Sunday, September 16, 2018

NICU

(If you want to see pictures you will have to head to my private blog. If you want an invite let me know and I will gladly send you one.)

During my 3 week stay at the hospital I had a lot of time to think about the future and unfortunately the NICU was likely going to be a part of it. I'm not going to lie, I was terrified. All of the unknowns were scary. My husband is a Neonatologist (NICU Doctor) so I have heard many stories (both good and bad) about babies in the NICU. I never imagined I would ever have to experience it, nor did I want to.

My husband was able to take me on a wheelchair tour of the NICU during my hospital stay and I didn't think it would phase me that much (I had seen bits and pieces of NICUs in the past). Boy was I wrong. Once I got back to my room and was alone, I broke down. The thought of my sweet baby being poked and possibly struggling to live and breathe scared me so bad. Not being able to hold him, skin to skin, right after he was born, not having my mom in the room when I delivered (because I had to deliver in the OR because it was closest to the NICU), not having my sweet baby with me 24/7 and leaving him in someone else's care, not being able to snuggle him whenever I want and for however long I wanted, and not being able to bring him home from the hospital with me. So much was going to be different this time and I did not like it. I was afraid.

I was trying so hard to make it to 35+ weeks in hopes that perhaps some of those worries could be avoided (baby automatically goes to the NICU if it is less than 35 weeks old). This didn't quite happen because of worries the high risk doctor had. During my usual morning non stress test, everything became real. He did not pass his non stress test (not unusual) and he did not pass his biophysical profile test (this was unusual), therefore we decided it was best to get him here. I was 34 weeks (which was the doctor's goal) and at 34 weeks most babies do really well.

I had only been back to my room for a few minutes when my wheelchair ride had arrived to take me to delivery. The time had come.

It was such a long night of labor (natural) but a very quick morning.

Truman came flying into this world (nurse had to deliver his head and on call doctor delivered his body because he came so quickly my doctor didn't quite make it in time). The moment I saw my sweet boy I knew he had Down Syndrome. I just had an overwhelming feeling. A feeling of peace and incredible love for that sweet angel who had decided he wanted to be a part of our family (earlier than planned). To my relief he came out screaming. My heart was so incredibly happy to hear that cry. What a blessing. I just knew everything was going to be okay. His dad was right there making sure he was given the best care and I knew he was safe. Once I was fixed up they wheeled my bed into the next room to meet my sweet boy. The nurses had an oxygen mask over his sweet face making sure he was breathing properly. He had bubbles coming from his mouth and a mark on his face from the mask, but he was absolutely perfect.

After my short visit I went to my room to recover while Truman was transferred to the NICU. From here on out I was taken to the NICU every three hours to snuggle (kangaroo care) and try to nurse my sweet boy. It was hard to see my baby with tubes and cords all over, and not knowing constantly how he was doing. Luckily my husband was working and kept me pretty well informed and was making sure he was getting the best care. What a blessing that was (for me at least. His story might be completely different and full of stress).

Being a NICU mom was hard because as I was wheeled back and forth from my room to the NICU, I would pass by mom after mom all with a baby in their arms and I would yearn to have my sweetheart in my arms too. Though this was difficult,  it was also okay because I knew he was in a good place and he was being watched over constantly, by both nurses, doctors and our Father in Heaven.

Looking back on everything, I imagined it all would be so much worse. It really wasn't as awful and emotional as I made it out to be (though it was definitely less than ideal). When I didn't get to hold my baby immediately (though I wished I could have) everything was okay. It was very different from all of my other children's births, but that was it... they were all different in their own ways.

On to the NICU. Tell you the honest truth... the NICU was kind of a blur. We just survived it. I drove back and forth at least twice a day to try and nurse my baby and coax him into eating. I would stay for 1- 4 hours at a time and just soak in all the snuggles. He was the seriously sweetest little cuddle bug ever. The nurses adored him. It was very difficult for me though, because I was being pulled in two different directions. My heart was in two different places. I missed my other 4 sweet kids that I had been away from for the past 3 weeks and I yearned to spend time with them again, yet it seemed like I was gone all the time. My kids had a difficult time with this as well and suffered some PTSD every time I would leave them to go to the NICU. When I would come home I would have just enough time to pump a bottle, take a much needed little nap, and then turn around again and head back to the hospital. I think that was the hardest... wanting to stay at the hospital with my new sweetheart, yet wanting to be home snuggling my other babies that I had desperately missed.

