It’s been quite a while since I have last written an update both regarding my health and also Nasir’s diagnosis of autism. As far as my health goes, I feel I’m in the best place I have been in years. I have occasional setbacks, but over-all I have been feeling very good. I’ve been following up with doctors, continuing my biologic medication, and trying to practice a healthier lifestyle. I have been going to the fitness center several days a week. The gym is two-fold. One, for my physical and mental health, and secondly for Nasir. He is socializing with his peers more and more, and the gym’s childcare services provide an opportunity for him to do just that.
Where we started
Since I last blogged about this, we were in the middle of a whirlwind of overwhelming hits coming at us from every direction. Nas wasn’t meeting his appropriate age mile markers. I was battling my own health issues with my Crohn’s disease and mental health, the most difficult being post-partum depression and anxiety. You can read more here.
Soon after the doctors told us Nasir was on the Autism Spectrum, we were thrust into a new normal of therapies of all kinds. Speech, behavioral, occupational, and more. Nasir was nearly two years old and other than making some babble sounds, he didn’t say actual words, mimic our sounds, answer or respond to his name, he wouldn’t make eye contact often, he played independently from other children (other kids didn’t interest him much), he obsessively watched or paid attention to only certain things like specific TV shows that he watched over and over. We would discount or rationalize them, or chalk it up to other things – “maybe it’s his hearing” or “he was born a little early, he’s just a little delayed.”
What came next
Getting the diagnosis of ASD was bittersweet for our family. It’s one of the most overwhelming things to process, but we also have a solid reason for the why’s we were experiencing. We could finally move forward with all the wonderful resources our community has to offer.
Where we are now
Nasir is in therapy nearly every day. He is now talking non-stop. He has lots to talk about and share. He has big opinions and now that he has discovered his voice, he is eager to discover new words, things and experiences. He loves adventure, to play, and to build. He swims and loves the park. He has friends and learns a lot from parallel play. He recently started dancing and his love of music has always been strong. Magna-tiles have opened up his imagination, and he is a master at building castles. He sings, counts, says the alphabet, and identifies so many objects we see throughout the day. He loves his family. Mama and Daddy are his favorite people followed by his grandparents, all his aunties, uncles, cousins and his amazing therapists. He loves reading books, and presently, The Mickey Mouse Clubhouse is his favorite TV show. (We shout “OH TOODLES” a dozen times a day!)
We have come SO FAR in a just under a year. The therapies have provided Nate and I small windows in our day to have a break. Despite Nasir’s achievements, he is still demonstrating behavior that do not allow us many moments for breaks. He’s still a wild toddler, of course, but he also never sits still, his attention span is very short. We are having less meltdowns, but they still occur daily. My entire life is devoted to this sweet boy and facing all the challenges that come our way.
When I do get a chance, I’m trying to get back into my crochet. I feel that spark coming back. I feel several sparks returning. I’m beginning to feel more like myself. Therapy has helped – my own therapy. It’s been life-changing. Little by little, I have been able to piece myself back together. I’m stronger than I have been in a long time. I can do hard things, and I’m doing them every day. If Nas is doing hard things, then I need to continue to set an example and do the same. We continue to take baby steps toward doing more crochet projects and hopefully soon, things will be back into full-swing.
I am currently working on one crochet project per month, and I have a goal of doing 3 to 4 projects per month like I used to do. At the time of creating this blog post, I am anticipating planning out our Halloween costumes for the family this year. You know we have to go all out like every year! Can’t wait to share what we have up our sleeve in 2022!
It has been 4 weeks since Nasir was born. He came into this world a true miracle and is perfect in every way. I am overjoyed that he is here, happy, healthy and growing like crazy. His due date was June 30th and throughout my high-risk pregnancy, it was understood that with so many health issues, surgeries, and not having a rectum or anus, the probability for me to deliver him in a traditional birth was going to be out of the question. I was told by not one, two, or three doctors but EVERY doctor on the team, that it would be the safest for me to have him via c-section and to do it a week before his due date. Although this didn’t coincide with my idea of the “ideal birth plan,” I ONLY cared about having a safe and healthy delivery for me and safe birth for him. It doesn’t matter how our babies enter the world, it only matters that they arrive safely in our arms!
