After 5 weeks in NICU, our baby goes home!

After the swallow study confirmed our baby was silently aspirating with no apparent reason, we entered a waiting game to see if he would outgrow it 2 weeks after. Then he didn't, the second swallow study revealed the same results as the first one. So now it all came down to how can we go home with him aspirating and stay safe. The answer: a gastrostomy feeding tube. However, this also meant that they needed to check if he was silently aspirating any reflux. A 24hr pH probe study revealed he probably was because the reflux was coming high enough and quite frequent. What does all this mean? A Nissen fundoplication was needed to stop the reflux from coming up the esophagus. This type of fundoplication is done by wrapping a portion of the stomach around the esophagus so the reflux can't go up. This also meant our baby would have a big scar on his belly for the rest of his life. We didn't take this lightly and sought second opinions, discussed with doctors and cried a lot before we let the surgeon do this.

Surgery Day: Gastrostomy tube and Nissen fundoplication

Surgery day came April 19, 2013. The night before, we gave our baby his first bath and took pictures of his intact little body before the surgery. He was calm the morning of surgery day, even with his IV on the head since the night before (which took 5 tries). He came out of surgery without complications. It was really hard to see him in pain with his teary eyes, intubated and unable to cry as he was waking up from anesthesia, heartbreaking to say the least. Morphine and sedatives kept him calm for the most part until he could receive a feeding again in 48 hours. He is such a resilient little boy. 
Once the IV was out, he was very awake looking at the toys in the room, responding to every single noise he heard and fussing for attention. He was built up on his feeds to 65 cc, which is around 2 oz., every 3 hours.

A week later, we were sent home with a feeding pump and required supplies to feed and take care of his g-tube and incision site at home.

Car Seat Trial... NICU... Orogastric (OG) Feeding tube

On our baby's 4th day of life, we finally heard word that a certified car seat trial nurse would be coming to see us. She brought a car bed with her to check if the baby's oxygen desaturations would improve while on the car bed vs the car seat. The car bed would allow us get over this hurdle and our baby boy could at least go home. Little known fact: Car beds are usually used on small and/or fragile babies, and because they are usually used for a short period of time, the hospital rents them out. When the specialist arrived, she showed the nurse who attempted to do the test the day before, how to properly do the test. She first tried testing our baby on his carseat but he was a bit fussy, once he calmed down he went to sleep, almost immediately his oxygen levels dropped, and she immediately took him out of the car seat. Next, she setup the car bed on the floor the way it would be placed in the car and proceeded to put our baby in it and buckled him. His oxygen levels dropped again. Ok, now what? We can't go home! Ughh!

Now, things were getting serious. Due to the issues with the car seat and car bed she recommended that our baby be monitored overnight with an apnea monitor and a pulse oximeter to ensure he didn't have sleep apnea or that he was not having other oxygen desaturations episodes at other times as well, without us noticing.

Sleepless Night

My husband and I tried to feed baby boy while trying to keep him in a good position without any alarms going off. We discovered that his oxygen levels would drop from 100% when he was in certain positions, whether he was feeding or not, but what was interesting is that he would be fine lying flat on his back in the crib. The car bed was also flat, and he was not ok in there.

The next day

After multiple oxygen desaturations overnight, the attending pediatrician and residents notified us that they were concerned about aspiration of his milk intake into his lungs. Due to this concern, by the afternoon I was directed not to feed him the bottle anymore and was notified that an IV would be put in place for him to get his nutrition, what?! That would be until a swallow study could be done in the morning. No way, this baby would not be satisfied with just an IV! I was alone at the time they told me about this. This was a red flag. I immediately contacted my social worker, as well as the craniomaxillofacial surgeon for an opinion and to express our concerns on how uncomfortable we were given the concerns for our baby and his care. We felt he needed to be monitored in a NICU or similar environment, not just by standalone machines and his parents in the room waiting for a nurse to come if an alarm went off. We were seriously concerned about our baby boy's well being, and as a result many tears were shed. Our baby's craniomaxillofacial surgeon arrived as nurses tried to put an IV on our baby 4 times. It was then, after he talked to me that he talked to the attending pediatrician expressing our concerns and then talked to a neonatologist in the NICU. They decided as a team that our baby should be in the NICU. Thank goodness! Immediately after we got to the NICU the doctors assessed him, put an OG tube for feedings and took out the IV. 

