Miles NICU Journal

19 Mar 03-This morning started out so scary. I was more terrified than I’ve ever been in my life. The alarm clock went off and I got up to go to the bathroom. I then realized that I was bleeding severely. I told Chris to call 911 because I needed to be taken to the hospital and couldn’t drive myself this time. The ambulance arrived and asked me all kinds of questions which was hard because all I could think of was if Miles was okay. Finally, they got me out of the room, on the stretcher and into the ambulance. They started an IV and rushed me to the hospital. On the way there, I felt him kick and I started to feel a little better.

When I arrived, every available nurse about pounced on me. They started another IV and put in a catheter. They hooked me up to a blood pressure cuff and a monitor for Miles. Usually the nurses are in and out but because I had lost so much blood, one was assigned to just sit with me. I still had no idea what was going on and even though I could hear his heartbeat, I was still scared to death. What I didn’t realize is that I was in pre-term labor and that’s what started the bleeding. They put me on a 6 gram bolis of Magnesium Sulfate to stop the contractions which made me feel very ill like they said it would. I began to sweat and feel nauseous. They brought in an ultrasound machine so they could see what was going on and they saw blood flow where it wasn’t supposed to be. I was so confused. I knew I had Placenta Previa and I had already had a bleed back in January but didn’t know if that’s what was causing it. They were talking about an emergency c-section but no one was really telling me what was going on. Once Dr. Langert came in and the perinatologist, they decided to just see what the Mag did and to monitor us closely. They didn’t want to deliver because it was too soon and Miles lungs might not be mature enough. So, that day began the strict bedrest. I was not leaving the hospital until he was born.

20 Mar 03-They are taking blood from me a couple of times a day and besides the Mag, they have me on Iron and antibiotics (a standard procedure for anyone under 37 weeks gestation). I had another bleed today and am now passing clots the size of lemons. I still don’t know what’s wrong with me. They are still not telling me a whole lot.

21 Mar 03-Everything finally settled down so they decided to wean me off the Mag to see what happened. Once they finally took me off, I started contracting more. They said as long as I didn’t have more than 6 contractions in an hour, they would leave me off of it. The first hour, I had 5. Then I had 6 and then I had 8. They had to start me back on the Mag. Even on the Mag, the contractions were still coming, just not as much. I bled again today tough.

24 Mar 03-I began bleeding for the 5th time today and I pushed and pushed for someone to do something. Finally Dr. Maciulla (the perinatologist) came in and gave me two options. He said I could have the vaginal probe done to see what was going on but it might stir things up further or I could have an amnio done to see if his lungs were developed and if they were, they would deliver. We chose the vaginal because there was no need for the amnio. We still had that option later if we wanted. So, they wheeled me up to the 5th floor and did a Doppler Ultrasound first where they found that I had Vasa Previa. That’s where there are blood vessels that are outside the placenta and if they rupture, the baby almost always dies. Well, after that, there was no need for anything else. They scheduled me for a c-section a couple of hours later. I was so happy that Miles was going to be here soon but so scared of the surgery and what was going to happen because I was only 34 weeks 3 days along.

Well, 1500 was when I was scheduled and it was now 1513 and they still hadn’t taken me in. He had twins to deliver before me. It was more like 1530 and they finally took me to the OR. They began to prep me and finally gave me the atheistic. Thankfully they didn’t have to put me under. They talked about it because I was borderline for needing a blood transfusion. The anesthesiologist made a deal with me that if I didn’t start bleeding too much, he wouldn’t put me under but if I did, he was going to put me out so I wouldn’t bleed so much. I felt like I was going to vomit so he ended up giving me something for that too. Anesthesiologists are wonderful!

At 1539, Miles Preston was born. I heard the doctors as they were trying to get him out struggling because he was so far up in there. Then I heard Dr. Maciulla say, “I see Huevos!” I had to laugh because I knew that meant he saw his testicles. I felt when the pulled him out and waited until I could see him. Because he was premature, they had to take him straight over and cut his cord and check his breathing. Well, a couple minutes later, I finally heard him cry and it was the most wonderful sound in the world. Chris kept running back and forth with the camera. He would take some pictures of him and then bring the camera to me so I could see him. He was so beautiful! They brought him to me all wrapped up before they took him to the nursery to do his Apgar tests. He was so bundled up that I didn’t get to touch his skin which I regretted.

