When I had my son I was lucky enough to have saved up enough leave to take off three months to be with him. During that maternity leave I learned how to be a mother. I hardly slept because I was either nursing or changing diapers or watching him sleep to make sure he was breathing. I took him to his doctor appointments. We went shopping, to the movies, out for dinner and we hung out at the pool. It was an enjoyable time bonding with my new baby. That is maternity leave.
What I am doing now is not maternity leave. Since my daughter has been home, we have had so many medical appointments I have lost track. Each week we have had doctor appointments or testing or visits by our home nurse or PT. This week we had our follow up to her hearing test which she failed in the hospital (she failed again so we have another test scheduled for later this month). We had an abdominal sonogram to check on her organs which they have been telling us were not in the "normal" placement (turned out all organs are right where they are supposed to be). We had our visit with the home nurse (one more visit to go). And we will have our PT appointment later this week. Also, I had an appointment to get my flu shot and my TDAP to make sure I don't get myself or my baby sick. I also have follow up blood work this week since my last lab work at Hopkins indicated very low iron levels which are apparently concerning now. This is a typical week for us.
Regular baby bonding things like feedings are also more complicated this time around. We have to give her two feedings of extra calorie supplements and two feedings of iron supplements. Since she is a preemie she sleeps all the time so I have to actually wake her to feed her (no, this is not wonderful, she needs to eat and letting her sleep longer is not an option) and due to her GI issues she is very gassy and has a more difficult time feeding than my son did not to mention the special preemie formula she is taking.
Yes, I get cuddle time and we are definitely bonding; however, it is not the same. I have not been able to enjoy taking her out to show her off like all mothers want to do. For the most part, we are on lock down at home to keep her from getting sick or sitting in doctor offices surrounded by sick people (go figure).
I am not writing this as a complaint about being home with her. I am grateful she is such a fighter and that she has such wonderful health care providers and our insurance is awesome. I don't even mind sitting in my living room for hours watching her sleep and catching up on my "stories". What bothers me is the misconception that this is somehow an enjoyable situation like I am on vacation or something. Yes, I am glad I am able to be here for her when she needs me. There is no way I could be at all of these appointments if I was working. BUT, I would trade this in and return to work in a heart beat if she could have been born a healthy full-term baby who only required the routine doctor visits. I would trade it all in to not hear comments like "well being stuck at home is better than being stuck in the NICU isn't it?" in response to my saying I would love to be able to get out even if just walking around the mall or having coffee at Starbucks. YES, it is better to be at home than in the NICU (if you had been in the NICU yourself you would not have said this so I am assuming you know thing about what you are saying) but both options are not optimal. Please do not make me feel like a POS parent for wanting for normalcy. On the few occasions we have taken her out to run errands, people have commented about how surprising it was we took her out. Weren't we afraid she would get sick? Bad Parents!
My message to the haters who are jealous of my extended leave would be "don't worry, I am not enjoying myself as much as you think I am." And to the people who are concerned I am not making the best parenting decisions, "please stop worrying because she is my child, not yours." There is not a human being on this planet more concerned with her well-being than I am (except my husband).
This is not maternity leave or a paid vacation. This is leave to care for my baby who has special medical needs. I am making the most of the situation; turning lemons into lemonade.
Thursday, October 1, 2015
Monday, September 21, 2015
Infection after Infection
Last Tuesday my case of Mastitis was confirmed and I was put on Clindamycin which is a 10-day antibiotic I have to take every 8 hours. Today my lab results from Hopkins came back and it indicates I also have a bladder infection. Yea me! So, now I am waiting to see which other antibiotics Dr. Petri is going to add to the mix.
How often do people have bladder infections and not notice it? I have had them in the past and I kind of thought something was off but I just let it pass. My pain tolerance is fairly high and I tend to let things settle before getting all worked up about it. I did some research and I see catheters can lead to infections. I had a catheter when I had my c-section. It was one of the best things about that surgery! When you are on so many drugs and your stomach is cut open, getting out of bed to pee if one of the last things you want to do. Now, I am reconsidering the awesomeness of the catheter.