High Risk Pregnancy
Throughout my pregnancy, many of you are aware that I had numerous issues not only with my Crohn’s disease but also that I had to cease all my medications that keep my disease in remission. I also had severe Symphysis Pubis Dysfunction, I had problems with tearing my adhesions and scar tissue from previous abdominal surgeries, I have a Septate Uterus, I had terrible sciatica, I had anemia, I lacked the nutritional support for myself and Nas because I don’t have my large intestine or parts of my small intestine, and I had a herniated ostomy that prolapsed. Because my anatomy isn’t like most, my intestine pooled to one side of my body and my baby was restricting the digestive flow. I also had the general issues of constant heartburn and swelling like a lot of moms-to-be deal with. I tried to be grateful, thankful, happy, joyful, and appreciative for this miracle; and I was. However, I won’t sugar-coat it, I was freaking miserable in my body. I hurt every single day and probably complained to Nate or my mom incessantly EVERY. SINGLE. DAY. all while keeping a smile on my face and forging ahead because I kept telling myself that if this is the sacrifice I have to make to have him here, then I can do this! It was only temporary. My “this too shall pass” mantra was on repeat every moment of every day. I was miserable. But, just to be clear, I would do it ALL over in a heartbeat for this outcome. Nasir is magical…
Things weren’t going well
Over a month before I was to deliver, I was rushed by ambulance from the hospital in La Crosse, Wisconsin up to Mayo Clinic Hospital in Rochester, Minnesota because I had a severe infection and could not keep anything in. I needed IV support and to be monitored because they thought our baby would make an appearance MUCH earlier than we thought. I was so scared. I was alone in the ambulance with the lights and sirens going as we rushed down the highway. I knew Nate was somewhere in a car behind me, my mom also, but being alone and not knowing what would happen was terrifying.
Thankfully, the doctors were able to hold off delivering Nas and just treat the infection. I was hospitalized for about a week before going home, but we were advised that due to the complicated nature of my pregnancy, I would be on “bed rest” (which couldn’t actually be bed rest because I have a history of forming blood clots), so I took it really easy. The doctors recommended I move to temporary housing in Rochester to be closer to the hospital, and I was there a few days before things began to decline again. Read more about our Temporary Transition here.
We couldn’t wait any longer
Although I was advised to hold off on delivering Nasir for as long as possible to give him the best chance for development, the doctors also understood the gravity of my health situation and knew it would be dangerous to wait too long. Not long after my hospitalization, I was still having problems and was not doing well. I woke up on the Wednesday before he was born feeling terrible. My entire body felt like I had one big bruise covering every inch of my skin. EVERYTHING hurt. The slightest touch hurt, and I was swelling up like a balloon. I called, and the doctors said to meet them up at the hospital. My mom took me in because Nate was at work. After a short examination, the doctors suspected that my infection set off a full body flare of my Crohn’s disease. They couldn’t wait any longer. If they didn’t deliver him soon, I might have gone into labor and could have potentially faced a threatening situation where it would be too late to assemble the ENTIRE team of doctors necessary to bring Nasir into this world and keep me safe in the process. Not only was my disease creating a serious health risk, the baby was breech. There was no time left. It would be way too perilous to wait and risk going into labor and a vaginal delivery. Delivery was scheduled immediately for next morning.
I crumbled under the weight of everything and started to cry.
I wanted more time for him to develop. I was scared for him, what if something went wrong, I was worried about the risks, and the surgery and, and, and….and then I took a deep breath.
I called Nate at work.
“You need to come to Rochester right now. They are going to deliver our baby tomorrow morning…”
“Are you serious? Is this for real?”
“Yes, just please come as soon as you can. I need you…”
I don’t know if Nate could even think after that phone call, if he could even concentrate enough to finish his work for the day, or if he was on autopilot all the way up to Rochester. He made it up there by 10 pm that night and we stayed up nearly all night talking. He kept reassuring me the entire time that everything will be OK.
An assembly of sixteen
When Nate and I arrived at the hospital the next day, along with my mom, dad, and my brother, I was ushered into a room immediately. I was a bundle of nervous energy but also ready to meet my baby!!
