Castle Conjoined Twins

Castle Conjoined Twins

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Well it has been a busy and tiring week, but we have much to be thankful for! Both girls got G-tubes this Monday, and though it didn’t go quite as smoothly as we had hoped, in the end, things ended up going ok overall. Due to the girls’ extensive scar tissue from their separation surgery, as well as some internal organs in different places than normal, both girls’ surgeries ended up being a little more complex and time consuming. From what we understand, a typical laparoscopic G-tube placement can take as little time as 10 to 15 minutes. Elizabeth’s took two hours and was able to be done laparoscopically, but Susannah‘s took four hours and they had to be more invasive with a sizable incision and place it manually.

There were some tense moments when things took much longer than we anticipated, with little updates throughout. It felt a little reminiscent of some of the past procedures and surgeries they’ve had, and it took us right back to a place of total dependency on the Lord and simply calling out for him to protect and to preserve our girls. Thankfully, the girls had a wonderful, experienced surgeon who handled everything without skipping a beat and was awesome for us and our girls. The nurses, doctors, surgeons, and all the specialist at Children’s of AL here in Birmingham continue to take such good care of us and our girls and we are so thankful for such amazing medical care. It was also so reassuring and comforting every time we would meet or run into a friend or new acquaintance who worked at the hospital and either go to our church or have been praying for our girls overtime. It’s a continual reminder to us of how the Lord has used so many people to lift us up and care for us when we don’t even know. Every time someone says something to us it is such a huge encouragement and so humbling.

We were in the hospital for three days recovering with the girls, which was quite a juggling act, while also trying to care for the three older kids and get them to all the places they need to be. Each hospital visit seems to take more of a toll on them and they struggle having both of us away for that amount of time, but the Lord continues to give us grace and margin, and lots of help from amazing family and friends.

The recovery process is a bit daunting for us right now and seems like it will be a slow and long learning curve. It’s strange to feel like we were very comfortable and proficient with all of the feeding and care details with the girls, only now to have to relearn a new system. Both girls are very sore and temperamental still, which we hear can last for quite some time. Their incisions will heal in the next few weeks, but the actual G-tube placement will not fully heal for eight weeks. During this time, if it gets dislodged or pulled out, it’s an automatic ER visit, with a potential OR surgery to put it back in. We’ve already found that Elizabeth’s bleeds fairly easily when it is bumped at all, so it feels a bit like we are walking on pins and needles as we try to cautiously protect their abdomens. Which is quite hard for very active girls who crawl and climb and squeeze into and over and under everything, as well as having three older siblings who love crossing personal boundaries with hugs and kisses and cuddling and picking up at every possible chance. We are all learning together.

The other important piece of the equation was that while Elizabeth was under anesthesia, the cardiologist was able to do a more in-depth echocardiogram to look at the hole in her heart. We are SO thankful that he has confirmed that her hole is in fact a little smaller! We are so thrilled and so thankful!! This is certainly not enough to change the whole equation yet, but it is hopeful that it may continue to get smaller, and enough to temporarily hold off open heart surgery. They think it’s best to wait and watch it and we will likely do another heart cath down the road to get more data about the hole’s progress. We continue to pray and ask you to join us in praying that the Lord will work yet another miracle in making this hole smaller and smaller, until open-heart surgery is no longer necessary at all! We can’t wait to keep singing the Lord’s praises about what he’s already done and pray for more opportunity to do so.

Overall, we’ve made another good step in the right direction and we are thankful for the Lord‘s care and provision for our family. Thank you for your faithful prayers and encouragement! We simply wouldn’t be at this point without you all!
The twins had their first beach experience and they loved it! Elizabeth, who is usually a little more skeptical and timid, was all about being in the ocean. Susannah, who is always ready for a party, equally loved the ocean and the waves crashing on her while being in our arms. They enjoyed playing in the sand and, like typical babies, put it straight in their mouths. They really surprised us!
The rest of the crew had a great time, too! We were so thankful to have some grandparents join us and help make it possible and enjoyable! We had golf cart rides, lots of shell digging, crabbing, sand flea searching, jellyfish dodging, and wave jumping. It was just what we needed going in to this next week of…

Gtube surgery! We would love your prayers for a successful surgery and recovery with no complications. Also, the cardiologist will be doing an echo while Elizabeth is under anesthesia to get a better picture of her VSD. We’re praying that the hole in her heart is, in fact, miraculously getting smaller and we can continue to hold off on an open heart surgery. Please pray with us!