How many different antibiotics can you be on at one time? Isn't there one that could knock out all infection? I will never complain about my regular medications again.
How often do people have bladder infections and not notice it? I have had them in the past and I kind of thought something was off but I just let it pass. My pain tolerance is fairly high and I tend to let things settle before getting all worked up about it. I did some research and I see catheters can lead to infections. I had a catheter when I had my c-section. It was one of the best things about that surgery! When you are on so many drugs and your stomach is cut open, getting out of bed to pee if one of the last things you want to do. Now, I am reconsidering the awesomeness of the catheter.
How many different antibiotics can you be on at one time? Isn't there one that could knock out all infection? I will never complain about my regular medications again.
Friday, September 18, 2015
Lupus and Sprout Times Two
Wait, I have a blog that I haven't updated in about 10 weeks? What is wrong with me? How could I neglect to update everyone on my pregnancy which is already so precarious with the lupus issue? Where do I begin? This might turn into a long post so reader beware.
The last time I updated this blog I was 26 weeks pregnant with baby #2. This is also the week I had my appointment with the high risk specialist who informed us that there was an issue that needed weekly monitoring. My poor baby was not growing and the fluids she needed to survive and thrive did not appear to be sufficient. We we scheduled for weekly sonograms and I was told, "try to keep her in there until 32-34 weeks." That seemed like forever.
On 30 July 2015, we went back to the specialist who again told us her growth was not on track and, in fact, her fluids were decreasing. Had I noticed any leaking? Umm, no... wouldn't I notice leaking that much fluid? Had I been drinking enough water? I think so, I did notice I was craving ice chips. I had a huge bag of ice in my office freezer graciously marked "Stephanie's Ice, do not touch or else!" What else could I do to increase my fluids and get her to grow? Apparently nothing. This is a horrible feeling. There is nothing more in the world a mother wants to do than to protect her babies and I was failing my baby already. Or should I clarify, my body was failing her. What was different this pregnancy than with my first? EVERYTHING...Lupus. Damn Lupus.
This was also the appointment that my wonderful doctor said its time to get the steroid shot in case we need to meet our baby girl early. I got the shot in my butt check at that appointment; the first of two important shots. These shots make sure the baby's lungs are developed and can function (breathe) once she is born and they only take 48 hours to work.
The following day, a Friday, I went to work with a feeling I was not coming back. I cleaned out my caseload, emptied my email, filled out 6 weeks worth of timesheets and basically made all of the necessary arrangements for my maternity leave to start ASAP. That evening after work, I went to the hospital to get my second steroid shot. I joked with the nurse in L&D that I hoped I would not see her on Monday....
That weekend is a blur now. We were able to move up our maternity pictures (which is a benefit of asking a family member to take the shots). It was fun to see the pictures and realize, at that point, my husband had gained more weight than I had and his stomach was the same size or larger than mine. At 29 weeks, this should not have been the case. It probably was another indicator something was wrong. We cleaned the house and organized/washed all of the baby's items (not sure why we did this now looking back).
Monday, 3 August 2015, we went to our 7 am appointment with the high risk specialist. This time, since we were being squeezed in, we saw a new doctor. The sonogram tech was quiet while she looked for something. She left the room and came back and started looking again. Finally she said, "got it" and went to get the doctor. When he came in he was very nice. He said your fluids are extremely low but the good news is that the shots worked and your baby is practicing breathing on her own. Time to do a stress test to see how the baby's heart is holding up. 20 minutes later we were told her heart rate dropped, which is concerning when combined with the low fluids. Time to go to the hospital, we are delivering now.
And because we were not completely prepared for that news, we asked to go home quick for a bag and to take our son to daycare (he was home with my MIL). We got home and ran around like crazy grabbing essentials. We had to do a crash course for my MIL on how to drop my son at daycare. The hardest part was trying to explain to my son that I was going to the hospital with daddy and we would not be home for a few days. We should have planned and prepped him for this long before. What was I thinking? Poor baby. This ended up being a very hard week on him and I still hear him asking me if I am leaving him or when am I coming home.