Shortly after arriving, I was given an IV and little by little the entire assembly of doctors and nurses ushered in team by team to see me. All in all there would be 16 medical staff in the room with us to deliver Nasir. HOLY MACARONI!! 16!!! I was only allowed one other person with me, and of course that was Nate. I was then taken into the OR alone while he was told to get garbed up.
While I was in the OR, it was freezing. More IVs were placed. There were so many lights, so many machines, so many instruments, and so many people. I started to shake uncontrollably. I was given an epidural and a spinal, but the placement was giving me issues. They kept telling me to sit still. I couldn’t stop shaking. I hugged a pillow tightly to my front while they put the needles in my spine. It took forever. At one point, I felt a severe pain in my hip. They hit a nerve and my leg involuntarily shot out and kicked without me doing it. Yeah, this wasn’t working. They moved it a little higher in my spine and it was better.
From there, things moved so fast.
I was put on a table with my arms spread out wide. I had all the IVs in me, they erected a curtain up in front of me. So many people ushered in and out. The anesthesiologists, the surgery team, the OB-GYN team, the colorectal team, the nurses..SO MANY people! That team of 16 was in full action!
I wanted Nate and asked them to check on him. They said he was outside pacing. I wanted him with me, and it wasn’t much longer and he was able to come back into the OR. As soon as he walked in, they started to open me up. The doctors were wonderful about talking me through every step. I had the best cheerleader by my side. Nate was incredible. The anesthesia team was also very supportive and kept encouraging me softly, cheering for me, kept me comfortable, and just made me feel safe. I get choked up just thinking of these moments–moments I wanted to be fully present to remember.
I started to feel a severe pain in my right shoulder and started to get afraid. I told the doctor and they said they had my uterus out. The uterus is connected to the nerves in the shoulder and the pain I was experiencing was called “referred pain.”
It was only moments later when we heard our baby’s tiny cries. Nate started sobbing, I started sobbing. They lifted him over the screen so we could see him. My first thought was how tiny he was. They quickly moved him to the warming table so Nate could trim the cord and the team moved fast to get all the baby stats. Within moments, they brought this tiny naked baby to me and laid him on my chest. I could barely see or breathe I was crying so hard. HE WAS BEAUTIFUL. So precious. My miracle.
It took some time for the surgeons to close me up because they had to clear out scar tissue from former surgeries. They excised my old scar from the time I had the wound vac, and cleaned all of that tissue to make my incision a cleaner closure. It took quite a while, but I wasn’t even paying a moment of attention to that. Instead I was counting toes and fingers, memorizing my little boys face, and through my tears and laughter, I was rejoicing in this miracle.
As I was wheeled into a recovery room, Nate went to tell my family that our baby arrived. We wanted a few minutes alone to relish our first moments as a family of three. We also had an overflow of emotion that was just indescribable and we wanted to bask in the intimacy of sharing these very personal feelings together.
I remember when they lifted our baby over the screen after we heard his cries. I recall looking at him and instantly knowing that his name in my heart would be Nasir, but I didn’t say anything. To be fair, I wanted to hear Nate’s thoughts about his name. As soon as I asked him what our baby’s name should be, he said Nasir! We both felt it. We both knew. His name is Nasir Nathan.
Nasir is a Pakistani/Arabic name that means “Victorious,” and there is no more appropriate name fitting to this little boy than that. After all I have been through, all the health struggles and trials, I look at him and I know it was all for this moment.
As some of you may have noticed, I have been somewhat MIA on my social media and on my blog for a little bit. I have been posting and have been a little active, just not as much as I usually am. There’s a reason for that.
Last week, I ended up in the hospital. I was having a lot of issues with my body and baby, so I went into the Emergency Room. The doctors here in La Crosse, WI did not feel confident, and the scope of my issues were outside of the range they felt comfortable dealing with. They felt things were emergent to either med-flight or rush me to Mayo Hospital in Rochester, Minnesota.
It was decided that was going to be rushed by ambulance, but Nate could not accompany me on the ride. He came behind and my mom met us up at Mayo Hospital. I was in the hospital for nearly a week with several complications making it impossible for me to manage at home.