As you might imagine, it will be quite a logistical challenge this week since the girls will be in separate rooms and need both parents there the majority of the time, while we have the older 3 at home wanting our attention, needing to get to and from school, soccer, ballet, etc.y Please pray for lots of grace this week and for our older children to roll with yet another division of our attention.
We’ll update later this week.
Thank you so much!
We’re really good at sporadic posts with prayer requests and no updates! Our apologies!! A brief recap since our last post:

1-Elizabeth did NOT go to the hospital with the last round of viruses 🙌🏻, but…Susannah did…again. 😣 The docs are thinking it may be more asthma-related and that’s why every cold virus affects her breathing so much. After only days inpatient this time, she came home and both girls recovered quicker than their last round of sicknesses.

2-Both girls are getting gtubes! They are scheduled in a couple of weeks and we are anxious to get these tubes off their faces and out of their noses/throats. We’re hopeful that this change will help them develop their eating skills and will make life a little more manageable for us. It will involve a couple of nights in the hospital for their recovery so please pray for them and our big kids as we have to spend more time away from home.

3-Elizabeth had a cardiology appointment yesterday and it was very encouraging. Since her previous appointment 2 months ago, we weaned her from one of her heart medications and there were no issues from that process. Praise God! Also, the doctor thinks *maybe* the hole is a little smaller!! To get a better look he hopes to sneak in a quick echocardiagram while she’s sedated for the gtube placement. We’re praying this will confirm his suspicion that the hole is getting smaller and praying that it will continue to do so even more. As you know, we would LOVE for her to avoid open heart surgery (both for the dangers of the process and the extra scar and damage to her breast bone).

In case anyone is joining this “party” late, Elizabeth’s heart has been a story of miracle after miracle. So that I can remind myself and you how gracious God has been—we originally thought Elizabeth might have a very serious heart defect that would have required almost immediate surgery after birth and would have been life-threatening. It would have been tricky on a singleton baby and even more tricky on a conjoined twin. Then we found out she didn’t have that serious heart defect after all, because her heart corrected itself and was what they thought was “corrected transposition of the great arteries”. Now we don’t really know what the official diagnosis or name for her heart condition is but it is very abnormal and interesting to cardiologists. Then there’s the VSD (large hole) that we’ve known about since before birth too (although they originally thought it was small). We weren’t sure how it would affect her and after close monitoring in the first few months of her life she was set to have a surgery to essentially tie a string around her pulmonary artery so that it would restrict the blood flowing to her lungs. The surgery was scheduled for a Monday. On the Friday before the surgery, they did one last echo to check levels for surgical planning and they found that her pulmonary valve was actually doing the job the surgery was going to do and she didn’t need the surgery!!!! 😳🤗 I wrote a whole post about it over a year ago if you want to somehow scroll through the abyss of posts, but it was a miraculous and clear answer to prayer and another example of how Jesus has had his hand on these girls. All along we have continued to pray that God would close the hole in her heart and allow her to avoid major heart surgery.

Until this point, there has been no indication that the hole was changing or closing at all. If confirmed that it is a little smaller, this gives us reason to delay her surgery if her body continues to function well, in hope that it may close up more and we could avoid the surgery entirely. We don’t know if that’s what God has planned, but we believe he can and we are praying he will. Please pray with us!

Susannah and Elizabeth are both doing great! They are both gaining weight well these days, keeping feeds down for the most part and getting to be more fun and interactive each day. They are both making progress towards walking, are jabbering constantly, and have figured out how to make their opinions clearly known. They love their brothers and sister and love doing big kid things (going on bike rides in the stroller, crawling on trampoline, swinging, etc.). It’s more obvious that they understand what we are saying and fun to see them respond. Although neither girl is saying mama yet and it’s really starting to hurt my feelings. I get called some derivation of “da-da” 🙄.

