Keeping the chest open for so long obviously put Krisha at a very high risk for infections so on day 12 they attempted to close the chest again and removed the clasp separating the ribs. Krisha seemed to take it well and during the day and night the BP and saturation levels were stable. Nurses asked for breast milk (although only 1ml per hour), but at least it was a step forward.
The next day Krisha’s face swelling looked less and for the first time we could see her properly. She looked beautiful. The numbers looked stable and the docs were happy with her progress. However in the weekly brain scans they found a patch in the brain and they suspected that there might have been some stoppage of oxygen flow to the brain post surgery which they would need to monitor. Having any adverse impact on her brain functions had always been one of our biggest fears so alarm bells were ringing. However for Krisha everything was one step at a time and at this stage we would not know what exactly the issue was. So we parked the thought aside thinking that we would cross the bridge when we came to it.
Two weeks since Krisha's surgery and we were shifting house! I know it sounds crazy in the middle of all this but we had issues with our landlord and really needed a bigger space with the kids. The whole day was busy although mom, Kaira and I moved to a friend’s house for the day and Deepak managed the move. We went to see Krisha later in the night. There had always been a possibility that they decided to do the chest closing on the day itself and we were dreading that a bit – however finally it did not happen and the gamble paid off.
On day 16 the centre bone was closed and though the saturation dropped to around 50s for a while, it stabilised back to 70s after the medication was increased. It was finally day 18 when the doctors finally closed the chest completely. 18 whole days!!! Being a bit fearful of tissue breakage and also the fact that the skin was extremely delicate, they had put separate sutures so that in case of infection they could repair selectively rahter than reopening completely. The concern now was that the wound healed and no infection developed. If that happened the recovery could take a long time – another hurdle added on to our list of prayers.
 |
| Wishing her Papa Happy Birthday ! |
Over the next week of monitoring though the stitches seemed to be healing rather well, touch wood. 2nd May was Deepak’s Birthday and day 24, she gave him the best gift ever, opened her eyes, and looked wide awake and straight at him! We were so excited! Now the focus was to monitor her stats, see how she coped and reduce the medicines. The focus shifted a bit to her feeding so that she would start putting on weight. She had not been weighed since birth and had not grown since then, in fact lost a little of her birth weight like babies do. We visited her everyday and talked to her, of her, met with the doctors for updates.
On day 27th Krisha did not look comfortable, her breathing was laboured and she was frothing a lot from the mouth. They had reduced her ventilation and although her sats were ok, she looked very uncomfortable. She had been on the CPAP (Continuous Positive Air Pressure Machine) which supports her breathing. It is a tube witha set of nasal prongs that go into the nose. It is held in place with a Velcro strap that is attached to a cap. Basically not the best device I found, at least for Krisha. Every time she moved her head, the prongs would come out and the machine would start a loud beep. When they went to adjust it she got very agitated and did not like it. It was so difficult to see her being put through again and again, but it was essential for her so that she could breathe better. However as DK pointed out, she seemed to be more agitated with it.
A couple of days ago in one of the scans they had found a bit of water in the lungs which is expected, but not good of course. So they had to do a small procedure to insert pipes to keep draining the water. Some more poking and prodding for my baby.
By day 34 Krisha was looking quite comfortable, the CPAP support had been reduced to minimal, her stitches seemed to be healing properly and lung water drainage also looked ok. Her medicines had been steadily reduced, then removed and her room had slowly started looking relaxed with most of the scary towers and wirings to her body being removed. When we went in to see her, they had removed the CPAP!! She looked so much more comfortable and breathing was relaxed, all the IVs were taken off so she was totally on her own. It was such a pleasant surprise and she looked like a normal sleeping child. I brushed her hair and we just admired her and couldn't stop smiling that this day had finally come. Besides this, the plan was to now shift her to the Neonatal ICU. This was all soooo great, one step closer to home!
The entire focus was now to increase her diet and make her grow and make up for lost time.
