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.
You are so strong and brave!
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