We’re so thankful for this community and how you’ve supported us and prayed for our girls along the way. It’s amazing to think about how far the Lord has brought these girls and we’re so thankful to have you share in our joy.

We have created this page to allow those interested to follow along with the story of our daughters,

Photos from Castle Conjoined Twins's post 12/12/2022

Yesterday was the one year anniversary from the separation of the twins! It’s insane to think about that. In some ways it feels like there’s no possible way it’s already been a year, and in other ways it feels like it’s been an eternity. It has been quite a journey, with lots of twists and turns and unknowns and surprises…with I’m sure more to come.

However, from the beginning, the primary question has been, “Can they be separated and live healthy separate lives?” And we are ever so thankful that the Lord looked on us in mercy and gave the most unlikely of answers by saying YES.

Yesterday we remembered that in great detail and celebrated with our family and our dear friends, telling story after story of the Lord’s faithfulness to us. It’s strange to say, but it’s actually sometimes hard to remember what life was like with them together. But we never want to forget all that the Lord has done and so we are going to just be content sitting here for a while, remembering and rejoicing, with full and thankful hearts.

Photos from Castle Conjoined Twins's post 12/08/2022

Susannah was discharged today, praise the Lord! So thankful to have all our crazy crew under one roof again. Now we pray everything continues to heal and we don’t have to return to the hospital anytime soon. Since we’re back to the ng tube for Susannah (gtube was removed) we are praying we can transition to food before she reverts back to having an oral aversion from the tube being down her nose and in her throat. We have a great team but we have our work cut out for us. Susannah is a stubborn thing and if she doesn’t want to do something she doesn’t. Praying her desire and eating skills improve drastically and we can transition to 100% eating by mouth in the coming months.

12/07/2022

We’ve watched all the Daniel Tiger we can stand…hopefully we’re going home today. Waiting for one last feed to finish and stay in/down then hopefully we can go HOME!

12/05/2022

We’re trying eating again today to see if Susannah’s stomach is healed. Please pray it goes well and we can make some forward progress. We’re all getting weary.

Photos from Castle Conjoined Twins's post 12/01/2022

Well, our plans keep changing, and while the prolonged timeline in the hospital is taking it’s toll on our family, we are in support of the changes and hopefully that we will make progress. Susannah is still too sick for the team to feel comfortable moving ahead with anesthesia and we continue to hope for a way to avoid this complicated procedure, so we will be giving her a few days for her stomach to heal and then we will attempt feeding her through the ng tube in her nose. We are hopeful that by Monday her stomach will be healed enough to start receiving nutrition in this way again. Please pray for healing so that her stomach can handle food AND for ultimately getting that food by mouth. All of these complications have come from her not being able to eat normally and we are praying that we can transition to that quickly once she’s better and avoid further complications.
Thank you for supporting our family in prayer. Between the hospital and flu we’re certainly struggling, but we do not feel abandoned or forgotten. We’re increasingly thankful for our amazing community, family and friends.

We are hoping that the next several days will offer increased healing for Susannah’s stomach, as well as for the rest of our family’s bodies. Please join us in praying that this will allow us to be discharged at the start of next week. Thanks again!

Photos from Castle Conjoined Twins's post 11/30/2022

Well, it was another challenging day in the hospital. Unfortunately, the team did not feel comfortable moving forward with the procedure today because Susannah is too sick from the viruses that she is currently fighting. The procedure will require anesthesia, which is typically not possible with too much congestion and cold-like symptoms. They’ve tentatively bumped the procedure to Thursday and will reevaluate at that point.

Since we were hoping that this would have happened Monday, she has only been on IV fluids since Saturday, and so they decided to do an increased form of nutritional feeding today while still holding off on putting in a central line and putting her on TPN again. Also, they tried some small amounts of Pedialyte through her NG, but that quickly leaked out of her G-tube site again.