My first child was born via normal and easy vaginal birth. He came on his own. My water broke around mid night and he was born at 9am. That was the experience I had going in to the hospital. I knew I was going to have a c-section since the baby had medical concerns and she was so small. I did not have time to research c-sections and I had no idea what to expect. I assume a lot of people or even most people who have them have no complications especially since people elect for that over vaginal birth. My experience was not great.
The doctor and nurses were awesome. My doctor was actually the doctor on call so I was grateful since she was aware of my situation. I had to start a magnesium drip which I had the entire procedure. This makes your entire body from the inside out feel hot. I have a hard time getting veins for IVs so this is usually my least favorite part of any surgery. I ended up with IVs in both arms because they needed to give me more meds/fluids. One hour after arriving at the hospital I was wheeled down to the OR.
The operation took one hour. The baby was out in 15 minutes. We heard her cry and then we cried. Then the NICU nurse took her away. I barely got to see her little face for 10 sections before she was whisked away. The last 45 minutes was spent (1) digging and searching for the IUD and (2) a tubal ligation to ensure this never happens again (99% ensured). Right as the doctor called for an x-ray to find the IUD, which was not in my uterus, she found it. I had a spinal and 2 additional doses of Morphine for the pain that shot up my spine. I thought I was going to pass out from the pain/heat from the Magnesium drip/the blow-by-blow of the operation that the anesthesiologist decided she needed to give us. There is a curtain for a reason lady! Please stop telling me which organs the doctor is moving around. Seriously.
You spend an hour after surgery in recovery, which is nice. Its quiet and no one can bother you, It was sad for us because right next to us was a couple with a big loud and obviously healthy baby. We could hear the baby cry and the parents swooning. We had each other and someone else had our baby. We were then taken to the NICU to see our baby, which I have no memory of (I did not get to hold my baby for a few days). I do not remember much from this point until we were in our private room. The rest of our stay was much like anyone else's with the addition of going downstairs to visit the NICU and the ability to get plenty of rest since we did not have a baby in our room to care for. The food was horrible, the staff was great, and the drugs were fabulous. I had many visitors and even got a slice of my favorite Cheesecake Factory cheesecake thanks to my little brother and his girlfriend. Then it was discharge day and we went home alone (this was horribly sad).
Our little lady spent 5 weeks in the NICU where she was a resident rock star. She never required oxygen and she met or surpassed every milestone. I visited daily spending hours holding her, feeding her and talking with the medical staff. My husband visited as much as he could since he had to return to work. We are so lucky we live close to the hospital so we could make frequent trips and not spend forever on the road. Besides the obvious challenges of having a baby in the NICU, I found it difficult to schedule the visits on the weekends when my 3 year old was home and it was difficult to schedule visits for other family members since everyone needed to be escorted by a parent. It was also difficult when her care times changed without notice or when you got a nurse you didn't mesh with. (Care times are the set times when the nurses would give her her food, change diapers and take vitals. This is when I needed to be there to hold her or the nurses would not take her out of the incubator.)
Another challenge I found this time around was breastfeeding. Its practically impossible to nurse a NICU baby. I had a handful of times when I nursed her but she was so small she didn't have the ability to suck and swallow. She was also fed via a feeding tube so she did not have the urge to try to nurse. Then when the tube was removed she was bottle feed around the clock by the nursing staff. The only option you have if you want to provide breast milk is pumping. Exclusive pumping is hard work. I had no idea. Your supply suffers because your body is confused on how much to produce. It is hard to pump every 2-3 hours around the clock when you are alone without a baby. It is especially hard at night. Your stress and emotions make pumping harder and then there is Lupus. Over the course of 6 weeks exclusively pumping I had three bouts of engorgement and one confirmed case of Mastitis (I'm sure all three were actual infections but I only sought medical attention after the last case of engorgement.) I was engorged, fevered, chilled and fatigued. Basically I was useless yet I still had to pump which was so painful I would cry. After this last time of getting ill, I decided enough was enough. My baby is home. She has been feed breast milk her entire life thus far and I cannot do it anymore. This is the hardest decision. Ending nursing is hard on moms and its harder (IMO) when the choice is taken from you. The guilt is overwhelming. With my son, I nursed him for about 8 weeks. I had the same engorgement and decided to stop plus he had latching problems from the beginning and I had to use a breast shield (ugh, they suck). It was hard then to stop breast feeding even though it was not enjoyable and it is harder now since she is my last baby. When I tell people I was exclusively pumping, no one is surprised I can't do it anymore. It doesn't make me feel any better. Having lupus means I am susceptible to infection so if I had decided I wanted to push through and continue pumping, I would get infected again and again. Not to mention the time it takes to pump, feed the baby, and then do it again in 2 hours. Fatigue is not kind to my Lupus and I fear a flare. The Lupus specialist confirmed my difficulties,including the breastfeeding, most likely can be attributed to the Lupus. I had real intentions to do better this time around and it kills me that I failed...or that my body failed me. Damn Lupus.
