Struggles of a NICU Mom

It’s hard. The NICU is not a place you ever want to be. It’s a place that is amazing, because of what they can do for each of God’s smallest creations. But, it’s definitely not somewhere you would want to end up.

Struggles of  NICU MomPregnancy is supposed to be a beautiful adventure. But what happens when that adventure ends too soon? Sometimes, shortly after you are finally showing, feeling all those kicks and turns, and just beginning the nursery? It’s a crazy abrupt turn in a direction you never thought was possible. It’s downright scary. The machines, the tubes, the constant beeping, the medical words and explanations, the ups and downs. Unless you’ve experienced it yourself, you never know the hard life of a NICU mom. It’s both physical and emotional. You are tugged in every direction and the roller coaster ride is unimaginable.

This is our second time in the NICU. Mister Man was born at 31 weeks and while we spent a month in the NICU, I have to admit my body and mind were on overdrive. I really did not experience his time in the NICU. It was more of just doing what needed to be done and hoping for the best. Unfortunately, I don’t remember much of that month at all. I almost think I was numb.

So this time around I have made a point to take notes, journal and be more aware of what is going on. This has been great, except I feel much more emotional, scared and worried. Sometimes knowing more than you did before will make things harder. I know that at certain weeks gestation we can start doing certain things like suckling, breastfeeding, moving to an open crib, etc.. This makes it even more difficult because those weeks come and go many times and you are hoping for those moments.

To say the least, it’s been very difficult already and I think we are maybe halfway through. The machines don’t intimidate me like they did with Mister Man, but the side effects of the treatments, especially the steroids and intubation, do. It’s a new experience and while we thought Mister Man had issues with breathing, we had no idea how easy we had it. Sugar Plum is doing great, but can’t seem to get past the breathing tube. We’re hopeful it will be soon, but it’s a sit and wait issue and completely out of our hands.

This is the hardest part, knowing you have no control. You can only hold your sweet baby for 2 hours a day. You are pumping non-stop, but you can’t actually take your baby to your breast because they are not ready. It’s a hard job to be a mom looking in at your baby through a plastic box, trusting others with your baby’s well-being.

One of the hardest things is watching them cry. Being intubated means they cannot make a sound because there is a tube stuck down their throat. They make a sad, crying face, but it’s like a silent film. You cannot cuddle them like you would a full-term baby, instead you can do containment holding to try to calm them. Unfortunately, even this doesn’t always work and it still doesn’t fulfill that need to comfort them.  It. Is. Excruciating.

In all honesty, it’s been hard not to blame myself for the fight our little angel is undertaking. While I know there was nothing I could have done to change the early delivery, it was still my body that kicked them out too soon, twice. And this is something I have to fight with everyday. It’s a struggle.

My patience and faith are growing. Knowing God is in control is comforting, but it’s still hard to watch and be positive every minute, of every hour, of every day. We hope, pray, trust and struggle with every up and down. It’s a long, hard experience, but somehow we make it through another day and watch with hope for tomorrow.

Sugar Plum Has Arrived

Sugar Plum Has Arrived

As posted on our family blog 5/14/15

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It’s been almost a month now since Sugar Plum blessed us so unexpectedly. While we knew there was a higher chance for placental abruption again, we were quite hopeful we’d make it full term this time around. But I guess God figured we could handle it more than 499 other women, and I am ok with that, cause she’s doing great and God always has a plan.

As for her birth story, here goes.

Wednesday (April 15th, 2015) we went about our normal morning routine. Finished up schoolwork and lunch and were getting in the car to head to the office so I could do my part of billing. When we got to the car Sunshine mentioned her car seat wasn’t in the car. Somehow, we had forgotten to move it back from Brian’s car the night before. I told the kiddos to head on back upstairs and I called Brian to explain the situation. He said he would bring the car seat back and would see us in about 20 minutes. He arrived and decided to take Mister Man with him instead so that they could get their haircuts.