This ended up leading us to make the decision to completely pull her G-tube since it has not seemed to work for her very well. This was a difficult decision and leaves us only with the option of feeding through a tube going down her nose again. However, we are of the opinion that her abdominal area has too much scar tissue that does not seem to be suited well for a G-tube. Now, we will wait for that to heal up completely, as well as her other wound site before we can begin to feed the stomach again. This puts a lot of pressure on the procedure for Thursday, because if they can’t place the tube in her intestines, we will likely have to put in a central line and feed her through TPN until her stomach is healed.

(If none of this makes sense, don’t feel bad, it’s a lot of medical jargon and hard to track with.)

Bottom line- we are in a challenging situation that has no easy and no quick (or certain answers). We will be here through this week at minimum and are both nervous about the risks of the NJ procedure on Thursday, but also stuck with that as our current best option. We aren’t thrilled about any of this and feel like we keep digging deeper holes and are trying to find the way out. On top of this, the same viruses are making their way through the rest of the family (especially poor Elizabeth) and has completely wiped Stephanie out for the past two days.

In all of this, there is much we are thankful for:

-AMAZING family (especially moms, Stephanie’s mom being the star this week), who help us carry an otherwise unsustainable load
-AMAZING community- our friends have literally held us up for the past two years. Period. We would be dead a long time ago without them. The meals and rides and laundry and love is beyond our belief. Truly. I feel like Moses in Ex 17 when Aaron and Hur held up his tired hands to win the battle. Or the paralytic in Mark 2 whose friends carried him to Jesus and cut a hole in the roof to get him healed. I know our friends have gotta be tired because they’ve walked every step of this with us, holding us up.
-AMAZING medical staff that continues to care for our girls (and us) and bears with our many questions and concerns. These girls would be in trouble without such an amazingly gifted and kind medical team.
-Even in the midst of our trials, the Lord gives us what we need. Every day. Sometimes, it seems, just barely. But he always has.
-He’s brought us and these girls this far, despite all the odds and obstacles. We have 2 separate, generally healthy girls with an overall good trajectory for life and health.
-The hope of the Gospel means that there’s more than this present suffering and this mortal life. We have the hope of eternity because of Jesus, and that gives hope in this present time.

I could keep going on. We want to remind ourselves of all that God has done for us when we feel overwhelmed by our current struggles. We want to remember God’s faithfulness and plead for him to show us his power and deliverance again.

Thanks for joining us in that prayer and walking through this crazy journey with us.

11/29/2022

Hey everyone thanks so much for praying. This afternoon ended up being a pretty discouraging turn to the day. Long story short, they weren’t successful in placing the feeding tube in her intestines. They tried the simplest way today, but since her intestines are so anatomically complex, they couldn’t get it to work. The current plan is to try a more involved way next, but that can’t happen until tomorrow, time TBD. This way seems to have a little more risk involved, so our main prayer continues to be that none of those unintended outcomes happen.

The good news is that there doesn’t appear that there are any other ill effects from today’s attempt so far other than a lot of discouragement and wondering whether tomorrow will work either. We continue to be faced with the fact that we are not in control. Instead of that turning us to fear (which is so easy and natural!), we are asking Jesus to turn it towards faith, knowing that he IS in control and that he loves us. Easier said than done, but that’s the constant cycle and what we would also ask you to pray for us. We have our plans, but as always, it’s the Lord’s plans that will prevail, and he has always proven faithful.

Thanks for the continual prayers. Team Castle is feeling low at the end of this day, but hanging on to hope that tomorrow’s procedure will have a better outcome, and that there are new mercies every morning.

Photos from Castle Conjoined Twins's post 11/28/2022

Hey friends! I hope that everyone had an awesome Thanksgiving. If it was anything like ours, it was a huge confusing, messy, glorious mixture of thankful hearts, tired bodies and chaos.

We wanted to send a quick update because things continue to fluctuate for us. Though we had a great time with family in North Carolina, as soon as we came back to Birmingham, we had to head back to the hospital. Both girls actually went to the ER yesterday for separate issues. Fortunately, Elizabeth passed multiple tests and was doing well enough to be released the same day. However, Susannah was readmitted for more complications with her leaking G-tube and wound.

