This past week was definitely full of highs and lows, probably even contained the worst moment of my life- it was that bad for awhile. On Thursday (10 days ago) I noticed a regular diaper rash on Jeremiah so I was using Butt Paste and Desitin to treat it. On Saturday during application I noticed a bit of raised part on his rear, I didn’t think too much of it and assumed it was part of the rash. It looked red like the rest of it but I didn’t notice anything else unusual. By Sunday, the red bump had grown, again colored the same as the rest of him so we kept an eye on it. It kept growing and by Sunday night (middle of the night) I noticed it bleed. I called the pediatrician in the AM and had an appt at 12:40 to get it checked out. I was expecting to receive a prescription for some cream and be on our way, though by this time it was the size of a marble under his skin and looked very angry.
I went in to the appt and the Dr checked him out, she told me it was a large boil and it wasn’t going to pop on his own. I should go to Children’s to have it looked at–she called to see if I needed to go to the ER or some clinic. To me, clinic sounds like same day procedure so I was not too worried. She came back and had me go to the ER and ask for the surgical team–she told me not to feed him because they may put him under anesthesia due to the location. Again, I wasn’t overly alarmed, still thought in and out…
Made it down to Children’s and thank goodness I had my dad meet me there. Went through the ER and was seen very quickly. Talked to the ER nurse who wanted to do blood work, spinal tap, and send him into surgery right away. The words spinal tap scared me–you want to do what to my baby?! A surgeon came in to see him and he pushed on it a bit and noticed it had opened on his own. His recommendation was to stay overnight, let it run its course and we’d probably be on our way home tomorrow.He didn’t even think an IV or blood work was necessary, sounds good to me! Well, I guess they met somewhere in the middle because he had an IV started and they did do the blood work. Good thing.
On Monday night I was extremely optimistic that I was going home on Tuesday and that he wouldn’t need surgery. Everything was looking good and I just had to stay in the hospital with him overnight for observation and antibiotics and we’d be on our way home the next day.
Overnight and Tuesday morning he was seen by several people, always waking him up because they’d remove his diaper. Of course they’d try to calm him but forget it, he needed his momma. So up I was at all hours nursing, comforting, holding, and just praying this ordeal would be over soon. Around 10AM on Tuesday a surgeon came in to see him and said all looked fine and we’d be going home that afternoon- “abscesses were around before surgeons and they heal on their own”. Sounds good, was then told by a nurse that he just has to tolerate oral antibiotics and we’d be good to go. Yippee! Around noon or 1 I changed his diaper and noticed the area was still hard and starting to look a little worse. I told the nurse practitioner who was looking at him anyway and she agreed it needed to be looked at. My nurse was awesome, I told her I was a little concerned too and she said don’t let them send you home if you have any concerns! Make sure they look at it again and explain your concerns. The NP came back with a surgeon who said the opening had closed and left a pocket behind it (which would just re-fill) so it needs to be opened–probably surgically. My heart sank. We were back to let’s wait and see what it looks like in the AM and if it’s not better, he’ll get surgery. Sigh…but it’s possible even if he did need the surgery he could go home the same day. We were hoping for just one more night. The wound had definitely stopped draining and got worse through the evening. At the slightest sound of gas I was up changing his diaper to keep it clean and bacteria free as much as possible. The hardness was not a concern to the doctors, they said that was normal but the softness and pocket were the concern.
