Chillin on the Vent

Baby Cohen has had an uneventful day. She is just chillin on the vent. It is still breathing for her, but she is trying to take a few breaths. She is also breathing room air, which is 21% oxygen; a good thing. She is on day two of at least seven for her antibiotics. This morning her x-ray looked better; her bowels are less swollen and there are still no signs of gangrene or perforations in her intestines. She did have to get another blood transfusion today; this makes number three. They seem to make her feel a lot better, so I actually feel good about them. She is so small that they have to replace the blood they take out to use for testing.

We can't believe out of all four kids, our sweet 26 weeker has the most hair! She may have come out looking like Rapunzel at the rate is was growing :) While yesterday was a hard day, we still had joyful moments. Brian was able to check her temperature, change her diaper and even hold her in her isolate so the nurses could change her bed. He was so happy and I got some great pictures. 

My favorite from the night: Daddy holding his girl in the isolate while looking at her

We still need your prayers. Thank you for loving and supporting us :)

Downhill on the NICU Rollercoaster

We found out last night that Cohen was having bouts of apnea and that there was more blood in her stool. Her heart rate was also decreasing. They did blood work and X-rays. 

We received a call from the NICU at 5 am telling us that Cohen had to be put back on the ventilator. They decided to start antibiotics because they suspected that she had an infection. 

Brian and I arrived at the hospital today and spoke with the doctor. Cohen is completely apnic right now, which means the vent is doing all of her breathing for her. She is too tired and feeling too poorly to breathe. Additionally, her X-rays showed that she has a lot of gas in her intestines, but thankfully there has been no perforation at this point. Her bloodwork did show that she has an infection. They are going to be conservative with her treatment and are going to treat her as though she does have Necrotizing Entercolitis (NEC). Luckily, her bowels are not dying right now-- this is what happens with NEC. They will completely stop her feedings and put a PIC line (long term iv) back in for at least 7-10 days. She will be on very strong antibiotics for this timeframe. The doctor feels confident that this will make her feel better. 

Last night was my first super rough night since I've been home. This is so scary at times. People have told us that this NICU journey is 3 steps forward, 2 steps back; but man is it hard bring in the throes of it. 

Please keep praying for our girl. Pray that she feels good enough to start breathing on her own, again. Pray that her intestines will heal- as she will need those her whole life and pray that our girl can grow big and strong enough to come home, join out family, and love God. We appreciate you all. 

Chelce

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2 1/2 Weeks Later

Cohen is 18 days old today. It feels like we just had her yesterday, but also feels like she has been a part of our lives from the beginning. We were told if she made it through the first 7-10 days in "reasonable condition" that she had a good chance of surviving. She was on a ventilator for the first week and a half. She was extubated twice during that time; first, because they thought she was doing well enough and second because our little booger extubated herself. Both times she needed to go back on the vent. She was finally extubated for good about a week ago. She is using a nasal CPAP (Continuous Positive Airway Pressure) right now. She is breathing room air, which is 21% oxygen, but just needs a little extra pressure to fill her lungs. Preemies lungs tend to want to stick together since they are so underdeveloped. Here is her CPAP. It is actually scarier looking than the ventilator, but it means she is progressing!

She was tipping the scales at 2 lb. 4 oz this morning. The doctor let me know that she may lose a couple of ounces in the next few days do to some feeding readjustments. Cohen gave us our first scare two days ago. We hate to see the NICU calling anytime other than their routine morning call; and we got a call a couple of afternoons ago letting us know that Cohen had blood in her stool. This is never a good sign, but in Preemies, it can be a sign of a very dangerous infection known as NEC. She had been tolerating her feeds very well up until this point. They stopped the feedings completely and had to put an IV back in her little arm to give her nutrients. They did 3-4 x-rays over the course of two days and found nothing significant at all. She restarted feeds yesterday with a different formula (mixed with my --almost-non-existent-- breast-milk). They are very slowly progressing her feeds, but she is doing great so far. She has had more bowel movements and no blood! The doctor said sometimes that happens and there is really no reason. She must have strained to hard:) I am cautiously optimistic about it. It seems like NEC is not an issue right now, but it is still scary to me.