It was decided that upon release from the hospital, I could return home short term while a social worker from the hospital would work on a short term relocation plan for me. For these last few weeks before delivery, I will be staying in Rochester near the hospital in an extended stay apartment. This way, I will be close by the hospital in case anything emergent happens again.
What is going on?
In the recent blog where I shared my pregnancy photos, I mentioned that the doctors have taken me off of all my medications that help to keep my Crohn’s disease under control while I work towards remission. Now, off of the medication, my body has started to get weaker. I ended up with an infection and the infection put my body into a full-on flare.
Since I don’t have a large intestine, my small intestine has to learn the job of what its old companion had done. I have to draw my nourishment, vitamins, minerals, fluids, and much more from my small intestine similarly to what the body does with the large intestine. Not only do I rely on that intake, that same intake is what is helping to keep baby healthy. When I got sick last week, the function of the small intestine failed me, and my body was having a difficult time absorbing ANYTHING. This made it difficult to keep food down, my body was severely dehydrated, and some of my blood test numbers were dropping making it difficult to keep my nourishment markers where they needed to be.
Because I am pregnant, normal options for treatment aren’t always viable because they can affect the baby. There were so many limitations that the doctors could treat me with. It took some time and patience, but we were able to find a way for me to gain some control over my body without causing more stress to me or baby. At least, for now, it was enough to go home and prepare for this upcoming relocation.
What will this mean for YARNutopia?
I am home for a few days. Soon, I will transition to an apartment closer to the hospital in Minnesota. I will stay there temporarily until our baby is born. Nate will be with me on the weekends, and my mom will be coming to stay with me during the weekdays, as I can’t be alone. All my care will continue through Mayo Clinic in Rochester.
(Pictured above is a photo of my mom and me in the hospital last week)
(Pictured above is me, feeling better)
Because of this transition, I won’t be able to be as active or as present on my social media sites. I won’t be checking out completely though! No way! I love my social media! I will, however, be taking a small step back to get things under control with my health and prepare for delivery. There are LOTS of appointments, checkups, and tests to be done in these last few weeks! But don’t worry! I will do what I can, when I can! So, please keep checking the Facebook page, click on the links I share, share photos of your work. I’ll be crocheting to pass some time, and I hope to keep on keeping on. I will be sure to check in as often as I can!!
I will also try to update you as much as possible. Until baby arrives, the most I will be doing is trying to keep as healthy as I can so he can be inside growing and developing. We need him to be the strongest he can be! We are almost to his due date, so we are hoping for a not so bumpy ride to get there! Haha!
In the next few weeks, I am still hopeful to post some new blogs, a few new posts, and whatever I can do, but in the meantime, I will pull from the archives some great classic patterns, some oldies but goodies, and I will share work from my fellow designers! And once baby is here and I am recovered, I will be back better and stronger than ever!
It’s no secret that my battle with my health has been mostly an uphill one. Numerous surgeries have taken their toll on my body for the past ten years as I continue my fight. My Crohn’s disease has to be considered in every facet of my existence. My life, daily decisions, activity, diet, my body, and my future are ruled by this illness and how it will affect my daily living. After ten years, it is “Normal for Nadia” to be at the mercy of this condition. It just is that way. Like a habit, living with severe Crohn’s disease becomes part of my routine.
Doctor appointments, daily meds, regular testing, procedures, and so many details have worked their way into the fiber of my ordinary existence. Even getting married in March was overshadowed by the very real possibility that I may end up sick or in the hospital on our wedding day. It’s just the reality of living with chronic illness. Fortunately, adrenaline was my friend on March 17, 2018 and it helped carry my aching body through the day without incident! Our wedding was the most glorious day ever. Sure, I paid for it afterwards, but I would do all of that 1,000 times over just to relive that beautiful day!