Josh came down again Tues evening along with my parents and Jonathan got to visit. Was so good to see Jonathan even for a short bit. I hate the feeling that having another baby has taken me away from him because infants are so demanding, especially during nursing. It really breaks my heart. Once his visit was over, Josh and I gave Jeremiah a little tub bath. That was crazy because the IV was in his foot so we had to soak his rear while keeping a foot dry and a baby happy. Not the easiest feat, he hated it and so did I. We managed it though and I loved cuddling JJ right after and whispering to him that it was over, he’d be ok now for a bit. Josh eventually went home to be with Jonathan and I spent night #2 in the hospital. Again, waking at all hours as they prodded my baby to assess him. I realize they are doing their jobs but I felt awful that he didn’t get good sleep. We were just getting on a good routine of eating at home and now we were way off again–nursing every 1.5 hours or so, probably mostly comfort nursings. Wednesday morning around 4AM the decision was made to procede with nursing so I couldn’t feed him after 5. I tried and tried to nurse him that final hour but he was too tired, he was done at 4:35 and didn’t eat much–I was praying he would be ok while we waited. I thought surgery would be in the afternoon so I was afraid this was way too long to hold him off. Luckily I was eventually told he was first on the add-on list and they just needed to wait for the full team to arrive. Something about they usually dont schedule surgeries on wed until after 12. My nurse this time was wonderful, she encouraged me to go for a walk and offered to hold JJ and chart in my room so I could take a break. I eventually took her up on this but not before she changed out his IV. Thought it was odd she encouraged me to go get a drink right before she worked on it with another nurse and I heard her say “it’s in the wrong spot”…which i now believe meant why would you put an IV in a babies foot instead of their hand. But I wasn’t leaving while they were working on him so I stayed and went for my walk when all was done and he was calm. The nurse took my phone number so she could call me if he got called back for surgery. I think I knew by this point he was scheduled at 10:30AM. Ok, dad was also on his way with starbucks but I walked to the cafeteria anyway. No sooner do I see the cafeteria sign than I get call from the nurse, the anesthesia person was there and I needed to sign some forms. I turned right around and went back up to the room. Had to make a few calls about family history with anesthesia and signed the forms. They said I’d still have some time after that to leave but as soon as I finished someone showed up to wheel him down. Dad showed up and I ate my scone and drink quickly–off we went to surgery. After meeting with more nurses, answering more questions and continuing to try to keep the baby calm (going on 6 hours of no food only sweet-ease) I finally handed my baby over. The nurses all loved him and loved on him so I knew he was in good hands. Dad and I went to the waiting room and talked politics–why did I think this would pass the time quickly?! Oh well, not too much later we were told to follow the yellow sunshines to my baby. As we walked past the recover beds I could hear him screaming, surely that wasn’t him so quickly after anesthesia? But it sounded like him so I picked up my steps and eventually made it to bed 24 to hold my baby. He calmed and they gave him some morphine to help his pain. He nursed pretty well- actually if he had teeth there is no way I could have survived those eager chomps! The Dr came in and told us all went well but it was a very large pocket, about golfball sized and we definitely had to stay another night. At least it was a success but I wasn’t happy to hear it was so much worse than they had expected and that we had to stay. Wednesday night was much more active, mom and Josh were visiting but so did Megan (who brought me a delicious latte and pumpkin bread yumm!), and Jen who was working that night and my PCA was an old roommate and sorority sister! So I had lots of company that night as little boy rested. The game plan at that point was to remove half the packing the next day and hopefully be discharged and I’d remove the other half the next day at home. Mom stayed with me all night that night helping to rock JJ. I slept so much deeper knowing someone I trusted was in the room with me to help give instructions and watch over Jeremiah. She also comforted me through the comment that he may need a second surgery because the nurse was concerned about the hardness. I was optimistic this was wrong bc the DR wasn’t concerned about the hardness but at this point had no idea what to think with all of the up and down news I had received…
Thursday was another day filled with mixed emotions. Mom staying with me really helped as I was able to get some deeper sleep and I didn’t seem to be as awakened as much. We had breakfast and dad came again bearing starbucks, yumm…I love Pumpkin Spice season! I think this is the day I finally made it outside for a few minutes and talked to a few friends on the phone. Trying to keep everyone updated was a challenge but Facebook helped–I was texting, chatting, calling and updating FB to keep all informed. I felt very comforted by the hundreds of people praying for Jeremiah and knowing I had several friends offering help and standing by. I made a stop in the gift shop and wondered around for awhile looking for a gift for my baby. I wanted to give him something that we could look back on and settled on a little dog with a paci attached. That turned out to be perfect as that paci stays in his mouth much better because the stuffed dog rests on him. Mom and dad also went to the gift shop and got him a big blue teddy bear and balloon and shortly after he had a teddy and flowers arrive from my cousin, how sweet! His room seemed so much brighter and filled with cheer–guess I should have gone down sooner to get him something. Earlier in the week they had brought him a mobile which was really touching to me, they have lots of things for children but the way the lady asked “would your baby like a mobile” about made me burst into tears. Yes he would- such a small thing but it was so soothing to him all week long through this ordeal.