Most of the time that drive was spent on the phone with my mother telling her any progress Truman had made and just talking about my angel, or it was spent with tears flowing due to all the emotions I was dealing with. The day I found out Truman had Down Syndrome I called my mom on the drive, like usual, to tell her the results of his tests. Let me tell you, that was not a good idea. I was all sorts of a mess. After hanging up the phone with her I worked frantically to calm myself down and gain some composure before arriving back home to greet my kids and In-Laws. Apparently I was more worried about that than I was about my speed and I got pulled over for speeding. Yikes! The cop could obviously tell I was having a rough day and after asking if I was okay, the tears started to gush again. There was no controlling them. After learning about my day, he was kind enough to let me go and wished me well. I wish I could thank him, because I am pretty sure a ticket would have broke me that day. Too much for my emotions to handle.

Truman spent 2 weeks in the NICU on a small amount of oxygen and working on his feeds, as well as spending time under the lights in order to get his jaundice regulated. We visited him often and had several visitors. Half way through his NICU stay his dad and siblings came down with H3N2 (I think that was it, but am not sure). High fevers for days, a terrible cough, body aches. My poor Ezra had it the worst and I just wanted to be there for him during this time of helplessness and snuggle him, but I had to stay away so I could keep visiting my baby and keep trying to get him to eat so he could come home. Brandon got it from him. This kept Brandon from Truman for almost a week and it was hard on both him and me, because I needed his expertise to ensure Truman was getting the proper care he needed to get him home. Brandon started to get better and then it hit me, and it hit hard. This kept me from my Truman and it hurt my heart so much. Thankfully Brandon was able to visit him and get things rolling on getting him home. The main thing keeping him in the NICU was not being able to eat full feeds from a bottle. Once he figured that out he would be able to come home. Brandon told them to use a faster flow nipple and sure enough a few days later he was eating from a bottle like a champ. I guess he would just have to work too hard with the slow flow nipples and it would wear him out before he could finish. Same with nursing, it was just too much work with the low tone in his mouth.

After several days I got better and Truman was eating so well that he was going to be discharged. We were all planning to pick him up from the hospital, when sickness hit again. This time it was Bridger so I made the trip myself and got to bring my baby home. Happiest day ever! He came home on oxygen, which was not ideal, but I was just happy to get him home and be a family again without being pulled in so many directions, that it didn't matter that oxygen came with him. Life could finally start to normalize.

Sunday, September 9, 2018

Down Syndrome Diagnosis

I have been asked several times if we knew before Truman was born that he had Down Syndrome.

The short answer is... kind of, but not for sure.

If you want the long answer, then get ready for a long story.

During our 20 week ultrasound, we were told there was a chance he had Down Syndrome because of a thick nuchal fold (7mm+), but the doctor said it was a "soft marker" and though it did increase our chances of him having Down Syndrome, it was only a "SOFT marker" so we shouldn't stress about it. There was also a second and even "softer marker" of a few little spots in his kidneys that the high risk doctor said he probably shouldn't have even brought up because it was such soft marker, and normally means nothing.

When I got home from my ultrasound I did a little math. Turns out that, although the chances of him having Down Syndrome had increased, they were still less than 1%. To me that seemed silly to even worry about... 99% chance he did not have it. We chose not to do further testing because we didn't want to risk him coming at 20 weeks and possibly losing him by getting an amniocentesis (the only way to get a for sure answer) and the blood test would only give us a "for sure he doesn't have it" or a 75% chance of him having it. Still wouldn't give us a clear answer unless he did not have it (which for some reason I thought was the case. I thought we should just get the blood test because it would come back negative and give us a peace of mind. Silly me. We talked about it though and decided to leave it as is and not do further testing. We did not want to stress more if the outcome was 75% chance of him having it and would rather just find out when he is healthy and we can hold him.

Down Syndrome was always in the back of my mind, but most of the time I had convinced myself he didn't have it. My sister-in-law had an ultrasound with a thick nuchal fold a few years prior and was worried about the same thing, but her baby did not have Down Syndrome. I guess I assumed it would be the same for us.

There were also those times I would convince myself he had it. I never spot/bleed when I am pregnant, the only times I have ever were the times I lost my babies via miscarriage. With Truman there were times earlier on when I spotted and I thought for sure I would lose him too. I am so incredibly grateful this was not the case this time, but this also worried me. Perhaps my body knew something was off. This was once convincing factor that he had Down Syndrome.
At another ultrasound, later on in pregnancy (after the 20 week ultrasound), we saw Truman stick his tongue out several times. I had never seen that before on any of my ultrasounds with the other kids and at first didn't think anything of it, only how adorable it was. However, later on that day Brandon had mentioned to me how he thought he probably had down syndrome because babies with it tend to stick their tongue out a lot. My heart sunk and I just knew he must have Down Syndrome. However, when I googled "baby sticking tongue out on ultrasound" (Down Syndrome definitely came up) I read that sometimes babies lick the placenta (gross!) so I tried to convince myself that was the case this time.

