Newborn Photos

We got Claire's newborn pictures back today!!  These were taken shortly after we came home from the hospital, Claire was 12 days old and about 6.5 pounds.

**photos by MegganJoyPHOTO - www.megganjoy.com

One Month

Time has flown by and, as of yesterday, Claire is one month old! She weighed in today at 7lb 4oz.

Here are some updates from our appointments this week.  

Cardiology: Her VSD (hole in her heart) has not changed since her last echo at birth, we were hoping that it would have started to close up on its own. We will go back again for another echo in 2 months and if it hasn't gotten smaller by the time that she's 5 months old, we will start to talk about surgically closing it at around 6 months.

Swallow Study: Claire is aspirating but there's good news. When she aspirates, she chokes and refuses to eat any more (this means that her body knows what to do!) and we also discovered that when she's laying fully on her side, swaddled tightly (so that she can focus better on coordinating her swallowing/breathing), and with good head/neck support, she doesn't seem to aspirate! So I have chosen to feed her exclusively this way so that we don't have to add thickener to the breast milk which could further aggravate her Hirschprung's Disease.

Feeding: There is still a concern about weight gain so they've asked me to limit trying to nurse to 10 minutes per feeding so that Claire still has enough energy left to finish her bottle and to get all of the calories that she needs. She just isn't yet able to breastfeed productively enough but my hope is that, with practice and as she gets stronger, she will be able to. She leaks A LOT of breastmilk out of the side of her mouth while she's eating as well (breast or bottle) which the therapist said is also due to her poor muscle tone, Claire must not have heard the part about it being liquid gold ;).

Tummy: Claire is still pooping pretty continuously with bouts of diarrhea/mucous, her surgeon suggested leaving her naked on a blanket as much as we can to help prevent diaper rash and so that it isn't pressed against her skin all of the time. We change her very often but it doesn't stop coming out so as soon as we change her, she is sitting in it again. Her surgeon warned us that their poop can shoot across the room and I saw firsthand what she meant all over the front of me yesterday... I guess it was only a matter of time!

We apologize that we haven't had time to respond to all of your messages and requests to come and visit. For those who are looking for an excuse to come and see us, a friend has set up a meal train: https://mealtrain.com/1kekq but you absolutely don't need an excuse, we can't wait for all of you to meet Claire and are so thankful for your continued support, encouragement and prayers <3!

Only Good News!

We have BIG news today!! Claire hasn't taken a bottle since 1pm because .... she nursed tonight! She latched for the first time yesterday and we had our first successful breastfeeding tonight. It took nearly two and a half hours because she has trouble with the coordination of suck/swallow/breathe and she has a high pallet that makes it hard for her to get a good latch but she did it!! I could not be happier, we've been working so hard for this. I have no idea if she got enough and this further complicates our plan to get her to gain weight but it's such a big step! Now I'm just hoping that we get good news at her swallow study on Wednesday and that she continues to gain weight so that we can continue to keep trying.

Our appointments today went well. Claire gained 0.8oz since Monday which is under our goal of 0.5-1.0oz per day but she's going in the right direction which is great! She's on probiotics for the increased bacteria in her colon/intestines and her dilations are going so well that we were able to skip a size and go up two sizes -- I'm not convinced this is good news, it looks so big and she hates it :( but it means less time that we will have to do them overall.

We all really needed a day like today!  Forward progress <3.

My Favorite Resources [Thus Far]

As promised, below are some of my favorite resources:

Public Awareness Guidelines: http://www.ndsccenter.org/resources/new-and-expectant-parents/language-guidelines/

General Down Syndrome Facts: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/

Our checklist that we're working through for Claire this month, I stopped doing the check marks but we're almost done!:

I find this list very helpful! Because we have so many different specialists, it helps to make sure that nothing has gotten overlooked. They gave us a checklist for every stage and it's nice to know what's coming up in the next few months/years as well.

Impacts on Family Life [I found these very encouraging!]:
"There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children's future, and they perceive [all of] their children to have less difficult temperaments. A major study also found that divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent in the population group with non-disabled children."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071600/

"[Siblings of a child with Down syndrome] often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy."
http://www.ndss.org/Resources/Caring-for-Your-Family/

And there are a lot of articles circulating the internet about what to say/not say to someone with a special needs child or what you can do to help. What I'm finding is that just like children with Down syndrome are all so very different, so is what we as parents find helpful [and not helpful] and I haven't been able to find one that's a good fit for how we specifically feel so here are a few of our thoughts:

Things that we do find helpful:

Words of support. We are worried about all of the medical complications that Claire is experiencing and may experience in the future and we are concerned about how she will be accepted, especially when she starts school. Letting us know that you're here for us and that we're surrounded by a network of family and friends who will come alongside us as we advocate for our baby girl means the world and is what we need the most.