For lunch, mom dad and I ate hospital food- it actually wasn’t bad and they have a great program for visiting families where you get plenty of food for cheap. Dad left shortly after and mom and I waited for 2:00 to roll around for the first set of packing to be removed. Around 1:15 a familiar face (Elaine or Aunt E) arrived just as the DR and 3-4 other followers arrived all gowned up. They were ready to remove his packing but Tylenol wasn’t due for another hour or so…I told them I wanted the T in his system before they remove it (especially since the NP was contemplating morphine because it’s that painful!) The Dr said it would hurt him no matter what and wanted to do it now…I about pulled the “STOP” procedure they have as I insisted they wait. They agreed to see other patients first- I don’t think they were happy about it but I must say they were very very good about respecting the parent’s/patient’s wishes. I also know they made note of this because over the next 24 hours a few nurses made comments about having the T in his system before removing the second set of packing. During this time, T wasn’t lasting him a full 5 hours so the last 30mins to an hour were painful for him–the worst possible time to do something even more painful to him! His next dose of T arrived about 15 mins later and 15 mins after that they did the procedure. Mom and I left as Aunt E volunteered to stay and observe–so thankful she did! It was comforting to have someone I knew in there with him at a time I thought I couldn’t handle it. He did very well and wasn’t even crying when I got back to see him. The T had kicked in and definitely helped! What a relief…Aunt E stayed awhile longer and held Jeremiah, rocked him, danced with him, and gave mom and I a nice break to go to the cafeteria and just relax for a minute.
That evening was much better, JJ was in much less pain because of having some of the packing out. Jen came down again for another a visit and I told Josh to stay home with Jonathan so he had some parent time. I was worried he was missing both of us during the week as Josh would come to me straight after work and when he’d get home Jonathan was asleep. However, Thursday evening would be the worst moment of my life–his second IV in his arm wasn’t flushing. The nurse looked for another vein and didn’t see one she liked so she called someone else to help or said she could call the IV team for assistance. Who knew there was a team of specialists just for sticking people and putting lines in? A nurse came in and tried and the needle didn’t stay, she said she blew the vein. Sigh, ok –they would call the IV team. They had 4 other patients to do so I asked the nurse about his Tylenol because again I wanted the T well in his system before they started poking him again. They didn’t come one time and I think the nurse planned it that way as when they would have come would have cut it close so she had him get more medicine and they came about an hour after that. I stayed with him during this time (I can’t even look at my own IVs let alone my baby but I stayed) I held his hand, gave him sweet-east and sang to him as the two specialists went to work. They used these neat red lights and turned out all the lights to see his veins. But, after at least 3 tries in his feet and other hand they couldn’t get it :( This was the worst, listening to my baby scream as they stuck him over and over trying to get a needle to stay. When that didn’t work, we tried to get out of an IV as we were leaving the next day but the DR insisted it be IV as the antibiotics don’t work the same. They were trying to figure out what to do and this young surgeon and young nurse walked in the room as I was holding JJ–that hold quickly turned to a clench as my thoughts were “surely these bozos aren’t going to try”. I’ve seen too much Grey’s antomy as I was afraid they were eager to try to accomplish something others couldn’t. How judgemental of me, they were only there to assess the situation and check on JJ and the nurse ended up being our nurse for the night and she was awesome! They decided to call a NICU nurse up as she’d have more experience working with little veins. Thankfully she got the IV in but it took her a few tries too so again I was up with Jeremiah trying to calm him the best I could. TERRIBLE moments together but I am glad I stayed and could scoop him up as soon as they gave the word. Poor baby slept pretty well that night, but I think he was just terrified to be awake. I actually slept a little better too and remained optimistic I was leaving in the morning.
Friday morning, mom and I ordered food and actually laughed together. That felt so good! I hadn’t laughed all week and mom made me laugh so hard I snickered. We also received the good news that we were definitely leaving–they came in to remove the packing and everything looked great. I stayed this time and watched, if you know me you know what an accomplishment this is! He did cry more this time so I rocked him and held him and rocked him until he settled again. Eventually he slept again and we started packing up. Mom did most of the work and took things to the car while I waited for discharge orders–I learned how to clean him and care for him and got his RX. We were ready to go home!! The transport team arrived and we were out of there…what a relief!
So I titled this post as my week of bonding as that is how I’d like to remember it. Sure, I wrote about most of the medical crap but I truly value this week and will cherish it as the week I got to focus on Jeremiah. I had no housework, laundry, cooking, or other family to worry about. I solely focused on Jeremiah James and all that he is–learned all of his little faces, sounds, habits, likes, dislikes. I know him so well now! And I couldn’t have focused on him so well if we were at home. I must thank my parents, sister, Beth and Josh for taking such good care of Jonathan–I did not have to worry about his care at all as I knew he was in great hands! So, this is the week I bonded with my son, not the week I spent in the hospital. I love my children so much and learned how strong that love is, how it can carry you through the worst of times and allow you to do things you didn’t know you were capable of doing.