Our baby was discharged on 6 September 2015. Since coming home, she has been to the pediatrician twice, seen a home nurse three times, had a EKG and heart echo, and had a blood draw for lab work. We have yet to visit the ophthalmologist, complete her hearing test or meet with the county's physical therapist to set up a treatment plan (all of which are scheduled). I ran out of paid leave on September 14th and had planned to stay home on leave without pay. Thankfully, after all of the hardships, I was granted paid leave from my works leave share program until black Friday (I plan to return to work the Monday after Thanksgiving, who returns on a Friday?) Being able to be home and care for my baby when she needs me the most and to get paid is a wonderful surprise.
This post is a lot longer than I intended. I wanted to document my experience before I forget the details. One day my baby girl may read my blog. If and when she does, I want her to know how strong she is, how hard she had to fight to be here and how proud I am of this little wonder. So many people played a part in this success story. Again, life opened my eyes to something I had no knowledge of before. Unless you are a NICU parent, you don't understand. Unless you are a NICU mother with Lupus, I can't explain it any better.
The last time I updated this blog I was 26 weeks pregnant with baby #2. This is also the week I had my appointment with the high risk specialist who informed us that there was an issue that needed weekly monitoring. My poor baby was not growing and the fluids she needed to survive and thrive did not appear to be sufficient. We we scheduled for weekly sonograms and I was told, "try to keep her in there until 32-34 weeks." That seemed like forever.
On 30 July 2015, we went back to the specialist who again told us her growth was not on track and, in fact, her fluids were decreasing. Had I noticed any leaking? Umm, no... wouldn't I notice leaking that much fluid? Had I been drinking enough water? I think so, I did notice I was craving ice chips. I had a huge bag of ice in my office freezer graciously marked "Stephanie's Ice, do not touch or else!" What else could I do to increase my fluids and get her to grow? Apparently nothing. This is a horrible feeling. There is nothing more in the world a mother wants to do than to protect her babies and I was failing my baby already. Or should I clarify, my body was failing her. What was different this pregnancy than with my first? EVERYTHING...Lupus. Damn Lupus.
This was also the appointment that my wonderful doctor said its time to get the steroid shot in case we need to meet our baby girl early. I got the shot in my butt check at that appointment; the first of two important shots. These shots make sure the baby's lungs are developed and can function (breathe) once she is born and they only take 48 hours to work.
The following day, a Friday, I went to work with a feeling I was not coming back. I cleaned out my caseload, emptied my email, filled out 6 weeks worth of timesheets and basically made all of the necessary arrangements for my maternity leave to start ASAP. That evening after work, I went to the hospital to get my second steroid shot. I joked with the nurse in L&D that I hoped I would not see her on Monday....
That weekend is a blur now. We were able to move up our maternity pictures (which is a benefit of asking a family member to take the shots). It was fun to see the pictures and realize, at that point, my husband had gained more weight than I had and his stomach was the same size or larger than mine. At 29 weeks, this should not have been the case. It probably was another indicator something was wrong. We cleaned the house and organized/washed all of the baby's items (not sure why we did this now looking back).