Hardcore family planning
Nate and I always knew we wanted a family, we also knew that it would not be an easy path to having one. Several months after getting married, we sought help from my doctors to find out if I can safely support a pregnancy since I have such a challenging health history. I underwent a series of tests, some incredibly invasive (dignity be damned). A team of specialists were assembled to oversee my care if we were able to get pregnant. According to all these insane tests, there was no reason, despite my health battle, that I couldn’t get pregnant. We were so relieved! We were aware it would be very risky; the warnings from the medical staff came across loud and clear, but we have confidence in the high-risk team overseeing my care. They were very realistic but also reassuring. I was facing my 28th birthday, and although we weren’t aggressively trying, we weren’t being careful either. So, in early November–two days after my birthday–with symptoms that screamed that I might be pregnant, I went to the store and bought a half dozen pregnancy tests.
My internal dialogue was: “I just spent a small fortune on something I am going to pee on. Who cares!??? I need answers!”
It all comes down to a (+) sign
It was a Friday afternoon, November 9th. My friend Sarah was coming to town for a visit, and I was planning on picking her up at the bus station in a few minutes. I only had a small window to privately check out my pregnancy suspicions. So like millions of women before me, I peed on the stick and nervously waited through the minutes that could change everything. I was pacing, nervous and fidgety. How do you distract yourself for those moments without constantly checking if you have your answer? If “a watched pot never boils,” does frantically fanning a pee stick prolong the results?! Because that 5 minutes felt like a flippin’ lifetime!
The test read (+) and I freaked out! I called my mom on Skype immediately, and I was hyperventilating and crying and couldn’t get out what I needed to say. I completely freaked her out because she thought something tragic had happened. I couldn’t speak, and my dramatic reaction had her thinking the worst. I was able to show her the pregnancy test and get her expert opinion on what it was saying. (Like I didn’t already know, right?!) Were these tests saying what I thought they were saying? Of course they were, but I needed Dr. Mom!!! She talked me through it and asked me what Nate said about it…
Oh. My. Gosh. Nate!!! I had yet to tell Nate! How did I not think of that?
She suggested that maybe I should have called him first! Oh my goodness, absolutely! I was a bit of a frantic mess. Where’s my coat?! I’m wearing it. Where are my keys?! In my hand! I had only a few minutes because Sarah’s bus was about to arrive! I jumped in the car and decided to stop at his work! Woops! Was that a stop sign? Just kidding! I am grateful I didn’t receive a citation on the way to tell my husband!
We are having a baby… What do we do now?
Nate came out to the car and I had the test stick in a Ziploc bag. I told him I have to tell him something and without asking, he just said, “You’re pregnant.” I cried, I laughed, and I shoved the pee stick in the Ziploc at him and told him to look at it. We were so happy! He said he had a strong feeling. He knew. What emotions! So high, but then reality started to sink in like “What are we going to do now”? Even though we didn’t know what direction to take at that exact moment, we would figure it out together. We called my mom again from the car in the parking lot at Nate’s work. After talking to her, we knew I had to see my doctors first. We had to keep this quiet for a while. By all calculations, I was only about six to seven weeks along. Things were so precarious with my health and we wanted to make sure the pregnancy was viable and baby was healthy. We also needed to be sure I was fully healthy enough to actually support a pregnancy. On a scale from one to ten our emotions were off the chart. What ARE we going to do now?! GAHHH! WE ARE HAVING A BABYYYY!!
Game Face and A No Colon Surprise Party
Nate went back to work, and I had to pick up Sarah. How was I going to keep a straight face? How do I keep this from my best friend? Although I was busting to tell her to the point I was getting twitchy, I knew I couldn’t. I am the WORST at keeping a secret, God knows, and it was stressful to not blurt it out! I put on my best game face and decided to get it out of my mind (yeah, right!) and enjoy the weekend. Little did I know that the reason Sarah was really coming to visit was because my mom, Nate, Sarah and Nida were planning a surprise party to celebrate my birthday tied into a No Colon, Still Rollin’ – 10 years later party! WHAT IS HAPPENING!??? Saturday afternoon my entire family and all my friends surprised me and I couldn’t say a word to any of them! I ate three poop emoji cupcakes just from the stress of it all. Only Nate and my parents knew, and I couldn’t talk to them with everyone around! Again, ALL THE EMOTIONS!!!
Thank goodness for poop emoji cupcakes. That’s all I’m sayin’.