When my water broke at 31 weeks I was in shock. I didn't think it could possibly be my water because all of my other babies couldn't be convinced to come before their due date no matter what I did (with the exception of Bridger at 39 weeks). After the third or fourth time of soaking myself and bed, I decided my water had really broken and I woke my husband and texted my mom (who thankfully was sleeping in the basement that night because she was visiting). Later when I had been admitted to the hospital, I had an ultrasound to check my fluid level and to everyones surprise it was at a high normal level even though I had lost as much water as I had. This was such a surprise that the high risk doctor even wondered if my water really had broken and told them to recheck. Somehow it seemed I must have had too much amniotic fluid and that was why my sack broke (known as polyhydramnios). A little while later my husband (also a NICU doctor) was talking with one of my friends and she asked if there was anything that could cause or was associated with extra amniotic fluid. He said there were some things, but he didn't ever say anything to me because he didn't want to worry me. After hearing this, of course I went and googled Down Syndrome and whether or not it was associated with polyhydramnios. Of course there were various reports on the relationship between polyhydramnios and chromosomal disorders and an increased risk for them. There we go again... I had quite the rollercoaster ride of whether or not I thought he had Down Syndrome. I was never convinced enough to do more research on Down Syndrome though so that I would be prepared if he did have it. I just assumed he wouldn't even thought there were so many signs telling me he did have it. This is odd to me. Why did I not research it? I think, perhaps I was scared of getting the Down Syndrome diagnosis and was already dealing with enough (being in the hospital on bed rest, away from my kids and Christmas time). Maybe it was a way to keep myself sane and keep myself from breaking down completely. I guess maybe it was a blessing in disguise.

When the time came and Truman was born, I almost knew instantly that he had down syndrome. From the moment I saw him I something in me knew and it was okay. I was so in love with that sweet boy and nothing would change that. The more I got to know him and got to see him and snuggle him, the more I was convinced he had Down Syndrome. Brandon, on the other hand, was more and more convinced he did not have it. If you don't know, Brandon is a neonatologist and he does see babies with Down Syndrome quite often. Truman did not have the Simeon crease (one single crease that extends across the palm of the hand) that is often found in people with Down Syndrome. His toes were not splayed and his facial features didn't seem to present Down Syndrome too much. Any time I nursed him and saw him from the side I thought I definitely saw it.

I was so in love with this sweet boy and so was everyone that saw him. Such a sweet, beautiful boy. We waited for test results to come back. Three days after he was born (Dec. 30th) the whole family (Mom, Dad and kids) was visiting sweet Truman. While I was holding him and the kids were observing him in awe, Brandon checked the computer to see if results were in. Sure enough, there they were. He whispered so sweetly in my ear "He has Down Syndrome". I think my heart burst.

Once we got to the car the tears started flowing. What now? What is life going to be like for my amazing little superman? I had so much love for him and felt so blessed to have him in my life. This was just a new and unfamiliar world for me and I hoped I could be the mother he needs. It was a little overwhelming for a while, but I felt incredibly lucky. I knew all along he was special. He was my angel baby.

Monday, April 30, 2018

Truman's Birth Story

At 1:30am on Dec 8th, 2017, as I laid in bed fast asleep, my water broke. I woke up soaked and thought I must have peed the bed because there was no way my water broke, considering the fact that I was only 31 weeks and 4 days pregnant. I got up and cleaned myself up and went back to bed on a towel. Within the next 15 minutes I was soaked again. So I cleaned myself up one more time and decided if it happened again, my water was definitely broken and if not, maybe I peed myself twice. Sure enough within the next 15 minutes I was soaked a third time. I finally woke Brandon up and told him my water had broken. With tears of fear running down my cheek he tried to calm me and told me it was going to be alright. He then packed my bag while I laid in bed telling him what to pack. Luckily for us, my mother had been at my house the day before (dipping chocolates) and was asleep in the bed downstairs. I texted her telling her my water had broken and she couldn't believe what she had heard. Thankfully she was able to be with the kids the rest of night and the next foreseeable future while Brandon and I headed to the hospital.