Monday, 3 August 2015, we went to our 7 am appointment with the high risk specialist. This time, since we were being squeezed in, we saw a new doctor. The sonogram tech was quiet while she looked for something. She left the room and came back and started looking again. Finally she said, "got it" and went to get the doctor. When he came in he was very nice. He said your fluids are extremely low but the good news is that the shots worked and your baby is practicing breathing on her own. Time to do a stress test to see how the baby's heart is holding up. 20 minutes later we were told her heart rate dropped, which is concerning when combined with the low fluids. Time to go to the hospital, we are delivering now.
And because we were not completely prepared for that news, we asked to go home quick for a bag and to take our son to daycare (he was home with my MIL). We got home and ran around like crazy grabbing essentials. We had to do a crash course for my MIL on how to drop my son at daycare. The hardest part was trying to explain to my son that I was going to the hospital with daddy and we would not be home for a few days. We should have planned and prepped him for this long before. What was I thinking? Poor baby. This ended up being a very hard week on him and I still hear him asking me if I am leaving him or when am I coming home.
My first child was born via normal and easy vaginal birth. He came on his own. My water broke around mid night and he was born at 9am. That was the experience I had going in to the hospital. I knew I was going to have a c-section since the baby had medical concerns and she was so small. I did not have time to research c-sections and I had no idea what to expect. I assume a lot of people or even most people who have them have no complications especially since people elect for that over vaginal birth. My experience was not great.
The doctor and nurses were awesome. My doctor was actually the doctor on call so I was grateful since she was aware of my situation. I had to start a magnesium drip which I had the entire procedure. This makes your entire body from the inside out feel hot. I have a hard time getting veins for IVs so this is usually my least favorite part of any surgery. I ended up with IVs in both arms because they needed to give me more meds/fluids. One hour after arriving at the hospital I was wheeled down to the OR.
The operation took one hour. The baby was out in 15 minutes. We heard her cry and then we cried. Then the NICU nurse took her away. I barely got to see her little face for 10 sections before she was whisked away. The last 45 minutes was spent (1) digging and searching for the IUD and (2) a tubal ligation to ensure this never happens again (99% ensured). Right as the doctor called for an x-ray to find the IUD, which was not in my uterus, she found it. I had a spinal and 2 additional doses of Morphine for the pain that shot up my spine. I thought I was going to pass out from the pain/heat from the Magnesium drip/the blow-by-blow of the operation that the anesthesiologist decided she needed to give us. There is a curtain for a reason lady! Please stop telling me which organs the doctor is moving around. Seriously.
You spend an hour after surgery in recovery, which is nice. Its quiet and no one can bother you, It was sad for us because right next to us was a couple with a big loud and obviously healthy baby. We could hear the baby cry and the parents swooning. We had each other and someone else had our baby. We were then taken to the NICU to see our baby, which I have no memory of (I did not get to hold my baby for a few days). I do not remember much from this point until we were in our private room. The rest of our stay was much like anyone else's with the addition of going downstairs to visit the NICU and the ability to get plenty of rest since we did not have a baby in our room to care for. The food was horrible, the staff was great, and the drugs were fabulous. I had many visitors and even got a slice of my favorite Cheesecake Factory cheesecake thanks to my little brother and his girlfriend. Then it was discharge day and we went home alone (this was horribly sad). Our little lady spent 5 weeks in the NICU where she was a resident rock star. She never required oxygen and she met or surpassed every milestone. I visited daily spending hours holding her, feeding her and talking with the medical staff. My husband visited as much as he could since he had to return to work. We are so lucky we live close to the hospital so we could make frequent trips and not spend forever on the road. Besides the obvious challenges of having a baby in the NICU, I found it difficult to schedule the visits on the weekends when my 3 year old was home and it was difficult to schedule visits for other family members since everyone needed to be escorted by a parent. It was also difficult when her care times changed without notice or when you got a nurse you didn't mesh with. (Care times are the set times when the nurses would give her her food, change diapers and take vitals. This is when I needed to be there to hold her or the nurses would not take her out of the incubator.)