The boys left and Sunshine and I took off for the office. On a whim, I decided Sunshine had been really good (and I was craving coffee) so we would make a quick stop at the Starbucks on Douglas. We ordered and got to the window, when I noticed a strange feeling of what I assumed was a discharge. When I moved sideways to hand Sunshine her drink I felt a gush and soon figured out it was blood. I immediately headed to the hospital, which thankfully was about 2 minutes away. I tried to call Brian but it kept going to his voicemail, so I called the office and tried to talk to Grandma, but she was on the other line, so I told Travis what was going on and asked him to tell Grandma and get in touch with Brian ASAP. I then calmly explained to Sunshine that we needed to get inside and I needed her to just walk with me cause mommy needed to see a doctor. I was crying of course, so she was worried already, but she was amazing through it all!

We got into the maternity area and I told them I was gushing blood and was 29 weeks. They immediately got me walking towards a room. One nurse offered me a wheelchair and I said I was fine, but she insisted so I sat down. Sunshine walked on the side gripping my hand through the whole thing. We got to the room, undressed, and got on the bed. The nurses tried to get an IV in but my veins were not cooperating so after poking me 4+ times they finally got it in the back of my left hand. Lots of questions, monitoring and trying to find her heartbeat. It was chaotic to say the least. I tried to keep Sunshine calm and was asking her fun questions, having her look out the windows etc, while inside I am scared to death because they are having trouble finding her heartbeat. All the while, I am calling and texting Brian and getting no response.

My doctor walks in and the nurses soon take Sunshine to get a popsicle which she agrees to after I promise her I am going to be ok. My doctor checks me and I am 2cm. I am starting to have contractions but they are not awful. He explains that it was most likely another placental abruption and they are going to be going in to do a c-section immediately. As far as I know at this point, no one has gotten a hold of Brian so I text him “going in for a c-section at the hospital” or something to that effect. Come to find out his phone was not receiving calls and he felt the text come in but was in the chair getting his haircut so he figured he’d look at it when he got done, which is what he did. When he got the text he tried to call me, couldn’t get me of course, but eventually called his mom and she filled him in on the situation. He rushed to the hospital as quick as he could.

Meanwhile, I had gone into the operating room and was trying to stay as calm as I could. They had to put in the catheter before they gave me the epidural and it was oh-so-painful. Then they gave me the epidural and after the initial pain it was much better. I tried to stay focused on prayer while they did the surgery and truthfully the calmest moments were when I could do that, but I definitely had some moments when I was freaking out a bit. However, my doctor and the nurses then and later were telling me how well I handled the situation. They were amazed at how calm I was through it all. I am still not sure how I handled it so well, cause inside I was a basketcase.

They kept updating me throughout the surgery and then I heard Sugar Plum cry for a quick moment after they resuscitated her. Her apgars were very low immediately but they quickly jumped back up. The doctor (Dr. Claflin) who took care of Mister Man in the NICU was actually helping the RN’s with everything via skype or something similar. As soon as she was breathing again they did their thing and then let me see her for a quick second before she was rushed to the NICU.

I was still in recovery when Brian arrived. Of course I sent him to the NICU to check on Sugar Plum because there was nothing he could do for me at that time. He went back and forth and brought me updates and pictures each time. Soon, I was told she needed to be transported to St. Lukes on the Plaza for their higher level NICU. I had been settled into a room soon after and with family around they brought Sugar Plum by to see me before she had to leave. It was so hard to watch them wheel her out and know that she would be 30 min from where I was.IMG_1962IMG_1963

Brian followed the transport to the plaza and stayed there until late that evening. Then he went home, got some clothes and toiletries and headed back to St Lukes East to spend the night with me. It was a long night of worry, pumping and not being comfortable enough to sleep. I think we both got about an hour that first night.

The next day Brian got up and headed to the plaza to see how Sugar Plum was doing, while I stayed at East and waited for them to give me a pass to go see her. That afternoon, they let me escape and go to the plaza to see Sugar Plum with the strict instructions that I could not be walking/standing for long periods of time and that we would only stay a few hours. We abided by the no walking and standing but we probably stayed longer than they would have liked. In fact they didn’t give me any pain pills to take with me so I was supposed to get back to get another round of those, but since I was in the system at both hospitals the nurses and pharmacist found a way to get me a dose while I was there so I could stay a little longer with my baby girl.

It was great to see her even if it was only for a short time.

