls are still doing well. We are praying that they both continue on the same path and that we get to avoid having to make some of the hard decisions that would come with an early delivery.

Again, thank you all for your prayers and support. It has been really nice hearing from so many of you. Thank you! :)

*We did get the results a few weeks ago confirming that Ava and Isla are indeed identical twins.

Ava & Isla Updates

Thank you all for your love, prayers and support. We can't thank you all enough. I have tried to put together updates on what is happening with our girls. As you may or may not have known, we received some surprising and sad news at our 2nd trimester ultrasound. We were super surprised to find out that we are having identical twin girls, but some major complications/abnormalities were found at the same time. If you want to catch up, scroll to the very bottom and start with our first post dated 4/19/2012.

So This is 25 Weeks with Twins....

25 weeks w/ Camden

25 weeks w/ twins

So this is 25 weeks with twins. I feel a huge difference from when I was 25 weeks pregnant with Camden. I have a hard time even imagining what each new week will hold.

5/23/2012 Appointment Update

All of our appointments went well. On ultrasound both girls both girls appear to be growing on track and no signs of twin-to-twin transfer or other distress. We were so happy to see that they are doing well, since we want to them to stay put for the long haul. They also said that my body wasn't showing signs of pre-term labor so my next appointment will be in two weeks. We met with the Pediatrition who manages the neontal care unit at UW. He gave us an idea of what we could expect if our girls were born at different weeks. He talked about how even though Isla may not look like a typical newborn, if she makes it through birth he whole heartedly beleives she will know that I am her mom. That she will know my smell and my touch and that they will help to make sure that our time together is everything that it can be. Needless to say I had to blink back tears. He also let us know now that we have made it past the 24 week mark and Ava's outcome improves drastically with every week that she stays put. Things really start looking better after 28 weeks as far as survival and long term health. We are hoping to greatly surpass that, and would love it if Ava could skip the NICU all together. 

Again, thank you for all of your prayers and support!

5/9/2012

Thank you all for your continued love, prayers and support! Here is our most recent update:

Our appointment went well on Wednesday. During the ultrasound both girls looked like they were doing well. They both appear to be growing on track and there was no indication of Twin-to-Twin transfusion, which they are always checking for in pregnancies where twins are sharing one placenta. We also received our final test results back from our amniocentesis and they looked pretty much the same as the preliminary results: Baby A (Isla) was confirmed to have Trisomy 13 and in Baby B (Ava), they didn't find any cells with Trisomy 13 or any other chromosomal abnormalities that are screened for. So this is the best news that we could ask for, YEA! The doctors still want us to be cautious with our expectations as they cannot guarantee that all of the cells in Ava are free of Trisomy 13. They are bothered most by the fact that Ava also has a cleft lip and that the findings are completely unexpected from a medical standpoint, since Ava and Isla appear in all ways to be identical twins. They are waiting for test results (in the next week or so) that can determine whether or not the girls are identical twins or fraternal. They said that they would be very surprised if it came back that they are not indeed identical, but that they have been surprised by so many things so far, that they wouldn't count out the possibility. The findings wouldn't change the way that they are managing my care (because of the shared placenta ect.), but if it turned out that they are not identical, they would expect that Ava's cleft lip was due to environmental factors and not chromosomal. If indeed they are identical twins and Ava doesn't have Trisomy 13, it really is amazing. When you look at the genetic side they only way this could happen is through something called a Triosomy Rescue which is practically unheard of (<1% chance, though it is hard to say because they just haven't seen it occur many times). In essence I look at it as Baby A, giving Baby B a chance at life! It all makes much more sense in illustrations, just know it is amazing. When we had asked Cam what we should name his sister if we had a baby girl, he said Ava and Jeff and I really liked it. When I looked up the meaning and it was "life," it somehow seemed even more beautiful and full of hope. There is still a long journey ahead, thank you all so much for your continued prayers and support. We can't thank you enough.

22 weeks

4/27/2012

We just got some preliminary good news today regarding our amniocentesis results, that our twin baby girl "B" may not have Trisomy 13 like baby "A". The lab and doctors were very surprised by the preliminary findings and and have more information to analyze before they are comfortable to giving us the new that we are hoping and praying for. We should get the final results in 7-9 days, but Jeff and I are at this point moving forward with the hope that one of our girls will be unaffected by Trisomy 13. We feel hope and even doctors are searching for how/if this could be. Maybe we will get to be part of a miracle. I don't want to get ahead of myself though, there is still so much unknown.  And in all twin pregnancies even if Trisomy 13 is ruled out we know there is a long road ahead. 

Again that you for all for your continued prayers and support, I am overwhelmed by the magnitude of people who are praying for us and our girls. Thank you!

21 weeks w/twins

4/24/2012

It's been an emotionally exhausting past few days. At Mondays ultrasounds we saw even more issues affecting baby "A" which lead the doctors to strongly believe she has a chromosomal abnormality calledTrisomy 13. Because they are identical twins we learned that means our other girl could be affected too, just presenting differently. On Wednesday we thought we had already had the worst news. Then we learned that if baby "A" does have Trisomy 13 there is a less than 1% chance our other daughter doesn't, especially since she is also presenting a cleft lip (a soft indicator for T13). There is so much complexity that comes in to play with gentics, but seeing illustrations ect., it was painfully easy to understand the odds not being in our favor. We will know more in the next few days/weeks. Working on regaining/holding on to a sense of peace. Thank you so much for your continued prayers. All of the love and support is encouraging. I know that there is a reason for all of this even if we don't understand. I keep praying for peace and trust even when things don't go the way that I planned. I have already seen God working in so many ways through this experience and have no doubt he is bringing people and relationships into my life in ways they would never have been before.

4/19/2012

19 Weeks

We went in for a routine 2nd trimester ultrasound, wanting to see 10 fingers and toes and hoping to find out if we were having a boy or girl. Right away we got the feeling that something was wrong. The technician asked questions like, " Was your first pregnancy considered high risk?" (No, everything went great). "So how have you been feeling?" (I've had really bad all day morning sickness, but it's starting to get better). "When do you see your doctor next?" ( I just saw them this morning, but I can see them as soon as I need to). When we saw him write baby "A" on the screen my husband and I both knew it must be twins. Wow, talk about overwhelming and unexpected. Unfortunately we could quickly tell that was not the news or his reason for concern. He was easily able to tell us that baby "B" was a girl, when we asked about baby "A" he muttered that he thought a girl too. Then he told us that everything did not look right and that he was seeing some things that really concerned him. 

When he left the room to consult with the doctor I couldn't stop thinking about all of the terrible things that he could be about to tell us, hoping maybe it wouldn't be as bad as anything I imagined. Instead he came back and shared that baby "A" had numerous abnormalities, her brain hadn't developed past the brain stem, a cleft lip and facial abnormalities, that she had a heart abnormality and that she was "incompatible with life." The only abnormality that he could see in baby "B" was a cleft lip. After a consultation with the reviewing doctor we were referred to the Maternal Infant Care Clinic in Seattle for an appointment with a specialist the next week. Walking out of that appointment was nothing like we imagined. There wasn't the excitement to call everyone we knew with the great news, because it wasn't, what do you even say? It just all felt overwhelmingly sad. We wished we could meet with a specialist right away, and have all our answerd, but we knew we would just struggle with questions over the weekend.