Another challenge I found this time around was breastfeeding. Its practically impossible to nurse a NICU baby. I had a handful of times when I nursed her but she was so small she didn't have the ability to suck and swallow. She was also fed via a feeding tube so she did not have the urge to try to nurse. Then when the tube was removed she was bottle feed around the clock by the nursing staff. The only option you have if you want to provide breast milk is pumping. Exclusive pumping is hard work. I had no idea. Your supply suffers because your body is confused on how much to produce. It is hard to pump every 2-3 hours around the clock when you are alone without a baby. It is especially hard at night. Your stress and emotions make pumping harder and then there is Lupus. Over the course of 6 weeks exclusively pumping I had three bouts of engorgement and one confirmed case of Mastitis (I'm sure all three were actual infections but I only sought medical attention after the last case of engorgement.) I was engorged, fevered, chilled and fatigued. Basically I was useless yet I still had to pump which was so painful I would cry. After this last time of getting ill, I decided enough was enough. My baby is home. She has been feed breast milk her entire life thus far and I cannot do it anymore. This is the hardest decision. Ending nursing is hard on moms and its harder (IMO) when the choice is taken from you. The guilt is overwhelming. With my son, I nursed him for about 8 weeks. I had the same engorgement and decided to stop plus he had latching problems from the beginning and I had to use a breast shield (ugh, they suck). It was hard then to stop breast feeding even though it was not enjoyable and it is harder now since she is my last baby. When I tell people I was exclusively pumping, no one is surprised I can't do it anymore. It doesn't make me feel any better. Having lupus means I am susceptible to infection so if I had decided I wanted to push through and continue pumping, I would get infected again and again. Not to mention the time it takes to pump, feed the baby, and then do it again in 2 hours. Fatigue is not kind to my Lupus and I fear a flare. The Lupus specialist confirmed my difficulties,including the breastfeeding, most likely can be attributed to the Lupus. I had real intentions to do better this time around and it kills me that I failed...or that my body failed me. Damn Lupus.
Our baby was discharged on 6 September 2015. Since coming home, she has been to the pediatrician twice, seen a home nurse three times, had a EKG and heart echo, and had a blood draw for lab work. We have yet to visit the ophthalmologist, complete her hearing test or meet with the county's physical therapist to set up a treatment plan (all of which are scheduled). I ran out of paid leave on September 14th and had planned to stay home on leave without pay. Thankfully, after all of the hardships, I was granted paid leave from my works leave share program until black Friday (I plan to return to work the Monday after Thanksgiving, who returns on a Friday?) Being able to be home and care for my baby when she needs me the most and to get paid is a wonderful surprise. This post is a lot longer than I intended. I wanted to document my experience before I forget the details. One day my baby girl may read my blog. If and when she does, I want her to know how strong she is, how hard she had to fight to be here and how proud I am of this little wonder. So many people played a part in this success story. Again, life opened my eyes to something I had no knowledge of before. Unless you are a NICU parent, you don't understand. Unless you are a NICU mother with Lupus, I can't explain it any better.
Monday, July 13, 2015
26 Weeks and Counting
Time is flying by and before I know it, summer will be over and I will be anxiously awaiting our newest addition.
What has it been like to be pregnant with baby #2 and having lupus? TIRED but I do not think this is a unique feature of having lupus. I attribute it to having a toddler and a full time job. So far I can't complain about much other than being tired and still not being able to sleep. Typical pregnancy problems such as peeing every hour is annoying and probably the culprit of the lack of sleep. During my first pregnancy, at 26 weeks you barely could tell I was pregnant. Now, you can tell and so can I! My walk is slower and my bending is not as graceful. Again, not unexpected and not related to Lupus.
This summer we have made it to the beach twice so far. Staying out of the sun and slathered in sunblock helped keep any flare activity at bay. I am grateful to be able to enjoy the beach while staying safe and healthy thanks to my wonderful family. I can say walking across the hot sinking sand is not fun, especially when you weigh like 20lbs more than your used to weighing.