We are actually about to go into a procedure within the next 30 minutes that will attempt to remedy the problem. They are going to try to place a feeding tube down into her intestines so that her stomach will have time to heal. Normally, this isn’t a complex procedure, but we have learned that everything has the potential to be complex with our girls. For this particular procedure, if things were to not go well, it could become very problematic very quickly, so we are praying for a very simple and smooth procedure to place the feeding tube in her intestines. Please join us in praying about this. If all goes well, we are hoping that we will be able to be discharged much sooner than last time and can heal at home. Thank you again for your prayers!

Photos from Castle Conjoined Twins's post 11/23/2022

Friends, I am so unbelievably happy to report that according to the Lord‘s great mercy on us, we were discharged from the hospital last night! This two week stay has been a VERY hard one for us- thank you from the bottom of our hearts to all of you for your prayers and meals and texts and messages and support. There were a few very particular points in this journey where there was no clear or good answer to the medical challenges we were faced with, and the Lord answered our prayers by providing a way where we did not see a way. Sometimes waiting is the hardest thing to do but the Lord used the waiting to heal the hole in Susannah’s stomach and allow her gtube site to close some as well. We’re still feeding her through the NG tube and giving her Gtube a break. Hopefully it will continue to heal and we will be able to transition back to it soon.

Susannah is thrilled to be home! She has been walking around, getting into everything, and giving us the biggest and cheesiest toothy grins. It’s great to have our happy girl back. The walls of the hospital room were closing in and she was starting to get very cranky, opinionated, demanding, and restless. Which was making us caregivers all of the same things 😂.

As we have been reflecting on this round of challenges during this hospital stay, it’s been a lot to process. This one was scarier with more complex medical challenges than we have faced in some of our recent hospital visits. That introduced a whole lot of fear and big picture unknowns. But also, it was far more challenging to sustain the constant balance between the other four kids at home (and at school and sports and every other “normal” need) versus being with Susannah at all times at the hospital and advocating for her. In addition, it definitely brought back some PTSD and difficult memories and feelings from our year in Philadelphia. It was easy to believe that we were going backwards and like there was no way out and that it would never end. The combination of all of these factors, and others, really pushed us to our limit.
Yet, just as he always has, the Lord met us in it. And actually showed us that we were well past our limits and the only way we have survived this far, and the only way we could go forward was through his supernatural strength. He also used some faithful friends to remind us of what the Bible says are the benefits of trials and how to view it as God’s lovingkindness and not a punishment to be endured.

In addition to the practical assistance from our AMAZING mothers who continue to give themselves, and our amazing community who surround us with meals and coffee and carpooling and other practical needs, we are SO thankful for Christian community and God’s Spirit who point us back to truth. We don’t pretend that it’s easy to understand or engage in suffering, yet it’s something that the Lord continues to bring our way. Each time, it’s overwhelming and we are reminded of how desperate we are for him to rescue. A few passages that have really challenged and encouraged us in this particular time are:

-James 1:2-8
-Romans 5:3-5
-Romans 8:18-28
-2 Corinthians 1:3-5
-Numbers 6:24-26
-Psalm 121

We aren’t naïve enough to think that this will be our last time in the hospital or our last time questioning what good the Lord intends for us in it. But we are slowly learning to rely more on him and to trust him more each time. We continue to be unbelievably thankful for all of incredible the support that you all offer, so thank you!

Psalm 121:1-8 I lift up my eyes to the hills. From where does my help come? My help comes from the LORD, who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. Behold, he | English Standard Version 2016... 11/18/2022

Psalm 121:1-8 I lift up my eyes to the hills. From where does my help come? My help comes from the LORD, who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. Behold, he | English Standard Version 2016...

Unfortunately, Susannah’s gtube started leaking soon after feeds started. We don’t know if the “wound” is leaking but the fact that the gtube site was is an indication she’s not ready.
We’re disappointed and frustrated and don’t really see a way out of this that we feel okay about. Thankfully the Lord reminded me of the words we prayed over the girls everyday they were at CHOP and my heart was encouraged. Our prayer is the same.