While I was in recovery, someone (I can’t remember who because I was on Morphine) came in to tell me that he was doing great. Well, shortly after, Dr. Mehrabani, the pediatrician, came in and explained to me that Miles started having some problems breathing. He began grunting and had to be taken to the NICU for evaluation. I tried to comprehend what I could but because of the drugs, it was difficult. They said he was struggling too hard and they had to put him under an oxygen hood. Five hours after I delivered him, I had to get out of bed and to a wheelchair, which was very difficult but if I was going to see him, I would have to get up. It broke my heart to see him in the NICU. He was grunting to hard and he looked so weak. I couldn’t hold him and I couldn’t touch him and it broke my heart. I hoped that he would get better quick but that didn’t happen. I went back to my room to try to regain my composure but the bad news kept coming. After I saw him, he was still struggling too much and they had to intubate and put him on the ventilator. I never saw him on that machine because he continued to get worse and they had to put him on the oscillator. For this, they had to paralyze him so he wouldn’t keep trying to breathe over the machine. It was almost easier for me to see him on the oscillator so still than it was to see him struggle in the hood. My hopes were so high when he spent 2 hours in the regular nursery. I thought he would be fine. I then did my best to get some rest. I was exhausted from the days events.

25 Mar 03-I went to see him again and every chance that I got. His status wasn’t changing much. They had a line in his belly and were taking blood gasses every hour to see if the oxygen level in his blood was any better. It was touch and go and it was so hard to only be able to touch his hand. That was all we were allowed to do. We could kiss his head when we left but that was it. This was so he wouldn’t be over stimulated. He looked so helpless lying there with that machine doing all the breathing but at least he wasn’t suffering anymore. We continued to go back down the hall after every blood gas to see what his numbers were like. They would make any changes like lowering the amount of oxygen or the number of breathes per minute based on the numbers from his test so obviously we were very interested in how the test went. We were allowed to change his diaper and take his temperature which was just wonderful for me. At least it was some contact with my son! I tried to hold it together but it was so difficult at times. They let me take the cloth that covered his eyes and sleep with it against my chest so he could have my scent with him at all times. I thought that was really neat.

26 Mar 03-Today I was starting to feel a lot better and had to start pumping so he could have breast milk when he was better and able to feed besides the IV. Every 3 hours, I would pump and then go take the milk to the freezer and visit with him. Sometimes I would only stay a few minutes. Other times I would stay until just before his blood gas.  He had to be turned daily so he wouldn’t get sores but they would not allow us to be in
there for that. His numbers were starting to get a little better and they were bringing down his oxygen level and turned down the reps.

27 Mar 03-He is still showing improvement and they think it should be another day or two until he’s unparalyzed and on the ventilator. I can’t wait for that. I still won’t be able to hold him until he can breathe on his own.

28 Mar 03-Today he came off the oscillator and went on the vent! Poor thing is coming off his Morphine though and is twitching really bad. I still can’t do too much to stimulate him though but I am making sure I’m there for all his diaper changes and to take his temperature. It’s the little things in a situation like this that make all the difference. He is really showing signs of improvement now.  It’s still so hard to see him like this but at least now we know he’s getting better. There are so many other babies in there too that it’s just so sad. I had no idea how many sick babies there could be. He’s opening his eyes now and is trying to lick the tape off his top lip.  He has a sore from where the tape has been for so long.

29 Mar 03-I just can’t wait to hold him and to take him home. He is a lot more alert now and seems to recognize us. He is just so cute! His head is a little swollen from laying in one spot for so long so they are trying to fix that. At least he can move himself around a little bit now and he has even tried to pull his tube out so everyone is watching his hands! He’s a feisty one and we are so confident that he’s going to be better real soon. Chris’ birthday is tomorrow and there’s a chance that he could come off the vent as well. That’s what Chris wants for his birthday. He is being treated for Jaundice as well. Thankfully while he is in his warmer, they are taking care of it so he won’t have to go into an isolet.

30 Mar 03-Well, Daddy got his wish!!! Miles came off the ventilator today. His oxygen levels stayed steady so they were able to take him off. They did say that there is a chance that he could go back on it if he doesn’t tolerate the nasal cannula. We sure hope he will. Another exciting thing is that now that he has the tube out of his trach, we get to hold him finally! It’s been 6 days. We can only hold him for 30 minutes at a time because he still needs to be under the Billi lights but I can’t even explain what it felt like to hold him. We actually got to hold him for about an hour because it was the first time. It’s awkward because he still has the oxygen and his IV and leads but it is so worth it. He is beautiful and feels so good in my arms! I have been waiting for this it seems like forever. Chris got to carry him to the nursery from the OR so he had already held him but it had still been 6 days for him too! Happy Birthday, Daddy!

31 Mar 03-Today he is much more awake and alert. Chris was standing at the head of bed and called him and he actually tilted his head back and looked at him. That right there told us for sure that he recognizes us. It is so nice to see just that little tube on his face. We have been taking tons of pictures and driving him nuts but I’m sure he’ll understand! I’m still having to pump and freeze for now because he’s not ready to try nipple feedings
yet. I also got to do “Kangaroo Care” with him today which is where we get skin to skin contact. They lay him on my chest and cover him with a blanket. It is so nice to feel him against me. His Jaundice is gone now too so I can hold him for as long as I want!