Acknowledgement and encouragement. Because of Claire's special feeding needs, all of her appointments, the extra care/routines, the giant stack of paperwork and voicemails that I am trying to work through (she gets more mail and phone calls than we do!), and finding time to make sure that Anna and Levi are getting the attention they need, it is taking time for me to figure out how to get through daily tasks, chores, and errands so it's easy to feel discouraged when things aren't getting done - reminders that I'm not alone are helpful. Just like for any mom, it's nice to be reminded that feeding the kids peanut butter and jelly for every meal, having a messy house and a brown lawn, and declining invitations to participate in events/play dates is temporary and okay!

Things that have been said to us that we did not find helpful: 

"I'm Sorry." We aren't sorry, in fact, we are excited about the newest addition to our family and we would love to hear you say "Congratulations!" 

We don't want to hear about your "Down syndrome scare" [especially in front of the kids]. All anyone has to do is hold her in their arms for one minute and I feel very strongly that they'll see that she is perfect and I wouldn't change a thing.

Please don't ask us if this means we're done having kids or tell us that we "really should be done now." This implies that this is somehow our fault. We'd prefer to just know that you trust us to make the best possible decisions for our family and that whatever we decide, we have support.

And these ones I did find on another blog but related to:

"Please don't try to fix it. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link." Advice isn't helpful, our heads are already spinning with way more ideas of things to try than we can handle and we've spent countless hours researching everything that we can think of.

"Stay connected. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival."

Thank you for taking the time to learn a little more about Claire, Down syndrome, and what we're experiencing.  I will try to find the time to share more as it comes along. We appreciate you all very much, thank you for taking the time to learn a little more about "our journey" as we learn too.

Feeding and GI Updates

We had another long day at Marybridge today and didn't get home until 6:30pm. I can't help but be so thankful for the incredible doctors on Claire's team.  I truly believe that we've somehow scored the best ones in every clinic, they've all been fantastic and have invested so much time in getting to know us and our concerns, how we feel about all of their suggestions, and in making sure that we fully understand everything.

I spent the last four days trying what they call "aggressive feeding" meaning that I spent the entire weekend focused on not much else but getting Claire to eat. I did everything I could to get her to eat as much as I could every 2 hours day and night and she DID gain weight!! I was so happy that I cried when I saw the numbers on the scale today, this means that we can hold off on talking about supplementing or feeding tubes as long as we can keep it up!

We spent almost four full hours today just working on Claire's eating and trying to figure out why she isn't wanting to eat. What we discovered is that she has reflux so bad that it goes all the way up into her nose (the doctor could hear it just with a stethoscope) so as much as I was trying not to add another medication to our routine, we are starting reflux medications to both protect her esophagus/nasal passages and to hopefully encourage her to want to eat on her own. They still believe that she is also aspirating and we had success with thickening breast milk today, however, the thickener causes complications for her Hirschprung's Disease so we have decided to hold off using the thickener on a regular basis until her swallow study next Wednesday (to see how bad she is aspirating) so that we can better determine which is the lesser of the evils. In the meantime, we have been given yet another feeding position to try that will hopefully help us get by until the swallow study. Finally, her low muscle tone causes her to get fatigued easily while eating so even when we do get her wanting to eat she often just gets too exhausted and her sucking becomes unproductive or she chokes and then she refuses to eat any more so the feeding therapist worked with me today on ways that I can help take as much "work" out of eating for her as possible so that she can eat a little more productively and for a longer period of time.

And our final piece of new news today, her colon/intestines are acting up a little (diarrhea and bacterial growth) so we're starting probiotics to hopefully help cut that out before it turns into an infection and we need antibiotics, this is a recurring thing that happens with Hirschprung's Disease so staying on top of it is very important.

We have the next two days "off" of appointments (yay!) and then we'll be back up there again on Thursday for more. Until then, we'll be enjoying the sunshine and being together!

First Week at Home and Other Updates

We've officially been home for one week! Our little princess's short 18 days with us have been a whirlwind of emotions including a joy deeper than we've ever experienced. We have learned so much and been truly touched by our family and friends coming together to surround us with love and support.

Overall, Claire is a very happy baby and her smile melts my heart! She loves to be swaddled, held, and she would be a fantastic sleeper if we didn't still have to wake her every 2-3 hours to try to get her to eat and gain weight. Anna and Levi adore her. Anna is always trying to dress her, put bows on her head, and help take care of her and Levi stops what he's doing to kiss her almost constantly. She is a perfect fit for this crazy family!