Feeding, discharge for 1

Feeding with a special bottle

Our baby boy was drinking out of a special bottle called the Haberman. Like any other baby he fell asleep after having some milk on his tummy and we had to keep him awake so that he would keep sucking and finish his milk. Because of his cleft, we had a speech therapist come in to make sure we were using the Haberman correctly when feeding him. Weird, right? Yes, but speech therapists work with patients needing swallowing therapy. This was a little bit frustrating, the first time the speech therapist came to show us how to use the bottle, she forced fed him so much that he spit it up almost completely after she left. We were pretty MAD! The next day, another speech therapist came by to observe him feeding, and didn't see anything wrong with him. However, the attending pediatrician was concerned about the volumes he was taking, which they didn't tell us it was below what they expected until discharge day. Nevertheless, they asked us to bring his car seat to the room so that they could do a car seat trial, which is performed on premature babies and babies with respiratory problems. It consists of placing the baby in the car seat for 90 minutes while monitoring his oxygen level with a pulse oximeter. Baby passes the test if the oxygen levels stay between 88% and 100%. That afternoon, a nurse came in and took baby boy and car seat to perform the test at the nursery. We didn't hear from anyone until we asked how our baby was doing, and they told us he didn't pass the test. Apparently is pretty common for babies not to pass the first time so alternate plans were being made to try it again the next day. 

Discharge for 1

In an effort to keep us together, they discharged me and transferred our baby boy to the children's hospital with the expectation that he would be going home the next day. On his third day of life, yet another speech therapist stopped by to watch him feed, whom again didn't see any problems with his feeding so she cleared him for discharge; we received the same determination from the attending pediatrician and craniomaxillofacial surgeon. At this point, we were just waiting for the car seat trial, which needed to be done 40 minutes after he stopped feeding for 90 minutes ,then we were on our way home (or so we thought). Our nurse called for someone from the Neonatal ICU to come and perform the test, since she wasn't trained on how to do it. However, later that day it was her that showed up with a pulse oximeter to perform the test. This is where the uneasiness began... I put our baby boy in his carseat, and let the nurse buckle him in. She then tried getting the car seat to a 45 degree angle. Once I understood what she was trying to do, I pointed out to her that the car seat's back is already at a 45 degree angle, so she set the pulse oximeter, started the time log, left the room, and left me watching... if the oxygen level dropped below 88% I needed to call her. Then, not even 5 minutes had passed and our baby's oxygen level dropped to 58%, the nurse immediately came to the room after hearing the alarm and took the baby out of the car seat. We were not going home that day, to the disappointment of Daddy and Big Sister who showed up later expecting to pick us up and be on our way home.

Baby Boy's Birth Story

Two days before our baby boy's due date we went into the hospital for our scheduled induction. Our appointment was at 3pm, by 6pm I was in a room, IV started, blood drawn, and Cervidil going into my cervix for 12 hours. We definitely didn't realize that we had to wait that long and that if at the end of the 12 hours I wasn't dilated to 3 cm, then another one for 12 hours would be started before I could be moved to the Labor and Delivery floor. Around 2 am I started having painful contractions so I woke my husband to help me manage the pain and also got on the birthing ball to ease the pain. The Cervidil was taken out at 6am, and my cervix was dilated to 2 cm, so the Dr ordered another Cervidil. I continued having contractions after the medicine was out and by the time the nurse was ready to put it in around  9am and checked my cervix, I was almost 3 cm dilated, so the Dr ordered to get me transferred to the L&D floor and start Pitocin. Then we waited and waited and waited until about 5:30pm when I was finally given a L&D room to have our baby. Since I continued to have contractions even without any medicines during the day, I was between 3 and 4 cm before the Pitocin got started.