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The next day, however, I was released early so I could be with Sugar Plum. We got to spend the whole afternoon with her, hold her and then headed home to get a good nights rest (if you call waking every few hours to a pump a good nights rest).

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We’ve been back and forth to the hospital everyday now and thankfully we’ve had a ton of wonderful family and friends helping out. It’s been hard to balance everything but I think we have a pretty good system going on now. We are able to spend time with Sugar Plum, spend time with the other kiddos, and still have family time between the rushing to practices and games. It’s a good thing I enjoy being busy!IMG_2058IMG_2715 IMG_2541 IMG_2757 IMG_2828 IMG_2816

The first few weeks they had a ban on kids under 18 coming into the NICU because of a bad flu that was going around the area. This meant is was a few weeks before Sunshine and Mister Man got to meet their baby sister (aside from the few minutes before she was transported). It was such a beautiful moment when they saw her for the first time.   The kiddos have even gotten to spend some time with Sugar Plum as well. It’s been nice to be able to have our family together.

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We have been so very humbled by the people who have offered to watch Sunshine and Mister Man. Those that have taken them for a day(s) or just a few hours. And those who have brought food over, sent gift cards and just gone out of their way to make sure we were doing ok. It is so amazing how people will help those in need, without needing to be asked. We are very blessed to have such wonderful family and friends in our life. Thank you for everything!

And all of you who are praying, we really appreciate the thoughts and prayers. We’ve even had people tell us they had people who had never met us praying for us, and there are people in our church we had never met that have come up and told us they were praying for us as well. Prayers move mountains. I am a firm believer that she is doing so well because of your prayers. We still have a lot of hurdles to overcome so please keep praying. Thank you!

Introducing Mister Man

Introducing Mister Man

As first posted on our family blog

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Nonnie, Sunshine and I were on a shopping trip at the Lake of the Ozarks. Planning to shop for a few days in hopes of finding some new clothes for Mister Man. On Tuesday, we were making our way around the outlet mall. After a few hours of shopping and a restroom trip, I had some bleeding.

We immediately called my doctor in KC and his nurse instructed us to go to the hospital at Osage Beach. Nonnie dropped me off at the Emergency Room entrance. She went to park while I was wheeled up to and checked into the maternity section of the hospital. They asked a bunch of questions, hooked my up to monitors, and did an ultrasound. The doctor on call (Dr. Rene ???) showed up and after looking at the ultrasound and doing an examination, found that the bleeding was caused by the placenta starting to tear away (placental abruption). I was a few cenimeters dialated and was told I was in preterm labor. I was given a steroid shot (which actually hurt more than the contractions) to help develop Mister Man’s lungs and they started the IV’s, etc. We were informed that Osage Hospital did not have the facility to care for a baby born at 31 weeks so we were going to be transferred to Columbia Regional in Columbia, MO as we did not have enough time to be sent back to KC.

After what seemed like forever, but was really only about an hour or so, the helicopter arrived to transport me to Columbia. After I was loaded up and we were about to be on our way, Nonnie took Madi and left to meet us at the hospital. Brian was on his way from KC (luckily he had started his drive as soon as he knew we were at the hospital).

It was my first helicopter ride and quite an interesting one. It was very cramped and my contractions were getting closer together and much more intense. I was extremely worried I was going to have Mister Man on the 30 min flight. Luckily the two men on the helicopter were super nice and supportive through the whole thing.

We finally arrived in Columbia at 7:30pm and Brian was there waiting for the helicopter to arrive. He immediately came to my side as I was pushed through the hospital to the maternity section. When we arrived, they started asking questions and putting wristbands on between contractions. I signed a bunch of papers, but for the most part it was just a big blur.

Dr. Greene came in and let us know that my labor was not progressing quickly and they were concerned that if we waited too much longer it could be traumatic for Mister Man. We were told they would like to prep me for a c-section, while still monitoring my labor. If my labor progressed rapidly enough they would let me push and not have to do the c-section, however if it did not a c-section was the best route. Knowing this was the best for Mister Man we agreed.