So far I have bought three outfits for baby. I am really trying not to get sucked into buying tons of clothes knowing she will out grow things so fast. I went through Sprout's old clothes and was able to reuse a bunch of newborn and infant items which is awesome and puts off the bittersweet idea of donating his little outfits. Considering this is our last baby (fingers crossed) and this one is a girl, my husband and I decided to throw a party! We are hosting a sprinkle for baby girl so our closest friends and family can celebrate and share in our excitement. I have heard lots of feedback regarding this sprinkle, and I never thought it would be so controversial, but apparently people do not like the idea of a celebrating a second baby. I don't see why we shouldn't have a party to celebrate the new addition. All parents are excited for their new babies and should be able to celebrate it anyway they choose. Haters not welcome! I will update with our co-ed sprinkle details once the date gets closer
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| Our gender reveal picture,,,the balloon popped almost immediately so glad I was able to capture this moment! |
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| Two trips to the ice cream shop in one day at the beach! Little sprout is really making out on these pregnancy whims. |
This summer we have made it to the beach twice so far. Staying out of the sun and slathered in sunblock helped keep any flare activity at bay. I am grateful to be able to enjoy the beach while staying safe and healthy thanks to my wonderful family. I can say walking across the hot sinking sand is not fun, especially when you weigh like 20lbs more than your used to weighing.
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| Trying not to buy too much but I could not resist this baby jogger city mini double when I found it used! |
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So, so far so good. Monthly OB and high risk appointments continue. Lupus check ups at Johns Hopkins every 6 weeks continue to return positive testing and show no signs of lupus activity. Thanks to lupus, I did have to see a pediatric cardiologist to make sure baby girl's heart is not affected by my disease, which it's not. We took our hospital tour and we are super happy with the hospital, staff and accommodations. Let the final trimester countdown begin!
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| 26 weeks and healthy! |
So, so far so good. Monthly OB and high risk appointments continue. Lupus check ups at Johns Hopkins every 6 weeks continue to return positive testing and show no signs of lupus activity. Thanks to lupus, I did have to see a pediatric cardiologist to make sure baby girl's heart is not affected by my disease, which it's not. We took our hospital tour and we are super happy with the hospital, staff and accommodations. Let the final trimester countdown begin!
Thursday, May 21, 2015
The Longest Week
One week from today we have our anatomy scan for baby #2. I do not remember the anticipation being this bad with my son. This pregnancy feels very similar to my last one or better. The second trimester is wonderful since, for the most part, the morning sickness has passed and my appetite is back to normal. I have gained 1 pound so far and I am at 19 weeks. I have had dreams about having a second boy but they could just be my brain remembering the last pregnancy and since having a boy is all I know. My son refers to the baby as his little brother. So the wait continues. Next week I get to fill this box with pink or blue balloons for my son to open. Either way, we are excited to see our little one and hope they are growing big and strong.
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| Sister or Brother? Time will tell... |
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| 19 weeks |
Monday, May 11, 2015
Lupus and Sprout Times Two
Today I am about 17 weeks 5 days pregnant with baby #2. About 10 weeks ago I got sick, very sick. It was the kind of sick I haven't talked about or experienced in about two years. I was exhausted and stayed in bed for days. I was so sick I could not eat or drink. The headaches were out of control. I made two trips to my primary care practitioner who told me it was most likely allergies. After the second time of being told to continue taking my allergy medicine I decided to reach out to my Lupus doctor. I knew something was not right but I didn't know what.
The following day at work, I ate my normal oatmeal for breakfast and promptly ran to the bathroom and threw it up. A first for me. That is when it started to click. On the way home I stopped by the local grocery store and bought a pregnancy test. I was less than surprised when it came back positive. My husband was in disbelief.
After I had my son and was diagnosed with Lupus, I was told the only birth control I could be prescribed was the Mirena IUD due to the hormones used. Today I still have that Mirena IUD. Epic Fail. What are the odds that someone with a IUD and Lupus gets pregnant? About .02%. My Lupus doctor told us she has never had this happen in her 32 years of practicing medicine. My OB told me my case was so rare she would be discussing with the other doctors in her practice and I was promptly set up with a high risk specialist.
What is the hardest secret you have had to keep? Not discussing this with my friends/family was very difficult however the odds of a miscarriage for pregnancy with Lupus is high and that is even more elevated when you throw in a faulty IUD which cannot be removed or you would abort your fetus.