Cohen and I have been able to Kangaroo twice (that is a NICU term for holding her skin to skin for a set amount of time). Studies have shown babies how Kangaroo tend to do better in every aspect of getting better: put on weight faster, eat better, interact quicker. We are hoping Brian will be able to do it tomorrow. Here is a picture of us finishing our Kangaroo Care. This helps to show her size...

This too-- Daddy's wedding band on my chest next to her hand. If you have a ring, look at it. Her hand is barely bigger.

The nurses already love her. They all say she is "feisty". She cries and moves around constantly. We have a video of her crying while the nurse took her temperature. She hates being messed with. I don't blame her. 

I am heading up to the hospital now to visit. I will update again in a couple of days. Thank you for prayers. We still need them!

How we got here.

We have 3 beautiful children. Brooklyn is 5, Carter 3, and Brayden is one. We were shocked to find out on May 6, 2011 that we were expecting our 4th child. This was the day after our baby had turned one, we had just downsized our home 2 months prior, and in the process sold or donated all of our baby and maternity items. We couldn't believe it.

We scheduled our OB appointment to be at 8 1/2 weeks gestation based on my last cycle. I had some spotting right at about 7 1/2 weeks so I went in a few days early. During my ultrasound, we only saw a "fetal pole"; there was no heartbeat. I was sure of when my cycle had been, so we thought that I might be miscarrying. The tech made sure to tell me that the baby's sac looked normal for about 5 1/2 weeks gestation. My doctor said we were going to do bloodwork and we wouldn't do anything until I had another ultrasound a week later. He said at that point we should definitely see a heartbeat.

When I went back a few days later for my second round of blood work, one of my hormone levels was very low. I was told that typically with a progesterone level of 6, a pregnancy was not viable; we were still waiting for the ultrasound that next week.

I went in for the ultrasound and everyone seemed very serious. The tech asked me if I wanted to know what she saw or if I wanted to wait for the doctor. I told her I would be able to tell and she started the ultrasound. We were all surprised when we saw a beautiful tiny little blob with a flicker right in the center. My sweet baby was alive and her little heart was beating strong.

I was put on medicine for my low progesterone levels and told to come back for my originally scheduled 1st appointment just a few days later. I did this and met with my favorite Dr in the practice, Dr. J. He said we had to talk about my blood work. Apparently during my last pregnancy, the one with Brayden, I was sensitized to something that he carried on his red blood cell. This "antigen" was something my body didn't carry so my body then formed antibodies to fight it off. He informed me I had the "Big E" antibody. The way they measure the danger of the antibody is called a titer level. The higher the titer, the more dangerous for the baby I am currently carrying. The antibodies in my blood have the potential to cross the placenta and break down the red blood cells of any baby who also carries the Big E antigen, like Brayden did. I was told that my pregnancy was now considered high risk. They say the critical titer (the point where the refer you to a specialist) is 1:16. Mine was 1:32, so we were told that we would be meeting with the perinatologist.

We met with the peri for the first time at 16 weeks. We had an hour and a half long ultrasound. It was at that point we found out our sweet little baby was a GIRL. I was absolutely over the moon. Brian was, too. We felt like a little girl would complete our family perfectly. We also found out all of the risks that were associated with my E antibody. We were told that at 20 weeks we would have specialized ultrasound of the baby's brain to make sure she wasn't becoming anemic, which is the danger of the antibody. The wait from 16-20 weeks was the hardest.

At my 20 week apt. I had the MCA doppler scan (Middle Cerebral Artery Doppler scan); she looked absolutely perfect. There were no signs of anemia. The tech was doing routine measurements when she noticed that my cervix was shortened. She had the doctor come in and they determined that it was less than half of what it should be. I was told at that point that I would be on (what I thought was) strict bed-rest for the remainder of my pregnancy. I was sent to the hospital for monitoring to make sure I wasn't contracting. I didn't seem to be, so I was sent home. My church family was amazing. They set up a meal train for my family and organized childcare for the kids. I was being seen weekly for cervical measurement and MCA scans. My cervix was 2.3 when I was put on bed-rest. It didn't seem to change much the next week at my apt.