“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. Behold, he who keeps Israel will neither slumber nor sleep. The Lord is your keeper; the Lord is your shade on your right hand. The sun shall not strike you by day, nor the moon by night. The Lord will keep you from all evil; he will keep your life. The Lord will keep your going out and your coming in from this time forth and forevermore.”
‭‭Psalm‬ ‭121‬

Psalm 121:1-8 I lift up my eyes to the hills. From where does my help come? My help comes from the LORD, who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. Behold, he | English Standard Version 2016... I lift up my eyes to the hills. From where does my help come? My help comes from the LORD, who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. Behold, he

11/17/2022

Good morning friends! Quick update and request for prayer:

The plan is to start pedialyte again this morning and see if it stays in her stomach. PLEASE pray for the hole to be closed and for no more leaking. This is a big step for us today, with a lot hanging on how it goes. We know the Lord holds it all in his hands, so we are praying for mercy, that it will go well! As you can see, this girl is going stir-crazy and wants to be back home with her family! 😂

Photos from Castle Conjoined Twins's post 11/16/2022

I’ve started this update process so many times but before I’m ever able to post something changes and I have to restart. So, here we go…
After several days of giving her stomach a rest Susannah started back feeds today. After a few hours both her gtube site and her “wound” (as we’re calling the scar tissue that was leaking stomach contents) began to leak the pedialyte she was receiving. The surgeon decided to do an EGD to essentially put a camera down her esophagus into her stomach to see if he could identify the issue. He found a small hole in the stomach near the gtube site that is likely from a previous stitch. We’re so thankful the problem was identified! However, none of the options for healing are great—they all have different risks associated with them. We love the surgeon and he was gracious enough to talk with us through all the options and hear out our concerns. We decided to go with the option that is the least invasive but also probably the least likely to work (but the stakes are pretty low so why not?!). Without going into too much medical jargon (that I pretend to understand 🤪) here’s the plan, to the best of my understanding: They switched out her gtube to a different type that will help seal the hole. We’re going to wait a day or two then start small feeds through her NG tube (yes, the one going through her nose that we hoped to be done with) and pray that the combo of the gtube not being messed with and the hole being covered may help keep the formula/pedialyte in her stomach.
Please pray with us that this works and we don’t have to go down other paths that could create more issues. Medicine is kind of a double-edged sword—sometimes it’s necessary but intervention always tends to breed intervention. We knew that going in but now we really KNOW it.
All that to say, please pray that this hole will heal quickly and that the current plan works and no further surgeries or interventions are required. You never can anticipate these sorts of things, and we certainly hadn’t planned on being in the hospital for 2+ weeks. The thought of having to be here longer as we move into Thanksgiving week is pretty disheartening, but we are continuing to remind each other of the truth that the Lord is with us and has not abandoned us for one second of this journey, and he won’t start now. Thanks for your prayers for our hearts to trust in the Lord and to find encouragement and hope in him in the midst of this scary and challenging time.

11/10/2022

Goodness, where do I start? I’m going to do my best to make this make sense but forgive me because I’m confused myself. I brought Susannah to the surgery clinic at children’s of Alabama Tuesday morning because her gtube site was leaking tons and the scar tissue on her abdomen (where her incision from the separation surgery opened) was puffy looking. She was also running a fever on and off so I was concerned there was some type of internal infection. They wanted to admit her since the gtube site was leaking so much and remove her gtube to give her skin some time to heal and close a little. As we have been in the hospital the scar tissue continued to become more inflamed and more swollen, resulting today in that area rupturing and leaking stomach contents. A CT scan was done to determine where it was coming from and it is believed to be leaking through a layer of tissue under the skin around the gtube site over to the area where the scar tissue is. In order to heal this she will need to have a more lengthy hospital stay (1-2 weeks) and will not be able to eat while it heals. In order to keep her healthy she will have to receive nutrition through a picc line (like she received after her separation surgery) and she will have to have a drain in her stomach (an ng tube essentially). Hopefully everything will empty out of her stomach and it will stop producing so much stomach acid and it will heal quickly. We’re pretty discouraged that she will require so many interventions and we will be in the hospital for so long. But, we are also thankful that the issue doesn’t seem too serious or life threatening and that the problem has been identified and there is a plan of action. We covet your prayers as we begin this unforeseen hospitalization and recovery process.
She is currently in the OR for central line (PICC) placement.