A rough day today and she's still smiling!

Today we went to Marybridge for an appointment with Claire's surgeon. She taught me how to do her anal dilations, Claire and I both hate them but they are important for preventing stricture because of her scar tissue. We will continue to see her surgeon weekly for a while so that she can measure the progress of the dilations and increase the size as needed until Claire is back to being where a typical baby her size should be (she estimates this to take about 6-7 months). I shouldn't have came home and googled because it says that the dilations cause small tears :(. I will definitely be praying for strength for us to get through them, my poor baby!

Claire's weight check today wasn't what we were hoping for either, she continues to lose weight (6lb 13oz today) so we ended up also seeing a dietician and GI specialist as well. That's the good thing about Marybridge, everything is in one place and the doctors are amazing! Our surgeon let them know she was concerned about Claire's weight gain and there were 3 other specialists who made time to come see us before we left the exam room. I will have to remember to plan on our appointments taking a lot longer than expected, we were there for almost 3 hours after we finally finished with everything (and we received 3 voicemails from other Marybridge clinics just in the time that we were there)! The working theory right now is that she's most likely aspirating. She has to work very hard to eat and it's obvious that she's uncomfortable eating (watery and red puffy eyes, choking, gagging) so we are having a hard time motivating her to eat. We have appointments now to see both the speech therapist (for feeding therapy) and GI specialist again on Monday to hopefully make some progress. We already have 4-5 appointments per week between all of the clinics for the next couple of weeks so they're definitely keeping us busy!

Being out of the house for any length of time is proving tricky because of our pumping/eating routine. It takes Claire quite a long time to eat and I have to be fully focused on how I'm holding her (supporting her neck, head and jaw with both hands) and how she's swallowing - and it's definitely harder when the big kids don't want to cooperate and we're not at home - I'm sure we'll get more of a routine down in time and as she gets stronger but for now we are taking it one day at a time and celebrating every little bit of progress!

Prayer Requests:
-That Claire begins to gain weight.
-That the swallow study provides clear answers so that we can start to feed her more effectively and with less discomfort, I would still love to breastfeed but that is looking like more and more of a stretch. I would still love continued prayer that maybe someday it would be a possibility.
-That her dilations go as smoothly and painlessly as possible - for both baby and mommy.

Needs:
-With Claire's appointments (length and content) it is important that I can give her and the specialists my full attention, especially for the therapy appointments, so we are looking for help with childcare for Anna and Levi this summer. If you have any recommendations, please let us know. I would love to have a couple so that we have backups with so many upcoming appointments on varying days and times. It is my hope that we are able to figure out a more consistent routine once school starts and we can schedule most of our appointments when the "big kids" are at school.

And, as always, thank you for taking the time to read our updates and to keep us in your thoughts and prayers. We appreciate each and every one of you.

First Day at Home

The kids and I started the day with a trip to the bank, gas station, and mall for some special bottles for Claire. She didn't enjoy the car or stroller very much but we made it and got what we needed (and I ordered grocery delivery for the first time because there was no way she was going to last for that too but we did try!). She is adjusting well to being home and seems to be loving all of the attention now that we get to cuddle her without all of the tubes and cords. She was so worn out from our outing this morning that she slept all afternoon!

We have been trying to nurse at each feeding, she latches well but struggles with the coordination and strength to breastfeed so she isn't able to get anything yet. Our hope is that, with consistency in trying, she will eventually be able to do it! Since she's only on her third day of eating, we are still using colostrum but once we get past that, we won't have to thaw/warm each bottle (and we'll be able to leave the house for more than an hour at a time)! It takes her anywhere from 30-60 minutes to eat one ounce from the bottle, and she has to be held in a very specific way to support both her neck and jaw, so feeding her outside of the house isn't realistic yet but again, she will only get better with more practice and as she gets bigger. We have another appointment with the speech therapist for more feeding therapy to help her along as well. We are all just so happy to have her here in our arms <3! It's hard to believe that she was fighting for her life just 10 days ago. 

Home!

Late last night Claire's numbers all looked great and we were able to take her off of all of her supplemental nutrition and to remove her PICC line very much ahead of schedule. She did great with feedings through the night, with keeping up her blood sugar and weight, and she's stooling well so they decided to let us come HOME today! I still can't believe it, it all happened so fast.  They had estimated 2-3 weeks for her recovery (because of the additional complications with her heart and Down syndrome), but she set the pace, and we're home just 5 days post-surgery (10 days in the NICU). They keep telling us that Claire is remarkable but we knew that already <3. We are still adjusting to our "new" ways of doing things but she is thriving and we are so, so happy! We do have lots and lots of follow up appointments in order to make sure that she continues to do well but we'll take it.