01 Apr 03-They finally think he’s ready to go to a regular crib now. They are going to see if he can maintain his body temperature and if he does, then he gets to stay in the crib. He has also moved out of the back corner now and is closer to the door. After spending this much time in the NICU, I’ve learned that the closer they are to the door, the sooner before they go home. He has on a shirt now so he’s not just in his diaper.  I thought he
would look bigger once he was out of that big warmer but he looks so small. I’m just so happy he has the line out of his belly. They have to do heel sticks now though when they need to check his blood. I can hold him whenever I want now. I don’t even need to ask. I can just walk in and pick him up and cuddle with him.

02 Apr 03-He has his first visitor today. Because it’s RSV season, only parents and grandparents are allowed in the NICU. Chris’ Aunt has been like his mom since his mom passed away so they allowed her to come in. We could see how hard it was on her to see him like that.  At least she didn’t see him at his worst. She only saw pictures. She is so proud and even got to hold him. He likes looking at his surroundings and the people that
hold him.  He doesn’t cry much and seems like such a peaceful baby. We still don’t know when we get to take him home.

03 Apr 03-Today his oxygen level has remained steady and he is now completely off his oxygen! How exciting. Now, he gets to start having real food! They are going to see how it goes and take him off his IV if he does well. He is having gavage feedings, which means there is a tube in his nose going down to his belly. After that, he got to try a bottle, however, when we laid him down, he choked and threw it all up so we didn’t get to try another bottle. His nurse today was Becky and we really don’t care for her. She makes us feel guilty to even touch our own child. Aunt Denise doesn’t care for her either.  She just keeps telling us not to do this and that. We made it this far without her help and we don’t need her now. I just hope she’s not his nurse much longer.

04 Apr 03-Today Dr. Sexton, the other pediatrician, let me try to breastfeed much to my surprise. It had been a long time and I needed some help but he did okay. He is just too comfy with me and would rather sleep than eat. He still has his gavage tube and he got to try a bottle again and did fine with it this time. I guess it was just a shock to his system the first day. We are so happy that he continues to get better fast. Even the nurses talk about how sick he was and how once he turned the corner, he took off. His last obstacle now is to tolerate all his feeds and gain weight. If he nipples all his feeds whether it be breast or bottle and gains weight, he gets to go home! Things are definitely looking up now. It’s rough going back and forth now though because I was discharged on the 28th. I get up and go to the hospital first thing. I stay for 2 feedings and then go home to eat lunch. I come right back and stay for 2 more feedings and then go home to eat dinner. I go back for one more feeding and some cuddle time and then I try to get some sleep. I am starting to get run down and the nurses said if I get sick I’m no good to him so I’ve been trying to take care of myself.  When you have a baby in the NICU, it’s easier said than done.

05 Apr 03-He is still having to have some gavage feedings but is handling the bottle feedings quite well. He keeps pulling his gavage tube out so they are planning on taking it out tomorrow. I can’t wait until he has no more tubes of any kind! Because he’s handling his feedings so well, his IV is out now so all he has left hooked up to him is his leads and pulse ox to continue to monitor his oxygen and his heart rate.

06 Apr 03-Finally his gavage tube is out now and it’s straight nipple feeds now. All he needs to do is gain weight now and he gets to go home. They still won’t give us any kind of time frame though so it’s just the waiting game now. His nurses are pushing him more and more because they know we’re all ready for him to go home. He finally looks normal without any tape or tubes! His body temp has remained what is should be the entire time he’s been in the crib. They had to strip him down once because he got too warm.

07 Apr 03-His circumcision is scheduled for today so he’s going to be a little cranky. While I was home eating my lunch, Donna called us and said when we came back to bring his car seat! I lost it and was so glad I didn’t have to drive myself back because I couldn’t have handled it. They were already at capacity for babies and they were expecting 3 more. Donna knew we could handle him at home and the doctor protested a bit but knew that he was ready. He was just concerned because he wasn’t gaining weight. When we got back they did his hearing test and went over all the discharge information with us and we finally got to take him home! They expected in the beginning for him to stay until his due date (6 weeks after he was born) so this was a complete shock to us. He passed his hearing test and his circumcision went well. They put me in the wheelchair and took us out to the truck and off we went. It was kind of sad to be leaving because we had become attached to so many of the nurses but we so thankful to be taking our baby home for good! We had to bring him back in 3 days to be weighed to make sure he was gaining but that was it! Now we can begin our lives with him and put all of this behind us although it is something I will never forget.  We couldn’t be happier and prouder of how far he’s come and that he is well now and home safe in our arms!