The Final Hours of Labor
The nurse started the Pitocin drip at about 6pm, by 8pm the contractions were painful enough to prompt me to ask for an epidural. That anesthesiologist was at the ready! He came in to put it in so fast that it made me nervous and I started shaking, every time he poked or touched me, I jumped, for sure I thought I was going to get complications but I didn't, thank you God. And then I was relieved of my pain. My Dr. came in around 9pm to break my bag of waters, checked my cervix which was still around 4 cm close to 5 cm, then decided to go home and wait for a call from the nurse.

Time for Baby!
And the baby dropped along with the feeling of needing to push, it was around 11:15pm, so I called the nurse, who came in checked my cervix and discovered I was already at 10cm dilated and the baby went from station -1 to +2, she then hurried up to get everything ready for the delivery, had the nurse desk call the Dr, while my husband helped me get a boost of meds every 10 minutes pushing the button for the epidural. The Dr. arrived around 11:40pm, and got ready! Our Baby Boy was born at 11:56pm on March 20, 2013.

Our Baby Boy was rapidly evaluated by the NICU staff since we knew about his cleft lip since the 20 week ultrasound and confirmed a cleft palate at birth. He has a Unilateral Cleft Lip and Palate (UCLP) on the right and a bilateral cleft on his soft palate. He was found to not have further complications other than failed hearing screenings. Although that rapidly changed in the days that followed... Stay posted for the story of our journey in the NICU and our Baby Boy in an upcoming blog post.

I'm back!

It has been a long while since I last posted, I even had a baby :-). Now with a new look, what a better day to revive this blog than #WAAD13 World Autoimmune Arthritis Day.

Please take a look at the LIVE chat sessions going on through tomorrow to understand better maybe what you are going through or what your loved ones are experiencing with their Autoimmune Arthritis which includes Rheumatoid Arthritis. RA Chicks, a group that I follow, will have a chat session tonight at 8pm ET. Visit http://www.waad13.com

Today, my son turns 2 months old. Time flies, and we have only being home for 3 weeks, please stay posted for the birth story as well as the ordeal this little guy has had to go through on a series of blog posts in the next week.

It's World Arthritis Day!

Educate your family and friends that there are different types of arthritis, not just the old people kind. It also happens to young, otherwise healthy people.
Visit: http://www.worldarthritisday.org/

Exercise for Better or for Worse

Today is the day! I had to write my first post for this blog that I've been planning for the last week, even if my website hasn't been finalized. It's time to start writing my experiences dealing with Rheumatoid Arthritis while Pregnant.

I woke up today with hip pain, the desperation made me cry, my cries turned into why me, why not somebody else needs to deal with RA. I broke down for a minute in the bathroom, but quickly put myself together so that my 3 yo daughter would not see me cry. So, I waddled out of my bedroom out to the living room. While also trying to do some stretches to give my hips some blood flow.

This pain didn't come out of the blue, my 1 hr session with my trainer yesterday is the culprit. The session included hip adductor and hip abductor weight exercises, which felt vey good at  the moment, but oh my! does it hurt right now. I am cuddled in the sofa with my warm fuzzy robe that seems to making my hips warm and feel a lot better.

Besides the pain that I am currently experiencing and that I experience a lot of times after a session with my trainer, whom I see only once a week. It really does help! That 1 hour workout a week - I think - has been keeping my RA pain mostly away since May last year. Of course, that wouldn't had been possible if it wasn't for the Enbrel injections I was taking weekly since March 2011 up until I found I was pregnant.

Like most of us I don't love exercise, specially while experiencing stiffness and pain, but it does make a world of a difference in my life, and it has been proven not only by me but by arthritis research, that it helps to manage the symptoms of both RA and Osteoarthritis.