Our brave little guy before surgery
After 4 hours of restless sleep I was on my way back to the NICU. Spending the night away from my baby and husband had been agony and I was anxious to be with them again, but I walked very slowly through the hospital, my left knee was very weak and I didn't want to fall again.
I got to our room shortly before the doctors and surgeons did morning rounds. We were hoping to hear that Johnny would go into surgery that day. But because his condition, while serious, was not life threatening they were going to wait until the next day to operate. This was frustrating to hear. We didn't want our baby to be in pain any longer than he needed to be, and we also wanted to get surgery behind us as quickly as possible so that we could get home and be a family.
We did at least get a more complete prognosis for Johnny. He would have this first surgery to create a colostomy so that he can pass stool. That meant Alex and I would have to learn how to care for an ostomy. Then at around 6 months of age Johnny will have a second surgery to create an anus and hook his colon up to it. He will still use the ostomy for up to 3 months after that to let the new anus heal up. Then there will be a third surgery to close off the ostomy as well as the fistula between his colon and urethra. The surgeon told us that Johnny will never have perfect bowel control and it's something we will have to help regulate with diet, medications and possibly a few other operations as he gets older. It was very daunting to think about not only learning how to care for an infant but also dealing with a major medical appliance on a daily basis. It was a complete unknown and at the time seemed like an insurmountable feat.
We also learned an inperferate anus is a birth defect that is commonly associated with other birth defects, together they make up a syndrome called VACTERL Syndrome. Vertebral, Anus, Cardiol, Tracheal, Esophageal, Renal and Limb disorders that can often occur at the same time. They wanted to check Johnny for all the other possible defects. It was obvious that he didn't have any deformities in his limbs, and the trachea and esophagus were both functioning normally. They saw on his initial x-rays that there were some anomalies at the base of his spine, so that would need looking into. They also ordered a cardiogram of his heart, and a kidney ultrasound to be done after surgery.
After the doctors left our room I looked at my phone. I had a text from my mom, "have you pumped yet?" At the time I was so distraught and distracted that I didn't care if my milk came in or not. But I am so grateful to my mother for pushing me and reminding me to pump, because it would be 4 more days before I could even attempt to breastfeed Johnny and despite the delay and separation I did not have a problem with my supply. That day I started a rigid schedule of pumping every two to three hours. There was a freezer in the NICU for breast milk where we stored it until Johnny could use it. (He was getting his nutrients through IV fluids until his intestine had an outlet.)
We decided we wanted to have Johnny baptized before going into surgery. Even though it was a relatively low risk surgery we wanted him washed with that grace and welcomed as a member of God's family. Our priest was free that morning and so were Johnny's godparents. So they all came down to the hospital along with my parents. The NICU only allows four visitors in a room at a time, including parents, but they made an exception for us on this occasion. We would have loved for Johnny to have been baptized at our church, but our little NICU baptism was really quite beautiful. It was like a healing balm on our wearied souls. A welcomed moment of calm in the middle of uncertainty and anxiety. Along with the baptism our priest administered the Anointing of the Sick, and a blessing for new mothers and babies. Afterwards we felt refreshed and that we could better face what was coming next.
before you judge my appearance, remember what I have just been through.
Johnny with parents and godparents, Ian and Jacqui.
After the baptism Johnny's godparents stayed to visit for a while. It felt like it had been ages since we had done something as normal as hanging out with friends, and it felt great! Then, shortly after Ian and Jacqui left, we got a call. Jacqui (who was 36 weeks pregnant) had just felt her water break! We were in the middle of our big adventure and now they were just beginning their own. Later that night we got word that they had had their own little boy! We love to reminisce about how the last thing they did before having their baby was come to our babies baptism.
We spent the rest of Saturday holding our baby, or at least holding his hand through the window of the incubator, pumping (just me) and trying to remember to get meals. It doesn't sound like a lot of activity but by the end of the day we were exhausted. It was then that I noticed my left leg was quite swollen. Postpartum women are at risk for blood clots, and having an epidural puts you at higher risk. We asked Johnny's nurse to take a look and she thought my left leg felt warmer than the right. So we decided we'd better go to the ER. At least it was just down a floor and few hallways over from where we were! Johnny's nurse also called for a wheelchair for me. She said she sees it all the time, mama's who have just delivered are so worried about the babies in the NICU that they forget to take care of themselves.
So there we were, Saturday at around 11:00pm, in the ER. I thankfully did not have a blood clot. But my blood pressure was elevated. The doctor I saw thought it was probably just stress related (ya think?) But that I should follow up with my GP in a couple days. Thankful that I was ok, Alex wheeled me back to the NICU. It was now 1:00 am, so I decided to stay at the hospital instead of going to my parents. Alex and I got cozy on a fold-out couch that was about the size of a twin bed, and had yet another fitful night of sleep.