'He is working': Birmingham family shares faith in grief after loss of conjoined twins 10/19/2022

'He is working': Birmingham family shares faith in grief after loss of conjoined twins

I’ve been trying for a year and a half to write about this and haven’t quite known what to say. It’s the most bizarre, yet the most God ordained part of the story with our twins. I don’t understand why God wrote it the way He did, but I’m thankful to have gained a friend and have been so encouraged by Lindsay’s faithfulness.
With every post we’ve written and every milestone we’ve reached with our girls we’ve had the Lyons in the forefront of our minds and hearts. We realize Susannah’s and Elizabeth’s lives are rare and not the typical outcome for conjoined twins and we mourn and grieve with them and the other families that have to say bye-for-now to their babies.
I hope you read this as I did, with amazement at how the Lord gives grace to each of us for what He will have us walk through. We don't walk alone.

'He is working': Birmingham family shares faith in grief after loss of conjoined twins After their second child was born, Lindsay Lyon and her husband, Nathan, felt like God was leading them to stay in sleep-deprived “baby mode” and have a

Photos from Castle Conjoined Twins's post 10/14/2022

Two years ago today I woke up and told my mother-in-law I dreamed I was having conjoined twins. An hour or so later, as I was ushered into the ultrasound room, the tech asked me how I was feeling. I told her I dreamed I was having conjoined twins so as long as that wasn’t the case I was feeling pretty good. Dwight looked at me and said, “You didn’t tell me that!”
As she waved the wand over my belly she found two heartbeats. A mix of fear and excitement was my initial reaction. Then she continued to look at the babies and went to get the doctor. All the excitement fizzled. My doctor explained to me that both of the babies were in the same amniotic sac which automatically indicates a high risk pregnancy with the likelihood of one or both babies not surviving. I asked her about the possibility of them being conjoined and she said the chances of that are very very slim. I told her about my dream and asked if that changed my odds at all. She assured me it did not.
Dwight and I left that appointment, drove to the Target parking lot and sobbed. The next 24 hours were undoubtedly the darkest of my life. I felt abandoned by God. I had no hope of these babies surviving. But God gave me a sweet friend to speak truth over me and believe for me. It gave me the courage to believe and the Lord used it to give me a peace that could only come from Him. I didn’t know how it was going to turn out but I knew it was going to be okay and none of it would be a surprise to God.
Looking back I’m amazed at the kindness of the Lord. In His abundant gracious kindness He gave us two precious and perfect baby girls. None of it has been easy. It’s been the hardest thing I’ve ever experienced. I’m still exhausted and grumbling as I climb the stairs at 2am to turn off a feed. But He continues to give me the strength I need each morning. Phil 4:13 has new meaning to me now. 2 years ago I would never have imagined I could hold up under the weight of everything we’ve gone through. But we don’t hold ourselves up, we are empowered through Christ and supported by the Church, giving us the strength to continue on. Praise God for His faithfulness!

Photos from Castle Conjoined Twins's post 10/08/2022

Dwight and I had the privilege of attending and sharing our story at an event last night benefitting Red Mountain Grace. As you might remember, housing was one of the biggest headaches and stressors for our family during our time in Philadelphia. Thankfully, and not surprisingly, the Lord always provided the perfect thing for our family, but we’re so thankful that families coming to Birmingham for medical care have the incredible option of Red Mountain Grace. Providing housing is only the beginning of the “gracious hospitality” they offer. If anyone in the Birmingham area is looking for a tangible way to serve families experiencing a medical crisis RMG has a variety of ways to serve. If anyone is looking for a way to financially invest in a ministry that clearly demonstrates the Gospel this is it. And if you know of anyone who is coming to Birmingham for medical care and in need of housing check out their website.
https://www.redmountaingrace.com/

Also, no big deal 😉, but Susannah had a follow up appointment with ortho this week and her scoliosis has dramatically IMPROVED! We will follow up again in six months but as long as it stays the same or improves we’re looking at NO INTERVENTION at all! Praise God for His continued provision for our girls. We are so thankful! (Pic on left is current, right is from May.)