Well, it’s true! We’re pregnant.
I scheduled my first appointment and we had our first ultrasound. I knew going into this that it wouldn’t be easy. Nausea, heartburn, extreme fatigue, restless legs, extremely sensitive boobs that have grown 10 times their size, body pains off the charts, visits to the ER to check scary symptoms caused by adhesions from past surgical scar tissue, phantom sharp pains in my non-existent anus, my ostomy is shifting to the side as my tummy begins to grow, the scars on my tummy are being stretched, back pain, sciatic pain, vivid dreams and nightmares, itchiness, sleeplessness, aversion to certain foods, no appetite to ravishing hunger, even more profound vitamin deficiency (particularly folic acid and magnesium), chronic asthma symptoms to the point I need my rescue inhaler constantly and now a nebulizer, and more issues are plaguing me night and day, and I’m only past my first trimester!
But, it’s all worth it.
Especially at that very moment when we saw our baby on the ultrasound.
Suddenly, it all became real. We heard the heartbeat and we laughed and cried.
We called it our “little bean.”
We instantly fell in love.
Our baby is due in June 2019, and our hearts are so full.
What now, doc?
We had our first minor complication. There was a subchorionic hemorrhage (a blood clot) that was found on the ultrasound. The doctor said it happens in implantation, and unless I had excessive bleeding (I was only having some bleeding), not to worry too much about it, and it would be monitored. I also had to cease a bunch of my medications. In stopping the meds, I risk some complications, but I have been managing things pretty well. One medication I can’t stop is my biologic injection. I am so worried about taking it, but I can’t risk getting sick to the point it would put me and baby in danger. My team has warned me over and over not to stop it.
I have to be truthful, I was contemplating stopping my biologic injection. The grave warnings from all my doctors have me reconsidering as I face having to take it this week. There is no evident risk to baby, but to me, if I stop, it would be very grave. I could become too ill and not be well enough to sustain the pregnancy, putting both of us at risk. Every doctor concurs. I do have to stop taking it at thirty weeks into the pregnancy to best insure that baby comes into this world the strongest and healthiest it can be. I am concerned without the protection of any medication to control my disease, my body won’t cooperate. I am hopeful. I am optimistic. I am scared. I won’t lie, I know what I am facing, and I know it will be worth it, but I also know this isn’t going to be an easy journey. Nothing this wonderful ever is. I have learned this lesson over and over in my life; I am familiar with how this goes. I am familiar with the bargaining process.
Now we are three!
We are now in the planning stage. I am almost 14 weeks pregnant, and have been following all the doctors’ instruction and am closely monitored. I am also chronicling my pregnancy on The Bump Phone App! According to the app, today our baby is about the size of a lemon! I have regular doctor appointments both with my standard team as well as a high-risk OB-GYN in Rochester, Minnesota at the Mayo Clinic. I couldn’t ask for a better crew of docs overseeing our care! They are so thorough. My last appointment with the specialist was two hours! We are in great hands, and we’re hopeful that things will continue to go well. I just pray that I stay healthy and strong for our little sweet pea. My heart is so full and all I want is to provide the best for this tiny baby despite my challenges.
Merry Christmas to Us!
We told Nyle, Nabeel, Samantha and Des over Thanksgiving. We also went to visit Nate’s dad and gave him a special “Grandpa” shirt.
We also told Nate’s brothers that weekend, too. Other than immediate family and a couple close friends, we decided to wait and reveal our news to everyone else over Christmas! Our family and friends are elated, and some told me they “just had that feeling!”
Today, I wanted to share this with our YARNutopians now that our extended families and close friends received the news. Now, my crochet project list grows! Baby stuff galore! I already have some baby projects on our agenda! What an exciting year of crochet we have ahead of us! I hope to continue with our filming and projects as long as I can and will continue after baby’s arrival! We all have so much to look forward to in the New Year. Not only are we expecting a new addition, but my brother and his wife are also expecting a new baby in January! So many reasons to crochet! Haha! I am excited and filled with joy to share our news with all of you. Cheers to 2019! Thanks for being with us on this crazy and wonderful journey!