Sure enough, my water had broken and I was admitted to the hospital where they started an IV (took them 4 tries which is crazy because I have big veins and no one has ever had any problems with them in the past). I then got my first steroid shot in the bum (it hurt so stinkin bad!). They then started me on a 24 hour dose of Magnesium (thankfully it didn't bother me too much). I was only dilated to a 1 and 50% effaced so that was good news. I then headed to MFM (Maternal Fetal Medicine) to get an ultrasound to see how much fluid I had left and to check on baby. Unbelievably, I had a high normal amount of fluid (normal is 5-24 and I measured at 23). The doctor didn't believe my water had broken so he made them double check (haha! It definitely had broken). 12 hours later I got my second steroid shot (ouch!). Once my 24 hours was up they stopped the magnesium and I got to move to Postpartum/Antipartum which had much better beds! My labor and delivery nurse even delivered my recliner from my first room because it was WAY nicer than the ones in postpartum and she thought I might be there for a while and she knew how much I liked the recliner (I slept most of the night in it because it was much better than the bed).

After spending 3 weeks in the hospital on bed rest (we even celebrated Christmas at the hospital), and getting daily (stressful) NSTs (Non Stress Test) and BPPs (Biophysical Profile) (if baby didn’t pass the NST), the day had finally come (one week earlier than we hoped). It was the day after Christmas… Baby didn’t pass his NST that morning (10am) and then only got a 6 on his BPP because they couldn’t see any breathing (he had been getting 8s every other day). The high risk Doctor recommended since we were already 34 weeks (this was the goal) that we should call it quits and get baby here. He didn't think it was worth taking the risk of waiting. They contacted my OB and discussed it with him to see what he thought and Brandon talked to both the high risk doctor and OB to help make the decision on what to do. We both prayed to know whether this was the right answer or if we should hold off a little and see what the next day brought. B loaded the kids in the car and headed to my Dad’s to drop them off so he could make his way into the hospital. After prayer, we felt like this was probably the right answer and thought baby should do alright because he made it to 34 weeks. If we were to wait, who knows what could happen. 

They took away my water and told me no more food or drinks until after baby arrives. Ugh! The nurse dropped me back off at my room and I started packing (after calling my parents and B to update them). Less than 5 minutes later my nurse was back with a wheel chair telling me they were ready for me. I was so confused… “who was ready for me?”. Labor and delivery had a room ready and they were waiting for me. Just like that, off I went, headed to have this sweet baby.

He was transverse on ultrasound (head lower right side vs the day before when his head was upper left) I had that morning which meant there was a very good chance I would need a c-section. (He literally went back and forth from breach, to transverse, to head down the entire 3 weeks.) Because my fluid levels were at least at a 9 (still a normal level, even after losing so much) the option of getting a version was available. So of course I opted for a version to see if we couldn’t get him head down and avoid a c-section.

After signing papers for emergency c-section (because version could cause problems and create the need for an emergency c-section), they gave me a shot to prevent contractions during the version and started an IV. My OB did the version around 1:00pm and was successful at getting baby’s head from the right side to head down!! It was actually quite simple. All the Dr had to do was place his hand firmly above where his head was and gently and slowly move it downwards. Baby feels it and thinks it is the ribcage and moves on his own. While they did this, they kept doing an ultrasound to ensure baby’s heart rate didn’t drop and if it did they would ease off a bit. It worked so great! I was definitely one happy momma. There was a chance baby could still move because he wasn’t fully engaged, but we were hopeful that the contractions would keep him down. My OB checked me and said I was dilated to a 1.5 and 50% effaced, baby at station -3. Then at 1:30pm we started Cytotec. It is just a tiny white pill that I put in the side of my mouth until it dissolved. It is meant to soften the cervix. Contractions started coming regularly every 2-3 minutes. We were in business. They weren’t painful at this point and I was very pleased at how well the cytotec worked.

The nurse checked me again at 4:20pm to see if there was any progress. Baby was at a station -1 and the nurse could feel his head. I was dilated to about 1.5 still and 70% effaced so we made progress which is fabulous! My nurse gave me another dose of cytotec at 4:30pm and then a new nurse came it at 5:30pm.

The nurse checked me again at 7:30pm. I was still effaced to 70% and station -2 (this can be different nurse to nurse), and dilated to a 3. So progress is being made. Baby seems to be doing well, but every once in a while he has a decel (heart rate slows down for a bit) and it worried me, but he seemed to be doing alright. He was moving around a bit too which was good for momma to feel.