We were taken into the OR and I was prepped for a c-section. The doctor said they were going to watch the baby on the monitor to be sure he doesn’t get distressed. For the next 2-3 minutes, two surgeons stared at the monitor with scalpels in their hands ready to make the incision. Then Dr. Greene announced that Mister Man’s heartrate was higher than he would like and he would like to proceed with the c-section. About 2 minutes later at 8:25pm, they pulled Mister Man out of my stomach and I heard a couple small cries as he was rushed out of the room for medical treatment.

Because they rushed him out of the room so quickly, I had no idea if he was even alive. I was very emotional and needed to know that my baby boy was ok. So at some point, as they were finishing sewing me back up, I asked Brian to go check on him to make sure he was ok.

Brian returned and showed me a couple of photos he had snapped on his phone and told me that we had a beautiful baby boy and he was doing just fine. He told me how proud he was of me for being so strong through all of this and then told me that they had already intubated Mister Man because he needed a lot of oxygen support because his lungs were so underdeveloped.

Once they finished sewing me up, they wheeled me into the recovery room where I spent the next hour getting feeling back in my lower body. I didn’t get to meet my baby boy until almost midnight, I had to rely on updates from Brian who kept going down and checking on him. It was an amazing feeling seeing my little man although a bit hard because he had so many tubes attached to him. But he was beautiful and breathing and although he was only 4lbs, he took a huge part of my heart. I was in love.

The next week was filled with many ups and downs, but an overwhelming majority being ups. Mister Man progressed beautifully. It seemed like every morning when we would come into see him there would be some report of progress from the night before. In fact he progressed so quickly that on Friday, the director of the NICU at Columbia Regional was already talking to us about transferring Mister Man back to Lees Summit the following week, which we had told him we would like to do as soon as he was stable enough to make the trip.

Mister Man continued to progress throughout the weekend, and we found out on Monday that they planned on arranging a transfer on Wednesday to Lees Summit, barring Mister Man’s condition getting worse. On Tuesday afternoon, we found out that the transfer had been scheduled for 8:00am on Wednesday and we needed to be at the hospital at 7:30am ready to hit the road. Dr. Pardalos was instrumental in arranging the transfer. He worked coordinated with the hospital in Lees Summit, our insurance company and the transport team to make all this possible.

Wednesday morning the transfer team loaded him onto the ambulance, I rode with him while daddy followed closely behind. We made it to St. Lukes East in Lees Summit at 10:30am. They got him checked in and positioned in his spot in the NICU where he has remained since.

We have been spending most of our days at the hospital with him. With family coming by to see our little man from time to time.

As for Mister Man’s current condition, he now weighs 4lbs 1oz. He is on little to no oxygen, varying on the time of day. They are hoping to have him weaned totally off oxygen soon, but it’s up to him. He is eating 35mL of my breastmilk every three hours through a feeding tube and is digesting incredibly well. We spoke to one of the neonatologists and were told in no uncertain words that they did not consider Mister Man to be an at risk preemie. That he is adjusting to life outside the womb remarkably well and they anticipate his condition to continually progress over the next few weeks. They do expect him to be in the NICU for the next 2-4 weeks, until he is physically ready to come home (open crib, controlling his temperature and eating everything by mouth).

After a little over 1 month in the NICU we got to take our little man home.

Since we have been home things have been going great! Mister Man is on an apnea monitor to monitor his heart rate and breathing patterns. So far he has only had a few alarms for his heart rate, but they have all been quick and self resolved. Hopefully as the days go by, he will have less and less. There have been a few days without any alarms so there is hope it will be soon! He will be on the monitor for at least a month and we will see after that. It will depend on his progress. I have to say, after watching the monitors at the hospital, it is actually kind of nice having the monitor here, since I know he is breathing and his heart is beating correctly. Luckily, he has been quickly, self resolving all of the alarms so I have not been too freaked out!

Otherwise, he is doing great! He sleeps for 2-3 hour stretches, only waking to eat which is kinda nice! Especially at night! Thank you NICU nurses for starting this strict schedule with him! He is eating great and gaining weight. He now weighs 5lbs 1oz and is 17.5″ long! He is getting too long for the preemie outfits. I put him in a newborn size and it was huge around the stomach/chest but almost perfect in the arms and legs. I have a feeling he will be quite tall!