The decision to have a second child was taken away for my husband and myself and this was forced upon us. We are so grateful. This was a decision we could not agree on or decide what to do. The complications were scary and the risks didn't always seem worth it. Now that we do not have a choice (and I know that some people think we still had a choice to make but in our eyes we did not. Not going through with this pregnancy was not an option) its been a relief. The hard part was decided for us by a greater power. Now we just have to roll with the punches.
Those punches include routine doctor visits with 3 doctors every 4 weeks until they increase to once a week. The good thing being I get lots of special attention and lots of testing and sonograms. So far so good. No signs of that pesky Lupus. Now that I am out of my first trimester, I am feeling great. Less tired, only 1 lbs of weight gain and no more vomiting.
And so my journey with Lupus and Sprout(s) continues. Please keep us in your thoughts and prayers.
The following day at work, I ate my normal oatmeal for breakfast and promptly ran to the bathroom and threw it up. A first for me. That is when it started to click. On the way home I stopped by the local grocery store and bought a pregnancy test. I was less than surprised when it came back positive. My husband was in disbelief.
After I had my son and was diagnosed with Lupus, I was told the only birth control I could be prescribed was the Mirena IUD due to the hormones used. Today I still have that Mirena IUD. Epic Fail. What are the odds that someone with a IUD and Lupus gets pregnant? About .02%. My Lupus doctor told us she has never had this happen in her 32 years of practicing medicine. My OB told me my case was so rare she would be discussing with the other doctors in her practice and I was promptly set up with a high risk specialist.
What is the hardest secret you have had to keep? Not discussing this with my friends/family was very difficult however the odds of a miscarriage for pregnancy with Lupus is high and that is even more elevated when you throw in a faulty IUD which cannot be removed or you would abort your fetus.
The decision to have a second child was taken away for my husband and myself and this was forced upon us. We are so grateful. This was a decision we could not agree on or decide what to do. The complications were scary and the risks didn't always seem worth it. Now that we do not have a choice (and I know that some people think we still had a choice to make but in our eyes we did not. Not going through with this pregnancy was not an option) its been a relief. The hard part was decided for us by a greater power. Now we just have to roll with the punches.
Those punches include routine doctor visits with 3 doctors every 4 weeks until they increase to once a week. The good thing being I get lots of special attention and lots of testing and sonograms. So far so good. No signs of that pesky Lupus. Now that I am out of my first trimester, I am feeling great. Less tired, only 1 lbs of weight gain and no more vomiting.
And so my journey with Lupus and Sprout(s) continues. Please keep us in your thoughts and prayers.
Sunday, January 4, 2015
Happy Healthy New Year
2014 was a great year for us. Everyone was healthy for the most part. We enjoyed spending time with our families. We were lucky enough to make a few trips to the beach. Taking a two year old to the beach is much more fun than the year before. It was awesome to watch him get braver each day. We were able to make some home repairs including new windows, which I am extremely grateful for as I sit in the living room typing this in capris without any draft and I believe its about 30 degrees outside. We were lucky enough to take Jackson to Disney for the first time! He enjoyed it much more than expected. Watching him meet Mickey for the first time brought tears to my eyes. Jackson transitioned to a new school and I can say it was a great choice for us. He has adapted well and made new friends...although he still occasionally asks about AJ (friend from baby school). This fall we bagged about 50 bags of leaves and I'm sorry to say we gave up. We will hit the rest this spring. The holidays were very special in our house this year as we had our Elf, Lollipop, come to stay with us. We completed any arts and crafts, Jackson' s favorite. We are thankful for all our family and friends and the life we are blessed to have.
In 2015, we pray for continued health. We look forward to the good times we are going to share with the ones we love. We are excited to make more updates and personalizations to our home. I can't wait to continue to watch Jackson grow and learn. My personal goals for 2015 include the typical things like good health and weight loss! But to be more specific, I am going to try to be happy everyday. I will try to see silver linings, not stress over things, and not take out my stresses on those close to me. Although weight loss would be nice, I will accept myself for what I am. I will continue my spin classes and yoga practice. I will try to walk more and eat better. And when I fall off this wagon, I will realize I am human and I will start fresh the next day.
Well that's the plan. We will see how it all unfolds. I wish everyone a happy and healthy new year.
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