When I was right at 22 weeks, I was having consistent cramping. Dr. J happened to be on call when I called the after hours line. He wanted me to come in, just to make sure everything was okay. When I got to the hospital, I wasn't contracting and my cervix was 2.0. It really hadn't changed much. I was sent home and knew I went to the perinatologists office 2 days later. During that appointment, we first saw that our little girl was showing no signs of anemia; I then found out that I only had 1 cm left of cervix. I was devastated. I was told that I would be heading to the hospital for the remainder of my pregnancy. I was admitted to the high risk unit and was allowed to use the restroom and shower every few days. I received steroid shots for the baby a few days later.

A week and a day after I was admitted, I went downstairs for an ultrasound. It was here that I learned I had no measurable cervix left and was about a fingertip dilated. I was sent to labor and delivery to be put on the magnesium drip, because they had seen contractions on my ultrasound. This drug is known to be awful. It definitely wasn't pleasant, but it wasn't as bad as I thought it would be, either. Luckily I was transferred back upstairs after 24 hours. I was then put on the real version of strict bed rest, bed pans included (ICK). I was also put in the Trendelenberg position, which is when the bed is tilted so that your feet are above your head. I held steady here for a couple of weeks.

On Oct 3 I felt really crampy. I wanted to talk to a doctor, but there was a miscommunication and my nurse couldn't get ahold of them. I took medicine and felt better, so I told my nurse I thought I was ok. I slept pretty well that night and woke up the next morning to be monitored for contractions and to make sure baby's heart rate was good. Right when they were about to put me on the monitor I felt my bed get really warm and wet. I knew my water had broken and I felt panic wash over me. I was quickly rushed back to labor and delivery to get an iv started with antibiotics and fluids. I still wasn't showing consistent contractions on the monitor and wasn't in active labor. I was told that we were going to keep baby girl in until we showed signs of infection or until they couldn't stop labor. I was able to go back "home" to the 3rd floor high risk unit.

2 days later my temperature started to climb and my heart rate went up. Cohen's heart rate started to climb as well. I was sent back downstairs again for monitoring. This is when I started to feel contractions. I was having them every 5-6 minutes, but they weren't painful. My temperature and heart rate started to g back down, along with Cohen's, so they thought I was going to last longer. I told them I was contracting every few minutes, but they weren't showing up on the monitor. The nurse said my uterus was just irritable. I knew that wasn't the case. My doctor checked me and I was only a cm dilated, so once again, I was sent upstairs. I arrived upstairs at about 9 pm and informed my nurse that contrary to what she had been told by the Labor and Delivery nurse, I was contracting. I told her I was going to try to get some sleep, but be ready for me to call her. I woke up at about 5 am to a couple of very painful contractions. I was put on the monitors and my contractions were now measuring every 3-4 minutes. My doctor tried to give me a large dose of fluid, but it did nothing. My contractions were painful and the baby's heart rate was high again. My perinatologist and doctor came in to tell me that I would be having my baby girl shortly. I was once again, devastated. I was only 26 weeks and 1 day. We had no idea what would happen to Cohen. We were both terrified. My doctor went ahead and checked my cervix right before she performed the C-Section and I was 3-4 cm dilated. There was no doubt that I was in labor, so we at least felt like we were doing the right thing. Cohen was born weighing 1 lb. 14.7 oz. She was 13 3/4 inches long and her apgars were 5 and 7. I didn't get to see her (I was fine with that, as long as they were taking care of her). She was intubated and stabilized and then transferred to the Level III NICU.

I was able to see her on my way to my room and could not believe how small she was. It is truly hard to even fathom. She was absolutely perfect though. I kept thinking about how perfectly we are created. I kept praising and thanking God for her. I knew it would be a long road, but I felt like God was going to give Brian and I strength one day at a time.

I will continue to update about our baby every few days. I know there are a lot of people that care about her and we feel and appreciate the prayers more than we will ever be able to express to anyone. We want to make sure people are able to stay up to date. Thank  you again for the support!