Started pitocin at 8:00pm. I thought for sure things would start moving along and we would have a baby before midnight, but I was wrong. Contractions started coming regularly, but thankfully I wasn’t in much pain yet and I was able to get a little bit of sleep, but it seemed like every time I fell asleep when I would wake up I would notice baby’s heart rate had decelled. This seemed to happen every time I slept and I was afraid if it kept happening they would say baby was in distress and send me to get a c-section, so unfortunately I was unable to sleep much even though I was exhausted already.

They checked me at 11:30pm. I was hoping for a little progress, but unfortunately that was not the case. I was still dilated to a 3 and only 80% effaced. I asked for a birthing ball and tried that in order to get baby’s head to drop down in better and engage more in order to put pressure so I would make more progress.

Since Brandon was suppose to work a 24 hour shift the next day, he laid down on the couch to try and get sleep before baby made his grand entrance. This was what was best, but I was left to labor by myself, and that stunk. I tried to be as quiet as I could so i didn’t wake him, although any time I would adjust my bed a little he would wake up because it was so loud.

I was starving by now which definitely did not help out my situation at all... tire, hungy, and in pain. At 2:30am things started to hurt really bad. For one hour I was hurting so badly that I thought for sure when the nurse checked me that I would be at least dilated to a 5. I was really hoping for progress, because if I had to deal with this pain for a whole lot longer, I wouldn’t be able to do it, and I really wanted to make it to a 5 before an epidural because I didn’t want to chance slowing progress down due to the fact that things had already been moving along so slowly. I thought they would call it quits and give me a c-section after all this, and I was not okay with that. 

At 3:30am the nurse checked me... only dilated to a 3.5 and 85% effaced. UGH!!!! That was the worst news yet. I was practically in tears, and wanted to tell the nurse my pain level was at least an 8, but I didn’t want that epidural yet so I said only about a 6. I then asked when the next time I would be checked was because I could not wait another 4 hours before being checked again. She said I would get a new nurse at 5:30am and she would check me then. Thank goodness. 2 more hours of this horrible pain and hopefully then I could get an epidural.

After the worst 2 hours of my life (LOL, so much pain!) The new nurse came and checked me. If I hadn’t progressed I was going to be so upset. Thankfully at 5:30am I had progressed to a 6 and was 100% effaced!! Hooray! Happy day! They called my OB and told him to head in. Now I had to decide if I was going to get an epidural or just suck it up and finish this off without one. Since this was going to be my last baby and was by far my smallest (plus with Azaleah I went from a 5 to a 10 in like 5-10 minutes), I decided I had endured the last 2 hours so why not finish it off (unless things went longer that expected). About 5 minutes after the nurse left the room I thought I was feeling a little pressure and got a little paniced so I told B to call the nurse in to check me again (I could hardly talk due to my contractions. It was all I could do to not cry.). I knew it seemed silly because she had just checked me, but I didn’t care. It felt like B was so slow to call the nurse (though I'm sure he wasn't). I really started to panic. “PLEASE CALL THE NURSE!! NOW!!” She came in and checked me and sure enough I was dilated to a 9. They quickly unhooked my bed and pushed me to the operating room (because it was right next to the NICU and they wanted to be able to get baby to the NICU as quickly as possible once he was born.) The minute I get to the OR my body started pushing. There was not anything I could do to stop it. They told me to breath quick short breaths and try not to push until the Dr got there, but I seriously had zero control of my body. The told me to keep my legs shut to hopefully keep him from coming until the Dr came. I couldn’t stop pushing and kept telling them… “HE’S COMING!! HE’S COMING!” They had called the in hospital OB and he was headed our way. Finally after I kept telling them his head was there and he was coming the nurse finally spread my legs and caught his head just in time. Then the in hospital OB caught the rest of his body. And not long after that my OB walked in, just in time to deliver the placenta. One thing I was really, really hoping and praying for was that he would come out and give me at least one little cry si I would know he was well, and he definitely did that. He was crying his little heart out. Made me so happy. The Dr said, “where’s the premature baby?” because he was so big. The minute I saw him, I was in love. The umbilical cord was really short, so we are lucky everything turned out as well as it did. I can’t believe he was able to flip from breach to head down and back again so many times. He’s our champ. He was born at 6:04am and weighed 6lbs 7oz and was 18 inches long. They had the cpap machine out to help him breath, but he looked really healthy. We were so happy to have our sweetheart here safely. I felt so amazing afterwards and almost told them I didn't need any pain meds because I felt great. I was so happy I could feel my legs. I wish I would have gone epidural free with my last two babies. It was incredible.