The next morning we waited anxiously for Johnny's operating time. When it was time for him to go we kissed his little hands good-bye and they wheeled away his incubator. I sat down on our "bed" and cried. After a few minutes Alex suggested that we do the liturgy of the hours. This was the reading from morning prayer that day.
Praise be to the God and Father of our Lord Jesus Christ,
the Father of compassion and the God of all comfort,
who comforts us in all our troubles,
so that we can comfort those in any trouble
with the comfort we ourselves receive from God.
For just as we share abundantly in the sufferings of Christ,
so also our comfort abounds through Christ.
2 Co 1:3-5
It never ceases to amaze me how our Lord will find a way to tell us what we need to hear. After we had our miscarriage someone from our church told me that God would use that experience to minister others. Within a year two close friends lost babies of their own. Being able to sow seeds of comfort made my own suffering so much more redemptive. I do believe that the Lord will use us again at some point to minister to others who are experiencing the same difficulties we went through with Johnny.
Surgery lasted only about 45 minutes! Then he was back in his room with us. He had a big purple blob on the side of his tummy (which, by the way, already looked much less distended) which was actually his intestine. It was still too swollen to be fitted with the ostomy bag, so it was just covered with some gauze. Surgery had gone very well, he was still on a breathing machine, and they would wait until he started breathing on his own to take him off of it. But as soon as that happened and he was fitted with his bag then we could work on feeding him!
It took Johnny about 24 hours to come off his breathing machine, which is much longer than we expected. And even after he was breathing on his own it took a long time for the effects of the anesthetic to wear off, so he was very sleepy. The number one goal now was to get him eating on his own so that we could go home. I always thought breastfeeding would be easy, it looks like the most natural thing in the world. But it is hard, and frustrating, and takes a long time to prefect. There I was holding Johnny, the lactation nurse was trying to coax his mouth open, one nurse was holding a pillow under Johnny, another nurse was shoving my breast into his mouth, it was really just comical how many people it took to breastfeed him. And Johnny would just fall asleep. Alex had a little more success giving him pumped milk in a bottle. He would strip him down to his diaper to try to keep him awake. He took a little, but it was a struggle. I had wanted to breast feed my baby so badly, but it seemed like it was never going to happen. I was resigned to Johnny being bottled fed if it only meant that we could go home.
On Wednesday, almost a week after he was born, the IV line that had been in his head blew out. So his nurse put one in his left hand. A few hours later that IV blew out. So then she tried the right hand, and that one lasted only a matter of minutes. Our nurse really didn't want to put another one back in his head so she suggested we try without one for the night and see if he would pick up on his feedings. If not then they would feed him through an NG tube. I think having him off IV fluids finally allowed him to develop more of an appetite because that's when we turned a corner with breastfeeding. All of a sudden he just got it! He was latching, sucking and swallowing! That night I cried again, this time tears of relief that something had finally gone right. Being able to breastfeed Johnny is such a blessing. After all our turmoil and separation I count it as a precious gift from the Lord.
Little by little he was taking more from the breast and less from the bottle. Friday morning they took out his NG tube and he was eating all on his own, and he was gaining weight. The nurses were beginning to wonder why we were still there. So were we! Then finally on Saturday June 8, after being in hospitals for 12 days straight, we got our discharge and were going home. After packing up our things Alex had to make four trips out to the car. It was amazing how much stuff we had accumulated while we were there! As we were leaving many of the nurses we had met throughout the week were there waiving us off.
We were going home--
our baby! With
baby I couldn't believe it, and I couldn't stop smiling. That first week of June had been so cold and rainy but Saturday June 8 was beautiful and sunny. Everything was so green and alive and flowers were blooming. It was a perfect day. We stopped by our church on the way home and took Johnny in to offer up our thanks to the Lord, for our baby and for seeing us through that long, long week. I said before that the most triumphant moment of my life was when Johnny was first born and I first held him to my chest, and it still is. But a very close second was when we carried him up our front steps and brought him into our home.
shhhh! Nap time!
Post-op. Still on the ventilator. The blob above his diaper is his intestine.
New ostomy bag. And less wires!
Johnny does not like the NG tube.
No more wires, just cozy baby!
Nap time with Papa,
Kisses from Papa.
Finally going home.
Then they brought Johnny in for me to say goodbye. In my previous post I said that pushing Johnny out was the hardest thing I had ever done, but I am taking that back. Saying goodbye to him, while only being able to touch his little hand, was the hardest thing I have ever done, and by far the worst moment of my life.