Photos from Castle Conjoined Twins's post 09/18/2022

Well it has been a busy and tiring week, but we have much to be thankful for! Both girls got G-tubes this Monday, and though it didn’t go quite as smoothly as we had hoped, in the end, things ended up going ok overall. Due to the girls’ extensive scar tissue from their separation surgery, as well as some internal organs in different places than normal, both girls’ surgeries ended up being a little more complex and time consuming. From what we understand, a typical laparoscopic G-tube placement can take as little time as 10 to 15 minutes. Elizabeth’s took two hours and was able to be done laparoscopically, but Susannah‘s took four hours and they had to be more invasive with a sizable incision and place it manually.

There were some tense moments when things took much longer than we anticipated, with little updates throughout. It felt a little reminiscent of some of the past procedures and surgeries they’ve had, and it took us right back to a place of total dependency on the Lord and simply calling out for him to protect and to preserve our girls. Thankfully, the girls had a wonderful, experienced surgeon who handled everything without skipping a beat and was awesome for us and our girls. The nurses, doctors, surgeons, and all the specialist at Children’s of AL here in Birmingham continue to take such good care of us and our girls and we are so thankful for such amazing medical care. It was also so reassuring and comforting every time we would meet or run into a friend or new acquaintance who worked at the hospital and either go to our church or have been praying for our girls overtime. It’s a continual reminder to us of how the Lord has used so many people to lift us up and care for us when we don’t even know. Every time someone says something to us it is such a huge encouragement and so humbling.

We were in the hospital for three days recovering with the girls, which was quite a juggling act, while also trying to care for the three older kids and get them to all the places they need to be. Each hospital visit seems to take more of a toll on them and they struggle having both of us away for that amount of time, but the Lord continues to give us grace and margin, and lots of help from amazing family and friends.

The recovery process is a bit daunting for us right now and seems like it will be a slow and long learning curve. It’s strange to feel like we were very comfortable and proficient with all of the feeding and care details with the girls, only now to have to relearn a new system. Both girls are very sore and temperamental still, which we hear can last for quite some time. Their incisions will heal in the next few weeks, but the actual G-tube placement will not fully heal for eight weeks. During this time, if it gets dislodged or pulled out, it’s an automatic ER visit, with a potential OR surgery to put it back in. We’ve already found that Elizabeth’s bleeds fairly easily when it is bumped at all, so it feels a bit like we are walking on pins and needles as we try to cautiously protect their abdomens. Which is quite hard for very active girls who crawl and climb and squeeze into and over and under everything, as well as having three older siblings who love crossing personal boundaries with hugs and kisses and cuddling and picking up at every possible chance. We are all learning together.

The other important piece of the equation was that while Elizabeth was under anesthesia, the cardiologist was able to do a more in-depth echocardiogram to look at the hole in her heart. We are SO thankful that he has confirmed that her hole is in fact a little smaller! We are so thrilled and so thankful!! This is certainly not enough to change the whole equation yet, but it is hopeful that it may continue to get smaller, and enough to temporarily hold off open heart surgery. They think it’s best to wait and watch it and we will likely do another heart cath down the road to get more data about the hole’s progress. We continue to pray and ask you to join us in praying that the Lord will work yet another miracle in making this hole smaller and smaller, until open-heart surgery is no longer necessary at all! We can’t wait to keep singing the Lord’s praises about what he’s already done and pray for more opportunity to do so.

Overall, we’ve made another good step in the right direction and we are thankful for the Lord‘s care and provision for our family. Thank you for your faithful prayers and encouragement! We simply wouldn’t be at this point without you all!

Videos (show all)

QUICK UPDATE/PRAYER REQUEST::Hey friends! First, this is the video of how the girls responded when they saw each other t...
We just wanted to share this cute video of Susannah and give you a little update, though nothing major has changed. Susa...
Elisabeth was extubated today!! Praise the Lord – this is a huge answer to prayer and step in the right direction. She i...
We are 5 days away from surgery!! Yesterday, Susannah made everyone’s day (especially Dwight Castle’s) by saying “dada” ...
One surprising thing about having conjoined twins has been the support by other families/parents of conjoined twins. The...

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