The kids were more than thrilled to have her home and they can hardly leave her alone. Anna hasn't stopped hugging and kissing her since we got here and Levi has made himself the "quiet police." So much love!

FIVE of us headed home!

Neighborhood welcoming committee!

Home at last!

Recovery: Day #5

Claire is blowing the socks off of everyone! Because she has both Hirschprung's Disease and Down syndrome, she was expected to take longer to recover from the surgery as well as significantly longer to learn how to eat ... this has not been the case.  She did so well with eating yesterday that they have allowed her to eat completely on-demand today and she is already almost fully weaned off of her supplemental IV nutrition! Everyone is amazed at how fast she is progressing. Because she is now eating and burning calories, she was also able to maintain her body temperature on her own today and so we were able to move her from the warmer to a CRIB! So many changes in the last two days.

The speech therapist also came by today to do some feeding therapy. Because of her low muscle tone, I had to learn a special way to hold/feed her so that she doesn't aspirate while eating (in a regular eating position, she is unable to swallow properly due to her tone and coordination). It is taking some getting used to but she has done great! We are still not sure if I will be able to breastfeed her without pumping/bottle feeding because of the very specific position that she has to eat in but we are taking things one day at a time and the important thing is, she is EATING [and pooping]! It is beginning to look like we may get to go home this week which is a significant improvement from the original estimate of 2-3 weeks post-surgery. We could not be happier or more proud of our sweet girl!

Labor, Delivery, and the First 24 Hours

On our way to the hospital!

I thought that we would backtrack a little so that you could all hear the story from the beginning.

If there's anything that we've learned about Claire, it's that she loves to surprise us! I went into labor almost exactly 24 hours before our scheduled induction.  We were admitted to Labor and Delivery Saturday evening and Claire was born Sunday, June 22nd at 12:44pm. She weighed 6lbs 8.8oz and was 19 1/4 inches long. We had another successful drug-free VBAC (Vaginal Birth After Cesarean).

Because of the hole in her heart and low heart rate, the NICU staff was present at her delivery and they took her to evaluate her in the warmer before I was able to hold her just to make sure that she was stable. She was stable and we were able to hold and enjoy her almost right away!!

The doctor told us within minutes after she was born of their suspicions for Down syndrome, Justin gave my hand a quick squeeze and in came Anna and Levi with some of our family. We spent precious moments introducing her to them and I told the kids that we'd all be home the next day as I kissed them goodbye. 

First bath

This brings me to the first [of many things] that we were about to learn about Down syndrome: People with Down Syndrome have an increased risk for other medical conditions including, but not limited to; heart, GI, respiratory, hearing, renal, vision, and thyroid. I had no idea all of the testing that would have to be done before we could safely take our sweet girl home.

They moved us to our postpartum room and we spent the first night enjoying holding our sweet girl. We had a few extra visits from specialists and a pediatrician to begin to evaluate her and to provide us with more information about Down syndrome. Everything seemed to be okay other than that the echocardiogram showed an additional hole in her heart (she has a total of 2) and a valve that hasn't closed.  

We were very concerned, however, that in her entire first 24 hours, even with a visit from the lactation consultant, we couldn't get her awake enough to eat and she kept spitting up green bile.  She slept propped up on her side during the night so that she wouldn't choke and we didn't sleep much at all because we were so worried.  The following morning she was spitting up very green bile in such great volumes (out of both her nose and mouth) and her stomach had become distended that they took her for an x-ray. The x-ray came back concerning so they quickly moved us to the NICU for further evaluation. While they were admitting her and getting her hooked up to the monitors, a surgeon [yes, a surgeon!!] came in to talk to us. She had already looked at Claire's x-rays and wanted to go with her to watch a contrast x-ray so that she could get a better idea of what was causing Claire's bowel obstruction. Almost as soon as they had brought Claire back to the room, the surgeon was back to talk to us, she was pretty confident that Claire has Hirschprung's disease. We began bowel irrigations and put a tube into Claire's mouth to suction out all of her stomach contents. Because she wasn't eating, Claire wasn't able to maintain her body temperature so she was also placed under a warmer and a PICC line was placed so that she could get nutrition.  We spent the next couple of days keeping her stable and as comfortable as possible and waiting for the biopsy results to come back so that we could proceed with her surgery and getting her better.    

First day in the NICU

We may not ever understand why our little angel had to undergo so much in her first days of life but I can say that we have been so amazed at how everything along the way in regard to her treatment has worked out perfectly in our favor, one of our nurses said that we should buy a lotto ticket because we keep hitting the "jackpot."  God is good... all the time!